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Posted in My alternative treatment on 30 May, 2013 - 8:57 pm

Hi Tan,
Firstly I would like to welcome you to the site, I am sorry that you have a return over the last couple of years of this horrible condition. From my perspective when people mention alternative therapies it always seems to trigger a pesermistic response, however if it has helped at all for you then that's fabulous! What type of drops were you given by the homeopath ? I'm sure there would be lots of interest from others if you could give us a little more info regarding the ingredience.

Thanks for your post and hope your pain free times last.

Regards Shelliconiconicon


Posted in on 03 Apr, 2012 - 12:52 pm

Thanks for your reply barry!

I know it probably seems like I'm being over dramatic and that's one of the reasons I've been not posting. I've been in contact with batch for the last few years, his work with O2 and " the Regime" have helped so many and I really am glad for those who have gained pain free times or even diminished attacks. He is a great man who has been a very valuable ally in our fight and we really appreciate him. Saying that unfortunately the O2 therapy no longer works, neither does the regime. Over the past two years a shift has occured with all meds, its almost like Cory's body just doesn't recognise any chemical alterations. The occipital nerve blocks, IV magnesium, Nsaids even narcotics just don't work at all. For a month during the first three amputations the Drs had Cory on a Ketamine Infusion and were very concerned as his dosage was the highest they had ever given and still no help.

I love Cory and our girls with all my heart and I'm sure loves what has given us the ability to get this far, and will give me the strenght to continue fighting. I know we are lucky to have each other and I appreciate it every day!

Im not at all suggesting that it is Ok to Suicide to anyone, I know there are options, its just when the Drs have no hope for your future and a 10 year old can see it would be kinder to give up their own father than leave him to suffer, it certainly makes you realise despite your best intentions that life and love are both a fight and by no means a fair one.

Regards Shell


Posted in on 02 Apr, 2012 - 11:14 pm

Hi Guys,

I know I haven't been around much of late and as a moderator feel I have let so many down. The truth of the matter is life has been very difficult of late! Cory continues to suffer daily with up to 6 attacks, we have tried every medication and treatment option other than the nerve implant which the drs do not feel would be beneficial, deep brain stimulation and busting which we are not in a position to do. The only meds that help are the imigran injections and at $120 a day I can not even provide this.This condition is killing Cory physically, every headache brings him closer to another loss of limb, heart attack or brain bleed. Both of us are now emotionally, physically and financially destroyed.

Our treating Drs and Neuro are aware of our situation but are at the end of their ability to help also, although they are apologetic as to not being able to help and empathetic as to pain and destruction of our lives and have no answers and offer little to no hope.

Our 10 year old daughter has told me that she feels that we (myself and the girls) are very selfish, expecting dad to suffer like this, that we should give him the right to suicide and support him in finally ending this misery. As a mother and a wife this devistates me but as a supporter I have to aggree that no one deserves to suffer like this. Its been 25 years of attacks now but with all the associated problems from the vaso constriction it is at the point of just to much to bear.

This damn beast is not only beating us its demolishing every aspect of our lives, if it wasn't for the girls I know Cory would have killed himself by now and honestly I just don't have any fight left in me either. I cant give up for my girls but I do wonder if this life they have infront of them would be better without the burden of their parents in it? They deserve so much more than I can provide, love just isn't enough.

Regards Shell

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Posted in Pulling out for a while on 05 Jan, 2012 - 10:20 pm

To our dearest Heather,

Have a wonderful time! You deserve it, lets hope this holiday is the start of a fresh and wonderful 2012 for you and your family.

Sending our best wishes and cyber hugs!

Regards Shelliconicon


Posted in new file names. on 10 Dec, 2011 - 12:10 pm

Hi Guys,

We have a problem with this, it seems that all our headings keep dissapearing!
It was only 3 months ago that I renamed all the missing topics, it took me a whole week. Im so dissapointed that this has happened again.
I will get working on it after the weekend, we should notify Roger to see if its a program error.

Regards Shelliconiconicon


Posted in Do your own research on 09 Dec, 2011 - 5:12 pm

Hi Les,

I realise that to follow all of my and others posts can be quite a task, I guess we should have a pinned topic suggesting to newbies to drop us a quick intro rather than having to switch back and forth between reading everyones profiles and diaries.

It seems that as Peter mentioned many sufferers of CH also have other conditions.

The other conditions we have been dealing with are Raynaurds Phenomenom causing iscemiea and multiple amputations, MRSA, RLS, A still undiagnosed systemic immune defficiancy, medication (and lots of them) side effects and ignorant uneducated doctors and a couple of others.
.
I have had to perform CPR on Cory twice in the last two years, found him unconcious and foaming at the mouth, bleeding from his eyes, ears, nose and mouth.Flipping around with what looks like seizures from the RLS and Pain. Hes been intubated, put in induced comas, given every type of medication the treating doctors can think of, suffered 7 amputations since september last year and thats only in the last two years without any support from his family. The previous 25 have also been a terrible rollercoaster ride of CH both as a chronic and an episodic with up to 8 attacks everyday and years at a time, we would both be happy if like some sufferers the clusters only lasted 6-10 weeks..

But after I write all of the above the one thing I must say is that Cory is the strongest, most genuine, kind hearted, compassionate person I have ever met, he is a wonderful husband and father and never complains. His thourght is that there is always someone worse off than him and he will not let CH be all he is or take over his life.

Although much of what I have learnt about CH and all these other issues I would probably have prefered to never need to know, I am glad of the support we offer each other and the support we receive from this forum.

Regards Shelliconiconicon


Posted in restles leg syndrome on 08 Dec, 2011 - 8:55 pm

Hi Guys,

This is an abstract from Sara's post:


Potential Link Between Cluster Headaches and Restless Legs Syndrome

June 28, 2011 | Author Dr Robbins




In a recent study by D’Onofrio et al. it was found that none of those participating in the study who had cluster headaches experienced Restless Legs Syndrome. Restless Legs Syndrome is one of the most common neurological conditions and movement disorders; it is characterized by unpleasant sensations inside the legs, mainly at times of rest such as bedtime, which result in an irresistible need to move the limbs in order to stop these sensations. Brain imaging studies have suggested that Restless Legs Syndrome may be generated by dopamine dysfunction and alterations to melatonin secretion locally within the central nervous system. It is because both cluster headaches and Restless Legs Syndrome are characterized by alterations in melatonin secretion and frequent nocturnal onset, that a possible pathogenetic and clinical connection between the two conditions was drawn. The study found a 0% prevalence rate of Restless Legs Syndrome in patients with cluster headaches, as opposed to a 12% prevalence rate in the patients in the control group who did not experience cluster headaches. The group conjectured that reduced nocturnal melatonin in cluster headache patients likely results in sustained dopaminergic activity which could be a protective factor against the development of Restless Legs Syndrome. It was concluded that further investigation of the role of melatonin in both cluster headaches and Restless Legs Syndrome is needed and could potentially produce interesting results.

This information seems to go against all of our information, not sure on the current statistics (about 27%) of sufferers share both CH and RLS. Interesting, I wonder where this study was done and if that has any relation to its results.

Regards Shell iconiconicon


Posted in restles leg syndrome on 08 Dec, 2011 - 8:48 pm

Hi Barry,

Cory also experiences this sensation, thanks for finally giving us its name!
With all the hundreds of doctors that have seen him over the years its something that they have all missed.

With the RLS as well occassionally I think hes trying to kick me out of the bed, this aspect only occurs just after he falls asleep.

Maybe its time for all of to get together at a conference!

Regards Shell


Posted in Do your own research on 08 Dec, 2011 - 8:30 pm

Hi Les,

Im putting this is on the forum rather than in a pm as I think it may be beneficial to many.
There are a few things that we do know in regards to Ch as in the cause being excess grey cell matter in the hypothalamus and chemical balance of course can have a dramatic effect on this such as hormones, melatonin and seratonin.
Some of the other things we know that can trigger an attack (not a cluster) are dehydration, alcohol, smoking, strong odours, some foods (such as vinegars and acids), lack of sleep and auto immune deficiencies.

It would be helpful for our members to respond to you if you could please explain your situation eg. how long have you suffered? Have you been medically diagnosed? What other treatments (preventatives and abortives) you have tried other than to detox and the water treatment?

There is unfortunately alot of people who have suffered for many years with hundreds of years of experience combined on how to try and overcome or atleast live with this condition and we all know to well the suffering.

As you mentioned that you read between the lines, so do many of us here and sometimes we dont always come across the way we mean to, so if you could please fill in some of the blanks for us, so we can understand thing clearer then I think it would really help.

Regards Shellicon


Posted in To the Moderator on 08 Dec, 2011 - 6:02 pm

To everyone on the forum,

As one of the moderators I would like to say that when I was asked to become a moderator, I felt extremely proud that my input and views were appreciated, not only did I consider very strongly if I should accept, but also if I had the capability of fullfiling this role to the best of my ability. I consider all the moderators to have a very good understanding of this condition and respond with conviction of heart, empathy and to the best of their abilities.

As sufferers or supporters of Cluster headache sufferers I feel it is completely unfair to acuse anyone here of being close minded!
There are a couple of things that I feel need to be said, I may be flamed for this howevericon it is just my opinion.

Many times lately I have opened the forum and started to read recent posts, many with information or links that seem to be slightly irrelevant, but as I am a researcher and also understand the complete desperation to find help or a cure, I read through all the information and then make a decision to its validity. Some of which I have found to be completely useless.

Other posts I have found to be offensive at times and have made me want to punch the computer screen, so I have left the forum not wanting to comment incase I come across as offensive! Perhaps I should have been the moderator who blocked some of these threads.

I think it is very important to remember that some of the members who come here are desperately seeking help and without intention some of us do sometimes come across a little flat or offensive. For many of the members to open their hearts and minds its also very important that posts are honest. For some who visit that have not had a prorper medical diagnosis or are unclear about this and are talking about useage of drugs that are not on the CH radar and seem to be sympathy driven, we as the forum members must asess if these people are Trolls.

I do not consider myself to be close minded, I would hope that my compassion and empathy for others transpires through my posts. There are so many people out there who have and still will benefit from the information, knowledge and support this site provides, my hope is that this information does not become buried under futile rubbish.

Regards Shelliconiconicon


Posted in A Cure for Cluster headaches!!! on 08 Dec, 2011 - 5:01 pm

Hi Dan,

I am so sorry this bust hasn't been 100% successful! Im sure in time you will overcome your clusters with this method, perhaps your dosage was a little to low this time. There seems to be a common problem with other sufferers that have busted to obtain the right dose, as its so hard with shrooms to measure, some have to bust up to 5 times to get permanent results.

Good luck, you are our pioneer at this time with busting on this board and Cory hopes to join you very soon. Im sure one day in the not to distant future you will be able to say you have found your cure!

Best of luck and sending you our best wishes.

Regards Shelliconiconicon


Posted in HELP Do I suffer from cluster headaches, severe migraines or menstrual migraines on 30 Oct, 2011 - 3:47 pm

Hi Jill,
So glad we could be of some help, Where is Yancep? One of our members may be able to suggest a good Dr or Nuero near you. Sending you cyber hugs and hopeing you find some releif soon. If you ever need to chat or question we are always here, sometimes takes a little while but you are not alone anymore.

Regards Shelliconiconicon


Posted in A Cure for Cluster headaches!!! on 28 Oct, 2011 - 12:11 pm

Hi Kim,
I'm glad that you are looking into to this, the dose needed to bust is much smaller than the dose you would need to trip, as long as you are some where safe with a trusted friend, I dont think you will have to much to worry about. I could give you instructions on how to go about this but the people over at www.clusterbusters.com are much more knowledgeable than I am with this. The dose needed is only approx 2 seeds, they must be fresh and prepared properly. The most important thing with this is that you are medication free as most medications act as blockers and stop it from working. You may have to try a couple of times, but with the success harvard is having with its trial we would all be stupid to not recognise the benefits. Here is a link with some relevent info:

http://www.clusterbusters.com/lsa.htm

We will be busting as soon as possible, please keep us all informed as to how you go with it. Wishing you luck and pain free times soon.

Regards Shelliconiconicon


Posted in HELP Do I suffer from cluster headaches, severe migraines or menstrual migraines on 27 Oct, 2011 - 8:51 pm

Hi Jakkss and jaca,

Welcome to our little community! I am so sorry you are both suffering, please remember Im not a doctor but from researching CH exhaustingly I would sugest that your descriptions do not seem to follow the CH diagnosis criteria. Please check out the following link, it may help a little: http://www.ojrd.com/content/3/1/20

The importance of history taking in headache medicine cannot be overemphasized and finding a dr that is of the same importance. What you both describe sounds a little more like Trigeminal neuralgia. TN and CH both involve paroxysms of unilateral and severe pain. TN is more frequent in women in their fifties or older. Attacks are centered on maxillary and/or mandibular area, they are more frequent, briefer, electric-like and are triggered by touching specific zones of the face or buccal cavity. Eating, laughing, talking, shaving or brushing the teeth may all trigger the shocks. Patients may loose weight because they avoid eating. There is no clustering in periods, and mostly the pain goes on until the treatment starts. TN responds very well to carbamazepine. Both diseases may occur in the same patient as cluster-tic (tic standing for tic douloureux, a French term).

I found the following information at :
http://www.americanheadachesociety.org/assets/Grosberg.pdf

ABSTRACT: The trigeminal autonomic cephalalgias (TACs) include cluster headache, the paroxysmal hemicranias and short-lasting neuralgiform headache with conjunctival injection and tearing (SUNCT). Each of these disorders occurs in an episodic and chronic form. All of them have in common the occurrence of unilateral pain in the distribution of the first division of the trigeminal nerve and ipsilateral autonomic features.
short-lasting neuralgiform headache with conjunctival injection and tearing (SUNCT) syndrome.

The differences between cluster headache and the other trigeminal autonomic cephalalgias are the duration and frequency of daily attacks and their responses to particular treatments. Cluster headache typically lasts from 15 to 180 minutes and occurs one to eight times daily; the paroxysmal hemicranias are brief (2 to 45 minutes), but occur more frequently (one to 40 attacks daily). Cluster headache occurs more frequently in men, while episodic paroxysmal hemicrania usually affects women.
The other main factor concerned with differences between the two are the pain levels, the paroxysmal hemicranias are considered moderate to severe pain where as cluster headache's are considered severe to excrutiating / intolerable.

Hope this is a little helpful, wishing you both pain free times soon.

Regards Shellicon


Posted in Time to "fess" up on 12 Oct, 2011 - 1:57 pm

Hi Heather,

Im so sorry you are suffering again. Good luck with thr neuro, wishing you pain free times soon!

Sending our love!

Regards Shelliconicon


Posted in Is it time out yet? on 12 Oct, 2011 - 1:54 pm

Hi Neil,
Glad you are finally finding some releif! Just wanted to mention that Imigran nasal sprays are now on the PBS. We get 1 box (2 sprays) with 5 repeats on the PBS, it used to only be available as 1 script every three months but that has now changed. So for the cost of $5.60 they have been much more affordable.

We also use the Imigran injections, the cost of a injector pack is $138 ( with injector pen and two ampules of imigran) and the cost of a refill (2 ampulues) is $124 from chemict warehouse which is substancially cheaper now than it has been in the past.

The bonus with the injections is that instead of only being able to treat 2 attacks per day with the nasal sprays you can actually treat 4- 6 attacks if you split them.
The injections are 6mg each in 0.5ml and you get 2 per box. The recommended dosage is 2 injections per day which is 12mg ( I saw somewhere on this site that its 2 per week but that info is incorrect). The best was to get around this is by splitting the injections, some people can split them in to two others split them into three and get the same results as if using a full injection. As each person is different the amount required is also different, however the amounts do not change based on the severity of the headache eg. If you split the 6mg inj into 3 then it will have the same effect for a kip 5 headache as it would for a kip 10 headache and the time that it takes to work will also be the same. This info is from experience only!

Hope this is helpful!

Regards Shelliconiconicon


Posted in Memory loss on 12 Oct, 2011 - 1:42 pm

Hi Rick,
Welcome, Im sorry I havent had a chance to reply to you sooner, I have been through all of you previous posts and caught up a little with where your at, Im sorry you are suffering.
The side effects are nasty with many of the meds, unfortunately its a matter of choosing whats the least worst case situation for many cluster sufferers.

Maybe if you print this article from Dr Goadsby and take it to your doctor it may help.

http://www.ouchuk.org/html/news/Precriber.pdf

A relatively new theory revolves around maintaining your arterial PH at a level which makes you less susceptible to attacks. It goes as follows:
Magnesium, Zinc, Calcium Citrate and Vitamin D, washed down with fresh squeezed lemonade, up to 4X daily.

Some people have had great results with the Melatonin and can manage a good 8 hrs sleep most nights in a cycle. It is recommended to start with 10mg 30 minutes before bed time. Some go as high as 15 mg to get through the night. Helps to avoid the wake up calls. Give it 7-10 days to see if it helps you.

I hope you Dr can help and you find some pain free times soon. I look forward to your input into the forum, information is power!

Regards Shelliconiconicon


Posted in A Cure for Cluster headaches!!! on 12 Oct, 2011 - 1:23 pm

Dan,
I am so happy for you, welcome back to your life!
With all the research I have done over the years I know this is our answer, the golden key so to speak. People seem to have some reservations about busting, whether it be that they are ill informed and think that its illegal to actually posses, or if its "just another hippy treatment" the research is out there and so is the proof that this works.
The other aspect of having to go mushy hunting is also not necessary as the seeds can be legally purchased from ebay, 50 Hawiian baby woodrose seeds for $20 they contain LSA and are more potent than mushys, so for those who have tried the mushys there is an even better alternative. As you only require 2-4 of the seeds to bust that has to be the cheapest and most effective treatment any of us could use!

Maybe the main reason people dismiss this so quickly is due to the fact that they need to be completely free of all other meds, I know this is very hard to achieve for some and has been the only reason we have not busted so far, but this has to be a better option than surgery (deep brain stimulation). We will be busting as soon as possible and our nuero is fully supportive. Hopefully this time next year we will have our lives back just like you!

Thankyou so much for informing others about this, the info is imperative for others to get their lives back too!

Wish you all the best always!
Regards Shelliconiconicon


Posted in Nerve stimulation or Deep brain stimulation on 05 Oct, 2011 - 12:06 am

Hey Guys,

Check out these articles and tell us your opinions or experiences:

http://www.cbc.ca/news/health/story/2007/03/08/cluster-headaches.ht
ml


http://www.neurologyreviews.com/apr05/DBSClusterHeadache.html

Regards Shelliconiconicon


Posted in just how far can you go on 04 Oct, 2011 - 11:58 pm

Hi Alex,

Just sending you cyber hugs and hoping all goes well for you!

Hi Ben,

This concerns me quote "it is just that the IHS and my specialist are so damn specific about exactly what type of CH they are attempting to treat and how I got it.".
Do they mean how you got an attack or how you got CH, if the latter what do they know that the leading researchers dont???

I found this the other day thourght you might find it interesting being that the aurthor is a DR:

http://www.clusterbusters.com/buchanan.htm

Regards Shell


Posted in Is it time out yet? on 04 Oct, 2011 - 11:36 pm

Hi Neil,

The 20mg Nasal Sprays are better for CH, the rebound headaches your dr mentioned do not occur with each usage, rebound headaches tend to occur towards the end of a cycle and are much less of an issue than what your Dr has suggested. Its great that he is willing to learn and that you have such a good relationship, unfortunately educating our drs seems to come with the territory but it seems you are already half way there.
Doctors can be a little precarious when it comes to medications so I have found it very
useful to take info with us when we need a change.

Maybe if you print this article from Dr Goadsby and take it to your doctor it may help.

http://www.ouchuk.org/html/news/Precriber.pdf

I noticed you are on the oxy's, even at a low dosage it can become a slippery slope so please be careful.

Regards Shell iconiconicon


Posted in Imigran MKII injector reliability issues? on 04 Oct, 2011 - 11:23 pm

HI Ben,

Just thourght I had better add this info for those who dont have alot of experience with imigran injections: The injections are 6mg each in 0.5ml and you get 2 per box. The recommended dosage is 2 injections per day which is 12mg ( I saw somewhere on this site that its 2 per week but that info is incorrect). The best was to get around this is by splitting the injections, some people can split them in to two others split them into three and get the same results as if using a full injection. As each person is different the amount required is also different, however the amounts do not change based on the severity of the headache eg. If you split the 6mg inj into 3 then it will have the same effect for a kip 5 headache as it would for a kip 10 headache and the time that it takes to work will also be the same. This info is from experience only!

As the injections only come in the one dosage of 6 mg the way that we split them is by using the 1ml single use insulin needles. The way I do this is after opening the injections out of the box and taking the sticker off the top, I open the flap as if I'm going to screw the injector pen on, I then get a butter knife and place it under the glass lip of ampule/inj, very carefully I pull upwards to get the ampule/inj out of the blue plastic surround. I then get the insulin needles and pull out the plunger part, I place the imigran amp needle into the top of the insulin needle syringe and with the plunger push down on the black seal on the inside of the imigran carefully until I have the right amount of Imigran in the insulin syringe (I only split them into 2 so its .25ml which is a 3mg dose). I remove the imigran and tilt the insulin syringe to the side slightly so I can reinsert the plunger, you must be very careful not to push it in to quickly or the imigran will squirt out the needle. When the plunger is in just far enough to seal, I turn it upside down and flick it with my finger so all the imigran goes to the bottom and the air to the top, allowing me to then push the plunger about half way up the syringe. Then with each headache we use a subcutaneous inj ( into the fat layer just under the skin, the same as you would with the injector pen). By doing this we get 4 injections out of a kit rather than 2. If you split them into 3 then you would get 6 injections out of a kit. Which would mean you could treat all six headaches and still only have had the 12mg. It is unfortunate that they don't make the imigran in ampules (like morphine) in Australia or the injections in 2mg or 3mg doses. It makes sense to me that if you can use a smaller dose and get the same result then not only is it better for your health but also that you can treat more headaches without exceeding the recommended 12 mg a day dose. And lets not forget its heaps cheaper!

I am happy to share this info and think its important for people to be aware of, there is a study happening in America at the moment as to the effectiveness of 4 mg doses so am awaiting results, hoping that they come to the same results that we have expeirenced.

Cory suffered from "wasp bite" reactions for a short time he was told by dr that it was due to the injector pen hitting and releasing into the muscle, his advice is to aim for the gap between the muscles on the outer bicept.

We have been doing this with the imigran for many years now and it has worked very well for us, and definitly gets rid of any issues of malfunctioning auto injectors, please remember I'm not a doctor. If you have any queries just drop me a line. Hope this is helpful.

Also wondering if you have considered busting, I can give you info on where to find the seeds.

Regards Shell iconiconicon


Posted in Is it time out yet? on 04 Oct, 2011 - 6:08 pm

Hi Neil,

Im sorry you are suffering, this is a nasty condition and will bring the strongest person to their knees. I noticed on one of your other posts that you will be seeing a respitory specialist soon, please be aware that they are not trained for clusters, their opinions will probably be that you should only be using Oxygen at 8-12 lpm (which is useless for CH) and that only very sick people require higher flow rates, you will not fit into this category or their mindset. They may be able to help you with an explanation of why your O2 levels drop whilst sleeping but I would assume that it will be something along the lines of: whilst people lay down to sleep their ability to fill their lungs with each breath is reduced due to the pressure put on their lungs from other organs such as the stomach and also the excess tissue in the back of the throat and nose blocks acess of O2 to the lungs. This is even more prominant for people who are carrying any excess weight.

One of the most knowledgable people in the world for Oxygen usage for CH is Peter Batchellor aka BATCH, his recommendation of 25lpm plus is giving many sufferers releif, this is a link to one of the messages he has left on this forum:

http://www.clusterheadaches.com.au/forum_posts.php?id=49

Your doctor paying for your oxygen is awesome, I have never heard of this happening before. Your doc is incorrect in telling you that you can not use imigran, his concern for the combination of it and your antidepressant is due to the very small risk of seratonin syndrome I would pressume. Dr Christina Sun-Edalstein who is our Nuero in Melbourne has not long moved to Australia from America, she wrote the FDA guidlines for seratonin syndrome in America and is also the only true headache specialist we have in this country permanently at this time, informed me last october that the the risk of seratonin syndrome is nil as to the combination of Imigran and antidepressants as apposed to the other contradictions with the "triptons" and that the condition of CH needs to be addressed first and foremost due to the severity of the condition.

Definitly ask your nuero as I think his opinion will differ from your GP, the imigran can be used as an abortive in conjunction with other abortives but doesnt need to be used for every attack, perhaps the usage of a high dose of prednisolone could be used whilst a preventative like verapermil, garbapentin or topomax kicks in. In the meantime increasing your magnesium levels may help or even ask your dr about melatonin at 10mg to try and abort those night time attacks.

Your nuero should be able to help you with a two pronged approah, preventataive and abortive treatments. As far as the hope of remission coming soon, all sufferers who are in a cycle want the same thing and I wish that you and everyone who suffers from CH has pain free times very soon.

Please remember Im not a dr, just an informed carer.

Regards Shell iconiconicon


Posted in Does anyone bleed from their affected eye?? on 04 Oct, 2011 - 5:23 pm

Hey Guys,

I am concerned about Cory as always as he is being hit hard again this week, 6 attacks a day all at kip 10, with some attacks he bleeds from his left eye, this is not by any means a new thing. Over the years he has bled from his eyes,ears nose and mouth but it seems to be getting worse over the last few years!

The meds no longer work, IV Magnesium and occipital nerve block has failed, the only option we have left is surgery or bust, so when he does go into remission (which could be 12-18 months) we are going to try busting, this has to be a better option than letting some well meaning dr cut into his head.

Does anyone else have this issue?? Please let me know if this has happened with you!

Regards Shell iconiconicon


Posted in Pain Tracker scale. on 02 Oct, 2011 - 11:13 pm

Hey guys,

Recently I saw that some members were dicussing how to rate their pain and that the kip scale didnt quite cover their pain. I found this fantastic alternative at clusterbusters, please check it out.

http://www.clusterbusters.com/tracker.htm

Hope this is helpful to some of you!

Regards Shell


Posted in A Cure for Cluster headaches!!! on 02 Oct, 2011 - 10:50 pm

Hey guys,
I know this topic title is going to cause doubt in many but please if you only do one thing today READ THIS ARTICLE at:

http://www.miqel.com/clusterheadaches/harvard_headache_study.html[/
L]


This is finally what weve all been waiting for! I'm so excited about this.
Please give us your thourghts...

Regards Shelliconiconicon


Posted in Posting Photo's on 02 Oct, 2011 - 7:17 pm

Awesome info Barry! Thanks from all of us that are computer illiterate!


Posted in Shrooms? on 01 Oct, 2011 - 6:20 pm

Dan this is FANTASTIC news!iconiconiconicon

Im so glad you have given this a go, please keep us all posted on your progress.
I spoke to our nuero about this last year, her response was although she couldnt legally authorise our trying such a treatment, as the studies that are being done have not been finalised and released to the public yet and the mechanisms are still unknown as to how it does actually stop clusters. That we and any nuero would be mad to not recognise that there is a potential cure if not just a treatment to abort cycles with these methods of "busting".

Harvard have been doing studies into physclobin, LSA and LSD from plants with very promising results. Bob Wold was a Cluster Headache sufferer and is an avid supporter of busting, he is trying to push this as a main stream treatment, there is alot of info on the work he is doing on the internet and for anyone who has time, its definitly worth looking into. Im off to take my own advice and check this out more thoroughly!

Regards Shelliconiconicon


Posted in Just wanted to say HI and apologise for my being MIA! on 30 Sep, 2011 - 5:49 pm

Thankyou Barry!

I know it would be helpful to forum members for me to explain all that has happened with Cory in regard to his progression from episodic to chronic, medication interactions and symptoms which have led to his amputations. I have been thinking about how would be the best way to go about this and have pretty much documented alot of it in photos, which leeds me to the following questions:

Would it be appropriate to put these photos on the site?

Secondly Im not all that computer literate so:

How do I manage to do this?

Looking forward to your responses, wishing you all pain free times!

Regards Shelliconiconicon


Posted in Shrooms? on 30 Sep, 2011 - 5:38 pm

Hi Alan,

Busting refers to ending the cluster headache cycle, some people have not had a cycle for over ten years since they first busted! Harvard Medical have been running studies with some fantastic results and the folks over at cluster in conjunction with leading neurologists are applying for FDA approval in America so these treatments can be legalized for use with cluster headaches. There are some legality issues but for us here in Aus it is legal to buy, sell and possess just not consume, so to actually get into any trouble you would have to be caught ingesting the treatments. Also there is very little risk of the treatments showing up on Blood tests. There is heaps of info on it at clusterbuster.com, the main ways this is achieved is through Psyclobin= mushrooms, LSD and LSA from Seeds such as Hawaiian Baby Woodrose Seeds and Rivera Corymbosa Seeds. They have been used for centuries by Sharmans in tribal rituals and for medical treatments.

Here's a video talk by one of our fellow CH'ers on the subject:

http://vimeo.com/10918637

or for alternative therapies check out:

www.clusterbusters.com

Hope this has been helpful.

Regards Shelliconiconicon


Posted in Untitled on 30 Sep, 2011 - 5:33 pm

Hey Dave,

Just wanted to mention that the Imigran Nasal sprays should be able to reduce your attacks to approx 20 minutes and the Injections work within about 5 mins if the work for you (they work for most people) same as Oxygen, once mastered it can abort attacks in around 5 mins.

Hope you have pain free days soon.
Regards Shellicon


Posted in oxygen availability on 30 Sep, 2011 - 3:43 am

Hi Neil,

I had listed this oygen info in another thread but it is appropriate here also so here goes:
Some suggestions to help are:
Use the O2 as soon as you feel it coming on, Speed is the name of the game. The sooner you get on the O2, the better the success rate. Stay on it for 15 to 20 minutes. If it has not killed the hit, stop using it. Try to get through 10 minutes without the O2, and then hit it again. If the O2 does not work the first time, the second time is almost Kills the attack.

Don't run out, always know how long your oxygen supply will last and how long it will take to get a resupply. At 12 lpm an E tank will only last 44 minutes. An H tank will last 8.3 hours. Here is a calculator to determine how long your oxygen supply will last:
http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm

Once you have the O2, make sure you have the right accessories for proper delivery. Most can be bought off ebay relatively cheeply compared to hire costs. Don't count on anybody else to provide the Right Stuff.

If you can't get a re-breathing mask you can use the nose prongs, Do not put it in your nose. Put it in your mouth, close your lips around it, and inhale. Open your mouth to exhale, and then close your lips, again, around it to inhale. Breath only through your mouth. Do not inhale any “room air” only the O2.

If you can't get a moisture bubbling bottle make one By using an empty clean jar, with a tight fitting lid, drill two small holes in the lid, the size of the O2 air line. Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar. Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid. Seal around both hoses with a silicon type sealant. Put up to 5cm of distilled water (can be bought from chemist) into the jar. No more than ¼ full or when then O2 is on the water will come up the tube to the mask. Some people find putting ice into the moisturizer helps the O2 work quicker! If you do this only use distilled water to make the ice cubes.

If you are using a re-breather mask, hold it firmly to your face with the palm of your hand. When you inhale, place your index finger and thumb over and the holes on the side of the mask (the ones with the rubber valve over them), this is to make sure the valve seals fully over the nose and mouth. When you exhale, just lift the finger and thumb, keeping the mask to your face by the palm of your hand, let the air out of those holes. Alternatively you can lift the mask and exhale directly into the air but this cuts down on the purity of O2.

Leave the O2 on for 5 minutes AFTER the last of the pain is gone even if you have aborted an attack in 10 minutes or less just to be sure, if you take it off to soon, the attack could restart.

Some for whom oxygen totally failed them at 15 LPM, found success at 25 LPM. It really has become a life saver for many, at 25LPM most attacks can be aborted within 3-7 minutes.

As with most things each person is different so what may work in one cluster may not work for the next, so if it doesn't work keep persevering, its trial and error, but you will figure it out eventually and O2 will become a very effective abortive for you!

Please remember I'm not a Doctor or a Respiratory expert, this is just from experience and educating myself to get the best results from our oxygen.

Good luck! Keep trying!
Regards Shelliconiconicon


Posted in just how far can you go on 30 Sep, 2011 - 3:32 am

Hi Alex,

That's Awesome news, having a stock of Melatonin at your desposal, please remember to start at a dosage of 2 or 4 mg and increase up to 10mg over a couple of days. As with any medication that are designed to change chemicals within the hypothalamus its always wise to increase slowly to avoid side effects. Give it 7-10 days to see if it helps you. It can be bought at health food stores but this is not the correct product (active ingredients differ), you can get a prescription from your doc if interested in continuing with it.
melatonin pros...cheap, no side effects, stops night time attacks for many,
cons some people report waking up grogggy.....
So hope you can get some rest tonight!

Regards Shelliconiconicon


Posted in Just wanted to say HI and apologise for my being MIA! on 30 Sep, 2011 - 3:23 am

Thanks for you warm welcome home!
It really does mean alot to me that you guys are here, my world would be a much darker place without you all!
Sending Cyber hugs to you all.

Regards Shelliconiconicon


Posted in Hello everybody on 30 Sep, 2011 - 3:19 am

Welcome Alan,

Welcome to the nut house! I'm sure that's how so many of us feel when no one can comprehend whats going on with Ch, bonus is everyone here knows exactly where your coming from. One of the major similarities I get from alot of sufferers is that as soon as you get to know your beast it decides to do a back flip and change patterns, I guess the only way to stay one step in front is to have a couple of options available for treatments.

Are you using Pure oxygen, at a high flow rate of at LEAST 15 LPM, using a Non Re Breather Mask, started at the first sign of an attack. Some for whom oxygen totally failed them at 15 LPM, found success at 25 LPM. It really has become a life saver for many, at 25LPM most attacks can be aborted within 3-7 minutes.

A relatively new theory revolves around maintaining your arterial PH at a level which makes you less susceptible to attacks. It goes as follows:
Magnesium, Zinc, Calcium Citrate and Vitamin D, washed down with fresh squeezed lemonade, up to 4X daily. Cory did 2-3X a day this last cycle and it had a substantial benefit in number and intensity of his hits. It's cheap, no real side effects to sweat, may be worth a shot for many others who are stuggling.

You should talk to your doc about a 2 pronged attack on these attacks. A good prevent and a good abortive. Verapamil and Lithium are popular prevents.( A med you take daily, while in cycle, to lessen the number and intensity of your attacks). Prednisone, a steroid, is often used as a transitional therapy whilst the preventatives kick in.

Energy drinks such as Red Bull with the combination of caffine and taurine chugged at the first sign of an attack many can abort a full attack or at least reduce the intensity for you, another great emergency abort.

Hope this has been helpful.
Regards Shell iconiconicon


Posted in Dont get ripped off on 30 Sep, 2011 - 3:07 am

Hey Guys,
Thanks for the heads up Barry! I guess its inevitable in this world where people are so consumed in their eveyday lives that the predators will prey and thats a sad truth, however by sharing this type of info and warning others you have again shown that there are still those caring and knid individuals out there in the world! Thanks again Barry!
Regards Shell iconiconicon


Posted in just how far can you go on 30 Sep, 2011 - 2:59 am

Hi Alex,
Welcome to the nut house! Seems you certainly have a lot to deal with and unfortunately know all to well the pain suffered from Clusters. I know you are well informed with the medication side of things however, Some options as far as meds are concerned that Cory has found some help from are garbapentin at 3600mg per day, 25mg IV Magnesium and also melatonin before bedtime.

Some people have had great results with the Melatonin and can manage a good 8 hrs sleep most nights in a cycle. It is recommended to start with 10mg 30 minutes before bed time. Some go as high as 15 mg to get through the night. Helps to avoid the wake up calls. Give it 7-10 days to see if it helps you.

He has also recently undergone an occipital nerve block which after 5 days seems to have finally worked and reduced his attacks from 36 attacks in 4 days down to zero.
I hope you Dr can help and you find some pain free times soon. I look forward to your input into the forum, information is power!

Regards Shell icon

Hi Ben,
Nitrolglycerin will bring on attacks 100% of the time for Cory, one of the trials he underwent into CH and the efficiancy of Imigran injections used only Nitrolglycerin as the trigger. You can get nitrolglicerin in a spray form from your pharmacy and use it off label by spraying it in your mouth, the correct usage for the medication is to open up your capillaries for blood flow for those with vascular issues. Lemon juice at high concentration and also vinegar (balsalmic) can also be used to trigger attacks. Im not used to giving info on how to start an attack so it seems a little weird to me to giving you this info, but hey if it helps awesome!

Regards Shelliconiconicon


Posted in Untitled on 30 Sep, 2011 - 2:30 am

Hi Dave,
Welcome to the site! So sorry I haven't replied to you sooner, you have been given some great advice! Imigran be a life saver for most and at times we have been told by a neuro that to up to four sprays a day is fine, but please be aware there are some very seroius side effects to over use of any vaso constrictive medication these can include heart problems and loss of circulation causing limb loss. The most beneficial tool that you can have at this time is Oxygen, It takes some effort to manage the use of it correctly but at 25 litres per minute flow rate through a non rebreather mask it should abort all of your attacks within 5 or so minutes. The problem most people have when they say it hasn't been successful for them is incorrect usage.

Also imigran subcutaneous injections may be more beneficial to you than the sprays as you can split them into 2 or 3mg doses and use them more frequently at lower dosages thus treat more attacks without using higher doses. Please also look into increasing your magnesium intake either orally or through IV, also taking Melatonin at appxox 10 mg about an hour before bed can help substancially in reducing and sometimes stopping the night time attacks altogether, your doc should be able to help with this.

Some CH'ers have been reporting that "busting" has shut down entire cycles for them cold. It's an approach that is making quite a splash - here's a video talk by one of our fellow CH'ers on the subject:

http://vimeo.com/10918637

The people here, their information, experience and support are truly awesome! May your journey through life be a little easier now that you have found this wonder. Please read all you can, information is power. Good luck with it all and if you ever need to chat just drop us a line. Hope this is helpful!
Im not a Dr so please make sure any new meds you try have been authorised by your Dr, I post just from experience.

Regards Shell iconiconicon


Posted in Untitled on 28 Sep, 2011 - 7:34 pm

Well said Chris! I couldn't agree more.


Posted in Just wanted to say HI and apologise for my being MIA! on 28 Sep, 2011 - 7:29 pm

Hey Guys,

I just wanted to hello to you all, welcome those who have joined since I have been away and send my comiserations to all of you who are suffering!

I owe you all an apology for dissapearing for so long, so I am very sorry to have let you all down. The reason I have been away is due to my having been suffering from depression, I know thats a poor excuse but after all that has happened in our lives over the last few years, I just couldn't cope. Instead of reaching out for help as I tell so many others to, I just shut down and stopped communicating with everyone, friends and family included.

A little update on whats been happening over the last seven months in our household, my beautiful daughters have been as usual fantastic, progressing through their childhood as happy children just like they should. Cory who is no longer just my fiancee but now my husband has had a rough time, he has now undergone 7 amputations on his right hand in the last 12 months, suffered from MRSA and Osteo-myalitis,DVT and a few other nasty complications from the surgeries and of course has been in a bad cluster.

Last Wednesday I took him to Melbourne to see Dr Christina Sun-Edalstein who changed all his meds, gave him IV Magnesium and an occipital nerve block all in her offive at St Vincents hospital, She has also booked him in with a collegue of her to discuss wheather he would be a good candidate for the deep brain stimulation surgery. Not sure exactly what was the cause but the two following days resulted in 7 attacks overnight each then the next day 9 attacks and finally sat 10 attacks in 24 hours all at kip 10, definitly the worst period has suffered in all his years as a sufferer! However come Sunday and Monday he only had one headache each day and no headaches at all yesterday and today so far. I'm so glad he has finaaly got some reprieve as I don't think he could have taken much more.

It was pointed out to me by Chris (breaking point) after his asking why I hadn't been on the forums lately and my replying how I had been having trouble coping over the last few months, that of all people Cluster sufferers and their supporters would understand more than anyone. After processing this I realised that he was right. I feel that it was so very selfish of me to have put my issues above my responsibility to others and also feel very guilty that I have let so many down when what you guys go through is so much worse than my little depression issues. So again I am very sorry! icon

I will endeavor in future to remember the big picture and if it seems I'm being selfish please don't hesitate to give me a cyber foot in the butt. And thank you Chris!

Wishing you all pain free times and sending cyber hugs to all.

Regards Shell iconiconicon


Posted in Topic Titles Changes! on 28 Sep, 2011 - 6:38 pm

Hey Guys,
As some of you may have noticed I have been lurking around the forum for the last few days. It was brought to my attention that all the Topic headings previous to Feburary this year had some how suffered a glitch and dissapeared, so I have spent the last few days re-doing the headings hoping that I'm getting them right.

If I have given your post an inaccurate title or you can suggest a more appropriate heading please let me know via this thread with the forum category, date started and aurthor and I will attempt to rectify the situation asap.

Thanks for your time and patience in regard to this matter, as I'm sure you will all appreciate, if the topics are correctly labelled then the site is much easier to navigate and people will be able to find information that applies to them alot easier than having go from topic to topic.

Regards Shell iconiconiconicon


Posted in Untitled on 02 Feb, 2011 - 9:39 pm

Hi Ben,

Welcome! Awesome post! Please be careful of Vaso constrictors, up untill September last year I was also saying what a life saver it has been for us. Three lots of amputations later I'm having a re think as to natural alternatives. My partner has had a very similar experience as you have suffered, I am empathetic to you and also available if you do ever need to whine, as you are more than entitle to it. The frustration of suffering through this is enough to break anyone and that's without the added stresses and pain you feel daily. Keep up the great attitude and again welcome home!

Regards Shelliconiconicon


Posted in Suffering now on 02 Feb, 2011 - 9:09 pm

Hi Guys,
As per usual Heather is right on the mark with the oxygen but please check out the other threads as correct usage is imperative! The use of melatonin and magnesium injections would also be greatly beneficial depending on your ability to access a dr with knowledge of these therapy's. The only other thing I could suggest if you are not taking any preventative medications is the clusterbuster alternative with Hawiian Baby Woodrose seeds or Rivera Corymbosa seeds which if you PM me I can give you the details of a sharmen who can supply you. It is not illegal to purchase, post, possess only ingest and unless you did so in a police station after telling them it is illegal it would be unlikely anyone would have an issue with it. From what I have researched this method has been very successful for thousands of sufferers. when I spoke to our headache specialist she said that she could not recommend it legally, however dr's would be stupid not to recognize that the benefits were there even if until the research and studies have been released by Harvard.
Hope this may be helpful to someone!

Regards Shelliconiconicon


Posted in Untitled on 02 Feb, 2011 - 7:20 pm

Hi Nomad,

Sorry to drop in so late with my two pents however you are onto something with the hyper ventalating, I have read many sources that do recommend it. Oxygen is safe at high doses of 60 litres a minute for 2 hours at a time according to the US Air force who train their pilots for years at these rates, so an extra 20 minutes or so would be highly unlikely to have any adverse effects. Please remember the problem that most people have with O2 is not mastering the correct technique and then giving up, so please keep trying.

Goodluck to you!

Regards Shelliconiconicon


Posted in Untitled on 02 Feb, 2011 - 7:10 pm

Hi, I was just thinking about this and realized that some of the most important new medications for sufferers available get very little attention also, these are garbapentin which has been used as a preventative successfully in the US for many years and melatonin. If you suffer from night time attacks at the right dosage melatonin can all but break a cycle. That's got to be good news for many!

Regards Shelliconiconicon


Posted in Untitled on 02 Feb, 2011 - 6:57 pm

Hi Ben,

Aspirin does seem to be beneficial slightly when taken at first onset of an attack but with so many of the other medications that are usually prescribed for CH there is quite a large risk in combining this as you mentioned. You may be onto something, time will tell, but will the side effects in relation to the quantity required versus the benefit be worth the risks involved, when oxygen is side effect free and so much more effective!

Guess it gives us something to think about!

Regards Shelliconiconicon


Posted in Untitled on 02 Feb, 2011 - 6:49 pm

Hey Ben,

I have been aware of these for about the last 18 months but have been trying not to count my chickens before they hatch so to speak. The medications you have mentioned are on the horizon,icon there has been a great deal of both excitement and concern in relation to what this means for CH sufferers. As far as I can tell from the research I've done, when these meds do actually become available to us (which will not be for at least 5 years) they will have a great impact on all sufferers. No more vaso-constrictive side effects such as chest pain, heart issues, Raynaurd's and no more amputations! I just wish we had these options earlier.
Keep up the good fight!

Regards Shelliconiconicon


Posted in Untitled on 02 Feb, 2011 - 6:40 pm

Hi Guys,

Welcome to you both! I'm sorry you are suffering!

Ben has given you some great advice and when you are suffering and desperate almost anything is worth a try. The only things that I would also recommend at this stage would be to keep a very detailed headache diary, the more info that you can provide the better and the best person to advocate in finding a cause and manageable treatment plan is you. Also perhaps when you get an attack you could try deep breathing cold air ( like Roger does with the car air-conditioner ), it may help a little.

I would have to say that I would agree that from your post CH may not be your diagnosis, but I'm not a doctor either, so please keep up the fight and search for help with this, information really is power!

Goodluck.

Regards Shelliconiconicon


Posted in How to use imigran injections? on 02 Jan, 2011 - 8:03 pm

Hi Guys,
Firstly I want to wish you all a fabulous new year, lets hope this year can bring pain free times to all!

Satan I'm not offended at all, it's important to be who you are and I'm glad you have stuck with the name. One of the things I have learn't on this journey is beating the beast is the end game, If the injections are providing you with some relief then that's awesome! I'm personally a huge fan of O2 mainly due to if used correctly it works well and has no side effects, last year was a huge catalist for us in seeing what prolonged usage of the recommended medications can do to your body. Please keep learning as information is power and there will come a time when you need to educate your dr to other methods.

Good luck and I'm so happy that your getting some relief!!!

Best wishes to all,
Regards Shelliconiconicon


Posted in How to use imigran injections? on 02 Jan, 2011 - 8:03 pm

Hi Kathleen,

Thanks for passing on my info, I;m glad it has been helpful to you!

Best wishes to all,
Regards Shelliconiconicon


Posted in Untitled on 07 Dec, 2010 - 10:40 pm

Hi Kathleen,

Welcome to you! Sorry you have to be here after such a long break. Please check out the Melatonin thread as it may be beneficial if many of your attacks are at night. If there is one thing I have learnt over the years it's that just when you think you know the beast, it does a backflip and changes it behavior on you.

What flow rate on the O2 are you using? Many people give up on it, saying it doesn't work for them however the method in which it is used and the flow rates will determine its results, if administered incorrectly or not at atleast 15 liters/per minute flow rate ( 25-50 litres is much better) the results will not be anywhere as effective.

Some suggestions to help are:
Use the O2 as soon as you feel it coming on, Speed is the name of the game. The sooner you get on the O2, the better the success rate. Stay on it for 15 to 20 minutes. If it has not killed the hit, stop using it. Try to get through 10 minutes without the O2, and then hit it again. If the O2 does not work the first time, the second time is almost Kills the attack. Don't run out, always know how long your oxygen supply will last and how long it will take to get a resupply. At 12 lpm an E tank will only last 44 minutes. An H tank will last 8.3 hours. Here is a calculator to determine how long your oxygen supply will last: http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm

Once you have the O2, make sure you have the right accessories for proper delivery. Most can be bought off ebay relatively cheeply compared to hire costs. Don't count on anybody else to provide the Right Stuff. If you can't get a re-breathing mask you can use the nose prongs, Do not put it in your nose. Put it in your mouth, close your lips around it, and inhale. Open your mouth to exhale, and then close your lips, again, around it to inhale. Breath only through your mouth. Do not inhale any “room air” only the O2.

If you can't get a moisture bubbling bottle make one By using an empty clean jar, with a tight fitting lid, drill two small holes in the lid, the size of the O2 air line. Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar. Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid. Seal around both hoses with a silicon type sealant. Put up to 5cm of distilled water (can be bought from chemist) into the jar. No more than ¼ full or when then O2 is on the water will come up the tube to the mask. Some people find putting ice into the moisturizer helps the O2 work quicker! If you do this only use distilled water to make the ice cubes.

If you are using a re-breather mask, hold it firmly to your face with the palm of your hand. When you inhale, place your index finger and thumb over and the holes on the side of the mask (the ones with the rubber valve over them), this is to make sure the valve seals fully over the nose and mouth. When you exhale, just lift the finger and thumb, keeping the mask to your face by the palm of your hand, let the air out of those holes. Alternatively you can lift the mask and exhale directly into the air but this cuts down on the purity of O2.

Leave the O2 on for 5 minutes AFTER the last of the pain is gone even if you have aborted an attack in 10 minutes or less just to be sure, if you take it off to soon, the attack could restart.AS with most things each person is different so what may work in one cluster may not work for the next, so if it doesn't work keep persevering, its trial and error, but you will figure it out eventually and O2 will become a very effective abortive for you! Please remember I'm not a Doctor or a Respiratory expert, this is just from experience and educating myself to get the best results from our oxygen.

Imigan injections are generally used at the beginning of an attack, if you wait until the point of going to the ER you are putting yourself through un-necessary pain. Some info on them is as follows:
The injections are 6mg each in 0.5ml and you get 2 per box. The recommended dosage is 2 injections per day which is 12mg ( I saw somewhere on this site that its 2 per week but that info is incorrect). The best was to get around this is by splitting the injections, some people can split them in to two others split them into three and get the same results as if using a full injection. As each person is different the amount required is also different, however the amounts do not change based on the severity of the headache eg. If you split the 6mg inj into 3 then it will have the same effect for a kip 5 headache as it would for a kip 10 headache and the time that it takes to work will also be the same. This info is from experience only!

As the injections only come in the one dosage of 6 mg the way that we split them is by using the 1ml single use insulin needles. The way I do this is after opening the injections out of the box and taking the sticker off the top, I open the flap as if I'm going to screw the injector pen on, I then get a butter knife and place it under the glass lip of ampule/inj, very carefully I pull upwards to get the ampule/inj out of the blue plastic surround. I then get the insulin needles and pull out the plunger part, I place the imigran amp needle into the top of the insulin needle syringe and with the plunger push down on the black seal on the inside of the imigran carefully until I have the right amount of Imigran in the insulin syringe (I only split them into 2 so its .25ml which is a 3mg dose). I remove the imigran and tilt the insulin syringe to the side slightly so I can reinsert the plunger, you must be very careful not to push it in to quickly or the imigran will squirt out the needle. When the plunger is in just far enough to seal, I turn it upside down and flick it with my finger so all the imigran goes to the bottom and the air to the top, allowing me to then push the plunger about half way up the syringe.

Then with each headache we use a subcutaneous inj ( into the fat layer just under the skin, the same as you would with the injector pen). By doing this we get 4 injections out of a kit rather than 2. If you split them into 3 then you would get 6 injections out of a kit. Which would mean you could treat all six headaches and still only have had the 12mg. It is unfortunate that they don't make the imigran in ampules (like morphine) in Australia or the injections in 2mg or 3mg doses. It makes sense to me that if you can use a smaller dose and get the same result then not only is it better for your health but also that you can treat more headaches without exceeding the recommended 12 mg a day dose. And lets not forget its heaps cheaper!

We have been doing this with the imigran for many years now and it has worked very well for us, please remember I'm not a doctor. If you have any queries just drop me a line. Hope this is helpful. Forgot to mention as the methods of imigran change so do the recommended doses per day. The maximum recommended doses are as follows:

Oral = 300mg per day Tablets
Nasal = 80mg per day Nasal sprays (4 spay packets per day)
IM = 12mg per day Subcutaneous Injections (2 x 6mg or 4x3mg or 6x2mg inj)

Wishing you all the best and pain free times!

Regards Shelliconiconicon


Posted in Untitled on 07 Dec, 2010 - 10:13 pm

Hi,
Can you please give me another name I can call you, rather than me replying to Satan.
I'm so sorry you are having such a bad time at the moment, loosing your job is terrible but the fact that you are suffering so much at the moment makes it much worse.
The reason that centrelink require's medical certificates from your doctor is to give them all the current information on your illness on a regular basis. In the past when I questioned what allowances were available to CH sufferers who were unable to work due to their conditions, I was told that perhaps a sickness benefit may be available to some however because CH was not continual in most cases even with chronic sufferers it was not classed as a disability. Fortunately this now has changed slightly and mainly is determined by how your GP fills out the centrelink documentation.

I have read your other posts and it seems that your treatment plan is not very effective for you at the moment, may I suggest you request help from either your GP in regards to a more effective preventative and abortive approach or even better still contact:
Dr Christina Sun-Edelstein
Private Neuroscience Consulting Rooms
5th Floor Daly Wing
35 Victoria Parade, Fitzroy, Vic, 3065.
PH: 03 9288 3045
The appointment won't cost you a cent if you have a health care card. We have recently seen Dr Christina Sun-Edelstein in Melbourne, she has just started practicing in Australia after working as a headache specialist at the New York Headache Clinic for many years and I'm told she is the Australian Guru next to Professor Goadsby. We found her fantastic, she may have some suggestions that your neuro is unaware of, I am positive she will be able to help get your CH to a manageable state. She stated that no matter how busy she is she will always find time to see cluster patients.

Also please check out the melatonin thread. Are you a chronic or episodic sufferer?
A decent preventative is definitly a must, Garbapentin at around 900mg a day is very effective for many as is Verapamil. Some other abortives that may help you are a prescription for Oxygen and also as St Peter advised Sumatriptan, This is called imigran over here, the injections are quite expensive at around $150 a box of 2 which are not on the PBS, But can be split to up to 6 doses. Imigran sprays may be more available to you but do work slower.

I am in Werribee often if you would like to catch up one day, Just PM me and I will send you my contact details. Hope this has been helpful.

Regards Shellicon


Posted in Untitled on 07 Dec, 2010 - 9:34 pm

Hi Martine and Tom,

That's Fantastic news! iconiconiconicon
I'm so glad you have found some relief at last.
Hope you have a great Christmas and New year!

Thanks for your research into this, you have provided some great information here that I'm sure will be beneficial to many. My best wishes to you both.

Hi Sunset21,

So glad you have found the correct Melatonin now, the product from health food stores is not effective for CH, It is recommended to start with 10mg 30 minutes before bed time. Some go as high as 15 mg to get through the night. Helps to avoid the wake up calls. Give it 7-10 days to see if it helps you, so I'm so glad that you are persevering with it. I hope that this can be an effective tool in fighting the beast for you.

Regards Shelliconicon


Posted in Raynauds phenomenom on 06 Dec, 2010 - 3:59 am

Hi Guys,
I'm finally home and would like to apologize to all of you for my absence over the last couple of months! To all the newbies welcome, I'm looking forward to getting to know you all, to all those who have been lucky enough to change your classification to green and are not currently suffering, I wish you all the best and hope you have a long and happy break from the beast! And to all those who are still fighting this horrible beast, my condolences and prayers are with you and I'm wishing you all pain free times.

As many of you would be aware Cory has been suffering for the last 25 years with this horrible condition, for the last few years he has been chronic with 4-8 attacks a day. We had tried most of the medications and treatments available with little to no benefit. Over the years the one abortive that has always worked has been imigran injections, but the limitations of quantity per day and also cost has always been an issue. Due to the vaso constrictive effects of the medication over the years he developed Raynauds phenomenon.

Finally a few months ago he was lucky enough to receive a well deserved break from his cluster, no sooner had we come to terms with "getting our lives back", Corys hand went black due to vascular issues and he then underwent all the necessary medical treatments from blood thinners to necrotic de-bribement and two different amputation surgeries. Set backs such as infection, blood clots and him being immune to pain relievers has made this a difficult time. The end result at this stage is he has had all his fingers removed from his right hand, he has been lucky to keep his hand and thumb as initially we were told he would loose this also. He has tried to be strong and has been suffering continual pain, as expected depression is starting to get on top of him. The beast must have decided he hadn't suffered enough and has been lurking over the last week ,with no ability to use any vaso -constrictors ( Imigran or Oxygen) this fight is going to be tough. So we are taking one day at a time and trying to get on with life as best as we can, I'm so very proud of him for the way he has handled the whole situation and would do anything to end his pain.

Again I am so sorry to have not been around recently and wish you all pain free times!

Regards Shelliconicon


Posted in Untitled on 16 Oct, 2010 - 5:17 pm

Dear Martine,
I am so sorry! Obviously I'm not a doctor but if you could pm Toms conditions and medications, also any allergies I will do my best to do some research and see if I can find anything helpful? I'm sure you've already searched extensively but maybe a fresh set of eyes could help. As I mentioned I am so sorry, Dr Sun-Edelstein was great with Cory but of course he is an adult, I was unaware that Ch sufferers needed to be of a certain age to qualify for help.
It is absolutely disgusting to me that anyone let alone a child has to go through this horror! We can send people to the moon, devise artificial intelligence and clone humans yet we can not find it within human nature to be compassionate and helpful with others when we have the ability to do so. I am so sick of people suffering from CH being shoved in to the " too hard basket", Im damn sure that basket would be non existent if the children and relatives of Medical Specialists were the ones suffering!

Regards Shelliconicon


Posted in Just Venting on 15 Oct, 2010 - 5:37 pm

Hey Guys,
Yeah I know this is a slippery slope as far a dwelling on the negatives but as its so important to be able to vent and let go, I thought we could do with a post where we can get it out and forget about it. So guys if you have any annoyances, post them here, chances are some of the things that are annoying you, someone else is also peeved at too!

A couple of things annoying me today are:
* The constant lack of education and understanding of CH within the general public and the medical community.
*The lack of $$'s and effort being spent on finding a cure or help for sufferers.
*Ignorant people.

Regards Shellicon


Posted in Untitled on 15 Oct, 2010 - 5:24 pm

Hi,
I'm not quite sure where to start, Im sorry you suffer from migraines. Have you been diagnosed officially by a Neurologist or at a headache clinic? From what you have written on your other post I am not sure that you understand fully what a cluster headache sufferer goes through. One of the most offensive things that can be said to a sufferer is "I have migraines, I know what your going through", This is due to the fact that migraines and clusterheadaches only commonality is that pain occurs within the head. Migraines are considered severe pain, CH is considered excrutiating, the frequency and extent of attacks are also very different. I am glad you can get some relief from oxy's and benzo's but if you ask any CH sufferer they will tell you that you could throw boxes of the stuff at them and the only effect it will have is to make them sleepy, these medications have no benefit at all against the pain of CH! Unfortunately some sufferers do from time to time in desperation have to resort to opioids just to take the edge off, however this tends to lead to an added issue of then becoming addicted as well as suffering from such a horrific condition.
All I can suggest is keep a well documented headache diary and find a specialist who has the capability of diagnosing you accurately.

Regards Shellicon


Posted in Untitled on 15 Oct, 2010 - 2:01 pm

Hi Vaughan,
No probs! Cory has had 5 heart attacks in the last 10 years from excessive imigran use and is now suffering from Reynauds Syndrome bought on by vaso constrictor medications over the years, now we are waiting for the Plastic surgeon to decide how much of his hand and arm needs to be amputated as the Vascular Surgeons can not help. Imigran at times has been a life saver for us in aborting attacks quickly but looking back now would we have used the same dosages if we new it would lead to loss of limbs and the associated pain, the answer is NO WAY. I'm happy to PM you photo's of what excessive vaso constrictors looks like in relation to limb loss if you would like but its not pretty!
Maybe you should check out clusterbusters.com to see if it's a viable option for you. The materials needed can be accessed in Australia legally and cheaply.
Regards Shellicon


Posted in CH figures innacurate on 14 Oct, 2010 - 4:10 pm

Hi Guys,
Latest statistics put CH on the Same level as MS population wise, Its amazing that everyone has heard of MS and the millions of dollars that are spent towards finding a cure annually, but no one has ever even heard of CH unless they are a sufferer or a supporter! Its time for change and we are the ones that need to make it happen, this forum is a great start. Thanks Roger!
Regards Shelliconiconicon


Posted in Untitled on 14 Oct, 2010 - 4:03 pm

Hi Kellie,
Welcome to the site! So sorry I haven't replied to you sooner, you have been given some great advice by Heather, the Oxygen is definitely the best non medication abortive. Some other options that you have is exercise at the start of an attack can for some alleviate attacks also increasing your magnesium intake can help in aborting cycles or at least reducing the frequency and kip factor of attacks. If you are interested in alternative methods the folks over at : http://clusterbusters.clusterheadaches.com/
are very informative in regards to busting with seeds and mushrooms.
The following link can be useful in educating those around you as what you are really going through: http://www.ouch-us.org/downloads/ch_syndrome.pdf
Hope this is helpful, just remember information is power and the more you know the better off you will be. The people here are great and if you have any questions or just want to vent we are here and understand in a way that unfortunately most never will. Wishing you pain free times soon!

Regards Shelliconicon


Posted in Untitled on 14 Oct, 2010 - 3:43 pm

Hi Semaj,
As you are aware we are not doctors but do have a bit of experience in this area, the info that you have been given above is great and please take advantage of these very wonderful suggestions. Sometimes the best way to find help is to educate those around you even your doctor, Here are some links that may be helpful:

http://www.ojrd.com/content/3/1/20
A very helpful document for anyone who wants a well rounded information library.

http://www.ouchuk.org/html/news/Note%20for%20colleagues.pdf
A great letter for your friends and colleagues so they can understand what your going through if indeed you are suffering from CH.

http://www.chhelp.org/mhni.html
A great doc to take to your doctor to help educate him on the use of high flow Oxygen.

From your post it does seem that you have some symptoms of CH but some of your symptoms are also not usually attributed to CH.

Abstract:Cluster headache: causes and current approaches to treatment
Manjit Matharu BSc, MRCP and Peter Goadsby MD, DSc

Cluster headache (CH) is a unilateral headache that occurs in association with cranial autonomic features. It is an excruciating syndrome and one of the most painful conditions known to humans, with female patients describing each attack as being worse than childbirth. In most patients, it has a striking circannual and circadian periodicity. This disorder has a highly stereotyped clinical phenotype and responds to specific therapies, thereby underlying the importance of distinguishing it from other primary headache syndromes.
Clinical features
It is useful for both clinician and patient to standardise the terminology used in CH. A cluster headache or attack is an individual episode of pain that can last from a few minutes to some hours. A cluster bout or period refers to the duration over which recurrent cluster attacks are occurring; it usually lasts some weeks or months. A remission is the pain-free period between two cluster bouts. CH is a disorder with highly distinctive clinical features; these are dealt with under two major headings: cluster attack and cluster bout.
Cluster attack
The attacks have an abrupt onset and cessation. They are strictly unilateral, though they may alternate sides. The pain is excruciatingly severe and located mainly around the orbital and temporal regions, although any part of the head can be affected. The headache usually lasts 45-90 minutes but can range from 15 minutes to three hours. The signature feature of CH is the association with cranial autonomic symptoms, and it is extremely unusual for these not to be reported. The International Headache Society (IHS) diagnostic criteria3 require the cluster attacks to be accompanied by at least one of the following, which have to be present on the pain side: conjunctival injection, lacrimation, miosis, ptosis, eyelid oedema, rhinorrhoea, restlessness or agitation, nasal blockage and forehead or facial sweating. The autonomic features are transient, lasting only for the duration of the attack, with the exception of partial Horner’s syndrome; ptosis or miosis may rarely persist, especially after frequent attacks. Recently, there have been several descriptions of the full range of typical migrainous symptoms in significant proportions of cluster patients.2, 4 Premonitory symptoms (tiredness, yawning), associated features (nausea, vomiting, photophobia, phonophobia) and aura symptoms have all been described in relation to cluster attacks. However, in contrast to migraine, CH sufferers are usually
restless and irritable, preferring to move about and look for a movement or posture that may relieve the pain. This is such a prominent feature of the CH phenotype that it has recently been incorporated into the revised IHS diagnostic criteria.3 The cluster attack frequency varies between one every alternate day to three daily, although some have up to eight daily. The condition can have a striking circadian rhythmicity, with some patients reporting that the attacks occur at the same time each day.

Please read this whole article and maybe even print it out for your doctor: http://www.ouchuk.org/html/news/Precriber.pdf

The main thing with any of these types of headache issues is to be correctly diagnosed as some other conditions mimic CH, I would follow Barry's advice to do the CH Quiz then follow Heathers advice to contact a good Neurologist is essential and the best place to find one is at a major hospital Neurological Science Department.

Hope this has been a little helpful. Wishing you all the best and pain free times.

Regards Shelliconicon


Posted in Untitled on 14 Oct, 2010 - 2:59 pm

Hi Vaughan,
Imigran be a life saver for most and at times we have been told by a neuro that to up to four sprays a day is fine, but please be aware there are some very seroius side effects to over use of any vaso constrictive medication these can include heart problems and loss of circulation causing limb loss. The most beneficial tool that you can have at this time is Oxygen, It takes some effort to manage the use of it correctly but at 25 litres per minute flow rate through a non rebreather mask it should abort all of your attacks within 5 or so minutes. The problem most people have when they say it hasn't been successful for them is incorrect usage. Also imigran subcutaneous injections may be more beneficial to you than the sprays as you can split them into 2 or 3mg doses and use them more frequently at lower dosages thus treat more attacks without using higher doses. Please also look into increasing your magnesium intake either orally or through IV, your doc should be able to help with this.
Regards Shelliconicon


Posted in time effect on 14 Oct, 2010 - 2:24 pm

Roger,
So sorry for your loss, my condolences to you and your wife!

Heather,
My condolences also to you! You go girl, great attitude to have, never let the beast win, he may get you down but he will never take your passion!

Regards Shellicon


Posted in Untitled on 13 Oct, 2010 - 3:05 pm

Dear Martine,
My heart breaks for you, I know there is many medications that may interfere with Toms other conditions however perhaps IV magnesium may be beneficial in aborting his cycle or even the occipital nerve block. We have recently seen Dr Christina Sun-Edelstein in Melbourne she has just started practicing in Australia after working as a headache specialist at the New York Headache Clinic for many years and I'm told she is the Australian Guru next to Professor Goadsby. We found her fantastic, she may have some suggestions.She stated that no matter how busy she is she will always find time to see cluster patients. Her details are as follows:
Dr Christina Sun-Edelstein
Private Neuroscience Consulting Rooms
5th Floor Daly Wing
35 Victoria Parade, Fitzroy, Vic, 3065.
PH: 03 9288 3045

Regards Shellicon


Posted in Untitled on 13 Oct, 2010 - 2:41 pm

Welcome Sara and Les,
Sorry I havn't replied and welcomed you sooner! Sara I'm so glad to see you have such an awesome attitude to enjoying life in between cycles, we all need hope to get us through. As to getting through this Les, clusterheadache sufferers are the toughest bunch of people I have ever had the pleasure of knowing and when times get really bad their is always someone here who understands what your going through.

Educating doctors is unfortunately a necessary component of finding a manageable treatment plan for most, many sufferers find it best to use a two pronged attack on these beasts. A good prevent and a good abortive. Verapamil, Garbapentin and Lithium are popular prevents.( A med you take daily, while in cycle, to lessen the number and intensity of your attacks). Prednisone, a steroid, is often used as a transitional therapy whilst the preventatives kick in. For abortive's, please read the oxygen info link on the menu. Turns a 90 minute attacks into 6-8 minute attacks but it must be used at the correct flow rates to be successful. At least 15 litres per minute (25 is preferable) through a non-rebreather face mask, A real life changer for most who use it. Imigran injectables are a life saver they abort most attacks within 3-5 minutes, they can be split into 2 or even 3 from one 6mg ampule, it's a trial and error process but it will save on the cost and also allow you to treat more attacks. Energy drinks such as Red Bull with the combination of Caffine and Taurine chugged at the first sign of an attack many can abort a full attack or at least reduce the intensity for you, another great emergency abort.
How ever if you are trying to achieve a good nights sleep this won't help, a prescription for melatonin can be written by your doctor and may help in aborting those night time hits.

Some CH'ers have been reporting that "busting" has shut down entire cycles for them cold. It's an approach that is making quite a splash - here's a video talk by one of our fellow CH'ers on the subject:

http://vimeo.com/10918637

or for alternative therapies check out:

www.clusterbusters.com

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) :

http://www.plainboard.com/ch/chtherapy.pdf

Here is one for high flow oxygen for the Dr also:

http://www.mhni.com/faqs_high_oxygen.aspx

ALL NEW!! HEADACHE 2008-2009, The new 72 page Headache 2008-2009:

http://www.headachedrugs.com/

The people here, their information, experience and support are truly awesome! May your journey through life be a little easier now that you have found this wonder. Please read all you can, information is power. Good luck with it all and if you ever need to chat just drop us a line. Hope this is helpful!
Welcome to you both!
Regards Shell iconiconicon


Posted in good news! on 13 Oct, 2010 - 2:05 pm

Awesome news Irene! Hope it continues for you.
Regards Shelliconiconicon


Posted in Untitled on 13 Oct, 2010 - 1:57 pm

Hi Vaughan,
Welcome to this wonderful community, the people and information are fabulous. My condolences to you and your family in losing your daughter. Ava looks like a little angel, its amazing how much a child's smile can make even the darkest days seem bright. I'm sorry that you are suffering from this horrible condition, I hope you access to a understanding and helpful doctor who can help you with a new management plan. We have found the imigran injections to be better than the sprays and also find oxygen fantastic as a first line abortive. Magnesium in either tablet or injection form have had some very promising results of late in aborting whole cycles or reducing severity and frequency of attacks. Heathers advice to read as much as you can is gold as information is power and the best advocate you have in your treatment is you. Goodluck and wishing you pain free times soon.
Regards Shellicon


Hi Heather,
My condolences to you! Sending cyber hugs and prayers your way!
Regards Shell iconicon


Posted in Untitled on 13 Oct, 2010 - 1:22 pm

Hi Martine,
The health food store melatonin is fine for some people but the melatonin concentration is not as high as most sufferers require for success. Melatonin is not actually illegal in Australia, its just illegal for health food store to sell it. If you get a prescription from your doctor , your local chemist should be able to fill it for you. We got a script just last week so you shouldn't have any problems getting it legally. Sending you and Tom my prayers and best wishes!
Regards Shelliconiconicon


Posted in Supporters tips on 24 Sep, 2010 - 2:52 pm

Thanks Guys,
Thankyou for your kind wishes! I've known for a long time that with some chronic sufferers the long term outcome is not so good but never in my wildest nightmares did I think that loss of limbs was one of those outcomes. We are still in wait and see mode, the doctors and nurses at the Royal Melbourne have been fabulous and have done their best to help. However saying that, Cory was discharged last night in excruitiating unmanageable pain ( he said it's as bad as the CH attack but localised to his hand and continuous), The doctors have said that they can not manage his pain any better as the vaso damage is so severe and with the coming surgery , they need to leave something up their sleeves so to speak, so they can try to give him some releif then. We have been told to return on Thursday for an appointment to determine how much needs to be removed, but were also told that the hand has sustained to much damage to be saved. Cory has been through so much and is very strong, he's staying as positive as he can but yet again watching him suffer like this, I honestly wonder how much more he can take?
The one positive from all of this is whilst he was in hospital their head Neurologist had a consult with us, he was the first dr who truely undertsood where we were coming from in about the last 300, the first thing he said was "I've been reading your file and you suffer from CH, I get alot of people telling me that's what they have but yours is genuine, any good neuro knows that CH is the most painful of all conditions you poor basted". He then told us that a new headache specialist from the New York Headache Clinic has just moved to Melbourne in the last month, she is very highly recommended and knowledgeable with CH. We explained how Cory started out as episodic then turned chronic, the extent of his condition and all the treatments that he has tried over the years and also how we have been treated at our local emergency department. Infront of us he dictated a letter to about 10 different doctors (some Cory's specialists and GP, our local ED and this new dr and all the different doctors at RMH that are involved with his care), and then organised an appointment with the headache specialist for this Wednesday. His concern stems from the fact that with the current situation when the headaches return we will not be able to treat them at all. So fingers crossed that the appoinment goes well and she has some new idea's. I will ask if I can add her to the site and let you know how we go.
Wishing you all pain free times!

Regards Shell iconicon


Posted in Untitled on 22 Sep, 2010 - 1:55 am

Hi Kerry,
Sorry I haven't been around lately, check out my explanation on supporter thread. Just wanted to let you know I'm thinking of you and will be in contact as soon as I can. Best Wishes.
Regards Shellicon


Posted in Untitled on 22 Sep, 2010 - 1:44 am

Hi Guys,
I think that starting from scratch is a great idea! Research has shown that treatments that may or may not work for one cluster can change dramatically over time in regards to the results being successful or not in future clusters. Considering the changes that our bodies experience with age, chemically and even hormonally it makes sense that our outcomes with various treatments would also differ.icon

Heather, That's great news! I'm so happy for you, hope this lasts for ever!iconicon

Regards Shellicon


Posted in Supporters tips on 22 Sep, 2010 - 1:33 am

Hi Guys,
I'm so sorry it's taken me so long to get back to you, Cory has suffered a problem with his vascular system relating to the reynaud's syndrome brought on by the use of imigran in conjunction with ketalorac, and since last thursday we have been at the Royal Melbourne Hospital trying to convince the doctors to try to save his hand. They have told us that they may have to amputate some, if not all of his right hand, he has been in heaps of pain and isn't doing very well, they don't have much hope at this time. It's a wait and see situation as far as whats viable tissue at the moment. So I will be in contact as soon as I have access to a computer again. Until then I'm wishing you all pain free times.
Regards Shellicon


Posted in Untitled on 15 Sep, 2010 - 1:35 pm

Hi Kerry,
I'm so sorry you are having to go through all of this! I'm not to sure where to start so please bare with me. One of the biggest problems with all of these types of conditions is finding anyone in the medical profession that has a clue! That being said there are some doctors out there who are caring and if they don't have the knowledge are happy to learn, I think this is probably your best short term option, get a GP who you are comfortable with and we will help you educate him. GP's have the option and ability to prescribe any of the meds that the neurologist can, what your coming up against is the situation of "Too Hard Basket" and them not wanting to make a decision due to their lack of knowledge of your conditions.
I will do some work and get back to you in regards to the best neurologist in your area, from what you are describing some of the symptoms such as frequency and length of attacks, do not seem to fit the cluster headache norm (if there is such a thing). As with your question in regards to the headaches being one sided, most CH sufferers have attacks on the same side every cycle, there is a very small percentage that experience attacks changing sides and even smaller percentage that have them on both sides. Your explanation of how your attacks begin starting in your neck and collarbone is also a concern in regards to your diagnosis of CH. In my opinion it is imperative that you have access to a qualified neurologist as your conditions may have been wrongly diagnosed, there are a number of headache disorders that mimic both the TN and CH.
I'm not a doctor but do have a fair understanding of medication's and I'm not sure what your doctor is trying to achieve by some of these meds. Oxygen is a first line abortive for CH, I know it's a nuisance to have to get but it can help a great deal. Our cylinder is a "G cylinder" and has pride of place in our bedroom next to the bed and has at times been a life saver, it has given us the capability to deal with attacks no matter how bad without having to call an ambulance and visit the ER. Please be careful of the Ketelorac it can bring on some very nasty side effects such as Reynaud's syndrome which can be completely debilitating and result in gang green and loss of limbs. Please check out the Oxygen link on the left, the problem with getting Oxygen from the ambulance or hospital is that they will most likely give you a flow rate of 8-10 liters a minutes through a standard mask or with the nasal canula. These rates of flow and methods of intake are not worth doing at all as the Oxygen needs to be at 15 liters per minute minimum (much more effective at 25 or even 45 liters a minute) through a non-rebreather mask, as this would trigger your TN you would need to over come this by using the nasal canula in your mouth or a mouth piece instead of a mask.
Some CH sufferers have found the combination of magnesium, calcium, D3 and iron to stop or dramatically reduce severity of attacks/cycles, with your Osteopenia this combination could possibly be beneficial to both, it certainly couldn't hurt. The other abortive which may be helpful is the Imigran, this comes in tablet form (not recommended for CH as takes to long to absorb), nasal sprays and subcutaneous injections. Both the sprays and inj can abort attacks within 3 - 5 minutes, the injections are quite expensive and are not covered on the PBS but maybe more beneficial to you than the sprays as these could trigger your TN.
It's not at all surprising that you would be feeling exhausted just having to deal with your medical conditions, let alone with all the added toxins from the medications and the added stress of not having medical support, the memory situation is also completely understandable so don't worry to much, this can happen to any of us without having to deal with what your going through. Keep your chin up and I will get back to you shortly with some more info. Sorry I haven't been more helpful, I have a bit on my plate today, but as soon as I can I will get back to you!
Regards Shelliconicon


Posted in Using a portable T.E.N.S (Transcutaneous Electrical Nerve Stimulation ) Machine on 15 Sep, 2010 - 12:30 pm

Hi Dan,
Its nice to meet you also, I have found an Australian source of Rivera Corymbosa seeds and also Hawaiian Baby Woodrose seeds that can be used to abort clusters in a similar way to the mushrooms. If you are interested please PM me and I will msg you the details. Not sure if this is helpful but if you have had good results with mushrooms might be worth a try?
Regards Shelliconicon


Posted in Using a portable T.E.N.S (Transcutaneous Electrical Nerve Stimulation ) Machine on 14 Sep, 2010 - 4:17 pm

Hi Dan,
Welcome, glad you found us! Just wondering if you have used Oxygen and what your experience has been with it? Many sufferers have had fantastic results using Oxygen through a non-rebreather face mask at flow rates of minimum 15 litres per minute, the higher the flow rate, the faster the cessation of an attack. For us Oxygen at 25 liters per minute aborts most attacks within 3 - 10 minutes. I'm glad you have found some relief from your T.E.N.S machine and of course I would never begrudge anyone relief from this horrible condition, but my experience of T.E.N.S whist using it during child birth was of no benefit at all. With the comparison of pain between child birth being severe pain and a cluster attack being excruciating pain, I would never have considered any benefit of trying this, especially when an attack can be aborted completely with Oxygen in under 10 mins it would seem unnecessary to endure even 35 mins of extra pain. Are you a chronic or episodic sufferer and what meds have you tried?

Regards Shell

P.S Please do keep us all informed of your experience of this, If it can be beneficial to even one person it's worth doing.
iconicon


Posted in Untitled on 14 Sep, 2010 - 3:29 pm

Dear Heather,

"Probably not the greatest person to welcome you from my hospital bed--oh woe is me!!!! Get over it woman."
.
Replying to anyone's post whilst you are suffering iconas you are is beyond caring and compassionate, your support to people is amazing, you really are a guardian angel to us all!icon You are perfectly entitled to any of the many emotions I'm sure you are experiencing at the moment! And if anyone disagrees send them here or give them my number and I'll "give em what for".icon Sending my prayers your way and a big cyber hug!

Regards Shellicon of you!


Posted in Untitled on 14 Sep, 2010 - 3:19 pm

Hi Kerry,
Welcome to the nut house! Seems you certainly have a lot to deal with and unfortunately know all to well the pain suffered from Clusters. I'm sorry you are having issues finding a suitable GP, If you could let us know what area you are from I'm sure another sufferer may be able to be of some assistance with this. Do you have a neurologist who is helpful? I would assume with the mention of your conditions that you would have had to have been diagnosed by a neurologist, but many medical professionals have little knowledge in regards to CH. It was initially assumed that Cluster Headaches were caused by nerve issues thus that they stem from the same issues that would cause Trigeminal neuralgia, However with the research of Doctors such as Professor Peter Goadsby it has now been discovered that Cluster headaches actually occur due to a problem with the grey matter in the Hypothalamus.
Many sufferers of CH also experience Trigeminal neuralgia pain but this is actually a part of CH not an additional condition. What medications are you using to try and battle all of this? As with the nature of the beast it can be very difficult to determine if the your remission from CH was linked to the treatment for TN or if your cycle was at an end, are you an eposodic or a chronic sufferer and what if any pattern do your clusters follow?
As you can see from Heather's post ( even though she is going through absolute hell at the moment, she is still so caring about others to take time to reply from hospital) the people here are great! They are very compassionate, caring and empathetic, certainly the most understanding people you will come across. Again welcome and good luck with your journey through this miserable condition, If we can be of assistance just drop us a line.
Regards Shelliconiconicon


Posted in Supporters tips on 13 Sep, 2010 - 9:51 pm

Hi Roger,
So sorry to hear the beast has found you once again! When you see your Gp please ask her for oxygen and imigran injections, I know the imigran is expensive but if you split them you won't have to suffer for 4 hours, between the oxygen and the imigran your attacks should be reduced to between 3 and 10 minutes.
Regards Shellicon


Posted in Just for a smile on 08 Sep, 2010 - 5:51 pm

Have you ever asked what men are really thinking when they say the things they do? Well now is your opportunity to answer that very question...

"I'm going fishing."
Really means...
"I'm going to drink myself dangerously stupid, and stand by a stream with a stick in my hand, while the fish swim by in complete safety."

"Let's take your car."
Really means...
"Mine is full of beer cans, burger wrappers and completely out of gas."

"Woman driver."
Really means...
"Someone who doesn't speed, tailgate, swear, make obscene gestures and has a better driving record than me."

"I don't care what color you paint the kitchen."
Really means...
"As long as it's not blue, green, pink, red, yellow, lavender, gray, mauve, black, turquoise or any other color besides white."

"It's a guy thing."
Really means...
"There is no rational thought pattern connected with it, and you have no chance at all of making it logical."

"Can I help with dinner?"
Really means...
"Why isn't it already on the table?"

"Uh huh," "Sure, honey," or "Yes, dear."
Really means...
Absolutely nothing. It's a conditioned response like Pavlov's dog drooling

"Good idea."
Really means...
"It'll never work. And I'll spend the rest of the day gloating."

"Have you lost weight?"
Really means...
"I've just spent our last $30 on a cordless drill."

"My wife doesn't understand me."
Really means...
"She's heard all my stories before, and is tired of them."

"It would take too long to explain."
Really means...
"I have no idea how it works."

"I'm getting more exercise lately."
Really means...
"The batteries in the remote are dead."

"I got a lot done."
Really means...
"I found 'Waldo' in almost every picture."

"We're going to be late."
Really means...
"Now I have a legitimate excuse to drive like a maniac."

"Hey, I've read all the classics."
Really means...
"I've been subscribing to Playboy since 1972."

"You cook just like my mother used to."
Really means...
"She used the smoke detector as a meal timer, too."

"I was listening to you. It's just that I have things on my mind."
Really means...
"I was wondering if that red-head over there is wearing a bra."

"Take a break, honey, you're working too hard."
Really means...
"I can't hear the game over the vacuum cleaner."

"That's interesting, dear."
Really means...
"Are you still talking?"

"Honey, we don't need material things to prove our love."
Really means...
"I forgot our anniversary again."

"You expect too much of me."
Really means...
"You want me to stay awake."

"It's a really good movie."
Really means...
"It's got guns, knives, fast cars, and Heather Locklear."

"That's women's work."
Really means...
"It's difficult, dirty, and thankless."

"Will you marry me?"
Really means...
"Both my roommates have moved out, I can't find the washer, and there is no more peanut butter."

"Go ask your mother."
Really means...
"I am incapable of making a decision."

"You know how bad my memory is."
Really means...
"I remember the theme song to 'F Troop', the address of the first girl I ever kissed and the Vehicle Identification Numbers of every car I've ever owned, but I forgot your birthday."

"I was just thinking about you, and got you these roses."
Really means...
"The girl selling them on the corner was a real babe."

"Football is a man's game."
Really means...
"Women are generally too smart to play it."

"Oh, don't fuss. I just cut myself, it's no big deal."
Really means...
"I have actually severed a limb, but will bleed to death before I admit I'm hurt."

"I do help around the house."
Really means...
"I once put a dirty towel in the laundry basket."

"Hey, I've got my reasons for what I'm doing."
Really means...
"And I sure hope I think of some pretty soon."

"I can't find it."
Really means...
"It didn't fall into my outstretched hands, so I'm completely clueless."

"What did I do this time?"
Really means...
"What did you catch me at?"

"What do you mean, you need new clothes?"
Really means...
"You just bought new clothes 3 years ago."

"She's one of those rabid feminists."
Really means...
"She refused to make my coffee."

"But I hate to go shopping."
Really means...
"Because I always wind up outside the dressing room holding your purse."

"No, I left plenty of gas in the car."
Really means...
"You may actually get it to start."

"I'm going to stop off for a quick one with the guys."
Really means...
"I am planning on drinking myself into a vegetative stupor with my chest pounding, mouth breathing, with pre-evolutionary companions."

"I heard you."
Really means...
"I haven't the foggiest clue what you just said, and am hoping desperately that I can fake it well enough so that you don't spend the next 3 days yelling at me."

"You know I could never love anyone else."
Really means...
"I am used to the way you yell at me, and realize it could be worse."

"You look terrific."
Really means...
"Oh, God, please don't try on one more outfit. I'm starving."

"I brought you a present."
Really means...
"It was free ice scraper night at the ball game."

"I missed you."
Really means...
"I can't find my sock drawer, the kids are hungry and we are out of toilet
paper."

"I'm not lost. I know exactly where we are."
Really means...
"No one will ever see us alive again."

"We share the housework."
Really means...
"I make the messes, she cleans them up."

"This relationship is getting too serious."
Really means...
"I like you more than my truck."

"I recycle."
Really means...
"We could pay the rent with the money from my empties."

"Of course I like it, honey, you look beautiful."
Really means...
"Oh, man, what have you done to yourself?"

"It sure snowed last night."
Really means...
"I suppose you're going to nag me about shovelling the walk now."

"It's good beer."
Really means...
"It was on sale."

"I don't need to read the instructions."
Really means...
"I am perfectly capable of screwing it up without printed help."

"I'll fix the garbage disposal later."
Really means...
"If I wait long enough you'll get frustrated and buy a new one."

"I broke up with her."
Really means...
"She dumped me."

"I'll take you to a fancy restaurant."
Really means...
"Someplace that doesn't have a drive-thru window."


Posted in What women really mean? on 08 Sep, 2010 - 5:49 pm

What common words, phrases and sounds actually mean, when a woman says them...

Fine: This is the word we use at the end of any argument that we feel we are right about but need to shut you up. NEVER use fine to describe how a woman looks. This will cause you to have one of those arguments.

Five minutes: This is half an hour. It is equivalent to the five minutes that your football game is going to last before you take out the trash, so it's an even trade.

Nothing: This means something and you should be on your toes. "Nothing" is usually used to describe the feeling a woman has of wanting to turn you inside out, upside down, and backwards. "Nothing" usually signifies an argument that will last "Five Minutes" and end with the word "Fine".

Go Ahead (with raised eyebrows): This is a dare. One that will result in a woman getting upset over "Nothing" and will end with the word "Fine".

Go Ahead (normal eyebrows): This means "I give up" or "do what you want because I don't care". You will get a raised eyebrow "Go ahead" in just a few minutes, followed by "Nothing" and "Fine" and she will talk to you in about "Five Minutes" when she cools off.

Loud Sigh: This is not actually a word, but is still often a verbal statement very misunderstood by men. A "Loud Sigh" means she thinks you are an idiot at that moment and wonders why she is wasting her time standing here and arguing with you over "Nothing".

Soft Sighs: Again, not a word, but a verbal statement. "Soft Sighs" are one of the few things that you can actually understand. She is content. Your best bet is to not move or breathe and she will stay content.

Oh: This word followed by any statement is trouble. Example; "Oh, let me get that". Or, "Oh, I talked to so and so about what you were doing last night." If she says "Oh" before a statement, RUN, do not walk, to the nearest exit. She will tell you that she is "Fine" when she is done tossing your clothes out the window, but do not expect her to talk to you for at least 2 days.

Oh (as the lead to a sentence): Usually signifies that you are caught in a lie. Do not try to lie more to get out of it, or you will get a raised eyebrows "Go ahead" followed by acts so unspeakable that we can't bring ourselves to write about them.

That's Okay: This is one of the most dangerous statements that a woman can say. "That's Okay" means that she wants to think long and hard before paying you retributions for whatever it is that you have done. "That's Okay" is often used with the word "Fine" and used in conjunction with a raised eyebrow "Go ahead". At some point in the near future when she has plotted and planned, you are going to be in some mighty big trouble.

Please Do: This is not a statement, it is an offer. A woman is giving you the chance to come up with whatever excuse or reason you have for doing whatever it is that you have done. You have a fair chance to tell the truth, so be careful and you shouldn't get a "That's Okay".

Thanks: A woman is thanking you. Do not faint; just say you're welcome.

Thanks a lot: This is much different from "Thanks". A woman will say, "Thanks a lot" when she is really ticked off at you. It signifies that you have hurt her in some callous way, and will be followed by the "Loud Sigh". Be careful not to ask what is wrong after the "Loud Sigh", as she will only tell you "Nothing".

I hope this clears up any misunderstandings...


Posted in Just for a giggle on 08 Sep, 2010 - 5:41 pm

Hi Guys,
Hope you get a giggle from these!

A man walks into a hamburger shop and orders a regular
meal. Later, the waitress brings his meal to him. He takes
a bite out of it, and notices there's a small hair in the hamburger.
He begins yelling frantically at the waitress, "Waitress, there's
a hair in my hamburger! I demand to see what is going on!"

So, the waitress takes him back where the cook is and to his
demise, he sees the cook take the meat patty and flatten it
under his arm pit. He says, "That's disgusting!"

Then the waitress says, "You think that's disgusting you should see him make donuts."
--------------------------------------------------------------------------------------------
One day an Indian boy asked his father why they have such long names? The dad answers, "Well son whenever a Indian baby is
born the father would go outside and name the baby after the first thing he sees... Why do you ask Two Dogs Humping."
---------------------------------------------------------------------------------------------
There were these three guys. They had been walking for 3 days and were very tired. They found a hotel, rented a room and went to sleep. Then, this old guy comes in out of nowhere, and says there is a magic pool just outside their hotel room. He tells them "Ok, you
must jump off the diving board, and yell out what you wanna land in."

So the three guys go over to the pool. The first guy, a vegetarian,
yells out "Bananas!" and lands in a pool of bananas. The second
guy was money hungry and yelled out "Money!" and lands in a
pile of money. The third guy jumps, when a bird shits on his head, and he yells "Oh Shit!"
-----------------------------------------------------------------------------------------------A young blind boy is being tucked into bed by his mother. The mom says "Now Billy, pray really hard tonight and tomorrow, your wish
will come true!". Billy says, "Ok mommy." and goes to sleep. The
next morning, Billy wakes up and screams "MOMMY! I'm still blind, my wish didn't come true!", the mom answered, "I know - April Fools!"
----------------------------------------------------------------------------------------------
A woman was standing in a crowded lift of the hotel she was staying in. When a man got in and accidentally elbowed her in the breast. The man said, "I'm sorry! But if your heart is as soft as your tit, you'll forgive me." so the woman replies, "If you dick is as hard as your elbow then I am staying in room 113."
----------------------------------------------------------------------------------------------
A few days after Christmas, A mother was working in the kitchen listening to her son playing with his new electric train set in the
living room. She heard the train stop and her son yell "All you
sons of bitches who want to get off, get the hell off now, because
this is the last stop! All of you sons of bitches that are getting on,
get your asses in the train cause were leaving". The mother went
in and told her son, "we don't use that kind of language in this house." Now I want you to go into your room for two hours.
When you come out, you can play with your train, but I don't want
to hear any bad language.

Two hours later, the son comes out of his room and continues playing with his train. Soon the train stopped and the mother heard the son say, "All passengers who are disembarking the train,
please remember to take all of your belongings with you.
We thank you for riding with us today and hope your ride was a pleasant one. We hope you will ride with us again soon.
For those of you who are just boarding the train, we ask that
you stow all of your hand luggage under the seat, remember
there is no smoking except on the club car. We hope you have
a pleasant and relaxing journey with us today".

"For those of you who are pissed off with the two hour delay ,
please see the bitch in the kitchen."
----------------------------------------------------------------------------------------------
A young couple gets married, and the groom asks his bride if he
can have a dresser drawer of his own that she will never open.
The bride agrees. After 30 years of marriage, she notices that his drawer has been left open. She peeks inside and sees 3 golf
balls and $1,000.

She confronts her husband and asks for an explanation. He
explains "Every time I was unfaithful to you, I put a golf ball in the drawer." She figures 3 times in 30 years isn't bad and asks "But
what about the $1,000?" He replied "Whenever I got a dozen golf balls, I sold them"
----------------------------------------------------------------------------------------------
A mother found her son scooping ice cream in the kitchen and was mad.

Mom : "Dinner is going to be ready in an hour, put that ice cream away and go play."

Son : "But mom, there's no one to play with."

Mom : "I'll play with you, what do you wanna play?"

Son : "Lets play mommy and daddy, you go upstairs and lay down on the bed."

The mom said ok and went upstairs. The son put on his dad's fishing hat and lit up one of his dad's cigarettes. He went upstairs and opened the door.

Mom : "Now what do I do?"

Son : "Get your ass out of bed, you whore, and fix that kid some fucking ice cream."
----------------------------------------------------------------------------------------------
An 80 year old couple were having problems remembering things,
so they decided to go to their doctor to get checked out to make
sure nothing was wrong with them.

When they arrived at the doctors, they explained to the doctor about the problems they were having with their memory. After checking
the couple out, the doctor told them that they were physically okay
but might want to start writing things down and make notes to help them remember things.

The couple thanked the doctor and left. Later that night while watching TV, the man got up from his chair and his wife asked, "Where are you going?" He replied, "To the kitchen." She asked,
"Will you get me a bowl of ice cream?" He replied, "Sure." She
then asked him, "Don't you think you should write it down so you
can remember it?" He said, "No, I can remember that."

She then said, "Well I would also like some strawberries on top.
You had better write that down because I know you'll forget that."
He said, "I can remember that, you want a bowl of ice cream with strawberries." She replied, "Well I also would like whipped cream
on top. I know you will forget that so you better write it down."

With irritation in his voice, he said, "I don't need to write that down!
I can remember that." He then fumes into the kitchen. After about
20 minutes he returned from the kitchen and handed her a plate
of bacon and eggs. She stared at the plate for a moment and
said angrily: "I TOLD you to write it down! You forgot my toast!"
----------------------------------------------------------------------------------------------
One day a girl brings home her boyfriend and tells her father she wants to marry him. After talking to him for while, he tells his daughter she can't do it because he's her half brother. The same problem happens again four more times! The girl starts to get
pissed off. She goes to her mom and says, "Mom... What have you been doing all your life? Dad's been going around laying every maiden in the town and now I can't marry any of the five guys I like because they have turned out to be my half brothers!!!"

Her mom replies, "Don't worry darling, you can marry any one of
them you want, he isn't really your dad."
-----------------------------------------------------------------------------------------------
The patient says, "Give me the bad news first!"
Doctor replies, "You've got AIDS."
"Oh, no! What could be worse than that?" asks the patient.
"You've also got Alzheimer's Disease."
Looking relieved the patient says, "Oh...Well, that's not so bad. At least I don't have AIDS."
----------------------------------------------------------------------------------------------
Mr.Johnson and his secretary are on a train to Paris. They are just about to go to sleep when the secretary, who has the hots for her boss says in a seductive voice, I'm a little cold, could I borrow your blanket? The man says how would you like to be Mrs. Johnson for awhile? The secretary jumps at the chance and begins to get out
of bed. Then he replies, good, then you can get your own damn blanket.
-----------------------------------------------------------------------------------------------
A burglar breaks into a house. He sees a CD player that he wants
so he takes it. Then he hears a voice "JESUS is watching you".
He looks around with his flashlight wandering "What The HELL
Was That?". He spots some $ on a table and takes it......Once
again he hears a voice " JESUS is watching you". He hides in a corner trying to find where the voice came from. He spots a
birdcage with a parrot in it! He goes over and asks " Was that
your voice?". It said "YES". He then says "What's your name?".
It says "MOSES". The burglar says " What kind of person names
his bird moses??" The parrot replys "THE SAME PERSON THAT NAMES HIS ROTWEILER "JESUS".
----------------------------------------------------------------------------------------------
During their silver anniversary, a wife reminded her husband: Do
you remember when you proposed to me, I was so overwhelmed that I didn't talk for an hour?" The hubby replied: "Yes, honey, that
was the happiest hour of my life."
-----------------------------------------------------------------------------------------------
A soldier was given the job of hunting for buffalo. To help him, he hired an Indian Scout. The two of them set off on their journey to find buffalo. After riding awhile, the Indian gets off his horse, puts his ear to the ground and says "Humm, buffalo come". The soldier scans
the area with his binoculars, but sees nothing. He is confused and says to the Indian, "I do not see anything, how do you know buffalo come"? and the Indian replies, "ear sticky".
-----------------------------------------------------------------------------------------------
A guy walks past a mental hospital and hears a moaning voice "13.......13.......13.........13" the man looked over to the hospital and
saw a hole in the wall, he looked through the hole and gets poked in the eye. The moaning voice then groaned '14.........14.........14.......14.'


Posted in Not meant to offend on 08 Sep, 2010 - 5:28 pm

Hi Guys,
Thought we could all do with a giggle!
-----------------------------------------------------------------------------------------------------------
A young guy was complaining to his Boss about the problems he was having with his stubborn girlfriend.

"She gets me so angry sometimes I could hit her, the young man exclaimed."

"Well, I'll tell you what I used to do with my wife" replied the Boss. "Whenever she got out of hand I'd take her pants down and spank her".

Shaking his head the young guy replied "I've tried that... it doesn't work for me. Once I get her pants down I'm not mad anymore."
----------------------------------------------------------------------------------------------------------
There's an old couple, both in their 70's, on a sentimental holiday back to the place where they first met. They're sitting in a pub and he says to her, "Do you remember the first time we had sex together over fifty years ago? We went behind the barn. You leaned against the fence and I made love to you from behind."

"Yes, she says, I remember it well." she replies.

"OK, he says, How about taking a stroll round there again and we can do it for old times sake?"

Smiling his wife responds, "Oh Henry, you devil, that sounds like a good idea, she answers."

There's a man sitting at the next table listening to all this, having a chuckle to himself. He thinks, I've got to see this, two old timers having sex against a fence. So he follows them.

They walk haltingly along, leaning on each other for support, aided by walking sticks. Finally they get to the back of the barn and make their way to the fence. The old lady lifts her skirt, takes her knickers down and the old man drops his trousers. She turns around and hangs on to the fence and the old man moves in. Suddenly they erupt into the most furious sex the watching man has ever seen. They are bucking and jumping like eighteen-year-olds. This goes on for about forty minutes. She's yelling Ohhh God! He's hanging on to her hips for dear life.

This is the most athletic sex imaginable. Finally, they both collapse panting on the ground. The guy watching is amazed. He thinks he has learned something about life that he didn't know. He starts to think about his own aged parents and wonders whether they still have sex like this.

After about half an hour of lying on the ground recovering, the old couple struggle to their feet and put their clothes back on. The guy, still watching thinks, That was truly amazing, he was going like a train. I've got to ask him what his secret is.

As the couple pass, the guy says to them, "That was something else, you must have been shagging for about forty minutes. How do you manage it? Is there some sort of secret?"

"No, there's no secret, the old man says, except fifty years ago that damn fence wasn't electrified."
-----------------------------------------------------------------------------------------------------------
Two friends meet in the office of one of them, a notorious techno-geek.

"Hey, bud, how are ya?"

"I'm good. Congratulations, that new secretary of yours is beautiful!"

"Well, I'm glad you like her. Believe it or not, she's a robot!"

"No way, how could that be?"

"Way! She's the latest model from Japan. Lemme tell you how she works. If you squeeze her left tit, she takes dictation. If you squeeze her right tit, she types a letter. And that's not all, she can have sex, too!"

"Holy shit! You're kidding, right?"

"No, she's something, huh? Tell you what, you can even borrow her."

So, his friend takes her into the restroom and is in there with her for a while. Suddenly, he hears him screaming "Eeeeyaaaaa! Heeelp" Ooooooh! Aaaaaaah! eeeeeeeeeaaargghhhh!"

The guy says, "Shit! I forgot to tell him her ass is a pencil sharpener!"
----------------------------------------------------------------------------------------------------------
Every year at the state fair Paul entered the lottery for the brand new truck and lost. This year, he told his friend David, he wasn't going to bother and enter.

"What kind of attitude is that?" David asked. He leaned closer and whispered, "What you need, pal, is faith. Look around and see if the good Lord sends you a message."

Strolling around the fair, Paul grew more and more despondent as the drawing neared. Nothing struck him, no divine inspiration, no sign from God.

Finally, while he was passing old Mrs. Kelleher's pie stand, he glanced over and saw the woman bending down. She wasn't wearing any panties, and suddenly her ass began to glow. Suddenly a finger of flame came from the skies and without her even knowing it, used her ass as a table. The fiery finger etched a seven on each cheek.

Thanking God, Paul rushed to the raffle booth and played the number 77.

A few minutes later, the drawing was held. And once again, Paul lost. The winning number was 707.
-------------------------------------------------------------------------------------------------------
While trying to escape through Pakistan, Osama Bin Laden found a bottle on the sand and picked it up. Suddenly, a female genie rose from the bottle and with a smile said,

"Master, may I grant you one wish?"

Osama responded, "You ignorant, unworthy daughter-of-a-dog! Don't you know who I am? I don't need any common woman giving me anything."

The shocked genie said, "Please, I must grant you a wish or I will be returned to that bottle forever."

Osama thought a moment, then grumbled about the impertinence of the woman and said, "Very well, I want to awaken with three American women in my bed in the morning. So just do it and be off with you." The annoyed genie said, "So be it!" and disappeared.

The next morning Bin Laden woke up in bed with Lorena Bobbitt, Tonya Harding, and Hillary Clinton at his side. His penis was gone, his knees were broken, and he had no health insurance.
----------------------------------------------------------------------------------------------------------
Mike walks into a bar and sees Pat sitting at the end of the bar with a great big smile on his face. Mike says, "Pat, what are you so happy for?"

"Well Mike, I gotta tell ya... Yesterday I was out waxin' my boat, just waxin' my boat, and a redhead came up to me.. tits out to here, Mike. Tits out to here! She says, 'Can I have a ride in your boat?'

I said 'Sure you can have a ride in my boat.' So I took her way out, Mike. I turned off the key and I said 'It's either screw or swim!' She couldn't swim, Mike. She couldn't swim!"

The next day Mike walks into a bar and sees Pat sitting at the end of the bar with a even bigger smile on his face. Mike says, "What are you happy about today Pat?"

"Well Mike.... I gotta tell ya... Yesterday I was out waxin' my boat, just waxin' my boat and a BEAUTIFUL blond came up to me...tits out to here, Mike. Tits out to here! She said 'Can I have a ride in your boat?'

I told her 'Sure you can have a ride in my boat.' So I took her way out, Mike. Way out much further than the last one. I turned off the key and I said, 'It's either screw or swim!' She couldn't swim, Mike! She couldn't swim!"

A couple days pass and Mike walks into a bar and sees Pat down there cryin' over a beer. Mike says, "Pat, what are you so sad for?"

"Well Mike, I gotta tell ya.... Yesterday I was out waxin' my boat, just
waxin' my boat, and the most desirable brunette came up to me... tits WAY out to here, Mike. Tits WAY out to here. She says, 'Can I have a ride in your boat?'

So I said, 'Sure you can have a ride in my boat.' So I took her way out,
Mike, way WAY out... much further than the last two.

I turned off the key, and looked at her tits and said 'It's either screw or swim!'

She pulled down her pants and.....She had a pecker, Mike! She had this great BIG pecker! ... and I can't swim Mike! I can't swim!"
---------------------------------------------------------------------------------------------------------
"I'm worried that I'm losing my wife's love," the husband told the counselor.
"Has she started to neglect you?"
"Not at all," the dejected man replied. "She meets me at the door with a cold drink and a warm kiss. My shirts are always ironed, she's a great cook, the house is always neat, she keeps the kids out of my hair. She lets me choose the television shows we watch and she never objects to sex or says she has a headache."
"So what's the problem?"
"Maybe I'm just being too sensitive," the husband ventured, "but at night, when she thinks I'm sleeping, she puts her lips close to my ear and whispers, 'Die! You son of a bitch, die!'"
-----------------------------------------------------------------------------------------------------------
A woman goes into a restaurant in a small southern town out in the country. She orders the fried chicken and starts to eat. Eating too fast, she chokes on a chicken bone.

Well, these two country boys in the next booth notice she is choking, and they get up and go over to help her. The first country boy drops his coveralls and bends over, and the second country boy starts licking his asshole.

She pukes all over the place, dislodging the chicken bone from her throat. The country boy pulls his coveralls back up and says to the other excitedly, "You're right Billy Bob, that Hind-Lick Maneuver works like a charm."
-----------------------------------------------------------------------------------------------------------
A miserably married guy decides he needs some companionship, so he goes to a pet store. The salesman says, " I have a great pet for you. A toothless hamster". The guy says, "Nah." The salesman says, "But it gives great head." The guy takes it home. His wife screams, "What the hell is that thing?" He says, "Never mind what it is. Teach it to cook and then get the hell out."


So hope I haven't offended anyone, just wanted to put a smile on faces!iconicon
Regards Shelliconicon


Posted in Untitled on 07 Sep, 2010 - 9:40 pm

Hi Guys,
I've been researching again and have found some info for those who suffer from the night time hits, people have had good success with melatonin before bedtime. Some people have had great results and can manage a good 8 hrs sleep most nights in a cycle.
It is recommended to start with 10mg 30 minutes before bed time. Some go as high as 15 mg to get through the night. Helps to avoid the wake up calls. Give it 7-10 days to see if it helps you. It can be bought at health food stores but this is not the correct product (active ingredients differ), you can get a prescription from your doc if interested.
melatonin pros...cheap, no side effects, stops night time attacks for many,
cons some people report waking up grogggy.....

Let us know if you've tried it and what results you've had? Could be worth a try in addition to those who verapamil, or other preventative's are not quite as effective as required.

Regards Shelliconiconicon


Posted in Untitled on 07 Sep, 2010 - 9:01 pm

Hi Heather,
Are you on the slow release verapami? I found this info which I found quite interesting as many sufferers are on the slow release which is not as effective as the short acting tabs.

Quote"
Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
End Quote"

Headache. 2004 Nov;44(10):1013-8.

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

Hope this is helpful!
Regards Shelliconicon


Posted in Supporters tips on 07 Sep, 2010 - 1:15 pm

Just needed to add:

* Never blame the sufferer for having cluster headaches, its not their fault they suffer from such a horrible condition, they didn't do anything to get the condition, it's just one of those things that life dealt them!
* Be patient with them.
* I know all to well the frustration of not being able to help, the exhaustion and yes the pain that supporters also feel, although it's not the same physical pain that you sufferer is going through, the emotional pain that a supporter feels is all to real. You must be aware of this and also look after yourself! The supporter is there for the sufferer, but the supporter also needs support, so that's why we are here! If you need to talk, rant, rave or question anything please do so, together we are strong.

Regards Shelliconicon


Posted in Supporters tips on 06 Sep, 2010 - 10:22 pm

Hi Guys,
I thought that the best way for supporters to help, is to ask the sufferers what they need most when having an attack and in between. So to all the sufferers please be kind enough to post anything that your supporters can do to help, so as new supporters can get some idea's on how best to help you!

A few things I try to do as a supporter during an attack or cycle:

* Keep fridge stocked with Redbull (energy drinks with the combination of caffine and taurine).
* Make sure there is a constant supply of Oxygen and medications required.
* Keep stock of Magnesium, Calcium citrate, D3 and Iron.
* Have a pile of soft hand towels, ice packs, heat packs and tissues available for attacks.
*During an attack give space, but not far ( just outside room) so if your called you can be there immediately.icon
* Make Dr's Appointments
* Research and Educate myself on available treatments, medication's and options.icon
*Keep a folder of relevant medical articles and headache history so as to be able to advocate for the sufferer if needed with medical professionals. Also have contact numbers for doctor's and specialist's.icon
* Download a copy of the colleague's letter and print copies for family and friends at: http://www.ouch-us.org/chgeneral/colleagueletter.htm
* Be SUPPORTIVE (your sufferer is going through hell).icon
* Be UNDERSTANDING (try your best)icon
* Be STRONG ( don't let them see you cry).icon
* Be LOVING, COMPASSIONATE & EMPATHETIC.
* Don't hassle them to talk about it (they will talk when they are ready).icon
* Never say or think what your sufferer is going through is like a Migraine! The term headache doesn't cut it, remember that this is the most excruciating painful condition that can be suffered by a person.icon
* Give them reason's to smile, the little things are important!iconiconicon

I'm sure there are many things I've forgotten at this time, so please add your thoughts!

Regards Shelliconiconicon


Posted in Untitled on 06 Sep, 2010 - 9:24 pm

Hi Sean,
Doctors can be a little precarious when it comes to medications such as verapamil, the dosage of 360mg would be the max dosage if it was being used for blood pressure type conditions.
Maybe if you print this article from Dr Goadsby and take it to your doctor it may help.

http://www.ouchuk.org/html/news/Precriber.pdf

ABSTRACT: Some patients with long bouts of either ECH or CCH will require preventive treatment over many months, possibly even years. Verapamil and lithium are particularly
useful in this setting. Verapamil is the preventive drug of choice in both ECH and CCH. 24-26 Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, and dosages commonly employed range from 240 to 960mg daily in divided doses.
Verapamil can cause heart block by slowing conduction in the atrioventricular node.
Observing for PR interval prolongation on ECG can monitor the potential development of heart block. After performing a baseline ECG, patients are usually started on 80mg three times daily and thereafter the total daily dose is increased in 80mg increments
every 10-14 days. An ECG is performed prior to each increment. The dose is increased until the cluster attacks are suppressed, side effects intervene or the maximum
dose of 960mg daily is achieved.
Other drugs Though topiramate, sodium valproate, pizotifen (Sanomigran) and gabapentin are often used, they are of as yet unproven efficacy.

It is generally tapered down when not in cycle, the problem with this is knowing when to do this, if it's tapered to soon the beast can come back with a vengence. The combination of verapamil an lithium is also sometimes very effective for people who o not respond as well to either medication.

Endep is mainly used for nerve pain aspects, depending on the dosage it can also be used for it's antidepressant effects and as depression is such a major factor with sufferers, many medical professionals believe it to be beneficial despite the fact that there has been no studies proving it's benefits in Cluster headache treatment.
I'd have to say that in our experience I am not a fan, it does have some very serious side effects when used with other mediication's commonly used for clusters.

ABSTRACT FROM: http://www.medicinenet.com/amitriptyline/article.htm
DRUG INTERACTIONS: Amitriptyline should not be used with monoamine oxidase inhibiting drugs. High fever, convulsions and even death can occur when these two drugs are used together. Epinephrine should not be used with amitriptyline, since together they can cause severe high blood pressure. Alcohol blocks the antidepressant action of amitriptyline but increases its sedative effect. Cimetidine (Tagamet) can increase blood levels of amitriptyline and its side effects.
SIDE EFFECTS: Sometimes troublesome side effects include fast heart rate, blurred vision, urinary retention, dry mouth, constipation, weight gain or loss, and low blood pressure on standing. Rash, hives, seizures, and hepatitis are rare side effects.

Amitriptyline is used with caution in patients with seizures since it can increase the risk of seizures. Amitriptyline is used with caution in patients with prostate enlargement because of the risk of increasing retention of urine due to the inability to urinate. Amitriptyline can cause elevated pressure in the eyes of certain patients with glaucoma.

Antidepressants increased the risk of suicidal thinking and behavior in short-term studies in children and adolescents with depression and other psychiatric disorders. Anyone considering the use of amitriptyline or any other antidepressant in a child or adolescent must balance this risk with the clinical need. Patients who are started on therapy should be closely observed for clinical worsening, suicidal thinking or behavior, and unusual changes in behavior.

If amitriptyline is discontinued abruptly, dizziness, headache, nausea, and restlessness may occur. Withdrawal symptoms may occur when even a few doses are missed. Therefore, it is recommended that the dose of antidepressant be reduced gradually when therapy is discontinued.

Hope this has been helpful! Wishing you PFD.

Regards Shelliconicon


Posted in Untitled on 06 Sep, 2010 - 4:30 pm

Hi Val,
No problems at all! I hope you have a fantastic trip and good luck with the surfing. iconiconI'm about 9 hrs away from where your heading, so unfortunately I won't be able to catch up however I'm here in cyber space if there is anything I can help with.icon Wishing you pain free times and a safe journey.icon

Hi Heather,
I'm so sorry you are having such a hard time at the moment,icon you are in my prayers. So wish I had that magic wand, I'd definitely be waving it in your direction! Hope you find some relief soon, my fingers are crossed for you.icon

Regards Shelliconicon


Posted in Untitled on 06 Sep, 2010 - 4:09 pm

Awesome news Sean! iconiconSo glad your getting some relief and keep up that great attitude, I know sometimes it's hard to see that light at the end off the tunnel but it certainly makes a difference to life if you have hope. The little things in life become huge when you've had to miss them for a while during a cycle, so enjoy, life is sweet! icon Wishing you pain free times always!

No probs Pete! It never seems to cease to amaze me the extent of just how toxic some of these medications can be when taken in conjunction with others, seems to be a never ending cycle. You take a medication to help one condition which intern then creates side effects that require more medications, no wonder shares are highly priced for pharmaceutical companies, It's all about the $$$icon. Hope you are pain free soon. icon
Regards Shell

iconiconicon


Posted in Untitled on 02 Sep, 2010 - 2:19 pm

Hi Irene,
Please refer to my above post Re: Oxygen, Imigran as abortives (what you take when an attack hits) as apposed to preventatives such as Verapamil or Lithium ( which you take daily to lessen the amount and severity of attacks). Prednisone can be used in high dosages of approx 80mg a day for a week then tapered down over the next 7-10 days to abort a cycle for some people, however others find that once tapered the beast comes back with a vengence! However this would at least allow the preventatives to start working, hopefully. Wishing you PFD! There are a couple of other options such as increasing your PH levels with magnesiun, calcium citrate, D3 and iron or the clusterbuster alternatives but Oxygen would be the first line of abortive along with any other treatments anyway that would probably help you the most. Try 25LPM rather than the 8-10LPM or 10-15LPM suggested in most oxygen info, as this will abort the attacks much quicker, It can also be used for shadows with no negative side effects.
Regards Shelliconicon


Posted in grumble grumble on 02 Sep, 2010 - 1:59 pm

Amazing how the world works, I guess it's all about $ after all. For the cost of medications to be so high yet the cost of things such as alcohol and cigarettes to be so low when long term these are going to lead to increased medical costs anyway!iconicon


Posted in Untitled on 02 Sep, 2010 - 1:54 pm

Hey Guys,
Firstly Pete please be careful using the Ketorolac in conjunction with the Triptan's, It is an NSAID (mostly anti-inflammatory benefits) but also a Vaso-constrictor and the Triptan's work on the same basis by being a vaso-constrictor. My concern stems from Cory having been given the same meds and getting a secondary form of Raynauds Syndrome from medication toxicity from too many vaso-constrictors. He has been suffering extreme pain from this for months now, can not stand any temperature changes at all, cant even leave the house if its cold. His hands and feet change color dramatically to a dark grey, in severe cases Raynauds can lead to Gang Green and amputation of limbs! He had been on the Triptans for 20 years before this occurred but as soon as the Ketorolac was introduced this was the outcome. Please be very Careful!!! Iiconicon Hope you are Pain free soon. iconicon

Sean,
I have found a Legal Supplier of some of the materials required if you do decide to go down the clusterbuster path. I'm so glad your going to try the injection's, please do try to split them, it's a trial and error thing at first to see if 2mg or 3mg is your magic number but they are much more effective than the sprays and the tablets and why would you put extra into your body if its not completely aborting the attacks. Also please push your doc, no demand that he gives you a prescription for Oxygen, It really is a life saver for most if used correctly. The prednisone does have some nasty side effects for some people but if it is used as an abortive at approx 80mg a day for a week and tapered dramatically over the next 7-10 days it can abort a cycle or allow a preventative such as Verapamil to start working. One of the biggest things that we have realised over the years is that what works for one cycle may not work for the next and vise versa. Wishing you PFD!
Regards Shell iconicon


Posted in Untitled on 02 Sep, 2010 - 1:14 pm

Hi Barb,
Welcome to the nut house! I'm sure that's how so many of us feel when no one can comprehend whats going on with Ch, bonus is everyone here knows exactly where your coming from. One of the major similarities I get from alot of sufferers is that as soon as you get to know your beast it decides to do a back flip and change patterns, I guess the only way to stay one step in front is to have a couple of options available for treatments. Are you using Pure oxygen, at a high flow rate of at LEAST 15 LPM, using a Non Re Breather Mask, started at the first sign of an attack. Some for whom oxygen totally failed them at 15 LPM, found success at 25 LPM. It really has become a life saver for many, at 25LPM most attacks can be aborted within 3-7 minutes.
A relatively new theory revolves around maintaining your arterial PH at a level which makes you less susceptible to attacks. It goes as follows:
Magnesium, Zinc, Calcium Citrate and Vitamin D, washed down with fresh squeezed lemonade, up to 4X daily. Cory did 2-3X a day this last cycle and it had a substantial benefit in number and intensity of his hits. It's cheap, no real side effects to sweat, may be worth a shot for many others who are stuggling.
There certainly does seem to be a link in regards to magnesium, calcium, iron and Vitamin D and sleep disorders with the cluster's and RLS. I understand your being hesitant with the medical community's lack of knowledge, but please consider seeing a neurologist as a cluster attack should not last more than 3 hrs and there are some other conditions that mimic clusters which need investigating. I hope the beast eases up on you soon, Wishing you pain free times.
Regards Shelliconicon


Posted in Untitled on 31 Aug, 2010 - 2:20 pm

Hi Peter,
Busting refers to ending the cluster headache cycle, some people have not had a cycle for over ten years since they first busted! Harvard Medical have been running studies with some fantastic results and the folks over at cluster in conjunction with leading neurologists are applying for FDA approval in America so these treatments can be legalized for use with cluster headaches. There are some legality issues but for us here in Aus it is legal to buy, sell and possess just not consume, so to actually get into any trouble you would have to be caught ingesting the treatments. Also there is very little risk of the treatments showing up on Blood tests. There is heaps of info on it at clusterbuster.com, the main ways this is achieved is through Psyclobin= mushrooms, LSD and LSA from Seeds such as Hawaiian Baby Woodrose Seeds and Rivera Corymbosa Seeds. They have been used for centuries by Sharmans in tribal rituals and for medical treatments. Hope this is helpful.
Regards Shelliconiconicon


Posted in Untitled on 30 Aug, 2010 - 5:47 pm

Hi Sean,
Welcome to the club no one ever wants to join! That being said, I saw on your other post that you have a Drs appointment coming up soon, you need to talk to your doc about a 2 pronged attack on these attacks. A good prevent and a good abortive. Verapamil and Lithium are popular prevents.( A med you take daily, while in cycle, to lessen the number and intensity of your attacks). Prednisone, a steroid, is often used as a transitional therapy whilst the preventatives kick in. For abortive's, please read the oxygen info link on the menu. Turns a 90 minute attacks into 6-8 minute attacks but it must be used at the correct flow rates to be successful. At least 15 litres per minute (25 is preferable) through a non-rebreather face mask, A real life changer for most who use it. We se a LOT of Chers being prescribed pill form of imigran even though it is generally ineffective. The injectable form on the other hand kicks in strong and quick. Imigran injectables are a life saver they abort most attacks within 3-5 minutes, they can be split into 2 or even 3 from one 6mg ampule, it's a trial and error process but it will save on the cost and also allow you to treat more attacks. Energy drinks such as Red Bull with the combination of caffine and taurine chugged at the first sign of an attack many can abort a full attack or at least reduce the intensity for you, another great emergency abort.

Some CH'ers have been reporting that "busting" has shut down entire cycles for them cold. It's an approach that is making quite a splash - here's a video talk by one of our fellow CH'ers on the subject:

http://vimeo.com/10918637

or for alternative therapies check out:

www.clusterbusters.com

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) :

http://www.plainboard.com/ch/chtherapy.pdf

Here is one for high flow oxygen for the Dr also:

http://www.mhni.com/faqs_high_oxygen.aspx

ALL NEW!! HEADACHE 2008-2009, The new 72 page Headache 2008-2009:

http://www.headachedrugs.com/

The people here, their information, experience and support are truly awesome! May your journey through life be a little easier now that you have found this wonder. Please read all you can, information is power. Goodluck with it all and if you ever need to chat just drop us a line. Hope this is helpful!

Regards Shell iconicon


Posted in Untitled on 30 Aug, 2010 - 3:05 pm

Hi Guys,
Just thought I'd mention The nasal sprays are for a box of 2 at $24.50 or if on medicare $5.40 a box of 2, you are allowed 6 boxes every three months on the medicare PBS, The imigran injections are not Covered on the PBS / medicare at all, even after you pass your safety net which is about $1000 so the cost of these is around $140 a box of 2 regardless.

The oral imigran is not a recommended medication for cluster headaches as it takes to long for the body to absorb, Imigran should be used as an abortive only. There are many other medications such as Verapamil, Prednisolone, and Lithium which are much more effective as preventatives.

The Imigran 6mg injections can be split into 2 or 3 for both migraine and cluster headache aborts, the only reason that they come in 6 mg ampules is because the drug companies determine the dosages, in some other countries they can be purchased in 4mg doses as well. I'm working on a petition to get Imigran Injections scheduled onto the PBS so the cost would only be $5.40 per box of 2, if on medicare. I will keep you all updated on my progress.

To add to the original post to get a script in Australia you must see a Dr, the cost of these appointments vary from $45 to $65 , if you then claim the medicare rebate you get about $35 dollars back until you reach your safety net ( about $1000 out of pocket on Drs appointments/ tests), then you receive the whole amount back. Or alternatively some medical practices Bulk Bill medicare and the appointments are at no charge, but not all area's have bulk billing medical clinics.

There is also a safety net on Prescription medications this is 52 Scripts per year at $5.40 each, every repeat is also charged at $5.40 until you reach the 52 then if the medication is a scheduled medication on the PBS you receive it for free, this goes by the calendar year. For all out of pocket medical costs/medications after the first $2000 you can claim 20% back on your tax Eg. If your medication costs you $5000 a year, you can only claim 20% of the remaining $3000. You also must have received income and paid tax to lodge a tax return to be eligible to claim this back.

Hope this has been helpful.
Regards Shelliconicon


Posted in suicide headaches on 23 Aug, 2010 - 2:52 pm

Hi Angee,
Welcome to the club no one ever wants to have to join! The people here are very understanding and supportive, you are no longer alone. There are some fabulous sources of information on cluster headaches around. It may be worth printing out some of the info on the site as many doctors are unaware of the severity of cluster headaches. There is a great letter for colleagues, family or friends who want to understand what your going through at: http://www.ouch-us.org/chgeneral/colleagueletter.htm
There are some other options in treatment available which may help such as redbull type energy drinks (with the combination of caffine and taurine) if consumed at the first sign of an attack, some people find they reduce the length and severity of an attack. The other big help is Oxygen, please check out the O2 tab on the menu. Please remember that information is power! There is no cure but there is certainly treatments out there that can help.
Are you seeing a neurologist? Its very important to have access to a well informed doctor who has knowledge of cluster headaches. I wish you pain free times and goodluck with your journey, If you have any questions or just need to vent feel free and drop us a line.
Regards Shelliconicon


Posted in Untitled on 20 Aug, 2010 - 10:34 am

Welcome Trav!
If you have time start a new topic, drop us a line to introduce yourself and tell us as much or as little as you want about your experience of this horrible condition. You're right there is lots of information here, the people are very compassionate and understanding! Information is power, so arm yourself with as much info as you can. If you have any questions fire away, if you want to chat or vent do so, you are not alone anymore! Welcome again, good luck with your journey and wishing you pain free times!
Regards Shelliconiconicon


Posted in Untitled on 17 Aug, 2010 - 1:14 pm

I found this information at :
http://www.americanheadachesociety.org/assets/Grosberg.pdf

ABSTRACT:

The trigeminal autonomic cephalalgias (TACs) include cluster headache, the paroxysmal hemicranias and short-lasting neuralgiform headache with conjunctival injection and tearing (SUNCT). Each of these disorders occurs in an episodic and chronic form. All of them have in common the occurrence of unilateral pain in the distribution of the first division of the trigeminal nerve and ipsilateral autonomic features.
short-lasting neuralgiform headache with conjunctival injection and tearing (SUNCT) syndrome.

The differences between cluster headache and the other trigeminal autonomic cephalalgias are the duration and frequency of daily attacks and their responses to particular treatments. Cluster headache typically lasts from 15 to 180 minutes and occurs one to eight times daily; the paroxysmal hemicranias are brief (2 to 45 minutes), but occur more frequently (one to 40 attacks daily). Cluster headache
occurs more frequently in men, while episodic paroxysmal hemicrania usually affects women.

The other main factor concerned with differences between the two are the pain levels, the paroxysmal hemicranias are considered moderate to severe pain where as cluster headache's are considered severe to excrutiating / intolerable.

Regards Shellicon


Posted in What age did you get CH? on 12 Aug, 2010 - 9:17 pm

Alison,
That great news! Professor Goadsby is a world renowned expert in the field of headaches, he has recently been linked to finding the cause of cluster headaches.
You can read the article or watch the footage of his interview at:
http://news.bbc.co.uk/2/hi/health/380497.stm
I was under the impression he was still in London, if he is taking consults in Australia he would be rated as the number one expert in Australia, and I'm sure a lot of sufferers here would benefit from his expertise. If you have any info on how to contact him, I would really appreciate it? I'm so glad you guys are getting some where with all of this.
Wishing you luck and PFD.
Regards Shellicon


Posted in Orphanet journal of rare diseases! on 12 Aug, 2010 - 2:20 am

Hi Guys,
Thought you might find this interesting!

Cluster headache

Aurthors: Elizabeth Leroux and Anne Ducros
Centre d'Urgences Céphalées, Hôpital Lariboisière, Paris, France
Orphanet Journal of Rare Diseases 2008, 3:20doi:10.1186/1750-1172-3-20

The electronic version of this article is the complete one and can be found online at: http://www.ojrd.com/content/3/1/20

© 2008 Leroux and Ducros; licensee BioMed Central Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract
Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5–1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. Alcohol is the only dietary trigger of CH, strong odors (mainly solvents and cigarette smoke) and napping may also trigger CH attacks. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH is associated with trigeminovascular activation and neuroendocrine and vegetative disturbances, however, the precise cautive mechanisms remain unknown. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings. The disease course over a lifetime is unpredictable. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

Disease name and synonyms
Other terms for cluster headache (CH) are erythroprosopalgia of Bing, ciliary or migrainous neuralgia, erythromelalgia of the head, Horton's headache, histaminic cephalalgia, petrosal neuralgia of Gardner, sphenopalatine, Vidian and Sluder's neuralgia, and hemicrania periodica neuralgiformis. In French, it is named algie vasculaire de la face, somewhat a misnomer since CH does not primarily involve a dysfunction of arteries or veins.

Definition, diagnostic criteria and forms
Cluster headache is a primary headache disease like migraine or tension-type headache. By contrast to secondary headaches, in which the pain is symptomatic of an underlying brain, cranial or systemic disorder, primary headaches are due to spontaneous activation of nociceptive pathways. CH is characterized by recurrent attacks of short-lasting excruciating pain accompanied by signs of autonomic dysfunction, as described in the second version of the International Classification Headaches second edition (ICHD-II) criteria presented in table 1[1]. The patient must have had at least five attacks of severe or very severe unilateral orbital or supraorbital and/or temporal pain, lasting 15 to 180 minutes if untreated. The headache is accompanied by one ipsilateral autonomic symptom among the following: conjunctival injection and lacrimation, nasal congestion or rhinorrhea, forehead and facial sweating, eyelid edema, miosis and ptosis. In the absence of autonomic signs, CH can be diagnosed if a sense of restlessness or agitation is present during the attacks.

Table 1. Diagnostic criteria for cluster headache according to the International
3.1 Cluster headache
A. At least five attacks fulfilling B through D
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15 to 180 minutes if untreated
C. Headache is accompanied by at least one of the following:
1. Ipsilateral conjunctival injection and/or lacrimation
2. Ipsilateral nasal congestion and/or rhinorrhea
3. Ipsilateral eyelid edema
4. Ipsilateral forehead and facial sweating
5. Ipsilateral miosis and/or ptosis
6. A sense of restlessness or agitation
D. Attacks have a frequency from one every other day to eight per day
E. Not attributed to another disorder

Classification of Headache Diseases II
CH is the most common type of the trigeminal autonomic cephalalgias (TACs), which include paroxysmal hemicrania and SUNCT (Short Unilateral Neuralgiform headache with Conjunctival injection and Tearing). It is divided in episodic (3.1.1) and chronic (3.1.2) forms [1], as detailed in table 2. In 80% of cases, the disease is episodic and may present with one or two periods per year, or even may go into remission for many years before development of another cluster period. In about 20% of CH patients the disease is chronic [2]. These patients have ongoing attacks for one year or more, without more than one month of remission. These refractory patients are difficult to diagnose and manage, and need to be referred to a headache specialist.

Table 2. ICHD-II criteria for episodic and chronic cluster headache
3.1.1 Episodic cluster headache
A. All fulfilling criteria A through E of 3.1
B. At least two cluster periods lasting from 7 to 365 days and separated by pain free remissions of > 1 month.
3.1.2 Chronic cluster headache
A. All fulfilling criteria A through E of 3.1
B. Attacks recur for > 1 year without remission periods or with remission periods lasting < 1 month.

Epidemiology
The prevalence of CH can be estimated at approximately 0,5 – 1.0/1,000 [3-12]. Table 3 summarizes the epidemiological studies on CH. Many of these studies are biased by the sample chosen and by the difficulties of diagnosing CH by mailed questionnaires or telephone interviews. In a tertiary care headache clinic, CH was diagnosed in 2.73% of patients. There is a clear male predominance in CH, but it has been estimated to be decreasing over the years [13], maybe due to increased recognition of the disease in women [14]. CH is a condition affecting young adults, first attacks usually occurring in the third decade. It is probably under-diagnosed and unrecognized; a significant diagnostic delay has been reported in most patients [15,16]. CH in children is rare, but a few cases have been reported [17], the youngest patients being three years old [18]. Symptoms often decrease after age of 70 years. Heavy smoking has been frequently documented amongst CH patients [19].

Table 3. Epidemiological studies of cluster headache
Country(A) Diagnosis confirmed(B) Age(C) Sex(D) Population Sample(E) Affected(F) Prevalence per 100 000(G)
A: Sweden(10) B: Yes C: 18 D: Men E: 9803 F: 9 G: 92
San Marino(3) Yes All Both 21792 14 69
USA(6) No All Both 6476 26 401
San Marino(7) Yes All Both 26628 15 56
Norway(5) Yes 18-65 Both 1838 7 381
Sweden(11) Yes All Both 31750 48 151
Italy(8) Yes 18-65 Both 6500 13 200
Italy(9) Yes Over 14 Both 10071 21 279
Germany(4) Yes 18-65 Both 3336 4 119
Germany(12) Yes 25-75 Both 2291 2 150

Clinical description: how to recognize cluster headache

Duration and frequency of attacks
Cluster headache attacks are unilateral, severe, short-lasting (15 to 180 minutes) and recurrent (1 every other day to 8 per day) [1]. This special pattern is very important to recognize the cluster headaches and to differentiate them from migraine attacks. A patient describing a pain lasting less than three hours, severe and localized on one side of the head, coming back at specific times of the day or during sleep, must be asked if symptoms like tearing, eye swelling and nasal congestion are present on the other side. The fact that the attack ends after one or two hours must not be attributed to a success of standard analgesics, which are not useful in CH.

Pain description
A prospective study on clinical characteristics of CH has been published by Bahra et al. [2]. Pain is described mostly in the first trigeminal branch territory, on one side of the head only and almost always the same side (rarely, attacks may switch the location). Pain may be centered on the eye but may also be periorbital and temporal, sometimes extending to the maxillary, ear or even occipito-cervical region. Some patients describe the pain as radiating to the teeth, thus they may first consult a dentist. As to its severity, CH is one of the most painful conditions known to man (worse than giving birth according to female patients). It is described as excruciating and intolerable. Patients compare it to a white-hot needle or knife being pushed into the eye, the eye being crushed or ripped of the orbit. Suicidal ideations may be expressed during the attacks. The nickname of the CH among patients is "The Beast", a term suggesting an animal hiding in the shadow, attacking in a terrible and unpredictable way. Pain rises abruptly over a few minutes. It also ends rapidly. In severe chronic forms or in episodic forms with numerous daily attacks, there may be a continuous discomfort on the affected side [20], but usually CH patients are completely asymptomatic between attacks.

Dysautonomic symptoms
Parasympathetic hyperactivity signs include ipsilateral lacrimation, redness of the eye and nasal congestion. The affected side of the face may be red and sweaty. Sympathetic hypoactivity is demonstrated by the combination of ipsilateral ptosis and miosis (droopy eye and smaller pupil on the affected side) during attacks. The combination of ptosis and miosis on one side is called Claude-Bernard-Horner syndrome (CBH). Persistence of CBH signs after the end of the attack in episodic CH should alert the clinician to suspect underlying lesion in hypothalamus, brainstem, paravertebral sympathetic chain or carotid. Proper investigations should be undertaken: brain magnetic resonance imaging (MRI), chest computerized tomography and carotid ultrasound.

Autonomic signs are very prominent in certain patients, but may be subtle or even absent in 3% of patients [21]. They can be unrecognized because of the pain ("I close my eye, I cry because I'm in pain"). In case of uncertainty, the patient can be asked to observe these specific signs during the attack.

Ictal behavior
Physical activity seems to partially alleviate the pain in CH. During the attacks, patients tend to be restless. They may rock from side to side, hit their heads, hit objects with the fist, or even hit their head against the wall [22]. This behavior is so typical of CH that it is accepted as an official criterion in the ICHD-II [1]. Indeed, it is possible to diagnose CH without any dysautonomic sign if the behavioral criterion is satisfied. This restless attitude may help to differentiate CH from migraine, where patients are quiet and avoid any movement. CH patients are cognitively alert, but may also be irritable and aggressive. There is no mental slowing or fatigue, as it may be seen in migraine patients.

Cyclicity
CH shows circannual and circadian cyclicity. Peaks have been described around solstices, in relation to changes in daylight duration [23]. Attacks can happen at a precise time during the sleeping cycle, with dramatic regularity reported by patients. This cyclicity is not observed in all CH patients and is not included in the ICHD-II criteria, though most experts find it very suggestive of CH when present.

Triggers
Alcohol is recognized as the only dietary trigger of CH. Nitroglycerin has been used to trigger attacks for diagnostic purpose (therefore, e nitrates should be avoided during bouts). Strong odors (mainly solvents and cigarette smoke) and napping may trigger CH attacks. It is surprising that all triggers are effective only during bouts. In between periods, patients may smoke and drink alcohol without triggering attacks.

Diagnostic delay
There is a significant delay in diagnosing CH (reported median delay of three years [16]), though there is an improvement as compared to the 1960's when a diagnostic delay of more than 20 years was not infrequent [15]. Up to 30% of patients have previously undergone many investigations and seen dentists, ENT (ears, nose, throat) surgeons, ophthalmologists, even neurologists, without being diagnosed. Up to 16% may have undergone dental, sinus or eye surgery [16]. The periodicity of attacks makes the diagnosis difficult and sometimes suggests an infectious cause. Prednisone can be prescribed for sinusitis and have a positive effect, falsely confirming an erroneous diagnosis. Some patients do not seek medical advice once the bout has ended by itself.

Other features
Though aura is not frequent in CH [24], up to 14% of patients report aura symptoms, with transient visual, motor or sensory disturbances preceding the facial pain [2]. In chronic CH, auras have been reported in 20% of patients [20]. Nausea, vomiting, photophobia and phonophobia can be observed in approximately 50% of patients, and must not discard the diagnosis of CH if other criteria are fulfilled. A shift of the affected side may be observed within a bout or between two bouts in 15% of patients [2]. Case reports of "CH sine headache" have described patients with episodes of unilateral facial autonomic dysfunction without pain [25,26], but this is very rare.

Etiology: a role for the hypothalamus, but many uncertainties
The exact cause of CH is currently unknown. The first hypotheses on CH, inspired by the effects of vasoactive substances in CH (dilators causing attacks, constrictors ending them) were based on the neurovascular theory. An initial dysfunction or inflammation of the blood vessels in the parasellar or cavernous sinus area would activate the orbital trigeminal pain pathways. Indeed, activation of the trigeminal-vascular system is present, but whether it is a cause or consequence of CH is not clear. It is not specific for CH, since it is also very prominent, and much better demonstrated, in migraine. Later on, the periodicity of CH has oriented studies toward the hypothalamus, with more fruitful results. Positron emission tomography (PET) studies have show an activation of the posterior hypothalamus during CH attacks [27], reinforcing the idea that the hypothalamus may be the CH generator. Voxel-based morphometry studies demonstrated an increase in the gray matter volume of the posterior hypothalamus in CH patients compared to controls [28]. Success of hypothalamic deep-brain stimulation (DBS) [29] and emerging evidence for hypocretin receptor gene involvement also strengthen that hypothesis. Abnormal blood levels of prolactin, testosterone, thyroid stimulating hormone (TSH), and cortisol may be linked to perturbations in the activity of the hypothalamic-pituitary-adrenal axis.

Numerous studies have examined blood levels of other substances in CH patients during attacks, bouts and remissions. Histamine, prostaglandins, opiates, neuropeptids, amines, nitric oxide, monoamine oxydase, serotonin and cytokines values may show significant differences compared to those in non-affected controls. The list is long but, so far, none of these studies allowed a coherent understanding of CH. The parasympathetic activation is thought to be mediated by the trigeminal-autonomic reflex in the brainstem circuitry,via the seventh cranial nerve. The sympathetic innervation pathway to the pupil and eyelid is composed of three neurons and there is no clear demonstration of the site involved and mechanisms underlying the dysfunction in CH. The reason for the male predominance of CH also remains to be clarified.

Genetics
Initially, CH was not thought to be a genetic disease. With official criteria published and the increasing recognition of the disease, a genetic aspect of CH has been identified. Cases of twin pairs affected by CH have been published [30-32]. Studies using large twin registries have shown that monozygotic twins present a higher concordance rate for CH (2/12 pairs) than dizygotic twins (0/25 pairs), indicating the existence of genetic factors, but monozygotic twins can also be concordant or discordant for CH, confirming a role for environmental factors [11,33]. Family studies of CH patients' cohorts have shown a familial aggregation in 7% to 20% of patients, and a relative risk for first-degree relatives between 14 and 39 [34-36]. The transmission mode has still not been established. Some studies have suggested an autosomal dominant way with incomplete penetrance [37], while other described an autosomal recessive transmission [38]. So far, no X-linked pedigrees have been published. No susceptibility locus has been identified. Much work has recently been done on the HCRTR2 gene (hypocretin receptor 2) polymorphism [39,40], suggesting a role of this gene in CH susceptibility. Hypocretins are secreted in the hypothalamus, a structure clearly involved in CH. All these findings suggest that genetic factors do play a role in CH [41,42], though, so far, the transmission mode remains to be established and the contribution of individual factors to be clearly understood. The HCRTR2 gene is a promising research area.

Diagnostic methods
Diagnosis of cluster headache is based on clinical criteria and exclusion of a secondary cause. A first attack suggestive of CH must always be thoroughly investigated, and carotid dissection has to be properly excluded either with doppler ultrasound or angio-scanner and magnetic resonance angiography of the neck vessels [43]. When the history is typical with numerous periods, attacks and no interictal abnormalities on neurological examination, MRI is not mandatory. Imaging studies in CH patients are most of the time normal, but lesions can be detected in secondary cases. An association with pituitary tumors has been suspected [44]. Any refractory case should undergo MRI study to exclude a treatable cause. The pituitary, orbit, and trigeminal pathway have to be specifically examined with computed tomography (CT) and MRI.

Differential diagnosis
Primary headache diseases
Migraine
The only way to differentiate CH from migraine is the clinical history. The questionnaire is of paramount importance. The global picture must be taken into account. In case of doubt, further observation of attacks by the patient is warranted. Migraine and CH are both very incapacitating and share common features, but they also differ on specific points. Migraine is much more frequent than CH (15% of the general population versus 0.05%–0.1%), affects mainly women, and starts earlier in life, often during adolescence or around menarche. Migraine attacks occur at regular intervals over months, without long remission periods, though in some patients seasonal triggers may cause more frequent attacks (allergies, stress). Migraine attacks last longer (more than four hours and can go on for more than 24 hours) [2]. Attacks may have a prodrome with hunger, fatigue, irritability, and start more progressively. Patients tend to stay quiet and avoid any movement. The pain may begin unilaterally but during the attack it may radiate to the whole head. Many patients have attacks on alternate sides. Pain is moderate-to-severe, but is not described as intolerable or excruciating. The presence of nausea and/or photophobia and phonophobia is a main clinical criterium [2], but it is not specific for migraine, as CH can also be accompanied by nausea, photophobia and phonophobia in up to 50% of patients [2]. Unilateral photo- and phonophobia may be more specific of CH and trigeminal autonomic cephalalgias in general [45]. In up to 30% of patients with migraine, autonomic signs like lacrimation and nasal congestion are present. Both CH and migraine can be triggered by alcohol, and relieved by triptans, but CH necessitates parenteral routes of administration. Stress, foods (like chocolate) and menstrual cycle, are not typical triggers for CH. Finally, some cases are difficult to diagnose and should be referred to a headache specialist. In some patients, CH and migraine can coexist, and treatment must be chosen accordingly. Table 4 presents a clinical comparison of CH and migraine.

Table 4. Comparison of migraine and cluster headache
Migraine Cluster headache Common characteristics
No periodicity Periodicity Incapacitating
(except with menses) (annual and daily) Alcohol is a trigger
Attacks > 4 h Attacks < 3 h Triptan effect (spray and inj)
Female > Male Male > Female
Prostration, quietness Restlessness, agitation Dysautonomic symptoms
(typical in CH, but may occur in migraine)
Pain moderate to severe Pain is severe
Pain can be bilateral Unilateral
Nausea and Nausea and photophobia NB The two types of
photophobia typical can happen but not typical headache may coexist
Dietary and hormonal No dietary trigger except alcohol
triggers

Other trigeminal autonomic cephalalgias (TACs)
Paroxysmal hemicrania (PH) is more frequent in women (80–90%) and differs from CH by the shorter length and higher frequency of attacks [46-48]. Absolute response to an adequate dose of indomethacin (150 mg per day or more) confirm the diagnosis of PH [2]. A continuum between paroxysmal hemicrania and CH has been suggested by some authors, due to an overlap in clinical criteria and anecdotal reports of CH patients responding to indomethacin. Indomethacin treatment in any refractory case of CH, or cases with frequent and shorter attacks, has been suggested by Matharu and Goatsby [49].

SUNCT syndrome is a very rare entity [50]. Its prevalence is estimated around 6,6 per 100,000 [51]. Attacks are very short and occur up to 300 times a day.

Hemicrania continua may be confused with chronic cluster headache, and if there is a doubt, a trial with indomethacin should be made, HC being highly responsive to this drug [52,53]. Table 5 presents the main characteristics of TACs.

Table 5. Trigeminal-autonomic cephalalgias (TACs)
Cluster headache Paroxysmal hemicrania SUNCT
Sex ratio M: F 3: 1 1: 2 2: 1
Duration of attacks 15–180 min 2–30 min 5–240 sec
Frequency of attacks 1/2 days to 8/day 5–40/day 3–200/day
Periodicity Episodic form may Episodic/ Episodic/
be seasonal Chronic Chronic
Treatment Verapamil Indomethacin Anticonvulsants
Lithium
Steroids

Other ICHD-II categories
Trigeminal neuralgia (TN) and CH both involve paroxysms of unilateral and severe pain, but specific traits are found on the questionnaire [2]. TN is more frequent in women in their fifties or older. Attacks are centered on maxillary and/or mandibular area, they are more frequent, briefer, electric-like and are triggered by touching specific zones of the face or buccal cavity. Eating, laughing, talking, shaving or brushing the teeth may all trigger the shocks. Patients may loose weight because they avoid eating. There is no clustering in periods, and mostly the pain goes on until the treatment starts. TN responds very well to carbamazepine. Both diseases may occur in the same patient as cluster-tic (tic standing for tic douloureux, a French term). Table 6 summarizes the clinical manifestations helping to distinguish TN from CH.

Table 6. Comparison of cluster headache and trigeminal neuralgia
Cluster headache Trigeminal neuralgia
Age Starts around 20–30 60
Sex Male Female
Pain localization Orbital, temporal Nasal, maxillary, dental
Attack duration 15 to 180 minutes Seconds, but repeated shocks
Pain character Knife-like, stabbing, lancinating Electric shocks, burning, stinging
Trigger zone No Yes
Neurovegetative signs Yes No
Refractory period after attack Not typical Yes
Frequency per day 1–8 Highly variable but may be dozens or more

In an elderly patient with exclusively nocturnal attacks, hypnic headache may be diagnosed, but it is very rare and pain is usually bilateral, diffuse and without autonomic signs. Attacks occur exclusively during sleep [54].

In doubt, the clinician may ask the patient to complete a diary of the attacks, to precise their duration, autonomic symptoms, triggers, response to treatment, and daily cyclicity. The importance of history taking in headache medicine cannot be overemphasized.

Causes of symptomatic CH
Features suggesting a secondary CH are: persistent or worsening pain, abnormal signs on neurological examination, and a first period after 50 years old. An underlying cause has sometimes been found in a patient with typical CH features [55,56]. Benign intracranial tumors like meningiomas and neurinomas, but also carcinomas and metastases, have been reported. There seems to be an overrepresentation of pituitary tumors in CH patients [44], and a role of prolactin has been suggested in these cases. Orbital tumors or infections have been reported. Sinusitis may present with symptoms typical for CH. Arteriovenous malformations and aneurysms, if strategically located, may cause CH symptoms. In a first episode, carotid dissection has to be suspected and ruled out (it also can produce Claude-Bernard-Horner syndrome, and the pain may respond to triptans) [57]. Any case of refractory CH deserves a brain MRI. Some experts even recommend MRI for every CH patient, to avoid unnecessary treatments if a treatable cause is found.

Genetic counseling
As familial cluster headache is rare, thus, considering the limited knowledge on the genes involved and the transmission mode, genetic counseling is not routinely part of the CH management. Familial cases should be identified and, if possible, the family referred to a specialist in cluster headache. There is no known preventive treatment for CH, or curative intervention, but affected patients may inform their families of the CH symptoms, thus any delay in diagnosis among relatives to be avoided. Antenatal diagnosis is not applicable

Management
Acute treatments are efficient to alleviate pain during attacks. Prophylactic treatments aim at reducing the daily number of attacks. No curative treatment for CH is currently available. Guidelines (evidence-based recommendations and good practice points) for the treatment of CH are developed by the European Federation of Neurological Societies (EFNS) [58].

Acute management of attacks
Because of the excruciating character of the pain, rapid-acting treatments are preferred for acute management of attacks [59]. The oral route of administration is too slow and is rarely used. Inhaled, subcutaneous and intra-nasal treatments are preferred. The pain in CH is often underestimated by the medical community. Interictally, patients appear normal. In most cases, witnessing a CH attack is convincing enough, but not possible for every practitioner. Adequate treatments must be provided, and a nihilistic, observational approach should be absolutely avoided.

The two most efficient acute treatments are subcutaneous sumatriptan and high-flow inhaled oxygen.

Sumatriptan is a serotonin 5HT1 B/D agonist, acting on blood vessels with a vasoconstricting effect, and centrally on brainstem receptors. Subcutaneous sumatriptan 6 mg (Imiject, Imitrex) has been shown to efficiently relieve the CH pain and dramatically improve the management of patients [60]. After the injection, the patient may feel a rush of heat and chest tightness that disappear in a few minutes and are followed by rapid relief of the pain. Intra-nasal sumatriptan [61,62] and zolmitriptan [63] may be tried if patients refuse to use injections. Absolute contra-indications to subcutaneous sumatriptan include pregnancy, lactation, coronary artery disease, stroke, and peripheral artery disease. Relative contra-indications are age (under 18 or over 65), an isolated controlled vascular risk factor, Raynaud phenomenon, allergy to sulfa medications, treatment with a serotonin recapture inhibitor (SSRI). Maximal doses for 24 h period (sumatriptan 12 mg subcutaneous or 40 mg intra-nasal, zolmitriptan 10 mg intra-nasal) have to be explained to the patient to avoid dangerous side effects, such as coronary or distal artery spasm. Surprisingly, CH patients do not develop medication-overuse headache (MOH) with triptans as often as migrainers do [64]. They may use regular sumatriptan for many months without developing a different type of headache. As MOH is more frequent in CH patients with a history/diagnosis of migraine, these patients must be carefully monitored for MOH, especially if CH is chronic and refractory [65].

Inhaled oxygen with high-flow (10 to 15 l per minute) 100% normobaric oxygen breathed through a mask is efficient and useful especially when contra-indications to triptans exist [66,67]. The device is not easy to carry around, and not always reimbursed by health security services, depending on the country. The efficacy of oxygen has been recently re-examined and confirmed. There are no contra-indications or limitations for the use of oxygen.

Ergotamine and dihydroergotamine have been used in CH [68]. They must not be combined with triptans on the same 24 hour period, have the same contra-indications as triptans (without additional efficacy), therefore are rarely useful.

Intra-nasal application of topical lidocaine may be tried in refractory CH cases or in case of contra-indications to triptans. Its efficacy is not well proven.

Topic cocaine was used in the past, but abandoned because of equivocal efficacy, side-effects and risks of dependency.

Prophylactic treatment
The aim of prophylactic treatment is to reduce the frequency of attacks during the bout. Continuous use of prophylactic treatments in episodic CH is not recommended, since there is no proof that it prevents the next bout. Therefore, the dose may be progressively decreased after two or three months, or after the usual known duration of the bout. The prophylactic treatment should be restarted if attacks reappear. In patients with few attacks per week responding to acute treatment, prophylactic treatment can be withheld. In chronic CH, treatments are used for a long term epriod, and a low attack rate has to be reached (always considering the potentially serious and incapacitating side effects).

The calcium-channel blocker verapamil remains the main treatment of episodic and chronic CH [69,70]. Doses range from 360 mg to 960 mg per day, and the maximal tolerated dose should be reached before concluding about efficacy. Side effects are weakness, fatigue, lower extremities edema, and conduction heart block. An electrocardiogram should be performed at the baseline and for every increase in the dose when it exceeds 480 mg per day [71].

Greater occipital nerve blocks are used, based on the connection between this nerve and the trigeminal circuitry [72]. One randomized study showed that this technique may end a bout, or, at least, may diminish the number of attacks per day [73]. More evidence is needed to recommend this procedure [74], but it is widely used by experts [75,76]. The block is performed with a long-acting injectable steroid, sometimes combined with a local anesthetic. Different combinations have been described. The needle is inserted midway between the mastoid and the occipital protuberance, until it touches the occipital bone (sub occipital technique).

Topiramate has shown a convincing efficacy in CH [77,78]. Usual dosing is 100 mg per day (range 25 mg to 200 mg). Side effects include numbness and tingling in the extremities, weight loss, and neuro-cognitive difficulties, all reversible after drug discontinuation.

Lithium is used in chronic CH [69,79,80]. Doses range from 600 to 1200 mg per day. Blood levels must not exceed 0,9 mEq per liter, and thyroid and renal function must be monitored. Side effects include tremors, insomnia, fatigue, nausea and blurred vision. Intoxication may be severe and has to be suspected quickly if nausea, confusion, rigidity and difficulty to walk appear. Because of these side effects, lithium is used sparingly, in selected cases only.

A short course of decreasing-dose prednisone (starting at 1 mg/kg) may be used to treat a bout refractory to verapamil (however, recurrence is frequent with the decrease of the dose). Long-term side effects of corticotherapy restrict the use of prednisone in chronic CH.

Methysergide acts on serotonin receptors. Doses range from 6 to 12 mg per day. Some patients do respond very well to this drug but a major limitation is that triptans and ergots cannot be used simultaneously because of the risk of serotoninergic syndrome. The main side effect is nausea, sometimes severe. Methysergide can be considered if oxygen alone is used as an acute treatment. The main complication is retroperitoneal, pulmonary or cardiac fibrosis after prolonged use. This mandates one-month drug-holiday after six months of use, then methysergide can be started again. Methysergide is not available in United States.

Valproic acid [81], pizotifen, gabapentin [82,83], baclofen [84], and melatonin [85,86] have shown some effect in CH prophylaxis and may be used in selected patients as a second-line therapy.

Surgical approaches
Destructive approaches like trigeminal section, thermocoagulation of gasserian ganglion, glycerol rhizotomy [87,88] and radiosurgery [89-92] of the trigeminal nerve have shown variable results and irreversible complications like anesthesia dolorosa.

Hypothalamic deep-brain stimulation (hDBS) has shown a convincing benefit in some refractory patients in series totalizing a few dozens of cases [93-96], but can be completely inefficient[97], and has potential serious complications. Its mechanism is not well understood[98] and no controlled studies are available.

Neurostimulation of the greater occipital nerve has recently been described [76,99-101]. It is less invasive than DBS but costly; its long-term effects are unknown.

Non-pharmacological approaches like massotherapy, physiotherapy and acupuncture have not been adequately studied in CH.

Prognosis
CH has a very unpredictable course. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form. There are no known factors for chronicization of the CH. Total remission of the disease has been described. With aging, attacks often decrease and active CH is rarely seen after age of 75 years.

Conclusion
CH is a primary trigeminal-autonomic cephalalgia responsible for recurrent unilateral short-lasting attacks of excruciating orbitotemporal pain. The cause of cluster headache is not known and there is no unifying hypothesis to explain all the clinical particularities of this disease. About 10% of CH patients have a familial form and the existence of genetic factors has been confirmed. The hypocretin receptor gene may be involved, but implication of other genes can't be excluded. In the absence of any radiological or biological marker, diagnosis relies upon clinical history. Patients are often misdiagnosed as having secondary headaches due to sinus, dental or eye disorders or as having migraine, leading to inadequate management. No curative treatment currently exists, however efficient treatment do exist to shorten painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Ongoing research is very active. Deep-brain stimulation and occipital nerve stimulators are promising options for refractory patients but are used currently in an experimental setting. The current pathophysiological focus is on the hypothalamus. The combination of imaging techniques and genetic studies may help us to better understand this terrible and fascinating condition, ultimately leading to improvement of the care and quality of life of these patients.
Abbreviations:
CH: cluster headache; ICHD-II: International Classification Headaches second edition; TAC: trigeminal-autonomic cephalalgia; SUNCT: Short Unilateral Neuralgiform headache with Conjunctival injection and Tearing; CBH: Claude-Bernard-Horner syndrome; HCRTR2 gene: hypocretin receptor 2 gene; MRI: magnetic resonance imaging; ENT: ears, nose, throat; PET: positron emission tomography; hDBS: hypothalamic deep-brain stimulation; TSH: thyroid stimulating hormone; PH: paroxysmal hemicrania; EFNS: European Federation of Neurological Societies; SSRI: serotonin recapture inhibitor; MOH: medication-overuse headache.
Competing interests:The authors declare that they have no competing interests.
Authors' contributions:The two authors equally contributed to this review article. They read and approved the final version of the manuscript.
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Posted in Untitled on 11 Aug, 2010 - 11:13 pm

Triptan Exposure During Pregnancy and the Risk of Major Congenital Malformations and Adverse Pregnancy Outcomes: Results from the Norwegian Mother and Child Cohort Study
Katerina Nezvalová-Henriksen, MS; Olav Spigset, MD, PhD; Hedvig Nordeng, MS, PhD


Posted: 04/23/2010; Headache. 2010;50(4):563-575. © 2010 Blackwell Publishing

Abstract and Introduction
Abstract
Objective.—To evaluate the safety of triptan therapy during pregnancy.
Background.—Information on the safety of triptan therapy during pregnancy is scarce and only available for sumatriptan, naratriptan, and rizatriptan. No associations with congenital malformations have been detected so far, but one study found a significant association between sumatriptan exposure during pregnancy and prematurity.
Methods.—The study population consisted of 69,929 pregnant women and their newborn children for whom data on drug exposure and pregnancy outcome were available. Information on triptan therapy and potential socio-demographic and medical confounding factors was obtained from the Norwegian Mother and Child Cohort Study. Information on congenital malformations and other adverse pregnancy outcomes was obtained from the Norwegian Medical Birth Registry. The datasets were linked via the women's personal identification number. Pearson's ?2 tests and logistic regression analyses were used to identify associations between triptan therapy and pregnancy outcome.
RESULTS.—NO SIGNIFICANT ASSOCIATIONS BETWEEN TRIPTAN THERAPY DURING THE FIRST TRIMESTER AND MAJOR CONGENITAL MALFORMATIONS (unadjusted OR: 1.0; 95% CI 0.8–1.3, adjusted OR: 1.0; 95% CI 0.7–1.2) or other adverse pregnancy outcomes were found. Triptan therapy during the second and/or third trimesters was significantly associated with atonic uterus (unadjusted OR: 1.5; 95% CI 1.1–1.9, adjusted OR: 1.4; 95% CI 1.1–1.8), and blood loss >500 mL during labor (unadjusted OR: 1.3; 95% CI 1.1–1.5, adjusted OR: 1.3; 95% CI 1.1–1.5).
Conclusions.—Triptan therapy during pregnancy was not associated with an overall increased risk of congenital malformations. It cannot, however, be excluded that a difference in the risk between triptan use and individual or rare congenital malformations may exist. A slight increase in the risk of atonic uterus and hemorrhage was associated with triptan use during the second and/or third trimesters. Although the present findings are reassuring, confirmation in independent studies is warranted.

[Medscape 8/10/10}


Posted in Untitled on 11 Aug, 2010 - 11:07 pm

Please be aware,
Steer Clear When Possible; Planning Ahead Critical

Current guidelines from the American Academy of Neurology recommend avoiding valproic acid in pregnant women, if possible, because of the risk for major congenital malformations as well as poor cognitive outcomes.

"In my group, we steer away from [valproic acid] unless it is the only drug that works," Sandra L. Helmers, MD, MPH, who was not involved in the study, noted in a telephone interview with Medscape Neurology.

Because switching drugs during or just before pregnancy is difficult, a forward-thinking approach is important, she added.

"This new study again emphasizes how important this issue is in not only women who are pregnant but women of childbearing age. That means you have to plan ahead, from day 1 — that means teenage women with epilepsy — and discuss this with them," added Dr. Helmers, who is an associate professor of neurology and pediatrics at Emory University School of Medicine in Atlanta and a member of the American Academy of Neurology.

Dr. de Jong-van den Berg and coauthors and Dr. Helmers have disclosed no relevant financial relationships.

N Engl J Med. 2010;362:2185-2193.

[Medscape, 8/10/10]


Posted in Untitled on 11 Aug, 2010 - 5:33 pm

No Problems! BOC Healthcare saved me from a nervous braekdown. There are a few other things in regards to Oxygen that I feel its imperative to mention, The method in which it is used and the flow rates will determine its results, if administered incorrectly or not at atleast 15 liters/per minute flow rate the results will not be anywhere as effective.

Some suggestions to help are:
Use the O2 as soon as you feel it coming on, Speed is the name of the game. The sooner you get on the O2, the better the success rate. Stay on it for 15 to 20 minutes. If it has not killed the hit, stop using it. Try to get through 10 minutes without the O2, and then hit it again. If the O2 does not work the first time, the second time is almost Kills the attack.

Don't run out, always know how long your oxygen supply will last and how long it will take to get a resupply. At 12 lpm an E tank will only last 44 minutes. An H tank will last 8.3 hours. Here is a calculator to determine how long your oxygen supply will last:
http://www.monroecc.edu/depts/pstc/backup/paraoxca.htm

Once you have the O2, make sure you have the right accessories for proper delivery. Most can be bought off ebay relatively cheeply compared to hire costs. Don't count on anybody else to provide the Right Stuff.

If you can't get a re-breathing mask you can use the nose prongs, Do not put it in your nose. Put it in your mouth, close your lips around it, and inhale. Open your mouth to exhale, and then close your lips, again, around it to inhale. Breath only through your mouth. Do not inhale any “room air” only the O2.

If you can't get a moisture bubbling bottle make one By using an empty clean jar, with a tight fitting lid, drill two small holes in the lid, the size of the O2 air line. Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar. Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid. Seal around both hoses with a silicon type sealant. Put up to 5cm of distilled water (can be bought from chemist) into the jar. No more than ¼ full or when then O2 is on the water will come up the tube to the mask. Some people find putting ice into the moisturizer helps the O2 work quicker! If you do this only use distilled water to make the ice cubes.

If you are using a re-breather mask, hold it firmly to your face with the palm of your hand. When you inhale, place your index finger and thumb over and the holes on the side of the mask (the ones with the rubber valve over them), this is to make sure the valve seals fully over the nose and mouth. When you exhale, just lift the finger and thumb, keeping the mask to your face by the palm of your hand, let the air out of those holes. Alternatively you can lift the mask and exhale directly into the air but this cuts down on the purity of O2.

Leave the O2 on for 5 minutes AFTER the last of the pain is gone even if you have aborted an attack in 10 minutes or less just to be sure, if you take it off to soon, the attack could restart.

AS with most things each person is different so what may work in one cluster may not work for the next, so if it doesn't work keep persevering, its trial and error, but you will figure it out eventually and O2 will become a very effective abortive for you!
Please remember I'm not a Doctor or a Respiratory expert, this is just from experience and educating myself to get the best results from our oxygen.

Good luck! Keep trying!
Regards Shellicon


Posted in Untitled on 11 Aug, 2010 - 3:59 pm

Hi Guys,
Reading your post has brought the fact that there is little information in regards to restless leg syndrome treatments to my attention. Cory suffers from this as well and the doctor can only suggest Valium to counteract the RLS, however the side effects experienced whilst on Valium for him do not justify the little benefit that Valium does give.
How do you manage Restless Leg Syndrome? What medication's have you tried or found have helped? Any idea's on this would be great, Its another of those " too hard basket" things for our doctor at the moment.

In regards to the mineral deficiencies and diet change you are definitely onto something, there is a lot of people in America that have been working on this theory and seem to be having some good results, lowering the PH content in their diets has also been beneficial in reducing the frequency and intensity of attacks.

Regards Shelliconicon


Posted in What age did you get CH? on 11 Aug, 2010 - 2:54 pm

Alison,
I just wanted to send you and Jack my best wishes, sounds like your definitely on the path to an accurate diagnosis. Information is power and to help Jack through this awful situation its imperative to continue on with the research you've been doing! Well done for being so supportive and caring, If only all parents were as conscientious as you, the time many sufferers have to endure being undiagnosed would be a lot shorter. Hope you get the answer's you need soon.
Regards Shelliconicon


Posted in Untitled on 10 Aug, 2010 - 11:28 am

Hi,
I conatacted Air Liquide on recommendation of our doctor, I was told to send a letter/prescription via fax with flow rates, straight or pulse flow, type of mask required and all contact details. I faxed letter/presciption on the Moday arvo, Tuesday I received a phone call from them saying they did not have availability of the masks but were working on it and everything should be organized by the Thursday. Then I received a call from a manager saying " Air Liquide will not be able to supply you with oxygen, the flow rates at 15 liters per minute are not something the company feels would be responsible for us provide. There are to many risks involved". I explained that the Oxygen therapy was a treatment for cluster headaches and required the flow rate to be that high for it to be effective, I offered to sign any documentation to take the responsibility off them. The response was " we will not be able to supply unless you have a respiratory physician provide us with a document specifying that you require this to breath", again I mentioned cluster headaches oxygen therapy and explained to even get a referal to respiratory physician your O2 stats must be below a certain amount whilst breathing normally, seeing that was not the case it was not possible to even get access to the letter they were asking for, his reply was " I'm sorry but the bottom line is Air Liquide do not supply oxygen for this oxygen therapy for cluster headaches, only for respiratory purposes and even if you did get the respiratory physicians letter we would not feel comfortable providing oxygen to you at such high flow rates as the risk factors are just to high, Goodbye" and he hung up on me. I was devastated so requested help from another suferer who told me that Boc supplied all her requirements. I called BOC and they were FANTASTIC, nothing was to much trouble, they were aware of Oxygen therapy for cluster headaches and it was all set up in our home within 48 hours! The phone number for Boc Health care is 1800 050 999 they have outlets in all states of Australia and New Zealand.
Regards Shellicon


Posted in Supporters Means? on 05 Aug, 2010 - 5:37 pm

To all the wonderful supporters out there,
Living with cluster headache pain has to be one of the most difficult things one must deal with and for a supporter its a different pain, It's so hard to watch our loved ones going through this without being able to help. A supporter is vital to a sufferer and you're just being there for them is very important. It's not easy being a supporter, and we need each other to stay strong and in the right frame of mind.

This is what supporters means to me:
S. omeone who is loving, compassionate, caring & empathetic
U. nderstanding of the sufferers condition and sympathetic to the
P. ain being experienced, even when they cant help.
P. utting the sufferer first, even when exhausted themselves,
O. rganising medications and Doctor's appointments when the sufferer cannot,
R. emembering that the little things are important and
T. rying their best especially when frustrated & feeling useless.
E. xplaining to and educating others about cluster headaches,
R. ealising that there is hope, together we are strong and can
S. mile with the ones we love when the clusters gone!

But being a good supporter isn't just about understanding what your clusterhead is going through and figuring out how to be there for them. It's also about understanding what you need - and making sure you get it. Lots of sleep. A night out with the girls. A bubble bath. Going out for a walk. Whatever your thing is. Being happy, upbeat, and emotionally stable is probably the best gift we can give to our cluster sufferer. And if you're unhappy it doesn't work. So don't forget to look after yourselves and remember communication is really important! Bless your hearts for your dedication.....you're doing a good job!
Just offering support and cyber hugs. I know the frustration and how you feel. Feel free to post. Feel free to ask. Feel free to rant here when you need to - sometimes it helps.

My best wishes to you all,
Regards Shelliconiconicon


Posted in Untitled on 04 Aug, 2010 - 12:50 am

Welcome Irene!
So glad you have found this wonderful site too! The people here will understand where you are coming from, share their experiences and info and also offer you support if or when you need it. Heather has given you some wonderful advice, she is a very wise lady.
You didn't say if your doc was a headache specialist or even a neuro. A good specialist can help you sort out all of the different kinds of headache pain, some of which mimic clusters (like occular migraines) so finding one could be really helpful.
You have access to some great advice , resources and information, however the correct diagnosis is absolutely critical to an effective treatment regimen. Meds which work for one headache type are worthless for,another. General practitioners and even neurologists do not have the experience or knowledge base to deal with headache diagnosis. A headache specialist is your best bet at relief.
Once you start looking, you will find there IS ALOT of information/advice/knowledge out there, some very good, some not so, some may work for you, others may not! Unfortunately, due to the rarity of this disease, you may find yourself teaching whatever doctor you have about the disease. Many sufferers have had to go through several doctors and neurologists to find one that is knowledgeable and that will work with them in their treatment. Knowledge is power and you are your own best advocate in your medical treatment. READ, READ, READ all you can and then go read some more!
A two pronged approach seems to work the most effectively for many. 1= A good preventative medication. This is one you take daily while on cycle to reduce the frequency and the intensity of your hits. 2 = A good abortive. such as imigran and oxygen to give you a physical and mental break from the threat of attacks. Read the oxygen info tab as it must be used correctly or it's worthless. Energy drinks like Redbull, V, Mother or any which contain the combo of caffeine and taurine can abort or really reduce an attack for many if swallowed at the first sign of an attack. Imigran injections or nasal sprays are effective for many. The pills tend to be less effective as a CH builds faster than your body can absorb them.
Wishing you all the best through your journey!
Regards Shell iconicon


Posted in Untitled on 03 Aug, 2010 - 11:38 pm

Hi Martine, Tom,
I wish I had an answer for you! The closest thing I can suggest is check out the children's section (its within the supporters section) of clusterheadaches.com the US site. I don't like to have to send you elsewhere for info, however In america they have quite a number of children diagnosed at young ages and may be able to give you the help you require. My heart goes out to you guys, I know what its like to support an adult with CH but to have this horrific condition as an innocent child is just devastating!icon
If there is anything we can do to help or you just need a shoulder to cry on let us know.
Wishing you both Pain free days and sending my prayers to you!
Regards Shellicon
Please let us all know how you guys are doing, All the best, Goodluck!


Posted in Untitled on 03 Aug, 2010 - 11:19 pm

Hi Val, Welcome!

Oxygen in Australia is only available with a prescription for medical use, unless it is prescribed for respiratory physicians there are no subsidy's for cost so the user must pay the full amount privately. The letter/ prescription from the doctor must have your details, contact number, address, the flow rates liters per minute (needs to be at 15L/per min) , amounts of usage eg. 6 attacks up to 20 mins per attack and straight flow or pulse flow. Its a good idea to get the doc to also include that you need a non re-breather mask. There are a number of company's which will supply but the one we use is BOC they are suppliers all over Australia, the costs associated for rental are as follows:
Regulator: $19.95 per month
Oxygen bottle rental E cylinder (largest avail): $12.75 per month
Trolley rental (required by company for OHS reasons): $6.30 per month
Replacement cylinders: $15.75 per cylinder
Fee for replacing cylinder: $11.20 each time
Non- rebreather masks: $ 8.50 outright purchase price
Delivery and service fee: $51.55

You can organise to pick up or have the cylinders delivered directly with your local supplier. The phone number for Boc Healthcare is 1800 050 999.
These are the prices that were quoted to me last week.

The non rebreather masks can also be purchased on ebay for either $5 or $7 from ebay store Elite Medical Solutions Seller id is: medivac22a. The postage fee is around $6.
I would try to have it organized before you arrive as it can take some time depending on your location. I hope you have a fabulous trip to this awesome country and if you head down towards Victoria let us know! Hope this helps.
Regards Shellicon


Posted in Untitled on 01 Aug, 2010 - 1:39 pm

Hi Carolyn,
I live in Echuca and would be happy to help in anyway I can, just drop me a line and I will get back to you asap. I have sent you a private msg with my contact details.
Regards Shell

iconiconicon


Posted in Untitled on 31 Jul, 2010 - 4:24 pm

Sorry forgot to mention as the methods of imigran change so do the recommended doses per day. The maximum recommended doses are as follows:

Oral = 300mg per day Tablets
Nasal = 80mg per day Nasal sprays (4 spay packets per day)
IM = 12mg per day Subcutaneous Injections (2 x 6mg or 4x3mg or 6x2mg inj)


Posted in Untitled on 31 Jul, 2010 - 4:08 pm

Hi Heather,
No probs at all, The injections are 6mg each in 0.5ml and you get 2 per box. The recommended dosage is 2 injections per day which is 12mg ( I saw somewhere on this site that its 2 per week but that info is incorrect). The best was to get around this is by splitting the injections, some people can split them in to two others split them into three and get the same results as if using a full injection. As each person is different the amount required is also different, however the amounts do not change based on the severity of the headache eg. If you split the 6mg inj into 3 then it will have the same effect for a kip 5 headache as it would for a kip 10 headache and the time that it takes to work will also be the same. This info is from experience only! As the injections only come in the one dosage of 6 mg the way that we split them is by using the 1ml single use insulin needles. The way I do this is after opening the injections out of the box and taking the sticker off the top, I open the flap as if I'm going to screw the injector pen on, I then get a butter knife and place it under the glass lip of ampule/inj, very carefully I pull upwards to get the ampule/inj out of the blue plastic surround. I then get the insulin needles and pull out the plunger part, I place the imigran amp needle into the top of the insulin needle syringe and with the plunger push down on the black seal on the inside of the imigran carefully until I have the right amount of Imigran in the insulin syringe (I only split them into 2 so its .25ml which is a 3mg dose). I remove the imigran and tilt the insulin syringe to the side slightly so I can reinsert the plunger, you must be very careful not to push it in to quickly or the imigran will squirt out the needle. When the plunger is in just far enough to seal, I turn it upside down and flick it with my finger so all the imigran goes to the bottom and the air to the top, allowing me to then push the plunger about half way up the syringe. Then with each headache we use a subcutaneous inj ( into the fat layer just under the skin, the same as you would with the injector pen). By doing this we get 4 injections out of a kit rather than 2. If you split them into 3 then you would get 6 injections out of a kit. Which would mean you could treat all six headaches and still only have had the 12mg. It is unfortunate that they don't make the imigran in ampules (like morphine) in Australia or the injections in 2mg or 3mg doses. It makes sense to me that if you can use a smaller dose and get the same result then not only is it better for your health but also that you can treat more headaches without exceeding the recommended 12 mg a day dose. And lets not forget its heaps cheaper! We have been doing this with the imigran for many year now and it has worked very well for us, please remember I'm not a doctor. If you have any queries just drop me a line. Hope this is helpful.
Regards Shelliconiconicon


Posted in oxygen availability on 30 Jul, 2010 - 10:50 pm

Sorry guys,
I messed up and put the info in for Heather on the wrong post. Oops!icon


Posted in Untitled on 30 Jul, 2010 - 10:47 pm

Hi Heather,
In response to your request to info on Imigram injections in comparison to oral, the difference is incredible the injections work much more effectively and a lot quicker, usually they will stop the attack within 5 minutes of administering.There is really no comparison with the effects from the oral. They come in injection pens so are easy to use, many people do split them in half or thirds to reduce the cost. The amounts for each person differs but definetely check out the article about imitrex on the clusterheadache.com website. I am a supporter of a 25 year cluster headache sufferer and the injections have been our saving grace most clusters. The only down side to them is the cost, we pay $155 for initial kit with injector pen and 2 inj and then pay $143 for a box 2 refill injections. Hope this is helpful! If anyone has any queries just drop me a line. Please remember I am not a doc but am happy to give advise based on our experience or am here if anyone just needs to vent.
Regards Shelliconiconicon


Posted in Untitled on 30 Jul, 2010 - 10:41 pm

Welcome Jane,
So happy to have you here! Its amazing how communicating with others that understand can make such a huge difference to the isolation most sufferers endure before finding such a great group. Wishing you pain free days!
Regards Shelliconiconicon


Posted in Untitled on 30 Jul, 2010 - 10:35 pm

Welcome Val,
Its a great idea to bring all the injections that you require with you as the cost over here in Australia is quite high compared to what you pay at $143 a box of 2 refills.
The oxygen can take quite some time to organize so I would get it organized before you arrive so it can be delivered as soon as you arrive or just before. Oxygen in Australia is only available with a prescription for medical use, unless it is prescribed for respiratory physicians there are no subsidy's for cost so the user must pay the full amount privately. The letter/ prescription from the doctor must have your details, contact number, address, the flow rates liters per minute (needs to be at 15L/per min) , amounts of usage eg. 6 attacks up to 20 mins per attack and straight flow or pulse flow. Its a good idea to get the doc to also include that you need a non re-breather mask.
There are a number of company's which will supply but the one we use is BOC they are suppliers all over Australia, the costs associated for rental are as follows:
Regulator: $19.95 per month
Oxygen bottle rental E cylinder (largest avail): $12.75 per month
Trolley rental (required by company for OHS reasons): $6.30 per month
Replacement cylinders: $15.75 per cylinder
Fee for replacing cylinder: $11.20 each time
Non- rebreather masks: $ 8.50 outright purchase price
Delivery and service fee: $51.55

You can organize to pick up or have the cylinders delivered directly with your local supplier. The phone number for Boc Health care is 1800 050 999. Australian number, Im not sure what numbers you have to dial before from there to get international. These are the prices that were quoted to me last week. It can be paid for by credit card over the phone or on the internet so that always helpful.
The non rebreather masks can also be purchased on ebay for either $5 or $7 from ebay store: Elite Medical Solutions, Seller id is: medivac22a. The postage fee is around $6 to anywhere in Australia.
Hope this is helpful and that you enjoy your trip to our wonderful country, All the best to you.
Regards Shelliconiconicon


Posted in Untitled on 30 Jul, 2010 - 10:19 pm

Hi guys,
My name is Shell, Im 33 years old and live in Echuca, Victoria, with my two beautiful daughters and my awesome fiancee of 8 years Cory who is a cluster headache sufferer of 25 years. I have only just joined this wonderful site, so I am a newbie to the boards but definitely not new to the many aspects of what cluster headache sufferers and their families have to endure, the pain, lack of comprehension and attitudes of others of " its just a headache", also the huge financial and emotional costs. Over the years we have tried many different medications, treatments, seen numerous doctors and had more experiences with uninformed emergency department staff than I could count even if I did really want to. Cory's condition started long before we met at the age of 14 and as with many cluster headache sufferers took quite a few years to be diagnosed correctly, once accurately diagnosed as as episodic cluster headache sufferer he spent extensive amounts of time in headache clinics, huge amounts of money trying everything from medications (preventative and abortive) to chiropractors and acupuncture. He has never undergone any form of invasive surgery and we would at this time hope he doesn't have to in future. His clusters vary, the shortest was a couple of months with a couple of attacks a night at kip 7 to kip 9, the longest cluster was over 12 months with between 6 and 8 attacks a night. As he has gotten older the headaches have intensified becoming more chronic than episodic with no remission periods of more than 6 months, clusters are lasting longer, this one has been going for approx 3 months so far with 6 - 8 attacks a night all at kip 10. With each cluster the medications have become less effective most don't work at all and the pain that Cory is enduring has been horrific. He ha also been suffering from restless leg syndrome with each cluster for about the last 6 years which is also becoming more severe. During his last remission from the clusters he had severe problems with circulation to the point where 3 of his fingers went black and very cold for about 2 weeks, his left hand goes white and very cold occasionally at one stage his right hand and forarm swelled to double its original size and turned a dark grey color almost up to his elbow all of these conditions were accompanied by excrutaiting pain. The doctors think it may be raynaurd's syndrome maybe from the imigran injections but really are not sure so this has yet to be accurately diagnosed. At this time the only effective treatment that we have against each attack is imigran injections and oxygen therapy, we are trialing prednisolone at the moment again to try and abort the cluster, its having a minimal effect but results will take time. As a supporter there is not much I can do to help but I am determined to try and if I can be of any assistance to anyone else with info, advice or just someone to listen feel free to drop me a line! To all of you who suffer from this dreadful condition I wish you pain free days and to all of my fellow supporters out there keep up the good work! Thanks for your time guys, hope to get to know some of you better.
Regards Shelliconiconicon


Posted in Untitled on 30 Jul, 2010 - 9:03 pm

Hi Matt,
Welcome! So glad you found us, there is as you would be fully aware a huge lack of knowledge and understanding in respect to cluster headaches and what sufferers actually have to endure. I believe that the lack of awareness, education and isolation sufferers feel of cluster headaches is a major issue in finding helpful treatments or maybe even one day a cure. The fact that you are offering your help to others with this condition is fabulous!
Maybe if you have time you could write a post letting us know what you're experiences have been with different meds or treatments and what works for you? Just a suggestion but the more info we can get out there into this big world about this condition maybe the closer we become to helping each other through! For me knowing that there are others out there with the same issues has brought me in from isolation to hopefulness in an amazingly short time.
Regards Shelliconiconicon


Posted in Time for an upgrade on 30 Jul, 2010 - 8:40 pm

Awesome! Yet again another gift to us all, Thanks for all your hard work!iconiconicon


Posted in Why we had to remove quiz! on 30 Jul, 2010 - 8:36 pm

Hi Roger,
I have only just become a member of this wonderful site and just wanted to let you know that your efforts are appreciated greatly!iconI am very sorry that you are having to go through this ordeal icon and wanted to remind you that you're efforts are not in vain! You're compassion, effort, time and obviously considerable financial outlay gives not only cluster headache sufferers, supporters, the wider community but also medical professionals imperative information, support and a much needed connection to others who understand this horrific condition. I applaud you in supplying the Australian cluster headache community with such a integral service and am sending cyber hugs your way!
Thank you for giving us all this gift, you truly are a cluster headache hero!

Forever Grateful, Regards Shell.iconiconicon


Posted in oxygen availability on 30 Jul, 2010 - 3:17 pm

Welcome!

Oxygen in Australia is only available with a prescription for medical use, unless it is prescribed for respiratory physicians there are no subsidy's for cost so the user must pay the full amount privately. The letter/ prescription from the doctor must have your details, contact number, address, the flow rates liters per minute (needs to be at 15L/per min) , amounts of usage eg. 6 attacks up to 20 mins per attack and straight flow or pulse flow. Its a good idea to get the doc to also include that you need a non re-breather mask. There are a number of company's which will supply but the one we use is BOC they are suppliers all over Australia, the costs associated for rental are as follows:
Regulator: $19.95 per month
Oxygen bottle rental E cylinder (largest avail): $12.75 per month
Trolley rental (required by company for OHS reasons): $6.30 per month
Replacement cylinders: $15.75 per cylinder
Fee for replacing cylinder: $11.20 each time
Non- rebreather masks: $ 8.50 outright purchase price
Delivery and service fee: $51.55

You can organise to pick up or have the cylinders delivered directly with your local supplier. The phone number for Boc Healthcare is 1800 050 999.
These are the prices that were quoted to me last week.

The non rebreather masks can also be purchased on ebay for either $5 or $7 from ebay store Elite Medical Solutions Seller id is: medivac22a. The postage fee is around $6.

In response to Heathers request as to Imigram injections in comparison to oral, the difference is incredible the injections work much more effectively and a lot quicker, usually they will stop the attack within 5 minutes of administering.There is really no comparison with the effects from the oral. They come in injection pens so are easy to use, many people do split them in half or thirds to reduce the cost. The amounts for each person differs but definetely check out the article about imitrex on the clusterheadache.com website. I am a supporter of a 25 year cluster headache sufferer and the injections have been our saving grace most clusters. The only down side to them is the cost, we pay $155 for initial kit with injector pen and 2 inj and then pay $143 for a box 2 refill injections. Hope this is helpful! If anyone has any queries just drop me a line. Please remember I am not a doc but am happy to give advise based on our experience or am here if anyone just needs to vent.iconicon