Sign in

Showing all posts by "Roger"

Home  >  Forums  >  Showing all posts by "Roger"

Posted in Want to take part in a clinical research study? on 06 Sep, 2017 - 3:08 pm

I received this email today, please contact Michelle if you are interested, please don't ask questions about it here, because I know nothing about it, and Michelle isn't on the site.


Good Afternoon

My name is Michelle Cybulski and I work at Wesley Medical Research (WMR) in Brisbane as a clinical trial coordinator. Wesley Medical Research is running a cluster headache study through TEVA and we are looking for participants who might be interested in participating. Dr Nicole Limberg is the Principal Investigator. I would be grateful if you could advertise through your website.


If you or someone you know has been diagnosed with cluster headaches, a clinical research study may be an option.

Wesley Medical Research are looking for people who are 18 to 70 years old and have been diagnosed with cluster headaches for at least 12 months. If you qualify and take part, you may receive:

- Investigational study medication for cluster headaches
- Study-related care from study doctors
- Compensation for travel

This study is enrolling now. Please contact Michelle Cybulski, Clinical Research Coordinator on Ph (07) 3721 1527 or MCybulski@wesleyresearch.com.au or Jacqui on (07)3721 1548


Ideally we would be looking for patients in Brisbane, Gold and Sunshine coasts and surrounds such as Toowoomba, Dalby, Warwick etc.

Please let me know if you require any further information and if this is ok to do.

I look forward to hearing back from you.

Kind regards
Michelle


Posted in Vagal Nerve Stimulation device on 23 Apr, 2017 - 2:23 pm

Hi,

Dr Geoffrey Boyce up in Hervey Bay has just let me know that the FDA (USA) have just approved Vagal Nerve Stimulation for Episodic Cluster Headache. This is a hand held device held against the neck.
Like our NHS in Canberra, they are very conservative-and would not have released this without extensive investigation.

Hope it makes it down here soon!


Posted in The old girl returns! on 21 Jun, 2016 - 4:52 pm

Hi Dusker, Nice to see you here again smile

I had an attack for 6 weeks in January, first one after remission of over 5 years. So... it's still with me sad

My sister also gets CH, and she has tried botox this year, and so far so good...


Posted in Hello friends im so glad i found this on 10 Feb, 2016 - 4:25 pm

Hi Huddo,

Yep, we know alrighty! - it's a real bitch when it attacks, the pain is just ridiculous isnt it, and you can't describe it to anyone!

that's ridiculous of your doc to say that about O2. He obviosuly doesnt know anything about CH, or what the normal treatment is.

Many companies will supply o2 for you at home, all you need is a normal prescription. I suggest you go to a different doc!

Do try the imigran nasal spray, it aborts them for me within 15 mins if you use it right. (don't snort it)
Get a private script though, as it is cheaper and you can get more boxes. there are 2 single use sprays in a box.


Posted in new to all this mayhem on 10 Feb, 2016 - 4:19 pm

Hey, bummer that you're one of the unlucky ones to get these.... but please know there ARE treatments. Ive had them since 1993 when I was 22, and used to get one a day for a month. but in the past 14 years, my attacks have lasted 6 weeks, 1 or 2 a day, and about 4 or 5 years between clusters.
(I've had them 2 a day for the past 6 weeks now, and before that, it was 2010 that I last got them, and before that, 2006, and then 2002, and before that, they would arrive, every few months).

The problem is, most hospitals are staffed by people who have never heard of or have no experience with CH. So they don't know what to do, The next time you end up there, if it is really bad, ask for 100% pure oxygen with a non-rebreather mask, and use that for 20 mins. CH should be gone.

Also, get a script for Imigran nasal spray. Ask for a private script, 7 boxes at a time, as it is $10 cheaper with a private script than going through medicare. (And though medicare you can only pick up one box of 2 doses at a time) If you get them every day, then you'll need 7 boxes to last you 2 weeks.

Important to use the spray correctly.... if you snort it, then it doesn't work... you need to breath in normally and press the plunger mid breath, and finish the breath in after pressing it. If you snort it, it will just go down your throat and be a waste of about $7.50


Posted in hoping for help on 10 Feb, 2016 - 4:09 pm

Hi,

Sorry I missed your other post.

Have you tyried imigran nasal spray to abort them, or oxygen?

What makes you think tablets in general are worse than the mushrooms?

A hot shower would be the worst for me, I need to get into the car turn the air con on high and let it hit my temple/eye/face to cool me down while prtessing my forehead into the steering wheel and my fingers into my temple. Doing this after taking the nasal spray will usually abort an attack for me within 15 mins, before they get really bad.


Posted in New to the group on 10 Feb, 2016 - 4:05 pm

sounds a lot like how I get them... do try the imigran nasal spray, if taken early enough, it will get rid of them in 15 mins.
Expensive though, at $7.50 a dose


Posted in Enjoying a small break after 10 years on 10 Feb, 2016 - 4:03 pm

Maybe they wont come back at all!

Ivbe been having them for the past 6 weeks after a 5 year break, but at l;east I only get them for about 6 weeks at a time, and the breaks bettwen them seem to be getting longer. This time around though I have had 2 per day.


Posted in spouses/supporters of sufferers on 03 Feb, 2016 - 1:53 pm

Yeah, I just need to be left alone. There is nothing they can do really... maybe make sure the imigran nasal spray is stocked up and on hand...

While I would be devastated if my wife ever had to feel this much pain, Im glad it's me and not her.
I can handle it, so I tell her it's ok and that I can handle it (even though sometimes during a bad one I dont feel like I can keep going)


Posted in New and anxious about CH and my working life on 03 Feb, 2016 - 1:40 pm

All the best smile


Posted in Imigran and oxygen on 03 Feb, 2016 - 1:39 pm

Was he snorting the imigran or just breathing normal speed and pressing the plunger mid breath?

If you snort it, it just goes down your throat and doesnt work.

Oxygen needs to be from a tank, 100% oxygen, with a non-re-breather mask, and it takes about 20 mins to take effect.


Posted in My Experiences on 03 Feb, 2016 - 1:37 pm

Thanks for sharing that Sippffo!

I have heard about the water trick before... glad it helps you. I have also had them for about 4 weeks this time, but thankfully, I go about 4 or 5 years between them. Im currentlyu getting 2 a day, and if I don't get to them in time with the imigran spray, they can last 2 hours and be really bad. Imigran usually gets rid of them in 15 mins before they really ramp up.


Posted in Going in circles & need serious advice on 27 Jan, 2016 - 12:31 am

H Brisza dn Midge,

Simply got to your GP, tell them you have cluster headaches if that's what you believe, and get a prescription of either oxygen or Imigran nasal spray. Both will aboprt the attacks within 20 minutes if taken right at the very start of an attack, when you feel the slightest sensation of one starting.

And, Brisza, if your neurologist won't listen to you when you say it is CH, go see a different Nurologist, or just see a GP for your CH. I don't bother with Neurologists.


Posted in looking for info on 27 Jan, 2016 - 12:21 am

Hi,

There is one here:
https://ouchuk.org/do-i-have-ch/section-1-triggers


Posted in New and anxious about CH and my working life on 27 Jan, 2016 - 12:17 am

Hi ottybates

A belated welcome to the website!

You must try Imigran nasal spray. For me, it works every time, as long as I use it at the VERY first sign of a new attack. It gets rid of it within 15 minutes every time. It's faster and easier to use than Oxygen, but probably moire expensive, but of course very portable!

The only times it doesn't work, are when the attack starts while I am asleep, and I think this is because it is taken too late.

If you do choose to get some, get your GP to give you a 'private prescription' (as opposed to a medicare one), as that makes it about $10 less for the 2 dose box ($15.50 at chemist warehouse, instead of $27) and it also means you can pick up multiple boxes in one go.

I get 7 boxes per prescription, which gives me 14 doses, - a weeks worth.

The Imigran nasal spray is sumatriptan, which is a vasoconstrictor. (has the same effect as oxygen).

I know what you mean about the shadowy throbs in your forehead, I get the same thing... A few days ago, I had a weird new feeling there after a nasty attack that lasted 3 hours... it was more like a sting where the nerve is.

You should tell your managers that you are going through the CHs now, but they will stop in a few weeks. Perhaps if they are educated about CH, then they won't limit their sympathy as much. Direct them to this site.


Posted in Oxygen therapy equipment on 26 Jan, 2016 - 11:45 pm

Hi,

Have you seen the O2 suppliers page here?


Posted in christmas day for cluster for 2 years...back with a vengeance... on 19 Jan, 2016 - 3:55 pm

No, the spray has been around for years... about $14 for a pack of 2 doses.

You can also get imigran as an injection which works even faster (5 mins)


Posted in I am hopefully cured on 18 Jan, 2016 - 6:18 pm

Paul:

I have been using imigran nasal spray 2 times a day when they start, and for the past 16 attacks in the last 10 days since they started up again, it has only failed to abort them twice.

When it works, it gets rid of them within 15 mins of taking the spray. You should try it. I had to get a private prescription so that I could get 14 sprays in one go (a weeks worth)

Works heaps faster than oxygen!


Posted in I am hopefully cured on 18 Jan, 2016 - 6:14 pm

By the way, I just stood against a wall with heels, bum, shoulder blades and head touching the wall, and there was no neck stretch at all. Tried it with the other 8 people in the office here, and all reported no stretching. So I guess it's a natural healthy posture that most people have?


Posted in I am hopefully cured on 18 Jan, 2016 - 4:58 pm

Squid said:

"HAVE ANY OF YOU GUYS SEEN A CHIROPRACTOR TO CHECK/ADJUST YOUR NECK?"


No Squid, I know chiros like to think everything can be fixed by cracking necks, but a CH has nothing to do with neck bones; but everything to do with the dilation of blood vessels applying pressure to the surrounding Trigeminal nerve.


Posted in Ch help on 16 Jan, 2016 - 12:55 am

Hey,

Sorry to hear and sorry for the late reply!

Have you tried the imigran nasal spray? For me, it aborts an attach in about 10 mins, and it works 95% of the time.
The best way to use it, is to put it in the nostril on the side of the pain, block the other nostril and start breathing slowly in, Then press the spray button half way through the breath, and keep breathing after pressing to finish the breath in, and not sniff it in, as that will cause it to just go down your throat.


Posted in christmas day for cluster for 2 years...back with a vengeance... on 16 Jan, 2016 - 12:50 am

Timing sucks hey... Have you tried the Imigran nasal spray, Aborts 95% of them for me within 10 minutes.


Posted in Oxygen tank in Brisbane? on 16 Jan, 2016 - 12:49 am

Hi,

There is a page on this site for oxygen suppliers. Check it out, Personally, I'd go with http://www.oxygensolutions.com.au


Posted in I am hopefully cured on 13 Jan, 2016 - 4:40 pm

This might be worth trying?

http://www.chemistwarehouse.com.au/buy/69688/Blackmores-REME-D-Migr
aine-Headache-60



"Blackmores REME-D for Migraine-Headache contains a specially chosen combination of feverfew and B vitamins (B2, B6, B9, B12) which may help reduce the frequency of migraine headaches and associated symptoms such as nausea and vomiting when taken regularly."


Posted in I am hopefully cured on 13 Jan, 2016 - 4:24 pm

I have them back now, after just over 5 years without them. I shall try this Fever few and let you know how it goes.


Posted in on 28 May, 2015 - 9:36 am

test


Posted in MS LAARNI the scammer! on 22 May, 2015 - 11:03 am

And if you have received an alert about a new private message, but when you look, there is no private message, then it's because it was the scammer's message and we have removed it, so please stop emailing me about that too... smile


Posted in MS LAARNI the scammer! on 22 May, 2015 - 9:39 am

Oh, and please, everyone can stop emailing me about it now....


Posted in MS LAARNI the scammer! on 22 May, 2015 - 9:30 am

Hi,

Just letting you know that the member that joined yesterday and sent private messages to everyone has been deleted and their messages have also been removed.


Posted in Site will be down for a short while on 22 Nov, 2014 - 7:01 pm

All done, site is now on a newer faster server.


Posted in After Burn on 21 Nov, 2014 - 4:21 pm

Hi,
Sounds like a question for a medical professional. What is normal for one may not be for another. I know I used to be left with a regular tension headache for the rest of the day...


Posted in Channel nine story on Cluster Headaches. on 21 Nov, 2014 - 4:16 pm

Still no CH there DMA?


Posted in Site will be down for a short while on 21 Nov, 2014 - 4:14 pm

Just letting you know that this site will be moving to a new server over the weekend, and so there may be some down time.

I'll try to do it in a way that there is no down time, but sometimes things don't always go top plan.

Thanks,
Roger


Posted in why no replies on 23 Oct, 2014 - 12:17 am

Matt, Change your GP. Your GP obviously knows too little.


Posted in Channel nine story on Cluster Headaches. on 23 Oct, 2014 - 12:11 am

Hi Rachel,

No, I declined being interviewed.


Posted in Magnesium on 09 Oct, 2014 - 4:37 pm

Hi Kba78,

I'm going to try taking nodoz tablets (caffeine) every morning when I get mine back, to see if they help with the severity of the pain.

Caffeine (like imigran) is a vasoconstrictor, and so should reverse the effects of the vasodilation that causes the CH pain.


Posted in Recently Diagnosed and worried on 09 Oct, 2014 - 4:30 pm

A bit of both. It's the alcohol that dilates the blood vessels, and therefore exacerbates the pain caused by the already over-dilated blood vessels interference with the Trigeminal nerve.

Or to put it in more detail:
The nervous system controls the dilation and constriction of the blood vessel in order (amongst other things) regulate body temp. Superficial vessels can be constricted to conserve heat or dilated to release heat, and alcohol interferes with the functioning of this system, resulting in the dilation of the superficial blood vessels.

Additionally some alcoholic drinks contain high levels of chemicals like histamine (beer, red wine), which also can cause dilation of blood vessels. And dehydration can also add to the effect.


Posted in Channel nine story on Cluster Headaches. on 07 Oct, 2014 - 9:40 am

No takers for an interview then?


Posted in Channel nine story on Cluster Headaches. on 03 Oct, 2014 - 10:37 am

Channel nine is putting together a story on CH, and would like to know of anyone who may be willing to be interviewed, and/or be able to supply video of themselves going through an attack.

This is a major opportunity to raise awareness for CH, and to tell the story properly, covering what is actually like, and the best treatments, which in turn can help a lot of people currently undiagnosed due to GP unfamiliarity.

All interested, please pm me ASAP, as they are looking to get something to air next week.


Posted in why no replies on 02 Oct, 2014 - 2:13 pm

How is is going? is Relpax helping?


Posted in Great information on 02 Oct, 2014 - 2:12 pm

Thanks Chrispy, all the best with the specialist!


Posted in newly diagnosed on 18 Sep, 2014 - 4:01 pm

Yes, definitely get it looked at.
If you had the pain of a cluster headache for 1-3 days without a break, well, you'd end up in hospital after 4 or 5 hours of it, because I doubt you be able to tolerate any more than that without some medical intervention.


Posted in newly diagnosed on 15 Sep, 2014 - 10:06 pm

Hi,
Welcome to the site!

You might not be getting Cluster Headaches. Nausea is rarely a symptom, and I've never heard of sore teeth being a symptom either..

Does the eye water and the nose run only on the side that the pain is?
Does it come at the same time every day for weeks on end and then vanish for weeks or months at a time?

How long does the pain last each time you get it?

I would suggest going to a neurologist to get a proper diagnosis. Ask her/him if it could be Cluster headaches, as there might be something else going on that needs to be diagnosed professionally..


Posted in Awesome redesign on 14 Sep, 2014 - 11:35 am

If the new design looks a bit messed up at all, just hit reload/refresh a couple of times in your browser to clear any caching your browser may be doing of the old site design.


Posted in A clinical trial is underway in Ohio that could offer relief to the thousands who suffer from painful CH on 14 Sep, 2014 - 11:32 am

The story:

Doctors test device designed to 'turn off' cluster headaches


COLUMBUS, Ohio – For those suffering excruciating pain from cluster headaches, relief may soon be available from an investigational device being studied in a national multicenter clinical trial. Recently, doctors at The Ohio State University Wexner Medical Center performed the first surgery in the United States to insert a neurostimulator to provide relief from cluster headaches, which are more painful than migraines. "Cluster headache is one of the most severe and disabling chronic pain conditions known to humankind. That's why it's important to look at options to help these patients," said Dr. Ali Rezai, director of the Neuroscience program at Ohio State's Wexner Medical Center and one of the scientific developers of this technology.

During the outpatient surgery, sinus surgeon Dr. Bradley Otto and oral surgeon Dr. Peter Larsen inserted the device through a small incision in the patient's gum into the side of the face affected by cluster headaches. Autonomic Technologies Inc. developed the miniaturized, multi­channel peripheral nerve stimulator, which is smaller than an almond, to stimulate the sphenopalatine ganglion (SPG). The SPG is a nerve bundle located behind the nose and is known to play a major role in severe headaches.

"Through an incision about 2 centimeters long, we're able to place this device, then pass it around the back of the maxillary sinus, or the cheek sinus, into this area where this ganglion is situated," said Larsen, who is professor of oral and maxillofacial surgery in the College of Dentistry at Ohio State. "The device is very small, and the patient doesn't even sense that it's there."

When patients begin to feel a cluster headache starting, they hold the rechargeable handheld remote controller to their cheek to activate the stimulator to block the pain signals. The patient's physician can program the device to give the appropriate length and strength of stimulation.

"This nerve control center sits behind the cheek sinus and is involved in the transmission pathway of cluster headache," said Otto, who is director of rhinology in the Department of Otolaryngology at Ohio State. "And so by blocking or short­circuiting that involvement, we think it will help treat cluster headache. The beauty of the device is that there are no internal batteries or other structures that need to be routinely removed. So, once we make the incision in the mouth and we place this device back behind the cheek sinus, it can be left forever."


It's estimated that nearly 400,000 people in the United States suffer from cluster headache, which can happen many times each day, with each one lasting from 15 minutes to three hours. Cluster headache is often called "suicide headache" because the pain is so intense. Cluster headaches typically involve one side of the head, and are much more common in men. The headaches are so severe that they cause very disabling sharp and stabbing pain around and in the affected eye, along with pain in the nose, head and temple. Drooping eyelids, redness and tearing often accompany the eye pain, and there is no cure. "SPG interventions have been around for the past 100 years," said Rezai, including using anesthetics to block the SPG to surgical procedures to cut the SPG or chemically burning it. ""The main advantage of neurostimulation is that it's reversible and adjustable, and you're just modulating and blocking the pain signals."

In all, up to 120 patients with cluster headaches will receive the experimental device as part of the multi­center clinical trial that will last several years.


Posted in Continual use of triptans on 13 Sep, 2014 - 10:25 pm

I used it every day for my last round of them, which was about 6 weeks.

Yes, you definitely have to hit it right at the first sign of an attack. It can be a bit hit and miss, but the time it takes to abort is about a third that of the tablet.

Carry one with you ready to go, and don't wait to "see if it really is an attack" like I used to do. At the very first twinge, use the spray, the sooner you use it, the faster and sooner it can abort the pain.

It sprays in one quick puff, so what I did was put it in the nose on the side the headache is, block the other nostril, start breathing in steadily, with head tilted a bit forward, and half way through the breath, activate the spray, and keep breathing in.

You don't want to breath in so fast or strongly that it just goes down your throat.
It has a bad taste, but so what if it works right?

Your doc can write a special script that allows you to get more than the recommended amount in one visit, otherwise, you get a box, and there is just 2 sprays. My doc wrote something on the script that allowed me to get a lot more in one go.


Posted in Day 30 of ch... on 13 Sep, 2014 - 10:17 pm

Yes, it certainly sucks. At least here we all know what it's like.
Hows it going now? I know your post was from a while ago, but a bug in the site had it not showing up in any forum.


Posted in Awesome redesign on 13 Sep, 2014 - 9:53 pm

No worries, it was a pleasure icon It's been a while coming, just haven't really had time until lately.


Posted in Continual use of triptans on 13 Sep, 2014 - 9:52 pm

Hi Peter,
Not sure about the tablets, as I have always just used the nasal sprays, and I used one per day, which was higher than the allowed amount.

With the tablets, don't they take a while to kick in? The nasal spray version works after about 5-10 mins for me.

What I plan on doing when I get the headaches again, is to take Nodoz every day, to max my system with caffeine, as that constricts the blood vessels. I think that might take the edge off of them.

However, people should have no more than 400 mg of caffeine per day.


Posted in IPhone/IPad App on 13 Sep, 2014 - 11:11 am

You can now (as of yesterday's redesign) use this site on a mobile...


Posted in Oxygen Treatment on 13 Sep, 2014 - 10:56 am

Hi,
Thanks for the info... what about in Qld? can you supply here in Bris?


Posted in glad to found this site on 13 Sep, 2014 - 10:55 am

Thanks Lameve, what did your doc give you to try, and how did it go?


Posted in Hello on 13 Sep, 2014 - 10:54 am

Hey Col, Welcome to the site! I get them 4 years apart for the past 10 years, before that they were every few months. I'm due now sad


Posted in VERAPAMIL on 12 Sep, 2014 - 10:26 pm

Maybe it has been replaced with a new equivalent? But I would have thought the pharmacist would have mentioned that...


Posted in Site design re-vamp coming on 12 Sep, 2014 - 10:12 pm

No worries Kim, It's a pleasure.

The new look and design has now been launched as you can probably see. If anything doesn't look right, just hit refresh/reload on your browser a couple of times to get past any caching your browser might be doing of the old files.

The new site is fully mobile compatible now too.

If anyone finds any bugs, just post them here!

Special thanks to our designer Olivia for all her work she put in. She spent many hours on the design and coding of the html/css for the site with me.

Meet Olivia: http://www.mediatwo.com.au/about-team.php


Posted in Thought I was alone!! on 12 Sep, 2014 - 6:08 pm

Welcome to the site Kaylajess!


Posted in Just a thought on 12 Sep, 2014 - 2:26 pm

Fascinating. Mine stopped being 3 monthly and changed to every 4 years back in 2002. I'm due for a new cycle now actually, as the last time was Sept 2010. For your sake, I hope it has done something to end them. Maybe the virus altered whatever causes them... who knows. Fingers crossed!


Posted in Recently Diagnosed and worried on 11 Sep, 2014 - 3:23 pm

Definitely try oxygen. No side effects, very effective at aborting, and cheaper than Imigran.


Posted in Site design re-vamp coming on 11 Sep, 2014 - 3:10 pm

Making good progress! Only a few days until the new design is launched icon


Posted in Taking Imigran FDT on 10 Sep, 2014 - 11:56 pm

But yes, second the nasal spray!


Posted in Taking Imigran FDT on 10 Sep, 2014 - 11:55 pm

Not sure about the dissolving in the mouth.. Should ask your GP about that, or google what it might do.


Posted in Site design re-vamp coming on 07 Sep, 2014 - 9:20 pm

Just a heads up in case you get here one day and the whole site looks different and think you're at the wrong site!

The new responsive design has been created, and the site will be edited to use it over the next couple of weeks, whenever we get time, we'll work on it.

'Responsive design' means the layout re-assembles itself based on screen size, right down to mobile phone size.


Posted in hello on 04 Sep, 2014 - 11:38 am

you're welcome smile


Posted in New alternative treatment breaks cycle. on 04 Sep, 2014 - 11:36 am

Hi,
In case it gets lost in your facebook feed, I have re-posted your info here:


POSSIBLE CLUSTER HEADACHE CURE

The Prune Juice Purge.

Okay I should start by saying I am 44 years old and have had Cluster Headaches for the past 24 years. I have just had another bout of CH's and at week three into my cycle I managed to break it within one week of starting this prune juice purge. I was fully expecting it to be two to three months as per usual and it was looking like it was going to be the worst cycle for many years due to the speed that the headaches ramped up to full strength and the fact that I was having eleven attacks per night with at least three of them being 8's or 9's! But I reduced the pain dramatically in four days and then had a short tailing off period. Within a week they were gone! It was totally amazing and has led me to write this, which I believe to be a possible Cluster Headache Cure. It has also led me to believe that most of the things we do for our Cluster Headaches are just prolonging the pain and counter productive.

A few things I'd like to say before I get into this important subject, Firstly I am no doctor or medical professional in any way shape or form, upon saying that I have studied these headaches into some depth and like many of you I tell my doctor on how best to treat me. I have also tried many of the cluster headache medications, I have also done nearly all the alternative treatments with varying degrees of success including the not so legal ones! If I believed it had a small chance of taking the some pain away I would try it no matter how crazy or unscientific they may have been.

Secondly this cure or treatment is and should remain free for anyone to try. I have no vested interest in this cure other than to rid this planet of this retched disease. Nothing would make me happier. So please keep it this way and pass it on to anyone you think may benefit.

Thirdly, don't stop what you are doing in regards to your current medications or treatments, and discuss what you are proposing to do with your health care professional. This is designed to be used as an add on treatment to your regular program, also as a useful tool to keep the clusters away in the off season ( if there is an off season! ) or just a straight out treatment for the brave, for which I am not one! Or for those of you where no medications work.

Lastly like all treatments, medications and alternative therapies in regards to Cluster headaches this one may or may not work for you, such is the nature of this disease, but what I do hope as it has slowly occurred to me, is that this treatment does make sense. If the only thing that comes from this is that it helps you to make better decisions or at least able to understand the disease much better, I will be happy with this as well.

So lets get to it. This treatment is really not that difficult to do. The things you need are easy to get and are quite cheap. However it is quite an unpleasant ordeal to go through, but well worth it as I don't need to tell you. Within a day or two you should notice a change, within three or four days you should notice a massive difference in intensity, duration and number of headaches per night.

I'm going to explain the treatment in depth, but I will give the basics in a few short sentences so you can get your head around it. Firstly you purge all the contents of your intestines out using a powerful natural laxative well before bed time. No food after the purge until breakfast then eat clean all day in small portions and purge again at least two hours after the last meal. Drink plenty of water, at least two litres per day. Repeat until the Cluster has greatly reduced or totally disappeared. Basically you are flushing the digestive system out of toxins in a drastic way. Drastic times mean drastic measure as the old cliché goes. So at night your system is not working hard to digest food when the Clusters are at their strongest, which in turn stop the release of the toxin that affects the trigeminal nerve during our sleep and in turn you have a deeper sleep with less REM or dream state sleep. And hopefully you will feel better rested and have less mental fogginess in a short period of time.

What I'm putting forward as a theory is when our system becomes saturated with toxins (whatever that toxin is for you) we end up with our headaches. Lets face it we live in a toxic, man made chemical world, even if you are trying to be healthy there is little escape from our toxic environment and us Cluster sufferers either have a more sensitive system or a very toxic chemical lifestyle or a combination of both. Or it may be caused from a food that you are partially allergic to that you eat regularly but that is poisoning you, for example sugar, wheat, alcohol etc.

I will break it down to a day by day routine, starting from the day you are reading this assuming you are having your cycle now. I suggest you start this in the mid afternoon on your first day, this depends on your work as you don't what to do this treatment anywhere except at home as you will need the toilet accessible at any given moment, and I mean that seriously as you will find out soon enough. Having a journal will be helpful to us all while you are doing this as it is a new concept for the treatment of CH's and will help you to determine if it is working for you or not.

YOU WILL NEED

1 litre of natural prune juice - but buy three litres of the prune juice while you are at the shops. You will only need a big dose on day 1 and less on consecutive days.
Acidophilus tablets of good quality.
Fresh ginger to make tea for any symptoms of nausea.
Filtered water of some type but not tap water unless it is chlorine and fluoride free. A water filter is fine but change the filter if you have one already.
Make sure you have plenty of toilet paper!

Prune juice just works, that why I recommend it. It is natural and it tastes okay so it is easy to go down. Please don't use a chemical laxative to purge your system as this is counter productive to this treatment. If you know of another totally natural fast working laxative then I am not against it, it just hasn't been tested so I don't know, but if you can't get your hands on prune juice then I guess it is worth a shot.

DAY 1.

Okay so all you need to do today is prepare. At between 3pm to 4pm start drinking the prune juice over half an hour or so until the 1 litre of prune juice has been finished. There is no need to do this earlier as you don't want to get hungry before bed and succumb to any food cravings, but you do need to do it around this time to give your intestines enough time to release there entire contents otherwise you will be woken up throughout the night with urgent toilet experiences. Prepare the ginger tea buy putting 1 teaspoon of grated ginger into a cup boiling water. But don't drink this until after you have been to the toilet. Also have the filtered water next to your bed and drink it as needed as you will be somewhat dehydrated after the purge. Also drink it if you feel hungry instead of food. If you need to go to the toilet during the night I suggest you do so as this will be the most toxic stuff coming out and you don't wont the toxins reabsorbed through the bowel.

If you take medications at night take them after the purge is complete. If they need to be taken with food have a cup of clear vegetable soup, but keep in mind that the medication most probably is adding to the toxification problem within your body. But if the meds are working stick with them as you can't have to many allies with CH's. The purge will still work, it just may take a little longer.

Lastly if you want to speed up the process of getting the contents of your intestines out walking is good, but don't walk too far from the toilet! Also there is a pressure point about two finger width below your navel that when pressed in will speed thing up too. Go gentle though.

There may be no change in your CH's after your first night, or there may be a big difference. Both have been noted. But stick with it, it may take longer in you and if the pain of the headaches is not increasing then keep going. If the pain is still increasing by day 4 then stop, it will not work for you, but try a proper detoxification regime when you do not have your CH's. Although I am yet to see this treatment not work.

DAY 2.

Take the Acidophilus tablet first thing in the morning. Have breakfast and lunch as normal but remember the foods you put in will be coming out again later so eat good quality healthy foods that are full of nutrients and not adding to your problems. However eating is important as you will need the energy over the course of this treatment and you need the toxins to be coming out and the food you eat will help that process. No need to eat any food after 2pm, there is no point as it wont be digested enough to be of any benefit.

Whatever you suspect may be causing the problem eliminate it while you are purging. If you cannot work that out for yourself then stick with a very simple vegetarian diet and no processed foods.

So today you will only need 500mls of the prune juice. Also you can have it about an hour later than day 1. So drink between 4pm and 5pm. It works quicker the second time. Have the tea ready again and the water and no dinner unless you need some food with your medication.

Day 3 and 4.

Are basically the same as each other. Do what you did on day 2 in regards to food and the Acidophilus tablet. Drink about a good tea cup of prune juice at about the same time as yesterday. You should know how quickly the prune juice works by now, so time it accordingly. If hunger is a problem at night you can have some clear broth after the purge, but if you don't need to don't.

I know when the toxins are coming out of me as I feel nauseous after the purge. This is a good sign that the body is going through a cleanse. Hence the ginger tea.

The most important thing is knowing when to stop the prune juice purge. By day 4 the headaches should have reduced in strength and duration. If you feel the headaches returning in strength then you are detoxing too fast. This will be a problem in the short term, so now is the time to stop and have a day or two off before starting again if need be. When stopping the purge make sure your dinners are not demanding on your digestive system as this won't help your cause. Keep them small and easy to digest. A blended vegetable soup is always a good safe bet. This time after you finish purging is the time to be kind to your body in regards to food.

A few more days of purging is probably needed to finalise the CH cycle, but when and for how long is up to you. Hopefully you have the skills now to fight this disease head on. I'd also liked to say that this cure is still not perfected, but I'm hoping between all of us suffers we can help each other to get this treatment as good as it can be for the benefit of us, including future suffers.

On a side note another thing I think would be a complementary treatment in conjunction with this prune juice purge would be a daily colonic irrigation before bed, although I haven't tried it, I'm sure it would be of added benefit.

I have not mentioned chronic cases of CH's here as I have no point of reference, but if this rings true for you then give it a go. You really have nothing to lose. I'd imagine it would be somewhat of a larger battle for you and you will have to navigate your own course. But I believe it will work for you as well. That is really all I can say at this point, hopefully good news is around the corner.

So that's it, another weapon in the arsenal. Hopefully this all makes sense in the scheme of your CH life as it has for me. My theories are just that and I make no claim that I am at all correct. But my gut tells me I am right (sorry for the pun). I do hope that one day researchers have a look at this possible cure as an insight into the real cause of this disease. I also believe that many diseases could be treated with this treatment, but for now this community of great people suffering for this terrible disease is what I care about. So this is my gift for you, from my heart, divinely inspired during prayer while in a kip 9 cluster. Best of luck.


Posted in why no replies on 04 Sep, 2014 - 11:33 am

Hi Ali,

This is the only post you have made, so there was nothing to reply to previous to this.

If you want to engage people, you need to make a post that says something for people to reply to. People wont go out of their way to engage you, so they wont click your name and read your description and then try to think of something to say to you out of the blue. you need to introduce yourself, and ask questions, then if someone reading it knows the answer, they will reply.


Posted in Attention Australian Residents on 15 Jul, 2014 - 10:40 pm

Indeed. Thanks Trevor!
I guess I was lucky, mine started in 1993, and the first doc I went to diagnosed it right away, and put me on Deseril, which worked great as a daily preventative. Of course the next time I go them, Deseril did nothing. But at least I didn't spend years without knowing what I had.


Posted in Attention Australian Residents on 15 Jul, 2014 - 10:16 pm

Thanks for posting the youtube clip - I missed the show myself, but was planning on catching it tonight when they replay it.

They failed to mention that a person get them at least once every day for around an hour at the same time of day for weeks on end, before they go away for a few months, then come back again.

If I saw the segment and knew nothing about them, I would get the impression that people might get one CH occasionally... I think they could have described the condition a bit more, as I don't think the magnitude of the repetition of them daily was conveyed.

I wonder what prompted them to do the story....


Posted in Attention Australian Residents on 15 Jul, 2014 - 12:24 am

Great that it will be on the Project. Let's hope the increase will translate to an increase in research. I think that most people would be shocked at the amount of pain a CH produces, yet hardly anyone knows about them.


Posted in Video - Me during an attack (Warning: Graphic) on 28 Apr, 2014 - 1:01 pm

No, that video is irresponsible. Cutting your skin does not help, and a CH does not feel like delicately cutting your skin at all, it is much worse, so the video depicting skin cutting was pointless. Additionally, you were not going through a cluster headache at that time as you were completely calm in it, so you cannot say that it was done to offset the CH pain.
Furthermore, no one wants to see videos of self harming, and you doing that may suggest to someone that doing such a thing may help. Suppose a 12 year old sees this, tries it and an accident happens that severs their carotid and they die from it, how would you feel then? Are you really that unable to see possible consequences of your actions?

Post anything like that again, and you will be banned permanently.


Posted in Glad I found you on 18 Feb, 2014 - 9:21 am

I think saintpeter's account might have been 'hacked'.

I'll change his password to a more secure one.

Roger


Posted in Arterial Ligation as a cure on 03 Jan, 2014 - 11:23 pm

From one of the videos below:

"Basically what happens during a headache attack, is the blood vessel dilates, squeezes the nerve, the trigeminal nerve against the bone, and wears the mylar sheath away and short circuits the nerve, telling the brain that your face is being ripped off."

Cure:
Arterial ligation, It prevents an artery from putting presure on the nerve and in turn preventing the nerve from going into spasm, safe and simple

http://www.youtube.com/watch?v=AEw-44-dPQk

http://www.youtube.com/watch?v=FnIxSrFeB7M

http://tinyurl.com/k94pgqg


Thanks to John Dig for this info.


Posted in Batch's anti-inflammatory regimen for CH on 08 Jul, 2013 - 9:30 pm

Hi,
the 2 IP addresses that clocked up so many hits are:

46.4.79.172
78.46.104.168
5.9.121.101

They belong to an ISP in Germany: www.hetzner.de

I have taken steps to block those IP address ranges.


Posted in Cefaly - Using Tens technology on 08 Jul, 2013 - 8:37 pm

Ben and Peter,

I don't want to have to come in here and remove posts because of squabbling, as I have much better things to do.
I have revoked both moderator statuses now, because this kind of stupidity is not what this site is for. If I see any more, I will start deleting memberships.


Posted in aborted an attach cycle. on 19 Jun, 2013 - 1:47 pm

Hi,
Interesting and great news that it worked for you! Smoking would make an attack less severe because it constricts blood vessels, which is the opposite of what causes the pain in a CH. Alcohol does the opposite and dilates them which exacerbates the pain.


Posted in Hi all on 13 Jun, 2013 - 9:49 pm

Hi Toddy,
Sounds the same as me mate, I get them every 4 years now, for about 6-8 weeks. When I used to get them every 3 months or so, I'd just get one 30 minute attack per day. But now I get longer breaks between clusters, when they do come, I get several a day that last up to 2 hours and are even more painful.
It's like it doesn't want you to get away with having them less often that easily!

Have you tried oxygen as an abortive? or the imigran nasal spray? both work well for me.

Roger


Posted in A little help for loved ones please!! on 09 Jun, 2013 - 11:21 pm

Hi, and welcome to the site!

When I go through them, which for me lasts about 6 weeks every 4 years now (used to be much more frequent) I want the following from my wife:

1. To not see me behaving so pathetically because I don't want to be seen as pathetic and helpless.
2. To see me behaving pathetically so that she can understand how bad it is and thus provide sympathy.
3. To be there when I need help, like a trip to the medical centre.
4. To listen to me whinge about how bad they are

But people are different, so the best way to find out what he wants from you is to just ask him. There's nothing you can do to help anyway, so maybe the best thing you can give is reassurance that you're not affected by them, and that you are sorry he gets them, and that you'll be around if he needs you.

In my case, they don't affect our relationship at all. My wife just goes about what she does each day as if nothing is different, and she offers sympathy when I whinge about them to her. that's all I want. I don't get all dramatic about them any more, and I don't like to complain because that just brings other people's mood down around me, so I pretty much suffer in silence, but I manage a joke about them after ach one sometimes, especially if I am able to abort them with the Imigran nasal spray within 10 mins... I'd walk back into the bedroom and announce "well that was fun! miss me?"

So I think you should discuss it with him. If he says he needs you there, then it's probably so you can see how bad it is, and give sympathy. One thing people want is for others to understand what they go through. And these things are incredibly painful. Imagine an ice-cream headache, multiply it by about 5, and then make it last 30 mins to an hour non stop. You get to the point where you can't believe how it's possible to experience that much concentrated pain without there being some massive injury. So I would guess he doesn't want you to underestimate it. Let him know afterwards that you can't imagine how bad it must be, and don't talk to him during one... most people need all their concentration just to deal with it, so any outside distraction is annoying and makes it feel worse..


Posted in My 30th Birthday Present, Clusters are back after 5 years!!!! on 14 May, 2013 - 10:18 am

Well that has to suck. Just what you want for a birthday.

My cycles back in 1994 used to be 6 weeks on, 2 months off. Then strangely in 2002, they stopped, and I didn't get them again for 4 years, until 2006. Then after that 6 week bout, they went away for another 4 years, until 2010... exactly 4 years apart. So I'm not looking forward to September 2014.

So hopefully, yours will go away for another 5 years!

What do you take/do to manage them?


Posted in is this even working on 11 May, 2013 - 3:22 pm

Sonja said:
"haha no not fixed as ive just been informed via email half a dozen times re same post...."


Sorry Sonja, I forgot you might have been emailed for every test post I made.
It is fixed though, hence the stopping of the test posts by me smile


Posted in is this even working on 11 May, 2013 - 2:23 pm

Fixed it, after much googling!

Roger


Posted in is this even working on 11 May, 2013 - 2:04 pm

Hi,
someone should have told me earlier that the site was failing to post messages.

I have just been alerted by Ben via email, and am fixing it now.

Following this will be some test messages that Ben has said have failed. I'll remove them when I am finished testing.


Posted in 10 year project - mapping the human brain on 04 May, 2013 - 9:54 pm

I'm with you Ben, looking forward the the medical developments that are to come in the next 20 years, which will hopefully include an end to all headaches.


Posted in Trigger Point Therapy Workbook on 16 Mar, 2013 - 9:05 pm

hoppy-92BE506738 said:
Migral had ergotermine which opens
the blood vessels and stops the pain Asprins don't.


That's actually the opposite of what is true. CH pain is caused by the blood vessels opening and applying pressure to the trigeminal nerve. The way to stop the pain is to constrict the blood vessels, and this is what Imigran and oxygen both do.

Imigran is for Migraines and CH, because they are both caused by dilated blood vessels, hence the same drugs work on both.


Ben: Placebos shouldn't be a treatment unless they are free or cost what they should, which is next to nothing. It's all well and good to take a placebo, until someone extorts the situation to make a dollar.


Posted in Trigger Point Therapy Workbook on 14 Mar, 2013 - 11:43 pm

Ok, I have read it. Here's what I think:

It says that a lot of pain is caused by "trigger points" which are small contraction knots in muscles which can "send pain to some other site".

While neck strain can cause headaches, (and not because of trigger points in the muscles) it most definitely does NOT cause CH headaches. The evidence for this is that fact that Imigran and oxygen can abort a CH. Both work by constricting blood vessels that have dilated. Cluster headaches are strictly dilated vascular headaches, not muscle related.

This seems like homoeopathy treatment, which is stupid. (and I make no apology for calling Homoeopathy stupid). I think the author has become so obsessed with Trigger Points, that in his view, they have become a magical and all encompassing cause for any pain anywhere. "Latent Trigger Points" (whatever they may be... trigger points that are asleep and not doing what they do?) can be "cranked up" by a bad cough hangover, viral infection over exertion or too much sugar"
Yes, it wouldn't be the rise in blood pressure that comes with all these things that would cause a headache would it...

Nope, this book takes common causes and their effects, and superimposes 'trigger points' onto them, in an effort to substantiate it's claims, and in a way that would make the gullible reader go "wow! yes, that's what happens!"
eg. when you cough, you feel a pain in your head, (sharp rise in blood pressure to the head) or when you are hungover, you feel a pain in your head (dehydration)

Show me a peer reviewed paper on trigger points, with clinical studies, and I'll take it seriously, until then, crap like this should be banned, as it preys on and rips off the needy and gullible.


Posted in Trigger Point Therapy Workbook on 14 Mar, 2013 - 11:19 pm

Hey Ben,
Thanks, I'm downloading it now. Will let you know what I think.


Posted in I think I have the answer! on 13 Mar, 2013 - 2:39 pm

Ben-211EF06550, please calm down a bit....


Posted in Barry T Coles on 12 Mar, 2013 - 8:23 pm

Thanks Ben, His valued input on this site will be missed.

I hope his family know of his extended friends and comrades here, and that as such, he'll be missed Australia wide.

As per Ben's suggestion, we have renamed the O2 page in his honour, and added a footnote to that page as a memoriam.


Posted in "Breaking the Pain Chain" - Professor Paul Rolan explains how radical new approaches to chronic pain management could finally pave the way to safe, sustained relief. on 28 Feb, 2013 - 12:03 am

In windows XP, you can Right click link, choose 'save target as...'

The video file is an m4v file. The best video player to play any video including m4v files is VLC player, which you can download and install from this site:

http://www.videolan.org/vlc/index.html


Posted in Greater Occipital Nerve Block on 27 Feb, 2013 - 11:48 pm

Hey Ben,

Type up your reply in notepad and then copy/paste it into here so you don't lose it if it fails.

The reason for the error is due to there being something in your text that contains code that could be used to perform actions on the server. Sometimes, it can just be simple HTML. If you're pasting from Word, then it would carry over hidden formatting that could have that effect.


Posted in your forum name on 20 Jan, 2013 - 11:05 am

Hey all, Just thought I'd point out, that you can change your forum name if it gets some numbers/letters after it when you join.

These characters are added because someone with your forum name is already in the database, so instead of telling you it is taken, the system just adds some random characters to the end and lets you proceed.

Also, I moved the site to a new server a couple of nights ago, so apologies for the down time... there were issues with the set up of the new server. All resolved now smile


Posted in Oxygen Supplier's page on 19 Sep, 2012 - 2:31 pm

Surely there would be medical oxygen supplies in Russia? they have emphysema patients don't they?


Posted in Oxygen Supplier's page on 19 Sep, 2012 - 12:40 pm

Hi All,

Sorry I've been away lately, lots of work going on right now.

I have added an oxygen supplier page (Under Medical Info on the left) at the request of Ben and Barry, where you can all add in any supplier you know of for your state.

Thanks,
Roger


Posted in Reaching Out on 07 Jul, 2012 - 9:36 am

Hi Matt,
No problem from me with using the name, I certainly don't own any rights to it!
once you register as a charity, then you can get a .org.au domain, which I'm happy to help out with the registration of and hosting.

Great idea. Go for it!


Posted in Harry Potter gets CH on 20 Jun, 2012 - 11:53 am

http://www.news.com.au/entertainment/celebrity/harry-potter-star-da
niel-radcliffe-has-rare-agonising-medical-condition/story-e6frfmqi-122
6402419117


Maybe now, they will become less unknown.


Posted in Vote for my business? on 08 Jun, 2012 - 11:17 am

Thanks for your kind words guys, much apprecuated! Unfortunately, I was a little late discovering the grant, it turns out it ends today, and has been going for a month already. Oh well! the day's not over yet!

Dusker, have a good trip, see you back in 3 weeks.. hope the botox starts working for you!

Cheers,
Roger


Posted in Vote for my business? on 07 Jun, 2012 - 1:11 pm

Hi,

Just wondering if you guys can help my business by voting for us at Suncorp?

https://www.suncorpbankhelpinghand.com.au/vote-for/media-two-web-de
velopment/


If it wasn't for my business, the clusterheadaches site wouldnt exist.

And if you want, share it on facebook!

Thanks!


Posted in Propranolol on 18 May, 2012 - 10:11 am

Hi Lauren,
Never tried propranolol myself, but yes, it's impossible to tell if it's fading due to the meds or the natural end of the cycle... I'd save some for next time and start on them immediately, that would give a better indication.


Posted in Back to Red on 03 Mar, 2012 - 10:11 am

So good to hear you had a great time in France Heather smile


Posted in Ice Cream headache might help? on 02 Mar, 2012 - 2:54 pm

Hey all,
I was reading that once of the supposed causes of the icecream headache is that the coldness is transmitted through the roof of the mouth and causes the same blood vessels that dilate in CHs.... to constrict! - Therefore, perhaps attempting to give yourself an icecream headache when you have a CH, might actually cancel the CH out and get rid of it? if so, it would be a very quick cure....

Can someone who is currently suffering give this a go? I suggest sucking an icecube pressed against the roof of the mouth.

Or of course in the name of science you might have to eat loads of chocolate ice cream really fast!


Posted in Are we on Facebook? on 21 Jan, 2012 - 10:21 am

Don't know about that Peter, but then you don't have to put any personal info on fb.


Posted in Are we on Facebook? on 20 Jan, 2012 - 5:27 pm

Me too, I'm on Facebook every day... good way to have random and funny conversations with friends I don't see much of, keep in touch etc. And share a lot of interesting finds on the web, such as sites, YouTube view etc.


Posted in Putting It Out There on 20 Jan, 2012 - 5:22 pm

There is a survey linked on the home page that I put up yesterday after receptionving and email from RMIT about it. It's a start?


Posted in Are we on Facebook? on 20 Jan, 2012 - 11:16 am

Maybe I'll change the 'thumbs up' icon to not look so much like Facebook's....


Posted in Are we on Facebook? on 20 Jan, 2012 - 11:15 am

By the way, there is no need to be wary of FB, you can control all your privacy in it, and if you want, allow people to not even find you on it, or find you but not see any of your details unless they are a friend of yours, which you have to manually allow when they request freindship. Most people just have people they already know as their FB friends anyway.

smile


Posted in Are we on Facebook? on 20 Jan, 2012 - 11:13 am

No, not facebook, just a similar feature that I'm working on to allow members here to indicate they like people's posts, as a quick way to agree with what they said.


Posted in Passed my use by date. on 19 Jan, 2012 - 10:19 am

Thanks for your words of Praise Ben, I too do hope you'll still be around for your valuable input smile


Posted in Rebound Headaches on 16 Jan, 2012 - 10:58 am

Les,
Please keep your posts concise, stick to known facts, instead of theories that newcomers might take as fact, and stick to CH.

Also, please do not post information about threatments that are not used by qualified medical practitioners in the treatments of Cluster Headaches. Doing so will get your account removed from this site. It's ok to talk about possible causes and discuss that, but delving into remedies is dangerous territory.

Every person is different and every medication will have different effects on different people. That is why as the disclaimer at the bottom of this page says, one should consult their own doctor before *any* treatment. Your posts here seem to undermine the site's disclaimer, one which we take seriously. If you continue, I'm afraid we'll have no choice but to remove your account.

And Sara: my pleasure smile


Posted in Does pregnancy stop cluster headaches on 09 Jan, 2012 - 9:28 pm

Hi,
Regarding a poll on the topic Les, (which you have asked me to put on the site) I feel it wouldnt be worth it, and might give false suggestions. Here's why: If you get one pregnant person saying it didn't affect them, then you can be sure that being pregnant doesn't affect it. If you get some say it did, then it could be a change of diet or other factors that they changed in their life *because* they were pregnant that affected it. So a poll would not be a scientific study of pregnancy and it's impact on cluster headaches I'm afraid.


Posted in Pulling out for a while on 03 Jan, 2012 - 11:40 pm

We'll miss you Heather. Take care smile

Bon voyage!


Posted in Untitled on 03 Jan, 2012 - 11:36 pm

Yeah, Magnesium is a good remedy for RLS. So is Endone, which my doc put me on for the CH attacks. That's when I discovered the muscle relaxant in Endone completely cured the RLS as long as I was taking it, but unfortunately, Endone is soemthing you can't be on full time. A good bourbon nighcap also helps!


Posted in Untitled on 22 Dec, 2011 - 12:49 pm

I'll be spending the 25th painting the loungeroom walls (in a new colour), and then the 26th painting the bedroom walls! - We recently re did the bedroom in a japanese style... I made a new bed to suit as well!


Posted in CORNY I KNOW on 06 Dec, 2011 - 1:39 pm

It's the cluster-head family care!
Welcome to the site Kim!

Hey Dusker, when are you going to France? have you been before? I've been twice and love the country.
We're off to Norway again for my wife's 30th birthdfay in Feb... (She's from Norway) - I'm hoping the CHs wont start around that time!


Posted in Notifications on 06 Sep, 2011 - 10:54 pm

Do you think the email should contain the post as well? or part of it? what do we all think?


Posted in Notifications on 04 Sep, 2011 - 10:39 pm

Yeah, had several people request it over the past year, and I finally got around to adding it. and it meant I knew you had posted in here without having to go and check!


Posted in Starting A Petition on 02 Sep, 2011 - 11:21 pm

Actually, the government runs a petition page in their site that you can set it up on, then direct people there.

Here is one I signed recently:

http://www.parliament.qld.gov.au/work-of-assembly/petitions/e-petit
ion?PetNum=1761


Info on starting one:
http://www.parliament.qld.gov.au/work-of-assembly/petitions


Posted in Notifications on 02 Sep, 2011 - 11:18 pm

We have added a new feature. Now you will be notified by email whenever someone replies in a thread that you have participated in. Yay!

If you don't want to be notified you can go to your account settings and turn it off.


Posted in Untitled on 01 Sep, 2011 - 12:03 pm

Hi,
I don't have anything like that, but the blood vessel dilating is what causes the pain as it pushes on the trigeminal nerve. Alcohol dilates the vessels and that's what you need to stop happening in order to prevent a CH. Cafffeine and imigran restrict the vessels, as does an overdose of oxygen, which is why they are effective treatments.


Posted in Starting A Petition on 01 Sep, 2011 - 11:58 am

Hi Matt,
if you want to send me the details of the petition, - what to have in it etc, I'll add it to the site, then send all members an email about it.

Roger


Posted in lucky one on 27 May, 2011 - 4:10 pm

Hi rodrj, welcome to the site!

Yes, it sounds like you are quite lucky in the severity department. Alcohol is a vasoconstrictor, and Cluster headaches are caused by blood vessels constricting, so it will exacerbate the condition.


Posted in Untitled on 22 Mar, 2011 - 5:04 pm

Hi,
the nasal spray for me aborts them in about 10 mins, which is pretty quick, and I'm pretty happy with that. They go suddenly too, so one second I'm in immense pain, and the next, it's gone completely, and it feels as if I havent had one.

The spray works faster, because it gets to your blood stream faster. simple mechanics - you don't have to break the tablet down in your stomach and wait for it to be absorbed after it enters your intestines.

You're supposed to only have one spray per day tho, because it also affects blood vessels of the heart, as it doesnt discriminate. I've had 3 a day sometimes, but then, I always have needed about twice the dose of anything for it to be effective.

To put it plainly, the sprays enable me to get through the 6 weeks. I'd be a complete mess if I didn't have them. The tablets take at least 20 mins to enter the blood and take effect.

My GP wrote a scriopt that allowed me to pick up all the repeats in one visit, instead of having to go to the chemist every second day (there are only 2 doses per box)


Posted in Have a laugh on 02 Mar, 2011 - 3:05 am

icon


Posted in Untitled on 25 Feb, 2011 - 10:54 am

I'd like to point out that the CH can make anyone come on too strong, or say things we shouldn't, as well as simply being human. I know that while I go through them, I am a huge grump and have a very short fuse!

However, I think that especially if a member is a qualified GP, giving out advice as if it applied to everyone is an incredibly bad and dangerous behaviour, and I find it difficult to believe that GP would do such a thing in a forum. Even in medical forums that I have seen the GP always says to go and consult your doctor. Every GP prefers to consult in person to giove advice that applies to the person specifically, based on their personal health and circumstances.

We all know that the question of whether someone needs ECG monitoring or not while on any drug MUST come down to a patient by patient decision made by a GP who knows the patient and his/her history personally, So saying that it isn't necessary is definitely the wrong thing to do.

So I remind everyone that this forum isn't a place to get actionable medical advice, but rather to swap ideas and experiences with others who suffer similarly, and all ideas gleaned from here must be taken to your medical professional for discussion.


Posted in Untitled on 28 Jan, 2011 - 1:30 pm

Hey Graeme, That's very interesting... Next time, I shall mention this to my GP and try the same treatment..... very interesting. thanks for sharing!


Posted in Untitled on 28 Jan, 2011 - 1:14 am

Hi Gabrielle, welcome to the site - great to have you here smile Sorry, I dfidn't welcome you sooner, but I have been either away or and busy with work or both!

Wayne - Great to hear you have it under control there, being able to manage it, and knowing what works and how makes it a lot easier to bear!


Posted in suicide headaches on 28 Jan, 2011 - 1:08 am

I went to a neuro once, he didn't order any tests, just prescribed drugs. Waste of time he was. I went to a GP and they ordered a head scan. My current GP also re-ordered a scan last time I saw her. (I didn't go and have it tho, - waste of time)

But yeah, I suppose they do have more of an idea at the begining, when there might be doubt over whether it is CH or not. But like you said, after you know, a GP is fine.


Posted in Untitled on 27 Jan, 2011 - 12:12 am

Hi ben, and welcome!
Wow, a life of cluster headaches. Mine started when I was 24, back in 1994. Unlike you, I guess I got lucky - the very first GP I went to diagnosed me right away, and put me on Deseril, which worked right away in preventing them every day.
with sucessive episodes, Deseril did nothing, and like you, I went on the drug trial wagon.

Anyway, I look forward to reading your insights and advicem, it's great to have you on board!
Thanks for being a part of the site.


Posted in suicide headaches on 26 Jan, 2011 - 11:44 pm

I actually don't bother with Neurologists. My new GP asked me if I wanted to be referred to one when I first went to her and told her what I have, and I said "nope."

I told her they dont offer any more than what you can sop why bother, plus they tend to bnot believe what I say. They seem to have the attitude opf "I am a specialist and you are not, so there is no possibility you could know more than me about what you have"

So, I just tell my GP what I want to have prescribed, and she makes a call or does whatever, and gets the approval and prescribes. I turned up once during an attack and was put on oxygen at my wife's request, and when she saw me in the pain I was in, she immediately prescribe opiate paint relief drugs, which do help a lot. (They also get rid of RLS which is a nice side effect)

So, why bother with a neurologist?


Posted in Untitled on 25 Nov, 2010 - 2:34 pm

yeah, good points heather... we need some professional input in this area, as I can see reasons for and against it working. Strange isn't it.

And yes, I'm all green! smile I should be right now for another 4 years! At least mione only come every 4 years now, compared to every 3 months when I first got them back in '94. Only took 8n years for them to become 4 years apart.


Posted in Untitled on 25 Nov, 2010 - 2:31 pm

yeah, people who use things like that and get benefits from them are strangely the same percentage as placebo takers who get benefits from placebos.


Posted in Untitled on 25 Nov, 2010 - 2:29 pm

lol. If the royal family cared about my marriage or engagement, then I might be inclined to care about theirs.... otherwise, I don't know them, so what's the interest?


Posted in Untitled on 25 Nov, 2010 - 2:28 pm

Welcome to the site Luke,
When you use the oxygen, make sure you take slow deep breaths. I found it difficult to do, but you have to for it to work.


Posted in Untitled on 18 Nov, 2010 - 12:06 pm

Mine used to end with a big one, now they just fade away really slowly over a copuple of weeks. Great to see they are gone for you Vaughan!


Posted in Untitled on 18 Nov, 2010 - 12:04 pm

Don't. Oxygen is actually a cellular poison. This cellfood thing is a scam.

http://www.chem1.com/CQ/oxyscams.html


Posted in Untitled on 18 Nov, 2010 - 11:56 am

glad you have had such a nice time here! yes, my Aunt from Leigh-on-sea comes out here every now and then, and is planning on moving here, as she loves it too.

Who is Prince William and Catherine Middleton?


Posted in Untitled on 18 Nov, 2010 - 11:54 am

Good point. perhaps the brain does sense the extra oxygen and constrict the blood vessels to compensate... Any medical people here?!


Posted in Just Venting on 03 Nov, 2010 - 4:59 pm

lol. What do you do there?


Posted in Irene's Competition on 03 Nov, 2010 - 4:56 pm


Posted in Irene's Competition on 03 Nov, 2010 - 4:55 pm

wow, just watched the vid, can't believe you did that to all your clothes, did yopu regret it afterwards?


Posted in Irene's Competition on 03 Nov, 2010 - 4:52 pm

Hey,
I can't find you in the list of people....

oh wait, I just found you! you're on page 9 at the moment. I clicked like for ya smile


Posted in Untitled on 26 Oct, 2010 - 11:31 pm

I'd say the 50% that O2 doesnt work for probably didnt deep breathe or didnt have the flow right or didnt try it for long enough. The brain WILL constrict bloopd vessels when it knows it is receiving too much oxygen, that is a fact that cannopt be refuted. And the constriction of the vessels of course stops a cluster headache.


Posted in Untitled on 25 Oct, 2010 - 5:27 pm

Hi Robinn, Welcome to the site!
I fear your data might be a bit out of date. It is definitely the trigeminal nerve, -- that has been proven by directly interfering with the nerve to abort cluster headaches. The Oxygen therapy provides proof that the dilation of the blood vessels surrounding the nerve are the cause of the pain by applying pressure. (As does the vasoconstrictor of caffeine in red bull helping abort an attack, and the vasodilator of alcohol triggering an extra attack) What is NOT known is why the Hypothalamus decides to instruct the brain to dialte the vessels each day for a hour or so, for a period of weeks and then stop for a period.


Posted in Untitled on 19 Oct, 2010 - 10:22 pm

vaughan c said:
"Stevek

my sentiments entirely......if we listened to "expert" advice then we would be in pain 24/7.

Cheers

Vaughan"


Not entirely true. My GP prescribes Oxygen, Opiates for the pain and any other drug I suggest. She is very cooperative, and without her, The past 6 weeks, and especially the week in Norway for which she prescribed 60 opiate pain killers and allowed me to collect 12 imigran sprays in one chemict visit for me would have been very difficult.

Of interest is that in Norway, they supply the imigran sprays in boxes of 20 for about $4.30 a spray. Strange in a country where everything eklse is twice the price of here.


Posted in Untitled on 19 Oct, 2010 - 10:14 pm

The one thing that makes them less tolerable is distractions! that's the worst thing you could try to do. It takes all my concentration just to deal with the pain, therfore any distraction just makes itn worse because it is more difficult to deal with.


Posted in time effect on 14 Oct, 2010 - 10:48 am

Hi,
yes, I have been away in for the last 10 days in Norway (marianne's grandfather died, so it was a last minute planning thing) and so havent been keeping up in here.

I was still getting them mildly in Norway, it seems they have tapered off to being very mild now, not really requiring medication, but still annoying, when they have gone completely, I'll change to green smile


Posted in Untitled on 14 Oct, 2010 - 10:44 am

Hi,
I have just gone through 6 weeks of them, and strangely this time, my eye watered and nose ran only about 3 times, but was always a bit blocked on the side of the headache, which made it difficult to use the uimigran nasal sprays. In previous bouts, it would water every single attack.

So there you go, just because it doesnt make your eye water every time, doesn't mean it isnt CH.


Posted in Untitled on 14 Oct, 2010 - 10:36 am

if you take too much you could get a stroke, as it also constricts heart blood vessels. Dont take more than 2 x 20mg doses a day.


Posted in triggers? on 03 Oct, 2010 - 2:10 am

interesting, I was diagnosed on my very first gp visit back in 1993, in Ballarat. I guess I got lucky to have gone to one who knew them the very first time I got them. He prescribed deseril which worked perfectly in preventing them every day that I took one. The next bout a few months later, deseril did nothing of course.


Posted in time effect on 03 Oct, 2010 - 2:05 am

thanks, glad you like it smile hey, do you not like to use the nasal spray?


Posted in time effect on 02 Oct, 2010 - 11:14 am

I think you should experiment, nothing to lose! and if anything, you might prevent one, rather than feed them. The medication is designed to constrict the blood vessels, so it should ptrevent them from being able to become dilated if you take it soon enough.


Posted in Untitled on 30 Sep, 2010 - 11:10 pm

Thanks for the background, yes, caffeine is a good vasoconstrictor. Pity it has little effect on me tho sad but the imigran spray kills mine in 5 - 10 mins usually every time, so I'm ok.

The NoDoz are caffeine tablets, normally used to stay awake. Truckies use them, and you can buy them at pretty much any servo / 7-11. They have a slightly higher caffeine content than redbull.


Posted in time effect on 30 Sep, 2010 - 10:59 pm

Hey Heather, Seeing as yours come like clockwork now at 3am and 5pm, you could take the imigran tablets 20 - 30 mins before one is due, so that when it comes, the drug will be starting to hit your bloodstream.


Posted in Untitled on 30 Sep, 2010 - 1:13 am

Hey Barry, ever tried to use Nodoz instead of redbull? or even V Energy drink? both are cheaper. Nodoz has a bit higher caffeine content too.


Posted in triggers? on 30 Sep, 2010 - 1:10 am

I think its our internal clock, which also tracks seasons that says 'right, it's time'


Posted in time effect on 30 Sep, 2010 - 12:41 am

Stevek, it seems google maps gets confused sometimes. If I type middleton Tasmaina into maps.google.com, it shows the right spot, but using the code they provided to work out the latitude and longitude from the address, it occasionally fails. I have fixed it for yours though, should be spot on now smile


Posted in Untitled on 30 Sep, 2010 - 12:29 am

Hi Les, and welcome to the site - yes, i think different things work for different people, as we're affected in different ways. For me, this cycle has been the first that I have even got them after fallijng asleep, in the past 16 years, they have always come in the middle of the day, and they did that too for the first 2 weeks of this cycle, but the last 2 it changed to occuring about an hour or 2 after I fall asleep at night. luckily for me, I'd get up, get rid of it with imigran after about 10 mins and go back to bed, and wouldnt get another one till 12 hours later.
So I guess, you just have to experiment, and what Stevek suggested sounds crazy enough that it might work for you too!
But yeah, you do get to the point of 'why me!' - we're all nice people, just bloody unlucky! and until they discover why some people get them, we won't know the real answer to 'why me'


Posted in CH figures innacurate on 30 Sep, 2010 - 12:23 am

It has occured to me, as a new member joins this site almost every day, that the 1 in 100,000 figure must be innacurate.

There are roughly 800 members of this site who are sufferers.
Given that the population of Australia is nearly 25 million, then at the moment, the rate is 1 in 31,000 - not as rare as claimed by the medical publications!


Posted in triggers? on 29 Sep, 2010 - 12:33 am

go lignocaine! - hope it wasn't too bad...
I think mine have actually stopped, but I don't want to change the status yet, in case they havent... but i've missed 2 of them in a row... so Im thinking they have finally gone...


Posted in Untitled on 28 Sep, 2010 - 3:32 pm

iconiconicon


Posted in triggers? on 28 Sep, 2010 - 3:31 pm

naps trigger an extra bonus attack for me too.... but of course, when in remission, nothing causes them, because we're not having an cluster...


Posted in time effect on 28 Sep, 2010 - 3:29 pm

no, I think we all do!


Posted in Untitled on 25 Sep, 2010 - 11:35 pm

Welcome to the site! Interesting about getting cold... it has worked for me too. I'm sure you know all about the Imigran nasal spray and it's ability to abort an attack in under 10 mins. Tell me, have you ever noticed a cold spot on the back of your neck just as an attack is starting? I noticed this today, so I heated it up to counter it, and the attack went away before it got bad. Took about 1 minute to abort it... unless I was just feeling shadows... More experimentation required.

I grew up in Latrobe by the way... left there in '86 after high school to move to Brissie.


Posted in Untitled on 24 Sep, 2010 - 8:57 pm

With the oxygen, it's important to get a flow rate of around 14-15 litres per minute. And it's also important to take long slow breaths (So I was told today by my GP).
Maybe give it another go? Because theoretically, it should just work. Brain gets too much oxygen > brain constricts (already dialated) blood vessels > pressure on trig nerve from dilated vessel is gone.

And yeah, I'm looking forward to remission, I can tell you! do you ever get scared that an attack won't end, especially when it goes for longer than usual, with no sign of lessening? I get that almost every time it lasts longer than an hour...


Posted in Untitled on 24 Sep, 2010 - 6:23 pm

Yes, I agree, Oxygen would be your best friend if your attacks last a while, it would abort the attack if used properly, and it's drug free.
It works because the brain carefully and closely monitors the amount of oxygen it gets, and as soon as it6 is getting more than it wants, it constrictes the blood vessels feeding it, and that's the end of the attack, because the CH is due to dilated blood vessels putting pressure on the trig. nerve.
Bit of a nutshell explanation, but I really recommend it. I tried it for the first time today, I had an attack at 1:20pm, and 2 hours later, I thought, right, this is enough! I got my lovely partner to drive me to the doctors office, where they put me on oxygen, and 15 mins later, it was gone. They were about to give me morphine as well, but it went before that was even arranged. My doc came in and reminded me to breathe deeply and slowly which I wasn't doing at first.
The nurse then offered to contact their oxygen supplier for me and arrange for someone to give me a call about hiring out the oxygen equipment. (which was really nice of her) So, it's easy to arrange. The next time you get an attack early in the morning and if you get them lasting longer than 30 mins, get someone to take you to the hospital right away, and ask for oxygen to treat cluster headache, you'll be glad you did.


Posted in Untitled on 23 Sep, 2010 - 11:52 pm

Thanks Andy, good to see you're not currently under attack, and yes, we must enjoy the pain free times as much as we can, and remember the next time we are under attack, the pain free times will come again. I find that the hardest thing, especially when they start lasting longer than usual, I start thinking, what if it doesnt stop... it should have stopped by now... something is keeping it going... scary stuff, but then, it stops eventually.
Cheers.


Posted in Untitled on 23 Sep, 2010 - 11:47 pm

Hi Greg, and welcome to the site!

Do you use anything to try to abort the attacks? I find the Imigran nasal spray usually aborts them within 10 minutes if I use it properly and soon enough.

I have started on Tegretol now, as my sister wjho also gets CHs finds that prevents them quite well, so we shall see.

If it makes you feel less alone, i went through a number 9 around the same time as you early this morning, mine kicked off at 3:20 am, and the bastard didnt let up for nearly 4 hellish hours!
I was about to go to the hospital (via my lovely partner) to get on some oxygen (I should have done it sooner) when it suddenly stopped at 7am. I was left with a mild headache all day, probbaly from the stress.

Glad to have you here, and yep, you're not alone mate!


Posted in Supporters tips on 22 Sep, 2010 - 10:29 am

Ditto what Heather said Shell, thinking of you both.


Posted in Untitled on 20 Sep, 2010 - 11:04 pm

Had the same thoughts myself... the very first time I got these, back in '94 I would get them at midday every day. Just one, and it would last about 30 mins. The doc put me on Deseril, na dtold me to take one every morning when I first woke up. I did this, and when I took one, I wouldnt get the headache. it was like a miracle preventative. If I missed taking the deseril, then sure enough, the CH would arrive on time.

That cycle lasted about a month. The next cycle a few months later, I went back on the deseril, and it did nothing. no effect at all. So I havent tried it since, so I was considering trying that again, seeing as it worked so well the first time....


Posted in Untitled on 20 Sep, 2010 - 11:00 pm

icon My pleasure


Posted in time effect on 20 Sep, 2010 - 10:59 pm

Hi, yes, good to see the not suffering tag smile
And yes, I guess we're all different, and that perhaps the time thing has something to do with the hypothalamus as well...
Up until tonight, for thepast 4 weeks, I've been hit on my left side, but tonight it was in my right... hope this doesnt mean anything nasty...


Posted in time effect on 19 Sep, 2010 - 5:15 pm

Has anyone ever noticed that time seems to go really fast during an attack?
This happens every time for me. For example, I'll check time time during an attack, and it might be 9:35am, then I'll check again after what I think 3 or 4 mins, and it's 9:50am - 15 mins has passed! It's weird, and happens every time.


Posted in Untitled on 19 Sep, 2010 - 5:07 pm

Hi Shell,
Sory, didnt see your question above till now. I don't do anything for my restless leg. I dont think there IS anything that can be done. Walking gets rid of it instantly, but it starts up just as I start to doze off so, that's why it's annoying. I just put up with it.


Posted in Untitled on 19 Sep, 2010 - 4:55 pm

Hey Daniel, welcome to the site smile


Posted in Untitled on 19 Sep, 2010 - 4:53 pm

Good to see the change in your status Heather smile I have had a 3 week chest infection during this episode of headaches, so that's been a lot of fun...
I have been improving the site by the way, linked the location in the posts to a popup map, and improved the cluster diary pages. Other bits here and there. If there are any suggestions... feel free to suggest!


Posted in Untitled on 17 Sep, 2010 - 6:17 pm

Wow, I so would not tolerate that from doctors...

Actually, I have never had mine at night, always usually around midday, only the last night did I get them between 12 and 2am. 2 of them less than an hour apart.

Stargate - yes, SG1 is a fave here too, we have all the seasons on DVD smile What do you think of SG Universe? Ooh! and did you know there was an SG convention on in Adelaide and Teal'c was there!


Posted in Untitled on 17 Sep, 2010 - 8:28 am

Wow, kerry, you must be so strong now, dealing with all this frequent pain for so long, I really feel for you.

I see you're a stargate fan too smile


Posted in Untitled on 16 Sep, 2010 - 9:57 pm

I'm surprised you can even sit at a computer and type during a mild attack of CH, let alone a bad one, or was it a trigeminal neuralgia attack? I'd say it was, as medium to bad CH attacks render me incapable of any activity other than writhing in pain, barely able to open my eyes.

Curious - Why did you wait 20 mins before taking something?


Posted in Untitled on 15 Sep, 2010 - 9:31 pm

Kerry - never had the pain come up from the collar bone, thats a new one... sorry to hear your conditions, if the abortive for CH triggers the TN then Abortives are not the best method of attack. There are long term preventatives that you could look at with your doc.

I suggest approaching the new doc you spoke of and asking him if he is interested in taking on a long term project, tell him it might be a tough case, and tell him he'll get the applause and admiration of over 800 members of the australian cluisterheadaches support website here if he does.

And to echo Dusker - yes, imigran tablets can be quite effective in some people un der some conditions, such as if you have an empty stomach, they can start working in as little as 5 minutes. The speed depends on several factors:

- Whether you take it with food, after food or on an empty stomach
- The ability of your medication to pass into your bloodstream
- How your medication reacts with the acid conditions in your stomach
- Whether your medication interacts with other medications you are taking at the same time


Posted in Supporters tips on 14 Sep, 2010 - 6:56 pm

ps, I have added the supporters tips page on the left. If anyone thinks it should have a better name, just let me know, can't think too clearly right now icon


Posted in Supporters tips on 14 Sep, 2010 - 6:38 pm

I asked for injections once, and was told that they can't allow people to inject themselves.

I have it under control now with the nasal spray and coldness. Reducing body temp is a very fast vasoconstrictor, faster than oxygen, probably because it's a survival mechanism.


Posted in Untitled on 14 Sep, 2010 - 6:22 pm

Hi Kerry, welcome to the site... Hate to have you here, but welcome anyway!

Shell is right, the latest theory from Prof Goadsby is that the hypothalmus tells the blood vessels around the trigeminal nerve to dilate (swell in size to allow more blood flow) which then creates pressure on the trigeminal nerve somehow. Either by stretching it or pinching it... I'm not sure. Why the Hypothalmus sends this signal at regular intervals is unknown, and it sends a message to do it much more than it should ever need to be done. so the nerve really gets an un-natural beating.

So that's why the best abortive treatments are vasoconstrictors - medications that can quickly constrict your blood vessels and force them to be small again. Caffeine is a common vasoconstrictor, hence the Red Bull favouring of clusterheads.

Also, being very cold is a natural remedy, as that makes your body constrict all blood vessels to send blod to your body's core to help preserver body heat where it is needed most. Getting into your car with the airon turn up high and letting it cool you and having it hit you on the head is good. Have the air come out of just the one vent to concentrate it.

Oxygen works the same way, in that when your brain gets a signal that it is receiving too much oxygen it sends a signal to constrict blood vessels in an attempt to reduce the amount of oxygen it is receiving.

A good combination of all of the above along with imigran nasal spray is VERY effectivve in aborting cluster headaches. I can abort mine in under 10 mins without them reaching past a number 3 now.


Posted in Using a portable T.E.N.S (Transcutaneous Electrical Nerve Stimulation ) Machine on 14 Sep, 2010 - 5:47 pm

Sounds interesting, I'm finding 100% relief within 10 mins at the moment from the imigran sprays and making myself very cold from the car aircon. When your body senses you're cold it naturally constricts blood vessels to pull more blood to the body's core. (which of course will cure the cluster headache pain)

I find when I do this with the imigran spray, the areas around my hand and thumb webbing go numb and tingly the instant the pain stops. it's quite fascinating, and they stay that way for a good 5 minutes. I didn't think of it at the time but when I told a friend, she reminded me that that is the pressure point used to heklp relive headache pain.


Posted in Supporters tips on 13 Sep, 2010 - 11:54 am

Yeah, great Idea. I'll make the page today. and start transfering info from this thread to it. I'm just waiting for today's attack to occur, then i'll decend into hell for a while, then i'll come back and work on it.
I pray it wont be as long as yesterday, that was just stupid. 4 hours... I didn't think it was going to end... I was getting scared... The topomax seems to be doing nothing now, which seems to be the way things go with me and drugs, they all work for the first few days, then nothing. I'm going back to GP on Wednesday to try Tegretol as per my sister's suggestion - (she gets CH's too)
I'll also ask the GP what she thinks is the fastest acting vasoconstrictor available.

I noticed if I apply pressure to the end point of the trig nerve where it ends in my nose, it provides a bit of relief too..


Posted in Supporters tips on 12 Sep, 2010 - 4:51 pm

spoke too soon, just had one that lasted 4 hours icon


Posted in Supporters tips on 11 Sep, 2010 - 12:00 am

I don't really need any support or special help from anyone, and I don't need any water, or ice or drinks, or anything. I dont need people to be near or far, I don't need to be left alone either. I'm just fine left to myself. All I really ask is not to be talked to. When they get really bad, like a level 3 and above, I just go and sit in the car with the aircon on high/coldest concentrated on one vent on the side where it it is while pressing the steering wheel into the side of my nose where it joins my cheek. I do that until it goes, and I'm all good.

This attack however is the first one where I have found a drug that has prevented them from occuring since deseril worked back in 1994, and the drug that is working now for me is Topamax

However, it's been really weird, the past 2 days, I have had a couple of attacks that have lasted about 5 mins each.... very strange, but before that the drug has prevented them from occuring.


Posted in Just for a smile on 10 Sep, 2010 - 11:11 am

$30 on a cordless drill? must be a crappy one at that price!


Posted in Untitled on 25 Aug, 2010 - 1:25 pm

Hi,
Coffee affects different people different ways. in some people, it stimulates the sleep centre of the brain, therby helping people to sleep. With you, it could be stimulating the area of your brain that deals with being calm and relaxed. It can also change in a person, meaning that where once coffee kept you awake, it can suddenly change and help you to sleep.


Posted in Untitled on 24 Aug, 2010 - 3:03 pm

Well, I spoke too soon, Mine have come back, 4 days ago, but this time, they are really really mild, last about 25 mins and come on at 2pm every day.


Posted in Untitled on 13 Aug, 2010 - 5:49 pm

you should get someone to video you next time, then put it on youtube and post it here! lol


Posted in Untitled on 11 Aug, 2010 - 1:56 pm

I'm right handed, mine started at age 24. I didnt drink a lot or smoke, I wasnt born premature, but I had damaged my lower back at work 6 years earlier. I'm O+ blood group. Had no sleep disorders, exceopt that I slept really deeply.

Everyone has a palmers crease, do you mean a 'Single transverse palmar crease'?
http://en.wikipedia.org/wiki/Single_transverse_palmar_crease


Posted in Untitled on 11 Aug, 2010 - 12:22 am


Posted in Untitled on 10 Aug, 2010 - 11:02 pm

Oh, and just so people know, you don't get calcium from milk, despite what they tell you, the calcium on cows milk is too coarse to be absorbed into the human body.

Actually, milk and other dairy products weaken the bones and accelerate osteoporosis. Yep, consumption of milk causes the very condition it's advertised to prevent.
Osteoporosis results from calcium loss, not insufficient calcium intake. And dairy products, because of their high protein content, promote calcium loss. Studies examining the incidence of osteoporosis have found that high consumption of dairy products is associated with high rates of osteoporosis. If you want strong bones, don't drink milk.


Posted in Untitled on 10 Aug, 2010 - 7:40 pm

Hey Barry, Congrats! Restless leg is soooooo annoying isnt it! I've never met anyone who also gets it, I've had it since I was about 10, so kinda thought it was normal. I didn't even know it had a name until about 8 years ago when I googled it.


Posted in Untitled on 10 Aug, 2010 - 11:39 am

Good work Shell, I'll add this info to the oxygen page tonight, as BOC is deserving of the business!


Posted in Left or right sided on 07 Aug, 2010 - 2:15 pm

it swaps randomly for me... I prefer it on my right though... probably cos I'm right-handed and feel stronger on that side


Posted in Untitled on 07 Aug, 2010 - 2:14 pm

that must seriously suck.... icon


Posted in Untitled on 07 Aug, 2010 - 2:13 pm

Yes, vision artifacts are usually associated with a migraine in my own personal experience... thats how I can tell Im getting one... it starts off as a bit of a blind spot an makes reading text on the screen really difficult. One time, the spot got bigger and bigger with each passing minute, then turned into a ring an kept growing until it vanished outside of my viewing area. It was quite fascinating. Then came the migraine.


Posted in Untitled on 06 Aug, 2010 - 4:53 pm

Lets hope! icon - welcome to a pain free world!


Posted in Have a laugh on 06 Aug, 2010 - 4:38 pm


Posted in Leave Britney alone? on 05 Aug, 2010 - 9:59 pm

if you've seen the leave britney alone vid, you'll get this one...


Posted in Untitled on 05 Aug, 2010 - 11:24 am

The problem with medication like that, is that by the time they "start working" the cluster period is over, and they go away anyway, so I feel that type of medication is pointless, and so have never tried it.

Once the GP tells me that it will take about 4 weeks to work, I tell them, well, they will be gone in 4 weeks anyway, so don't bother prescribing it. I think that type of med is better left to chronic sufferers.


Posted in Time for an upgrade on 05 Aug, 2010 - 12:34 am

hah, look forward to seeing the new pic Dusker!


Posted in Time for an upgrade on 03 Aug, 2010 - 12:34 am

If your image appears a bit fuzzy, you just have to upload it again, because they are set to display bigger now.


Posted in hello on 03 Aug, 2010 - 12:24 am

Ditto, how'd it go with the neuro Rusty?


Posted in Untitled on 02 Aug, 2010 - 1:52 pm

Welcome to the site Irene, it's great to have you on board, and I hope you get a lot out of it. I used to have CHs all the time from 1994 to 2002, then I had a break for 4 years, and had one bout in 2006, and since then, I have had none. So, there is a chance they can just stop...


Posted in Untitled on 01 Aug, 2010 - 3:01 pm

Hi Martine, welcome to the site smile

Oxygen to abort an attack is probably the best idea for him, considering he's probably on other drugs. Talk to your GP about getting oxygen.

Please let us know how it goes. Age 7 is not a good age to have to deal with this!


Posted in Untitled on 31 Jul, 2010 - 11:35 pm

Welcome matty! Hope you find it useful and helpful. It's good to know you're not alone!


Posted in Why we had to remove quiz! on 31 Jul, 2010 - 11:33 pm

awww thanks shell! iconicon


Posted in Time for an upgrade on 31 Jul, 2010 - 11:31 pm

You're welcome! I just added a latest posts page too, to make it easier to find new posts you haven't seen yet in topics icon


Posted in IT'S ALL IN HER HEAD on 31 Jul, 2010 - 11:23 pm

Getting them as a child is very rare...


Posted in oxygen availability on 31 Jul, 2010 - 11:19 pm

That's ok, it's relevant here too!


Posted in Time for an upgrade on 30 Jul, 2010 - 11:32 am

hah! welcome to the cat forum too!

smile


Posted in oxygen availability on 29 Jul, 2010 - 11:00 pm

Good to know Paper. thanks icon


Posted in Chronic paroxysmal hemicrania on 29 Jul, 2010 - 2:23 am

icon


Posted in Time for an upgrade on 27 Jul, 2010 - 11:55 pm

Yes‚ it's been nearly 4 years‚ so time for an upgrade!

I have spend many‚ many hours in my spare time designing and developing a new forum system (never did like the clunky phpbb system that you can get for free)‚ and will migrate it to this site ASAP. I have it running at www.catworld.com.au where it has been put through some good testing‚ and the owner Marianne (my wife (we eloped in June when we went for a trip to Seattle USA!!)‚ didn't hold back in letting me know what all good forums need feature wise.

So‚ hope you all like it!


Posted in Why we had to remove quiz! on 27 Jul, 2010 - 11:46 pm

smile thanks benny‚ glad you like it. I'll be completely upgrading the forum in the next few days with a new system I have built in my spare time. It has search abilities‚ proper quoting‚ member profiles‚ better pm system‚ and other features I can't think of at the moment‚ but you can see it in action at www.catworld.com.au. oh‚ and it will have a nicer look and should be easier to use smile


Posted in Why we had to remove quiz! on 20 May, 2010 - 12:07 am

lol thanks saintpeter! yes‚ I should take more of that each day! I just find it a bit tasteless.
It's good frozen into cube shaped chunks too‚ and added to drinks.


Posted in Why we had to remove quiz! on 06 May, 2010 - 12:04 pm

Thanks‚ yes‚ of course there will be similarities in content when two sites deal with the exact same issue and provide the same helpful info. I wonder what he expects other sites dedicated to CHs to have in them... Oh well‚ and no headache here from it‚ I have a background that more than equips me to deal with their letters ;-)

I just find it all very very strange‚ all the cluster headache sites should be united! freely sharing info for the common cause‚ but no‚ not for Daren it seems. I can only assume he sees it as competition detracting from his profiteering via google ads. Sad.


Posted in Why we had to remove quiz! on 05 May, 2010 - 4:28 pm

my thoughts exactly. It's quite sad in a way.


Posted in Why we had to remove quiz! on 05 May, 2010 - 1:08 pm

Just so you all know the story behind the quiz being removed‚ you might enjoy the exchange between myself and Daren Johnson from ch.com. I wonder about his motives.

www.roger.id.au/clusterheadaches


Posted in Chronic paroxysmal hemicrania on 19 Oct, 2009 - 11:19 pm

My sister was recently diagnosed as having Chronic paroxysmal hemicrania when she had thought for years that she had CHs.

The diagnosis was by an associate of Prof. Peter Goadsby in Melbourne.

The symptoms are pretty much identical‚ except more females get Chronic paroxysmal hemicrania than males‚ and with Chronic paroxysmal hemicrania you get about 6 - 8 attackes per day‚ which is something you do not get with CH. - http://en.wikipedia.org/wiki/Chronic_paroxysmal_hemicrania.

The good news is that there is a specific drug available - indocid (Indomethacin) - which cures it. So if you're female‚ get this checked out‚ ask your medical practitioner about it and


Posted in Left or right sided on 16 Oct, 2009 - 3:28 pm

Im right handed‚ and the CH seems to randomly choose which side it occurs on‚ but always the same side for each bout


Posted in Untitled on 07 Jun, 2009 - 11:43 pm

Good luck with the meds - let us know how you go.

I think if I get another attack‚ im not going to bother with meds and doc appointments now... I'll just endure them with cold aircon in my face. I just don't have time to run around with appointments and wasting money on different drugs that probabaly are bad for you in the long run. But it's been since Novemebr 2006 that I had my last attack... so maybe I wont get them again ever. That would be good.


Posted in Untitled on 04 May, 2009 - 7:40 pm

Yep‚ mine have been gone for 2.5 years now‚ and the diet is the answer. I guess some people are just allergic to certain foods that we're not supposed to eat‚ and the CH are an allergic reaction. Mystery solved! eat properly = no CH. There is your treatment everyone. Stop experimenting with drugs‚ just eat the right foods‚ and your body will thank you.


Posted in Untitled on 04 May, 2009 - 7:32 pm

He also said that pure oxygen was one of the best treatments but it wasn't clear why


Are you serious? if he isn't sure why‚ you need to change your neurologist!

It works because the brain detects too much oxygen supplied to itself and as a response constricts blood vessels. It's as simple as that. Clusterheadaches are the result of regular dilating of blood vessles. Tricking the brain into constricting them is why oxygen works so well.


Posted in Untitled on 04 May, 2009 - 7:28 pm

Hi‚

It is more likely that it is an additional condition caused by whatever causes one to suffer cluster headaches‚ rather than to be THE cause of cluster headaches. For example‚ someone who has red hair is also likely to have a lot of freckles‚ but the freckles don't cause the red hair.


Posted in Untitled on 12 Sep, 2008 - 3:13 pm

Yes‚ I would say that sensitivity to light and sound and vomiting are hallmarks of Migraine headaches‚ not cluster headaches. Did you take the quiz to the left?


Posted in Cluster Quiz on 05 Aug, 2008 - 12:41 pm

Hi‚

I have added it‚ and it gives a liklihood percentage as the questions are answered.

Cheers


Posted in Cluster Quiz on 04 Aug, 2008 - 3:54 pm

I Will add it today - thanks!


Posted in Untitled on 04 Aug, 2008 - 3:53 pm

Sounds to me as if they are not cluster headaches‚ based on your comment of "can't lift my head to get out of bed' - cluster headaches are not like that at all.

Why have you not had it diagnosed if you have been having them every day for 9 months? Are you not afraid it might be a brain tumour? - PLEASE get it checked out!


Posted in Untitled on 07 Jun, 2008 - 2:01 am

How's it going David? still keeping them away?


Posted in Untitled on 18 Apr, 2008 - 11:17 pm

Hi‚

I think the reason you would think that is because you do believe god exists. Most god believers tend to blame god or satan for bad things‚ as well as good things‚ because it's easier that way. It's easier to go through life without having to take full responsibility for the bad things that happen or the good things that happen.

The simple fact is‚ humans are biological beings. In biological beings‚ things go wrong. When things go wrong‚ it can cause much pain. It's as simple as that.
Your wife gets them because she is unlucky. No other reason. Once you accept that‚ you'll be on your way to helping her stop (or at least limit) them and treat them. Deny it‚ (throw your hands in the air and resign yourself to "god did it"‚ or "satan did it") and you're denying the ability to be able to do anything to help her.

Your call.

(I prefer to not consider myself at the mercy of a possibly fictitious entity until proven otherwise‚ and even then I'd argue with it!)


Posted in Untitled on 25 Feb, 2008 - 8:23 pm

Yep‚ the attacks are not brought on or iritated by any form of movement as far as I know. I've never worked out while going through a bout‚ but I can't imagine it would help‚ or hurt.


Posted in Untitled on 22 Jan, 2008 - 8:10 pm

Hi and welcome to the site!

Sensitivity to light is not a common symptom at all. Does your nose run on the same side as the watering eye?


Posted in Untitled on 21 Jan, 2008 - 12:37 pm

Hi debbie‚ Welcome to the site‚ and it's a pleasure to provide it. it IS easy to feel alone‚ but there are a lot of people out there who go though the same thing‚ and understand what it's like. Hang in there!


Posted in Untitled on 21 Jan, 2008 - 12:19 pm

Hi‚

Yes‚ I am usually left with a normal headache for the rest of the day‚ which I put down to being there from the stress of dealing with so much pain for the duration of the attack. In other words a tension headache.


Posted in Untitled on 09 Dec, 2007 - 12:57 pm

Hi‚
welcome to the site!

Have you tried the oxygen treatment?


Posted in Untitled on 23 Nov, 2007 - 11:21 am

Hi‚
Welcome to the site‚ and yes‚ I think we'd all love more details about how you were treated using accupuncture!

Cheers!


Posted in Untitled on 23 Nov, 2007 - 10:15 am

I think your neuro needs to get out more‚ or at least use the internet.
http://en.wikipedia.org/wiki/Fibromyalgia

As with most neuros I have see‚ they are too full of their own importance‚ so much so that they feel they can throw around ridiculous statements like "I don't believe in Fibromyalgia"

Time to give your money to a different Neuro.


Posted in Detox? on 05 Nov, 2007 - 3:27 pm

Hi‚

this is a very interesting thread.. please keep it updated.


Posted in Beer anyone? on 22 Sep, 2007 - 6:10 pm

Well‚ there's only one beer I'd buy‚ and you can't get it in Australia‚ it's a french one called Desperados‚ and it has tequila in it... Could get it in Paris‚ and in New Caledonia‚ where it is actually imported from Brisbane‚ despite not being able to buy it here.
So‚ I don't drink beer. Don't like it. (unless it has tequila in it it seems...)


Posted in Untitled on 15 Sep, 2007 - 10:56 pm

Thanks Barry‚ yeah‚ there certainly does seem to be a higher incidence of CH sufferers with RLS than the general population. I look forward to the info when you find it.


Posted in Beer anyone? on 15 Sep, 2007 - 3:39 am

HAHA

No one drinks fosters in Ausralia... thats just for the rest of the world. And Bud? is that a beer?

Most people here drink their local state's beer... maybe VB being the most popular overall throughout Aus


Posted in Untitled on 10 Aug, 2007 - 10:40 am

Hi Chris‚ and welcome to the site! I'm happy you are grateful for the site‚ and hope you find a lot of support from it. The members here are all very friendly‚ so feel free to ask and discuss whatever you want.
Always open to suggestions for the site too‚ so if you have a good idea‚ just post it in the site suggestion forum


Posted in Untitled on 14 Jul, 2007 - 2:10 am

Hi‚

Yes‚ oxygen is very effective. The CH pain is caused by dilated vessels. The oxygen tricks the brain into constricting the blood vessels‚ and thus countering the dilation. It does this because the brain carefully monitors it's oxygen supply‚ and if it is getting too much‚ it's response is to constrict the blood vessels leading to it in an attempt to reduce the oxygen it receives.

I have never tried it myself‚ but I think the majority of sufferers have found it to be the most effective method‚ plus there is the added benefit of not absorbing chemicals from drugs.


Posted in Untitled on 30 Jun, 2007 - 6:12 pm

Hi‚

Sounds like we're in the same boat‚ I had none for 4 years‚ then they hit again for no apparent reason last October. What I found helped a LOT this time was rugging up in a doona‚ getting in the car‚ and turning the aircon on max cold‚ max fan speed on the side of my face where it was and pressing my head into the steering wheel while also breathing in the cold air deeply. This had 6 benefits:

1. The cold numbed my face and that affected the nerve that is the root of the CH pain

2. The cold probably helped shrink the blood vessels

3. The excess breathing caused my brain to signal too much oxygen and thus further constrict the blood vessels

4. I had the steering wheel to press my head into

5. The cold was very cold and it was almost an overwhelming enough experience to detract from the ch pain.

6. it REALLY shortened the length of the attack. In my last bout‚ up until i tried this‚ they were lasting anwhere from 1 to 2 hours. but with the car aircon treatment‚ they were gone in 20 mins‚ and a lot more bearable while they where there.

I'd be interested if this helps anyone else.


Posted in Untitled on 13 Jun, 2007 - 11:06 am

Hi‚ and welcome to the site. For me the least of my concerns is that my eye and nostril is running‚ and besides‚ you need to be alone when one strikes anyway‚ so it's a non-issue for me‚ and using over the counter pain killers is like trying to squash an elephant with a fly swatter. But I'm sensing yours are quite mild if you can still work around people while enduring a CH....
Lets hope they dont progress in severity for you!


Posted in Untitled on 17 Jan, 2007 - 9:10 pm

Hey Chris‚ and welcome to the site. I know how you feel all too well. Your previous one with a couple of #10s each day - that was me in 2002‚ and it left me completed useless all day every day for 3 months. Between the attacks‚ I had a stress headache from having to bear it to keep me company. and complete exhaustion all day. It was complete hell. But this last attack wasnt as bad‚ but still bad enough. Also‚ this group was strange in that the cluster didnt just stop‚ they got less and less each day and sort of faded off. That was new.

Anyway‚ feel free to vent here. it does help to know we're not alone.


Posted in Untitled on 30 Nov, 2006 - 1:28 am

Hi‚

yep‚ it's tough. best thing is to give him space. if none of the meds work‚ then he just has to ride them out. but you need to educate the GP‚ if that doesnt work‚ go to a different one. Find one that is willing to try different treatments. Tell him to sit in the car with the aircon up full and deep breate the cold air. He'll need to wrap up in a blanket too. I found that helps an incredible amount‚ and even gets rid of them after 10-15 mins.

keep us updated.


Posted in Untitled on 19 Nov, 2006 - 12:15 am

Hi‚

I occasionally get tinnitus but have since I was a child. Same with the RLS. but they have never changed and the tinnitus only lasts about 20 seconds at a time‚ maybe once per month. My heart rate has never gone up though. that's pretty high‚ I'd be letting the GP know about that. might it be some medication causing the increased heart rate?


Posted in Untitled on 19 Nov, 2006 - 12:11 am

Actually‚ I don't know. I think mine were due to stop anyway. next time I'll get acupuncture right away and see the effect.


Posted in Untitled on 06 Nov, 2006 - 1:16 am

Sigh. And we pay them how much? I'd be changing your GP if I were you... At least fone one that is willing to listen.


Posted in Untitled on 01 Nov, 2006 - 12:02 am

Yeah‚ i was also surprised at how well and fast it worked. Plus the cold air blasting onto my face/temple/eye helped to suppress the pain while it was there

Roger


Posted in Untitled on 01 Nov, 2006 - 12:00 am

Hi Russell and welcome!
yes‚ it is a relief to know there are others who go through this incredible pain. No one but a fellow suffere can know the level of pain they produce‚ and I am always disgusted by the GPs I have come across who have no idea and are not willing to do any research or further learning. I mean‚ are they in medicine because they love medicine and want to heal‚ or for the money only? You'd think they would be interested in learning about them more‚ but as soon as you demonstrate you know more about the CHs and the treatments than they do‚ they get offended. What's the use in that? It really really annoys me. You'll find that I don't refer to them as Doctors in this site‚ because in reality‚ they are not doctors‚ that is just an honourary title given to them‚ one which in my opinion they do NOT deserve.

Anyway‚ this wasn't meant to be a rant‚ just a welcome to the site post‚ and feel free to suggest any thing you want to see or be able to do!

Roger


Posted in Untitled on 26 Oct, 2006 - 1:26 pm

Hi‚
I think I have had that once. It caught me by surprise too‚ being the other side. I've had them in both sides‚ but always just the one side per bout.

What I have noticed is that just before they start to go‚ they reach a peak‚ with several really sharp pains‚ like a final effort to torture me the best it can before it dies. They do change each time though‚ for me anyway.


Posted in Untitled on 24 Oct, 2006 - 10:17 pm

I got acupuncture for the CH today‚ she treated my liver‚ spleen‚ as well as putting the needles in my temple and above my left eye‚ where the CH attacks. So we'll see what happens now.

Roger


Posted in Untitled on 23 Oct, 2006 - 2:24 pm

thanks for that bug report! all fixed now.

Roger


Posted in Untitled on 22 Oct, 2006 - 5:17 pm

Hi‚
I'm Roger‚ I'm in Brisbane and I co-own a web development business called Media Two. Part of the reason for starting the business is that it's a little difficult to find an employer who would understand the Cluster headaches condition. I have had them since 1994 and at first‚ Deseril was prescribed and it prevented the CH every single time. The next bout‚ Deseril did nothing. So it was trial and error after that. I've not found anything that worked to prevent‚ until 2002‚ when I was given Imigran nasal sprays which work well if I can get to it in time AND use the spray correctly. Most of the time it just goes down my throat‚ so if anyone has any tips‚ i'd appreciate it!
I'm 37 now‚ and I was in remossion for 4.5 years! but they came back this October. before the remission‚ I'd not gone 3 months without them. They got worse each bout‚ with the last one in 2002 giving me 3 a day lasting about 2-3 hours each‚ and leaving me with a stress headache between them.

So that's me in a nutshell!


An ad to help cover the costs of keeping this site up: