Supporters tips

06 Sep, 2010 - 10:22 pm

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

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

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

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

Regards Shell

2 people like this

07 Sep, 2010 - 10:28 am

Hi Shell:
I am opening my heart here a little!

I have aweful feelings of being alone during stages of an attack--I recommend it is better to say be with someone during an attack unless told to go away. (this is where it is important that the relative/friend needs to know what to do--my poor husband had no idea what was going on in the early days)
It is imperative that someone is with a person during the agitation period to ensure that they do no harm to themselves (I have had to be physically restrained at my worst)
Supporter need to be aware that could be abused and loved within seconds of each other, they need to be patient
Supporters MUST NEVER say they know someone with headaches or that they have headaches too
Supporters should never question or recommend any other treatment during an attack
Do not sympathise, but do not say do not cry--(liable to get a response from me --I'll bloody cry if I want to--don't tell me what to do!!--in my angry stage)

I must have access to a clock or a watch, as I time everything.
Water, water, water
I have to move, dont restrain me
Hope you get some bits from this
If think of more will let you know.
Think this a great idea

I left my family high and dry not knowing what to do and at what point to step in and help.This post was edited on 07/09/2010 at 10:30 am

2 people like this

07 Sep, 2010 - 1:15 pm

Just needed to add:

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

Regards Shell

0 people like this

07 Sep, 2010 - 7:48 pm

All good points, especially the potential feeling of indadequacy of the supporter!
It will be interesting to see other CH sufferers and supporters comments. Can I suggest you put together the document in a one pager that I would be more than happy to review and then you could pass on to Roger for inclusion on the left hand side as a link. I think this is a very worthy endeavour you have started. Well done!

Come on all you others--what is it you want help with when you are having an attack or not for that matter. Shell has come up with a great idea here. Now is the time to be vocal.

0 people like this

08 Sep, 2010 - 6:58 am

Ha. You have awful feelings of being alone, Dusker. I will do ANYTHING to keep from being seen. A friend of mine was visiting once when an attack hit, and worriedly asked if i was ok as i was pounding my head into the wall. NO, i said in a rather cracked voice, but i still didn't open the door.
I'm not so bad now i've discovered Imigran- i just lockdown in the loo until it kicks in. Tough if anyone else wants in, it's a bucket or the sink for them

0 people like this

08 Sep, 2010 - 11:45 am

It is amazing isnt it how we differ so greatly in the way we manage our selves during an attack, no wonder our poor family and supporters must shake their heads and wonder what what to do with us!
Shell, another great point to bring in your help notes--awareness of what each individual needs/wants! Thanks to the great Saintpeter! Good thing we wont be in the same room together during an attack!!

0 people like this

09 Sep, 2010 - 7:06 am

In my estimation, the most important thing is for Sufferers and Sufferees to not take to heart anything said during an attack. A supporter might generate hate and rage by saying "oh, i had a headache like that once", but only a sufferer can get so outraged by the banality of such a statement. We must try and let it pass over. The same applies when the sufferer is asked, out of genuine concern, how the supporter can help, and the supporter is told "BY F**KING OFF!!" The supporter cannot know the depth of loss of control on the part of the sufferer, and must also just let it pass over, despite the real hurt those words can cause.
It was always said that sticks and stones may break bones but words can never hurt, when in fact unlike sticks and stones, words can cause hurt that can't heal.

0 people like this

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.This post was edited on 12/09/2010 at 4:50 pm

0 people like this

12 Sep, 2010 - 4:51 pm

spoke too soon, just had one that lasted 4 hours

0 people like this

12 Sep, 2010 - 7:16 pm

Sorry to hear that Roger. Unfortunately, we should never "speak too soon". I am currently doing the CH shuffle.
What do you think about Shell sort of correlating all the information the best she can, I will give it a once over if you and Shell want me to. I think it would be worthy of posting on the left hand as a link for "supporters'.

0 people like this

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..

0 people like this

13 Sep, 2010 - 9:51 pm

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

0 people like this

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.

0 people like this

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

0 people like this

16 Sep, 2010 - 10:41 am

I think this is great outcome to an even greater idea--well done Shell and thanks Roger.

0 people like this

22 Sep, 2010 - 1:33 am

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

0 people like this

22 Sep, 2010 - 9:03 am

Dear Shell
I am so sorry to hear of the severe situation that Cory is in. I am not a religious person, all I can say is that my thoughts are with you both at this time.
Best wishes
HeatherThis post was edited on 22/09/2010 at 7:58 pm

0 people like this

22 Sep, 2010 - 10:29 am

Ditto what Heather said Shell, thinking of you both.

0 people like this

24 Sep, 2010 - 2:52 pm

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

Regards Shell

0 people like this

24 Sep, 2010 - 5:13 pm

Hi Shell
Good news re the new specialist, but main concern remains with Cory and present condition. Again thoughts are with him and you and continued support remains. You two are our primary focus.
Best wishes
Heather

0 people like this

29 Nov, 2010 - 2:24 am

Thanks Shell for sharing supporters tips
It's going on 3 years now that my husband Brad has experienced these hell headaches. He came to a breaking point last year in December 09 where elements of depression and suicidal tendencies were setting in.
Brad has had to leave work since December as he couldn't continue driving..and driving was his living. On the subject of support....I was on maternity leave at the time with our 8month old baby. Our mortgage and bills we still had to pay but I couldn't leave our son at home and start my job knowing that Brad's headaches left him debilitated and it would was not a good idea to leave our son in Brad's care.
We sought assistance at Centrelink until I could go back to work. Centrelink hadn't heard of ch and thought Brad and I were trying to take advantage of the system over "just headaches". It was an uphill battle to obtain financial help under sickness benefits and part parenting payment but eventually we were assisted. Centrelink could not understand why Brad couldn't look for work. At that time he was struggling to sleep and literally he was afraid to fall asleep as the pain would wake him...this occurred up to 4 times every night. I guess it will be an uphill battle for these government bodies to realise that ch is a debilitating condition.
On an update to now for the last 3 months Brad has been taking Topomax but he still suffers at least one headache a day and mostly it will last a shorter period with less intensity. I'm back at work and Brad has made good with his time off work to study and he will complete his MasterClass 5 to drive water vessels on a casual basis.
My husband has been a smoker since the age of 13. I'd like to know if you know of anyone where the ch have gone away once they gave up the cigarettes?
Thx again for info I will let Brad know about the Red Bull
Cheryl Marchant Gazzard

0 people like this

29 Nov, 2010 - 9:03 am

Welcome Cheryl and of course Brad
To respond to your question at the end re smoking--I can not give you a definitive answer other than to say I no longer smoke and that smoking is not recommended for any one with cluster headaches. Nicotine causes the blood vessels to constrict the last thing we need to happen during an attack--reducing the amount of blood and hence oxygen to the brain.
It would however be difficult for someone who has smoked for so long to give up, perhaps, just encourage not to smoke during an attack.
What a difficult time you have been through. It is amazing how we refer to "Centrelink" as a body. And yes there is still mis understanding about our illness, but there is improvement. It is not up to others to judge but to accept.
I am pleased that Brad has been able to make some progress through obviously really tough times. I too am on Topomax (I call it my wonder drug--side effects and all) fortunately, I am in total remission--hopefully Brad will reach that too. I am sure he is thankful for only 1 a day and not as severe as previously. I know by looking at my diary that is how I felt--wow, only 1 today and only a 7! I can live with that, compared to -- "how can I live my life with xxxxxxxxx". I can understand where you are all coming from. My advantage is that I am a lot longer in the tooth and do not have to be concerned with working and keeping a roof over my family heads--something I am forever thankful for. This added stress must be a huge load to carry.
I hope that you are getting good medical care--there are also some ancillary support services available eg psychologists. How do I know--because I accessed them! Took a while to get to them, but in my case I found their services extremely helpful.
I am a chronic CH sufferer (just come out of an acute stage) so know what Brad going through--take heart Brad--I am currently in remission, with no headaches, no pain! If and when it kicks back in, will be going to a pain clinic for more help, I will not let this beast manage me, I will manage it. Even at 63 this is my life--if I have to manage it around pain, so be it!
Well done Brad for your private study--it certainly sounds interesting and different, and you are not sitting on your hands. I wish you both well as you work your way together through Brad's illness. You have an advantage you are doing it together.
Heather

0 people like this

01 Dec, 2010 - 4:59 am

Your response was so uplifting Heather. Thankyou!
We have no friends who understand what we go through almost everyday. Family can be great and irritating at the same time. On the one hand my sister says she sufferers from migraines but she can still manage to hold down a job and take care of 3 children......I could have slapped her for saying these things. Quite clearly she doesn't understand what a CH is. On the other hand I have recently had a lengthy conversation with my sister-in-law Rebecca (lives in WA) who suffered from what I believe is to be cluster headaches. The doctor she saw thought that she may be under stress and not getting enough sleep CH was not diagnosed. Rebecca discovered that taking Valium for a strict course of 3 months have resulted in remission. These chats lead to the discovery that Brad's dad Paul suffered from severe headaches.......unfortunately Brad's dad has passed on at an early age in his forties.
All we know is that will believe Brad started with his first major pain after 2 incidents one being orthodontic implants where titanium screws are inserted into his jaw X 3 and he experienced heavy concussion at the left temple of his head where he vomited for a continuous 12hrs. Brad seems to think that the concussion has cascaded the start of his CH's as the pain radiates from the same side.

For the first time ever....after reading your response Brad will consider on a day to day basis to try and stop smoking.....this is a tremendous step for him and I know it will be a struggle.

Brad has the following questions he would like to ask: He is taking 25mg Topamax twice daily. What are the doses that you or other sufferers are taking? He has been taking Topamax for approx 6 months the tablets were working initally but in the last 3 weeks he seems to be relapsing. He also takes Imigran nasal sprays at the worst times.

Brad asks what kind of pain clinics do you go to? Acupunture does seem to provide some degree of relief although it is very painful....the acupuncturist we found in Sutherland is excellent .

Again all your words and empathy have mean the world to me and Brad is slowly catching onto this site. He is definately not a computer person.

I wish you a pain-free festive season...no matter what age you are or circumstances noone needs these ungodly, unforgiving, debilitating evil clusters.

Chez n Brad

0 people like this

01 Dec, 2010 - 8:08 am

Topomax is a drug you take in slowly increasing increments--I take 200mgs a day! Yes 200mgs a day.
Have not gone to the pain clinic yet.
It sounds to me as though you need to find yourself a good doctor and even a neurologist if you have not been to one yet.
There are some schools of thought that previous injury can be the precursor to CHs but not supported by research.
I wish you well as you now start your fight to gain some understanding of the illness that Brad has.
Brad--CH is "all" that it is--an illness. Find out about it, work through the possible treatments and medications, try the oxygen, try ice packs. You do need help--do not try to manage this on your own. I tried to for a long time and it is not worth it. If you find the head aches are increasing in number and the pain (note I say pain) is increasing in intensity then you need to see your doctor and ask for more help and referral to a neurologist. If you do not have private cover I hope that you are in the position that you are able to afford to get some started now! My private cover saved me this year paying out over $30,000 on my behalf!
I am off to Melbourne to be with my family and await the birth of my second grandchild so I am going to be off air for a few weeks. I thought it would be wise to have a break from CH completely
I wish you well as you work through your illness--treat it like that Brad and support him as you are Chez and you will be fine.
Heather

0 people like this

01 Dec, 2010 - 8:47 am

Ha! no wonder my post wouldn't land- Heather was there first. Hi Cheryl, you're a brave lady- it's tough supporting a sufferer. Ages ago a friend of mine called in lots of favours and organised me an appointment with a consulting professor of neurology at a teaching hospital.
I knew that he would ask if I smoked ( I did, had done since I was 11) and why hadn't I done everything to help myself, so I stopped. Cold. I'll PM you my system. He also trialled me on one of the ADHD type drugs- I wasn't ever told which one but I think it was Ritalin- the upshot of it was I went from four years chronic to a complete break of 5 weeks IMMEDIATELY. I'm not absolutely certain the stopping smoking was a major factor in breaking the chain, as the attacks came back; but when they did come back they were less intense and of shorter duration.
I also use Topomax, two times 100mg daily; imigrin oral as required. no pain clinics here in Russia.
Do read all the blurb on the left of the home page. The treatments etc are really valuable. Drinking heaps of water is vital, also cut out processed food, eat fresh/ raw food. Sounds like hell? What's the alternative? Hmmm. I eat fresh, almost never junk.
No need to get violent with your sister, Cheryl, just tell her when she has some experience with CLUSTER HEADACHE, please to pass on her valuable information. What she can and can't do with her migraines is of no use or meaning to you or Brad.
Good luck to you both, and stay positive. There's a wealth of info here; sift through and ask questions and sooner or later you'll be feeling like rainbows.
cheers peter.

0 people like this

03 Dec, 2010 - 5:20 pm

Thanks Heather for your reply...it has meant a great deal. Enjoy blissful times with your family.........birth is mind blowing, beautiful and miraculous. Grandma's are the best, us new mums couldn't do with out you. My mum (and Grandma) to our son Samson is pure gold.

Enjoy your time away.

Chez n Brad

0 people like this

03 Dec, 2010 - 8:17 pm

Thanks Peter I wouldn't call myself brave at all but any words of support I will gladly take on board as you would know, our life has been ruled by the headaches. My husband Brad is a very silent sufferer...he has never called me names nor lashed out at me....he is the brave one....absolutely! In regards to the smoking I knew eventually I would need to push the subject with him. As lovely as he is, my husband is very stubborn when it comes to talking about quitting the cigarette habit. If I'm labelled a nagger that will be a very small price to pay to get him as you said to try everything possible to better himself.

We are up to our second neurologist and second round of repeat tests of Brad's brain MRI's, cat scans and blood tests...all resulting in normal valuations. The second neurologists is younger than the first and uses email for us to update him on progress which is great because we don't need to go through such an expense to ask simple questions. I have not met him yet but Brad finds that he is interested in his case and he read up on medications and suggested that Brad use Topamax. He will also refer Brad to a well known "headache guru" but he is apparantly very hard to see. Rest assured I will put on the "nagging" cap to get a name and an appointment.

Brad has tried CORDILOX (Verapamil hyrochloride) which seemed to make Brad's headaches worse. He also tried DERALIN which had no affect at all.

Brad finds relief under a very hot shower which contradicts the treatment for dilation of vessels. He stays in the bathroom for up to 2 hrs until the headache is relatively gone. Only recently has he found that at times the hot shower makes the pain worse so then he has experimented with the cold water and this can help too. Upon looking at the site help blurb Brad will try more cold and it now makes sense that coffee helps.

Brad did try oxygen but it did not seem to work for him.

We haven't had the advantage of informing ourselves about CH's.....until now. This web site has been a form of medication for me......as a true Aussie would say...I am bloody grateful to Roger for this site.

We do have private health insurance but it seems so far that the cover here in Australia does not for cover for specialist fees unless you are being treated whilst in a hospital.
It does however assist with the physio, acupuncture & chiro. We may be missing the loop hole to gain more cover. How can we benefit more from our private health cover?

I have seen the info on this site but I will refer to it again and again.

Thanks Peter every suggestion and information I can arm myself will against CH's will eventually allow us to see a light at the end of the tunnel. Please ........the rainbow is what we want see!

0 people like this

31 Oct, 2011 - 9:10 pm

Ok so I'm posting here cause I'm scared of what my husbands recent diagnosis means for us. We have a 2 yr old and another baby due in March. He started to get headaches about 3 wks ago and is suffering at least 1 attack a day mostly after he's gone to sleep. He had the worst attack yet the other day and we ended up at the docs where they gave him high flow oxygen and in the end morphine. The doc put him on a calcium blocker. I feel so helpless and wish there was something I could do. I have seen a change in him and he's obviously exhausted as he's not sleeping well and consequently snapping at our daughter. I am just really scared. Any advice or support u can offer would b greatly appreciated.

0 people like this

01 Nov, 2011 - 2:47 am

Hi Marni. Very sorry you had to find us, but we'll do our best to help. What your husband's diagnosis means (if it's correct), is a very trying time for all of you.
If you can, sit down with your husband and go through the information on the left there. It will help both of you understand what's going on.
In particular, the "what happens" and "Whats it like" under medical info, and "supporters tips" in member pages.
After that, the information on medication- both natural and pharmaceutical- and how to keep track of it. You should be aware that it's very common for the prescribed medication not to work. You mustn't lose heart, there's a huge range of treatments, some work for some people but not for others.
High flow oxygen is very effective, but it must be used immediately an attack starts. The time it takes to get to the doctors means it's probably not going to be effective. There's a whole host of info there on how to use oxygen correctly, and how to get a home supply. Do try and give it a real go, it's by far the least damaging to the body.
Good luck to you both,

cheers peter.

0 people like this

01 Nov, 2011 - 5:30 pm

Thanks Peter, I am really emotional about it all at the moment and don't really know where to start. I've decided I'm going to ring some of the doctors on the QLD list on Friday and see if they can reccommend someone in our area (Mackay) who might know something more about them or even recommend treatment or consult with a doc up here. It just breaks my heart to see him go through this and really want to help him get help.

0 people like this

01 Nov, 2011 - 10:14 pm

Hi Peter and Marni
Sharing our update: it may help....

It has been a long time since I last wrote. We have been waiting all year to see Prof Zagami (Neuro #3) here in NSW and now know we are really lucky to be seeing him at all as he is no longer accepting new patients.

Since our visit to the Prof on Sept 27th I can finally say that Brad has improved. Prof Zagami just knew all the questions to ask. Understood all symptoms and was confident in treating Brad with new medication. By the way the Prof has formally diagnosed Brad with a variant form of CH....variant meaning that a rare type of CH has set in with Brad providing no significant period of remission with regular treatment (that is for Brad about 3 yrs suffering and no more than 5 CH free continous days).

Brad is now taking Isoptin Tab SR (Slow release) 180mg per day. When the acute pain is about a number 5-7 he takes Maxalt Wafer x1 but still finds the Imigran spray the best for the number 10's.
The funny thing was that the first Neuro recommended Isoptin but on a much lower dose and we found that it gave Brad more intense headaches. When Brad started the new dose he was combining it with Topomax and slowly came off the Topomax. The first 2 nights were horrendous and it felt like we were going backwards but Brad hung in there.

It has now been one month on the new therapy. The first 3 weeks he suffered 1-4 #10's. Last week he suffered dull headaches #3-5's and required no Maxalt or Imigran. The last 2 nights he had #10's but he feels more in-control with pain management. It is definately a decrease from one #10 every night. We are seeing Prof Zagami next week again. I have full confidence that he will help us see these CH's to an end. The Prof has said that many things we can try before heading down the path of nerve blocks.

I'm sad to say that Brad has not given up the cigarettes but has cut down.

I'm happy to say both Brad and I after the initial shock are proud to announce that our second bub is due Feb 23.....(The result of the only night Brad was CH free....Hee Hee Ha Ha!)

To Marni I so know what you are going through, stay strong. Never give up on trying to find the right help. Explore every avenue...don't be afraid to ask questions or seek out another proffesional.....it took us 4 years and 3 Neurologists to find the right help. It would have taken us less time I believe if we had asked more questions and challenged previous treatments and seeking out the Dr's who specialise in headaches. Trust your instincts and that of your husbands'

0 people like this

17 Dec, 2011 - 6:02 pm

Hi All,

How many actual supporters do we have that log into the site under their partners account or under their own account. it woould be nice to see more supporters on the site and hear what they have to say about CH from where they sit on this Roller Coaster ride that we go on.

Matt

0 people like this

19 Dec, 2011 - 11:49 am

Hi Matt

Yes I think as a supporter the biggest hurdle was believing that these headaches were actually real. Initially I wondered if it was an excuse for Brad to avoid attending social outings or helping around the house especially when I could see that all he was doing was resting infront of the TV.
In the begining (4 years ago) I knew there was something not right when he started to pop neurofen pills like lollies and since we've been together (since 1999) I never witnessed him take any medication ...not even Panadol. Even after his shoulder reconstruction (1999) Brad never took the morphine or pain relievers perscribed, so I knew then he had a high pain threshold.
Brad also loved his beer, so when he stopped buying his beloved Melbourne bitters again I knew this headache thing was serious!
Brad is a strong person, your regular alpha male and the turning point for me to become actively involved and to start listening to what was going on with him was when I woke in the middle of the night and witnessed him curled up under the shower, crying and saying he didn't want to live anymore. This was totally heartbreaking. The LISTENING part from then on became so much easier and I was able to understand, sympathise and know that he needed my support more than ever.
Our last appoint with the Prof saw Brad increasing his Isoptin dose to 280mg a night and 190mg in the morning his clusters have now become 3 days on and about 4 days off. We are booked for a nerve block on Jan 5th, the Prof said there is no concrete outcome every individual is different....we are crossing our fingers and toes!

0 people like this

20 Dec, 2011 - 9:56 am

Cheryl and Brad,

Do you know the name of the nerve block that they will be doing, not too long until the new Bub is due so good luck with that. I wish that my wife would get on this site In the supporters section so we can get this section used more actively. As we know the supporters also suffer as much as we do, just in a different way.

Matt

0 people like this

20 Dec, 2011 - 11:51 am

Hi Matt
The nerve block is called a GON block (Greater Occipital nerve block) to be honest I haven't read into it...wether they inject something or how it is performed. Prof Zagami works closely with another associate from the USA who recommends and has perscribed approx 200 nerve blocks and uses this method as a regular course of treatment for CH sufferers. Prof Zagami has referred approx 50 patients and uses a radiologist who pin-points the nerve via Ultra sound and he uses a needle into the head for the procedure.

Prof Zagami uses this Radiologist in Randwick NSW as compared with other radiologists who do not use an Ultra sound to pin-point nerve and go in willy-nilly

Brad or I haven't asked if it will be painful etc all we know is we have to give it a try.

Yes bub is almost here and we are excited. I too hope that your wife jumps onboard this site but she can also be supportive in other ways and as simply as trying to listen to you...but it can take time.

Wishing you lots of Christmas strength whilst you are currently suffering

0 people like this

20 Dec, 2011 - 12:55 pm

Cheryl,

please for your's and Brad's sake please lookup your proceedure and find out what it is all about, you don't want to go into a proceedure not knowing what is going to happen.

I saw the Prof once but i didn't like him, i thought he was rude. You are right my wifr should join up and share her experiance with dealing with me.

Matt

0 people like this

21 Dec, 2011 - 6:22 am

Hi everyone, and particularly Cheryl,

I was interested to pick up that Brad has had a shoulder reconstruction. My son, who doesn't get CH, has had seven shoulder reconstructions as he has abnormal connective tissues. My daughter also has abnormal connective tissues and is the one with CH.

Connective tissue disorders are notoriously under-diagnosed, most shamefully when people die very young of heart failure and are diagnosed at the autopsy. (You may or may not be aware that all professional basketballers in the US are now checked as the number of deaths was unacceptable, and those with connective tissue disorders are banned from playing.) If a person is more flexible in the joints than average, they may have abnormal connective tissues.

Anyway, the point I am trying to get to in a very round-about way, is to question whether there might possibly be a relationship between abnormal connective tissue, which affects blood vessels just as much as it affects joints, and the presence of CH???

It seems to me that both CH and connective tissue disorders are under-diagnosed, so the chances of a person having an actual diagnosis for both are quite slim. Researchers therefore would have little basis for suspecting a relationship between the two. My daughter with CH only got her connective tissue diagnosis after her brother was injured. But it makes sense to me that an abnormality in the blood vessels in the brain is very likely to be involved in CH. Scans do not show such abnormalities until a blood vessel is seriously in trouble, but doctors are starting to diagnose connective tissue disorders by genetic analysis and new potential therapies are emerging from this research.

Is there anyone else out there who has CH and is more flexible than usual, or has sloppy valves in their heart, or any other signs of abnormal connective tissues????

This may be a completely random idea, but on the other hand if there is a relationship then the new therapies for connective tissue disorders might just be of relevance for CH.

Thanks for reading all the way to the end of this ramble.

Penelope

0 people like this

21 Dec, 2011 - 6:21 pm

Hi Matt and Penelope,

Wow thanks Penelope for info about abnormal connective tissue disorders, I will try to investigate and see how we can go about testing Brad. Brad also requires the other shoulder reconstructed, when he will do this is a big ?

Ah yes Matt we were warned about Prof Zagami's personality, we had prepared ourselves and I guess we didn't find him as bad as we thought he might be. I can tell you that after seeing many specialists and 2 other neurologists...he is by far the most knowledgable about what to perscribe and how much for CH sufferers.
The Prof is a person who wants clear concise answers so as to know in what direction to go for treatment the Prof bluntness maybe construed as rude but I believe he is very methodical and only wants the best results for Brad. I can say this because I too work in a hospital and deal with Dr's personalities.
Nerve blocks to the head are quite common these days especially for migraine sufferers and is a relatively non-invasive procedure compared with brain surgery. Together Brad and I have suffered CH's for 4 years already and he has been out of regular work for 2 so at the end of our rope we are open to any avenues of treatment especially when the drugs he takes now such as Imigran can lead to long term damage.
I will update you on what happens for the procedure and let you know from Brad's perspective how it all went. He is understandably scared of the unknown but is also willing to try anything to get his life back.

Cheers Chez

0 people like this

21 Dec, 2011 - 7:46 pm

Cheryl and Brad,

You mentioned that Brad has worked for 2 out of 4 years, did you know that you can apply to Centrelink for a Disability Pension as CH is now a recognized condition for a disability. The pension is means tested so they will take into account what ever you earn Cheryl. You will need to give them letters from your GP and your Specialist.

Good luck with what ever you decide to do.

Matt
Silent Planet

0 people like this

27 Aug, 2012 - 1:03 pm

Hi All
I have recently come across this website and am just getting the hang of how to access this wonderful source of information. Thanks for all the contributions. I have got so much from reading your updates etc.

I have a 23yo son who is a chronic CH sufferer - and so the whole family suffers with him.
When that unruly beast attacks (everyday!) - we all feel the pain in some way with each pulsating beat. The agony that anyone with CH endures and the debilitating effect that it has is beyond description.
So for all of you sufferers - thanks for taking the time to share. It gives us supporters more ammunition with how to try and offer some help! It always seems inadequate - but it is encouraging to say the least.
He has tried many of the medications that are on offer - Verapamil, Lithium, etc as preventatives and O2, Naramig, Maxalt and more recently the Imigram injections as an abortive. Most recently, it is only the injection that gives him some relief. Nothing else is helping at present. It is almost like he has become desensitised to everthing and has been taken off everything.

He has an appointment with the Prof in Sydney (we live in Melbourne) at the end of next month (September) and I was very interested to read the posts by Matt and Penelope.
Any updates anyone?

Cheers
Kurosaki

1 person likes this

27 Aug, 2012 - 3:10 pm

Hi Kurosaki,
welcome to the forum, very sorry you had to find us.
Most of us here know what it is to suffer, but there's surely nothing more heartbreaking than being the mother or spouse of a sufferer.
There's a heap of information on the left there, sift through it to arm yourself with knowledge.
You mention your son tried oxygen- maybe re-visit that to see if the method used was correct. Done incorrectly, it's ineffective, and many doctors are not familiar with the effective method. Seach through Barry T. Cole's posts- he's the full bottle on O2.
Also, may I suggest you start a post yourself, (we don't bite) that way we won't get cross threaded or lose you in the confusion?
Just click on the "start new thread" thingie at the top, not really important which one- supporters, sufferers, newbies, chat- we'll pick you up regardless, and do what we can to help.
cheers peter.

0 people like this

08 Sep, 2013 - 1:03 am

I'm new here.... Support is one of the main things we need during these times, maybe not to begin with, but at some stage we will.
After many many years of trying to deal with these on my own, I find I am no longer in the position to focus on my breathing to ease the pain. I have had to ask for help in pain management.... "Please talk to me to put my focus on you rather than the pain". I have had to wake my daughter on the second headache during the night to get a drink for me...
It is a big thing to try to deal with, and I find that I think about what everybody else will witness and they should not have to deal with it.
2 weeks into my last headaches, my daughter said to me "I am stuffed, mum. I can't imagine how you feel". My heart sank... I had 10 weeks of these left to go through, then the task of regaining my strength back again. After the headaches, she said to me "There is nothing worse than seeing your mother cry". The realisation of what supporters go through seems as bad and confusing as the headaches themselves.
Without her support, from the age of 7, cooking, cleaning, getting her little sister ready for kinder and school, darkening the house for me, making appointments, paying bills, doing the shopping..... I don't think I would have coped. (She is now 17.)
On behalf of all us suffers, I would like to thank all of you supporters... Without you we can not survive.
We may suffer with these headaches, but we also suffer with feeling like a burden during these times too, we suffer knowing that you suffer through them too.
We are grateful with all the help and support you give us. We are also frustrated that we are incapable of doing the most simplest of things and need to rely on you.
Please do keep up the good work, you show us the love and respect we need to keep fighting this fight!

We know the pain of suffering, but don't understand the pain of watching someone suffer.
You know the pain of watching someone suffer, but not understanding the pain we suffer....

I can't think of what might be worse?This post was edited on 08/09/2013 at 1:10 am

0 people like this

04 May, 2014 - 7:55 am

HI everyone
i have had these for just on 40 years
when they hit they cycle through a 10 to 12 hour cycle (duration approx 5 hours) for about a week then either start again or leave for week,fortnight, month, 3 months then back
in the last few years they have changed to incredible intense, impossible to move mid stride, but last 1 hour,
or cycle through every 5 or 6 hours for a few days normal pain
or change to a sharp stabbing pain but its tolerable but last all day.

at the moment i am 2 days into a 10 to 12 hour cycle one duration 3 to 5 hours
i have no idea why they changed for those few years.
i get very foggy and forget things
beats me why i am even sharing this sorry

0 people like this