Our group has several thousand members scattered around the world and we look forward to offering you the support and help which has brought you to CH.COM.

While  we want to offer you the knowledge & experience which our common life with Cluster Headache has given us, let us share a few thoughts with you about how you can immediately help us to be the most effective in meeting your needs.

     1. Because the medical training, experience and skill level of physicians who treat complex headache disorder is so uneven in the U.S., much less in the rest of the world, we need to know where you live. Our diverse membership will be in a better position to identify local resources for you—physicians, specialty clinics, and so on—if we have this base line information.
     2. Then it would help us if you would give a grief history of your experience with disabling headache. A brief outlining of information such as these kinds of data would be most helpful:

           A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?

           B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.

           C. Have you used or explored any alternative treatments (and ditto)?

           D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?

           E. Do you have a good, basic understanding of Cluster and its treatment or do you want sources of  information about these complex disorders. (Because there are many dozens of kinds of headache, and treatment often erratic and lengthy, we would encourage you to start a headache diary.       3. On the main page is a series of buttons which you should explore. Also, read the many messages which are rolling over these pages. You will find yourself in the experience of others, learn from their experience, and appreciate that you are not alone—one of the great survival skills in coping with your headaches.

    Many times I have spent far too long in trying to get help to a newcomer because they didn't have their place of origin in their on-line profile.  Obviously we don't want your address but a city and state will be very helpful to us and ultimately to you.

Linda Howell, with help from Bob Johnson

I am forty one years old. I live in Lakeland FL. I had my first cluster cycle in July of 1988. I was eighteen. I was alone and scared and so I just dealt with it. I had two a day for two weeks. Two years later I was attending Florida Southern College and I had another cluster. I had no idea what the hell was happening. After a day or so I went to the ER. A young doctor there said, "You've got Cluster Headaches" and put me on O2. The O2 relieved the excruciating pain but then I was discharged with Furinol w/codeine, which did nothing but cause rebounds. But I had the knowledge I needed at that point. I still get them about every two years . Two a day unless I drink then that adds an extra one and the cycle lasts about two weeks. I have been to several doctors in the past but I do not tell them "I have clusters" I tell them my symptoms and signs. If they make the wrong diagnosis I get up and walk out. Once I told a General Practitioner that he was an idiot and had no business practicing medicine. Pain and lack of sleep makes me grumpy. Plus he was an idiot. He said I was having an allergic reaction. I am a SCUBA instructor so  I have an O2 kit. Sometimes I can get my tanks filled. I began taking cocaine....

First of all I'd like to say thanks to all of you for being here. It's really fantastic to find a supportive group of folks that know all about this monster. It was very daunting to come down with headaches that, 1: I dont really understand and 2: didn't, at the onset, think I would survive. It really seemed to me that anything that could possibly pack a wallop like that must be lethal or at the very least, permanently debilitating. I thought I was having an aneurysm or stroke or who knows what but I didn't think I would be getting up off the floor on my own steam....not ever.

My name is Brad. I'm 46, caucasian, work in Vietnam and live in Bali. I had my first real bout with cluster headaches in Singapore exactly 2 years ago. I was terrified when I got the first few. They lasted for a couple of hours each. They took my by storm, blasted me out of bed and had me writhing on the floor in a matter of minutes and left me just as fast...obviously a little worse for wear. I would have gone to the ER but couldn't imagine having to deal with ambulances, paramedics and doctors and the whole process of checking into a hospital alone in a foreign country. I seriously thought I was dying anyway and wanted to do it alone & on my own terms. When it was over I couldn't believe what had just happened. More to the point, I couldn't believe that I was OK again. Seriously??? WTF??? I found a neurologist that night on the internet and was waiting for him as his office opened the following morning. I told him that I'd just had a headache that hurt WAY more than a headache should. He took me onboard immediately and sent me for an MRI that revealed nothing unusual. After a bit of Q&A he told me I am suffering from cluster headaches. Until that very moment I had no idea that such a thing even existed. I was given a big bag of steroids and single shot self injection kits and sent on my merry way. The typical ruff-neck mentality in me never had any compassion for migrain sufferers and used to joke that it was all in their heads. Certainly wish I could take that back now. The headaches came twice a day for the next 6 weeks but the medication made them, let's say, just doable.

So what brings me here today, 2 years on, is to ask some advice on how to get thru the next round...with no medication and no oxygen. Nothing. Logistically speaking, I'm in a terrible situation. I'm the captain of an offshore drilling rig. I'm writing from the middle of the south china sea, miles off the coast of the mekong delta. I'm going to be here for 3 more weeks, like it or not. The very troubling thing is that last night at 2:00 am, for the first time in 2 years,  I got knocked out of bed by a cluster headache. What I gather from all the information out there is that this is not going away for a while and is only going to get worse.
I have some folks in Ho Chi Minh City combing the pharmacies for imitrex at the moment but so far they aren't having any luck and seemingly it is a controlled drug in Vietnam and not easy to get.

I'd like to know if there is any way to really mentally prepare for a cluster headache? Ive seen people have surgery with no anesthetic by simply getting themselves in the right frame of mind before the procedure, I believe thru meditation or self hypnosis. Does anyone out there know some of these techniques? Given that it's my only option at the moment, I'd sure like to think it's possible. 

Thanks again to all of you out there. Lovely to see people with this outrageous affliction networking and helping each other along.

With My Warmest Regards,
Brad Fitzgerald.

 

Cheers Joe...you're a legend. Never considered the welding shop for O2. There's heaps there. Your last name isn't  McGyver is it? I've got a mate here that has some sleeping pils, not melatonin though...I think it's soma or something like that. Prescription stuff. We've got a huge walk in freezer in the galley that stays at minus 20. Lots of room to thrash around in there. The rig is dry, no booze out here even if I was inclined to neck a jar or 2. Appreciate the heads up on the trigger though Pal. Can't thank you enough for your reply. No doubt it's going to make the next few weeks way more tolerable. All the best to you Joe.
Brad.

That's brilliant Bejeeber. Sure appreciate you for taking the time to chime in. The "alternative" approach might just be worth looking into as well. Mushrooms are actually legal in Bali.There's quite a few funky little shops that specialize in them. I'll give it a go when I get back there. Still another 2+ weeks at sea to get thru first. Thanks again for the advice mate. I'm feeling a lot more confident about facing this again since you lads dipped in for me. Cheers for that!!!
Brad.

hi I am new to all this. I had a head injury last summer and a headache for most of the fall. Then about a week and a half ago I started getting this horrible pain on the right side of my head. On the third day I finally went to my family Dr. Who put me on all kinds of pain meds, muscle relaxers, anti nausea pills. None of it helped and the attacks kept coming. I thought I was going crazy. So I went back to see him the next day. I have now tried more pain meds and still nothing helped. So back to the dr again. Only this last visit he said it could be cluster headaches. And that is how I found this site. I had a ct scan today and am awaiting my results. I don't understand why this is happening. I am 34 and female from Iowa. I just want it to stop.

Well I just got back from my GP more frustrated than before he had me try a dose of maxalt. And it hasn't helped. I just don't understand why nothing is working. Tramadol makes me sleepy while I sit and hurt. Flexirill makes me nauseated so with it I have to take pheynigan.

hello everyone..been suffering cluster headaches for 25 years now have only been diagnosed last year by a stand in doctor from india at my surgery he knew straight away what it was...where other doctors have fobbed me off with migraine..hav'nt had any meds apart from weak painkillers and anti-depressants..lol..cycle of headaches is every 2-3 years now and waiting for the next cycle now..as for work i've had 56 jobs all lost to cluster..1 girlfriend in that time shes now gone after 16 years..aint hanging around for the next session of pain..wish i could walk away too..no sign of docs reffering me to any special help they all think they are they can cure it themselves.glad i found this site bye for now x

Hi I live in Grant, FL. I was diagnosed with Clusters once in Horseheads NY buy my Family Doc in 97-98 (can't remember his name because I was only 10 or 11) and another time about a year ago by my family doctor here in Palm Bay FL because they didn't believe me and my boyfriend was worried and made me go during a cycle, His name is Dr. Lai. I have taken prednizone, maxalt, some mild stuff for high blood pressure, anit depressants, lore tabs (ect), and some other pain killer they had me take every morning when I woke up to prevent them that didn't work like everything else. I just heat up a hot/cold pack in the microwave or take a super hot shower, and maybe take some excedrine if I'm desperate enough even though I know it wont work.
I can't sleep, or eat when I have them. Lost 15 lbs during my last cycle because I was afraid if I ate the wrong thing another one would come, and I also worry that if I go back to sleep when I get one I will wake up with another. I can't do anything really except roll around on the bed or floor holding my eye and trying NOT to cry because it makes it worse. I've done sooo much research on these because I'm just waiting to see the one thing on Google that lists a cure or something. Everytime I go see the Doc about it they give me a list of sites to read through ect. so I'm in no way hurting for info about the topic. Just wanted to talk with someone who understood this cause people who don't have it, just don't get it and it drives me nuts sometimes.

Welcome to the board Anzier, I hope you have a LONG stay! When you get a second, tell us a bit about yourself, do you have a decent doc and treatment plan? Glad you found us.

Joe

Hello everyone,

I have been on this board as a "guest" for quite some time, but I "officially" joined last month.  There is so much good information here that I am so thankful that I found.  Here is the information requested about me.

           A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?
- Yes, I was diagnosed by my GP in 2008 and a Neuro in May 2011.  I was first diagnosed by my wife's uncle who is an ENT.  He told me what he thought, and after some research I realized he was correct.  This is how I was able to explain everything more clearly to my GP and Neuro.  The only other medical concern my GP has is I have slightly high cholesterol, but I do not have to take medication for it.

           B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.
- In 2008 after my GP diagnosed me, I was given oral Imitrex.  This did next to nothing to help, but one time it completely aborted the headache.  In 2009 I was given the nasal Imitrex, and this did a better job of helping my headaches.  In 2010 I was prescribed Oxygen, and this did wonders for me; however, the dosage was not correct, and after reading on here i was able to fix it.  This allowed the Oxygen to be more successful.  In 2011 I was prescribed the injectable Imitrex.  This was a God Send for me as it was the first time I felt a headache getting near the point of no return, and the medicine worked.  After 4 minutes all of the pain was gone.  I feel very lucky this is working so well for me.

           C. Have you used or explored any alternative treatments (and ditto)?
- I have not ever used or explored any alternative treatments.

           D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?
- The only limitation I face is when I am awoken by the beast.  The nights this happens, and the abortives do not work, then I will not be able to do anything the rest of the day.  Fortunately, with the physical symptoms we all experience during an attack, work understands my headaches and does not give me any grief if I have to stay home.  I have gotten quite a few at work, and usually I just stay until is passes using my Imitrex.


I hope this information is beneficial to everyone, and I look forward to becoming an active member of this community.

While I was not officially diagnosed until 2008, I have been suffering from these headaches since 2002.  The first diagnosis I had was they were just "stress" headaches.  I was so happy when they were finally appropriately diagnosed, and I learned it was not "my fault."  I was also then able to begin using the Imitrex and Oxygen.  Thanks for all the postings here, I have learned about different therapies.  My Neuro has stated that in the fall when my next cycle is scheduled to begin, that we will begin trying to start a preventative plan for meds.  I truly hope that works, as I would love nothing more than to not have to worry about this for two months in the fall.

Off-Topic replies have been moved to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Kaamila, I moved your post down below, under a new topic "Kaamila from the east coast" where more people will read and respond to it.

Joe

Hi my Name is Jason and I live in New Zealand, I have suffered these CH's for atleast 20 years.

A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?

I was diagnosed about 6weeks ago, but as posted above I believe I suffered them along time. I dont believe my previous doctor had a clue but heres hoping this one is more onto it.

           B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.

I have used them all I believe.. from normal Panadol to Imigran and Topamax.. atm none of them are really working as good as I'd hoped the only really effective one is Maxalt Melt which helps (sometimes) with the ones I have during the day, I am still having trouble with ones I'm having early mornings or night ones :/

           C. Have you used or explored any alternative treatments (and ditto)?

no I have not, but I am hoping to get my hands on Oxygen as I've heard it is good at chasing the beast away.

           D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?

I need them to go away as I am losing too much time out from work and from my Kids and Friends Family and especially my Wife who has been my rock in times like these, and who actually found this most excellent site.

I do have a limited understanding of what a ClusterHeadache is but surely am an expert on what they do, I am sure I will after reading here on this site that I will eventually get myself up to speed with the Beast. I hope to slay it someday.

WARNING LONG POST!

JaysSoreHead wrote on Jun 29^th, 2011 at 8:18pm:


Hi Jason,

I'm Zenica,  I figured I should post my results here so that you can see what you can use in NZ and what I have found effective.

I live in Mt Wellington as a new resident.  I have only been in country for 9 months but I have a lot of past medical history from doctors in the states.
To answer your questions I will list them in the same order as asked at the top

A: Have I been diagnosed?  Yes and no,  in the states I was diagnosed with Chronic Fatigue and Migraines by a neurologist in texas.  The migraines started when I was 15 after a week strong attack that eventually left me hospitalized when none of the medications could even touch the pain I was in.   I would class that week as a Kip 9 according to the cluster headache forum.  The reason I believe this original diagnosis was incorrect is that those headaches never completely stopped.  I have a conditional shadow (a low grade headache) and a series of spikes in pain each day with no breaks.  When I am not spiking I am still attacked by the shadow of the beast.

Migraines don't usually last for years  and they really don't come in daily strikes.  The reason the US doctors believed this was my condition was because the location of the pain was so radically different from CHs.  It was located in the upper back part of my skull for some reason.  I doubt this is "cluster related pain" but my final diagnosis of Clusters came about two years ago when I fractured the upper part of my eye socket.

After the accident my main headache became completely focused on that part of my head and behind the eye.  This should have gone away after the prednisone and eventual healing of the bone.  It didn't.  I still occasionally get the original migraine pain in the back of my head but now the main pain is the cluster attacks.

B: I have believed that I actually suffer from both diseases,  migraines and clusters and was actually told by my doctor that this is not only possible but is the reason I have not had any real help.  Having two conditions,  I need two forms of treatment.

Treatment for Migraines:  Tramadol occasionally 50mg,  ibuprofen standard dose, amitriptyline 100Mg daily  (ami is also used for preventative clusters).

I have tried every product available from the states as preventatives and so far I have either been allergic to some or found that they did not help combat the pain and damage from long term suffering.  I will instead note the new structure that I have found successful.


C:  Alternative treatment: for Clusters:  Several weeks long now, I forget exact date when I started it.  

Batch's Regime but with stuff you can get in NZ Below...  My Gp did not and still does not agree with the results that Batch worked on and believes that no one should take vitamins in such high doses.  I have taken consideration of his point and I still STRONGLY believe that Vitamins are the cure for me.

Here are the brands/doses that I take once a day with breakfast.

"Ethical Nutrients mega magnesium powder" which contains 300mg magnesium,  3.0 grams taurine (amino acid), 300mg Vit C, 67.6mg calcium, and 52mg potassium.  

"Cal-D by blackmores" which contains 600mg calcium and 500 IU Vitamin D3.

C:  Not really an alternative now... 100% Oxygen at 20ltrs per minute on non-rebreather mask.  I use O2 for spikes I can't control the normal way.

A kip 9 beast is killed in 6 minutes now with o2 but I am finding that after taking the mag powder and calcium I no longer have morning attacks and my evening attacks are much much less frequent and much less severe.

I attribute this new success on two things,  Magnesium,  Which is a well known deficiency that can cause extreme headaches and is also known to combat the signs of fatigue and stress.

and Two:  Taurine, which is found in Red Bull and Mother energy shots.  Taurine is very successful for me,  I drink one can of RB or Mother and One Spike is obliterated.   Taurine is known as a "booster" which helps make all of the vitamins stronger and easier for the body to absorb.

D:  I am a student at Auckland University.  My limitations may not quite be as "severe" as others,  perhaps only because I have a strong constitution for pain tolerance after years of suffering.  I also have a few people who do understand my condition and stand by me always.   I would never have got the courage to try the medical route again if not for those friends who love me so much that they take it upon themselves to look for the cure. 

My worst problem is simply that I am misunderstood.  In pain,  I still maintain that happy appearance that makes people believe I am fine even when I'm not. When I am really bad and can't contain it,  it is confusing to others... they are usually content to say "oh a migraine,  you need a dark room and to be still"  Any cluster sufferer would know that darkness and stillness are their worst enemy.

I wish that I could explain my state  (of always being in pain) and not look like a loon to those around me.  I believe if I let the public see inside they would probably lock me up.  I am not a junky or someone pretending to suffer for the attention,  I am simply a silent, but strong, pillar for support who occasionally wishes for someone else to take the load.