Hi

I'm new here but pretty glad to have found this website. I've been diagnosed with cluster headaches . I'm a freelance illustrator and a mountain bike and BMX coach and have a great life with my lovely girlfriend,cat and goldfish, but the last two weeks have been hell. I've read some of the reports by others on here and i really do share your pain. Mine started about 4 or 5 years ago but i never thought it would come back. It did. Being a mountain biker I've broken a fair few bones but i would re-break everyone at the same time to have these attacks stop. I was just coming home from a great day out with a bunch of kids that I'd coached at the BMX track when as soon as i walked through the front door 'it' started and it hasn't stopped since. I'm scared to go to bed, i can't ride my bike and i can't go to the pub!
I've been swallowing handfuls of codeine and punching the wall until my knuckles bleed, crying and shouting, praying for it to go. It seems it won't go but then, it does, just like it appeared. And i'm left with a hangover the size of Wales and buggered knuckles from wall punching. What I don't understand is why i can feel totally OK through the day, happy even!?
I'm sat here writing this and looking at my girlfriend who's asleep on the couch and she looks peaceful and happy ( probably dreaming of kittens or mountain biking i think) and I have no wish to sleep or lie down because as soon as I do you know that they are coming. I hate 'them'. I've found that I can delay them and sometimes stop them by putting heat pads all over my head, but it still feels like I'm only delaying the inevitable and so the cycle starts again.
The last time I had the attacks they stopped liked they started and I can only hope that it happens again, and sooner rather than later. I want to ride my bike and hit some jumps and muck around with my mates in the woods, not cry and drool spit all over me.

Sorry, i feel like I've ranted my spleen out but I hope you understand.

On a lighter note my favorite colour is green, I love juggling and festivals

many thanks

teapea

Glad you found us BUT--you left out the most imortant part: what are you doing to relieve the CH?, are you seeing a good headache doc?

The codeine has got to stop. It won't help with clusters and leads to too many problems.

Enough fussing at you.... Let's get started.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or  On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Start educated yourself. Print full article; link on line 2.
 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Any doc you see should be Rx drugs from this list of current therapies. DO NOT see just any doc, even neurologists too often lack training/experience in treating headache.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Start exploring the buttons (left) starting with the OUCH site.

Finally, what questions do you have. Our strength lies in a real depth of knowledge and experience.....

I like beautiful sunsets, long walks on the beaches, and poking dead animals with sticks ....but enough about me!

I use a 2 pronged approach in attacking the beast. I'm 49, male, episodic sufferer about 31 years, my attack plan:

1: A good preventative medication. That's something you take daily while in cycle, that's when you're getting headaches, the goal being to reduce the frequency and the intensity of your attacks. I use lithium at 1200 mg a day, blocks about 70-80% of my attacks. Verapamil and Topomax are 2 other prevents I see a lot of people on the board having success with.

2: A good abortive regimen. A headache starts, now what. Pitch the over the counter stuff and those opiates. They don't  touch CH and cause more misery then you'd ever need! Read the oxygen info link on the left. I can STOP an attack in 6-8 mnutes using just oxygen. It should be your first line abortive, it's cheap, fast, effective, and no nasty side effects. I use Imitrex injectables as a last resort when the oxygen fails me.

That's my routine. It seems everybody has a slightly different routine that works for them. It takes patience, an understanding neuro, and a little time, but it's damn worth the effort. All of the above medications require fairly close monitoring by a qualified doc.

For now, try slamming down an energy drink at the first hint of an attack. Monster, Rock Star, any containing the combo of caffeine and taurine. Many can stop or at least really reduce an attack by chugging one of those at the onset. read carefully all of the articles Bob posted for you, they represent the latest and greatest in what's working.

Welcome home brudder, it's good to have you here!

Joe

Welcome.

          Get out and ride that bike, dont let this shit keep you from doing what you do. I love the coach in you, and from one fellow clusterhead coach to another, I never missed a single practice due to CH. I refuse to give in..  Beleive me we all know about the not wanting to sleep deal but.. You got to get on a somewhat of a schedule of sleep. Ride on Coach..



                               Coach Bill