I really don't know what to do.  I am 27 years this is only my 3rd episode, started 6 yrs ago, had a 2 yr break and thought it was over.  My previous episodes lasted a month, this one started last night and I am soooo depressed thinking that I have to deal with this for a month.  I had an attack at midnight that lasted 2 hours, another one at 3 am, went in to work late at 10 30 am, had to come back home when another attack at 11 30 am, left work crying, could barely survive the drive home.  Not another one yet since then, afraid to fall asleep.

Currently only using menthol alcohol applied to the forehead, small relief.  In the past used tonopan, but it caused bounce back headaches continuously, imitrex didn't work, someone please tell me what to do, I don't have the strength to get through this for much longer  ....btw Live in a small island country in the caribbean, access to neurologist and certain medications limited

Given your location and limited medical resources, it's clear that you will have to try what many of us have had to do: Find a doctor who is open to receiving medical material from you so that you can educate him in how to treat cluster headaches.

Many of us have had to help our doctors learn how to help us. When you have a good blending of personalities it can be a winning combination!
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First issue is for you to start to learn how to care for yourself and have some material to print out to share with any doctor you consult.

So, start with the PDF file below.
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Print this out for yourself and the doc:




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--link, line above--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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If you can afford it, buy the first book to share with any doc who will work with you. The second book for your education.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Start exploring the buttons, left, starting with the OUCH site and many internal links you will find there.

Also read the many messages you will find here. Many of them won't be clear to you at first but as you learn the language you will begin to see yourself thru other's experience and you will gain confidence and hope that help at available.

Do stay in touch!

Given where you are I'd look into the welding oxygen route. Easily obtained, cheap, and for me will abort an attack in less then 10 minutes.

If you have access to the imitrex INJECTABLES, do give them a shot. As fast as oxygen, I always keep them around when on cycle in case I get caught away from my 02.

Grab some energy drinks for now, Rock Star, Red Bull, try chugging one at the onset, will abort or reduce an attack for many.

Joe

Art S wrote on Aug 26^th, 2010 at 9:25pm:


ACK! Sorry Zee and everyone else who read that - I must've been thinking of how I had seen someone recommending a regulator from a scuba shop.   

The best part about 02 is it really has no side effects. Whether you use it to abort 1X a day, or a dozen. You really can't over use it, nat it'll amaze you how fast you're done dealing with the pain.

As to what causes it, still pretty much a mystery, although they are focusing more and more on a messed up hypothalamus, probably something you were born with as opposed to an environmental cause......but no one knows for sure yet!

Joe

Zee wrote on Aug 28^th, 2010 at 4:56am:


For the first, excedrin contains paracetamol, aspirin, and caffeine. Given it's a tablet, it'll take 20-30 minutes to get into your system and it's unlikely to do much to curtail the pain from the CH. You'd be better trying a coffee or a red bull (or similar caffeine / taurine drink).

Guiseppi posted in a different post that cannabis will act as a vaso-dilator, which is likely to help increase the pain. Many things that help act as vaso-constrictors.

Hi Zee,

Sorry you're having such a rough time of it, but you are getting some very valuable advice. Pure oxygen at a high flow rate (>15LPM) works wonders for the majority of CHers. With any luck at all, you'll be one of them. After you've gotten a proper diagnosis and followed the advice you're getting here you should have some measure of control over your HAs. Once you have, check out Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and the Message Board there. Many folks are finding long-term relief from sub-hallucinogenic doses of psychedelics. The video talk mentioned by bejeebers in his first post is a great introduction. Good luck!

Ron

Zee wrote on Aug 27^th, 2010 at 8:47am:


I don't really think so Zee.

And people who have cancer or are born mentally challanged, what they have done to deserve that?

Some people never smoked and ate healthy food and led good life-style and yet get cancer and die or children being born with mental challange or being crippled.

They have done nothing and they have disorder : /

Zee ... I am so sorry for your ordeal.

I don't have much more to add to what's already been said, except that you have to slam those energy drinks ... I actually use Mt. Dew because it's so packed with caffeine and not quite as carbonated, thus, I can slam one or two faster.

I use cold packs religiously. I use the bed-buddy (beaded) type and keep a few in the freezer at all times. The instant I feel a hit coming, I get up out of bed, run to the restroom and relieve myself (sorry, but I really think it helps and it makes room for all the Dew I'm about to fill my bladder with) slam at least one Mt. Dew, sometimes two, walk for a few minutes or get on the elliptical, just to get the juices flowing ... then take the cold pack to bed and get really still and quiet. Most of the time, this works for me. But if I miss that window of opportunity, I'm looking for an Immitrex INJECTION (pills worthless), which is tricky for me right now as I'm out of work and no insurance, so I have to go very sparingly.

Again, really sorry you're having to go through this ... you can get through it ... the people here are incredible ... let them help you.

Red