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   

Hi Zee,

People constantly come on here reporting that imitrex doesn't work for them, and 99% of the time that turns out to be because they've been prescribed the wrong form - pills.

Imitrex pills are ineffective for CH, but the injections tend to be very effective.

Hmmm you're in the Caribbean - I bet there's a lot of scuba oxygen used there. Check out the oxygen info link to the left of this screen. Legions of CH'ers swear by O2 for aborting CH atacks, and if you can't get it prescribed, I'm thinking scuba might be a way to go.

Also, there has been a lot of attention lately given to CH'ers finding prevention success with psilocybe mushrooms. Here's a video talk on that subject by one of our fellow CH'ers:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

EDIT: References to scuba struck through now because it was very bad and wrong advice.  :-[

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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!

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Zee, sorry you had to find this place, but be glad you did.  Read up on the O2 info START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE it really helps most people.  Scuba won't work, it's just compressed air, (sorry bejeeber).  If you can't get a script, welders O2 works just as well I hear, plus fairly cheap.  Shouldn't be to hard to get some of the preventative stuff like verapamil, prednisone, etc.

There's a lot of information in here for you to read up on and I hear there is a lot of inserested stuff over at the clustbuster site.

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

Zee,

You're between a rock and a hard place with our disorder.  The best advice I can make is to echo  Bejeeber's post on oxygen therapy.  Try to find a welding supply store in your area and rent or lease a big welder's cylinder of oxygen.  That will not require a prescription...  You can also get a good 25 liter/minute, CGA-540 type, oxygen regulator over the Internet that will mate with medical as well as Welder's O2 cylinder valves for $25 and up or spend $190 for a great 0-60 liter/minute regulator from Flotec Inc.  When you have the above equipment in hand let us know and I'll send you some procedures that work exceptionally well in aborting the pain of your cluster headaches.

In the mean time try to find some calcium citrate tablets and wash them down with fresh limeade or lemonade.  You can also get Baja Bob's sugar free margarita mix over the Internet for $5 a packet that makes a half gallon of mix.

This combination will help lower the frequency and intensity of most cluster headaches.

Take care and hang in there.

V/R, Batch

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

Scuba won't work, it's just compressed air, (sorry bejeeber)..

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.   :-[

Thanks for all the advice guys, only getting a couple hrs sleep every night, woke up with CH, feels like another coming on, looks like I can't make it in to work again...

I will definitely try looking into the O2, imitrex shots and other stuff that you guys recommended, let you know how it works out.  BTW are there any risks or side effects with the O2, don't want to solve a problem and create another? 

This is just so depressing...I'm really in a why me place right now...I keep on thinking what I've done to bring this on...I mean what do we all have in common...heavy drinking as teens?  overstressed?  just on god's wrong side??

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

Two suggestions were made to me today just need to know whether they're worth trying:

1 - excedrin for migraines
2 - cannabis

Don't mean to be a bother but I'm only one person and I can only experiment with so many treatments.  Can't get in to see my doctor until Thursday to look into the O2 or other prescriptives, just managing until then, tried the energy drink before onset, didn't seem to help, couldn't drink the whole thing though

Only strategy now is to avoid falling asleep...hence here at 4am

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

Two suggestions were made to me today just need to know whether they're worth trying: 1 - excedrin for migraines 2 - cannabis

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.

What Mike said! Agustine just recently posted the one time he tried weed as an abortive, it put him into a whole new realm of CH pain he does not care to ever visit again! It's a significant Vaso Diolator...which is the opposite of what we're shooting for.

As to Excederin Migrain.....used very sparingly....it's effective for me when I get persistent shadows that won't go away. Any consistent, long term use of OTC meds can end up causing rebound attacks and risks secondary effects if they become abused.

Joe

Zee,

Don't blow off the suggestion to take calcium citrate tablets washed down with lemonade or limeade.  Three to four of the Citracal Plus Bone Density Builder tablets a day and two 8oz glasses of lemonade has worked for a number of us to lower the frequency and intensity of our cluster headaches. 

It's worth a try and it might just help you get a good night's sleep.

If you can get a bag of key limes and squeeze yourself a glass, that might work too.  Key limes are much higher in citric acid than lemons or regular limes...

Take care,

V/R, Batch

Cannabis has been shown to often worsen intensity of CH hits. I wouldn't go anywhere near it,

Psilocybin on the other hand has shut down entire cycles for some CH'ers. I don't suppose you're in the Virgin islands are you? I saw somewhere that there's a place called "Mambo's Hut" there where CH'ers go to get therapeutic mushrooms. I don't really know anything else about it than that hearsay though.

Stop gap measures:

If you have an air conditioner in your living space (or even better, in a car), one free and harmless thing you can try at onset of a hit is cranking the A/C really cold, putting your nose right up to the vent, and breathing the freezing air deeply until CH is aborted. Should be aborted within 10-15 min. if it's going to work. It works for some of us some of the time.

Others (including myself) have found that extremely vigorous sprint type exercise at the onset of a hit can abort it. Sometimes.

Maybe if you combined Batch's PH optimization and Giussepi's Red Bull suggestion with one of these approaches you could be aborting attacks as you await your next doc appointment.

Meanwhile I hope you're getting that welding O2, or at least ordering your supplies so you'll have a good regulator and mask on hand when you do get the O2.

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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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

If you get the night-time hits that interrupt your sleep, others here have used Melatonin at night to help sleep through. Not sure the dosage but if you search on it you'll probably find some threads.

Take care,

Christy

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

This is just so depressing...I'm really in a why me place right now...I keep on thinking what I've done to bring this on...I mean what do we all have in common...heavy drinking as teens?  overstressed?  just on god's wrong side??

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 Hello and Welcome!

Here are a few other suggestions:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.

I hope you find Pain Free times Soon!

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

MattyAA wrote on Aug 28^th, 2010 at 11:02pm:

Zee wrote on Aug 27th, 2010 at 8:47am: This is just so depressing...I'm really in a why me place right now...I keep on thinking what I've done to bring this on...I mean what do we all have in common...heavy drinking as teens?  overstressed?  just on god's wrong side?? 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 : /

I completely agree with Matty. It's so easy to fall into "why me?" but so counterproductive. The body will fail...sooner or later...and while all of us would much rather it be later, we do have this physical condition. Work up a good determination to battle and defeat the beast! It's a much better path than self deprecation. Blessings! lance