Good evening to all y'all clusterheads and may i begin by wishing you all a merry christmas.

I stumbled across your website a few days ago whilst googling CH and i must say it really is a wonderfully informative resource. Anyway, lets get down to business, the business of ridiculous pain, i'll splain where i'm at...

Around two years ago i started to get these headaches. They'd hit me most days (but not every day) very soon after i woke up in the morning and get very painful very quickly. I felt them only in my right eye and the right side of my head, they'd last circa forty minutes and go from intense pain to no pain in a matter of minutes. I tried paracetamol, but to no avail; i was forced to spend the duration of each headache writhing on my bed.

It took me maybe two weeks to visit a doctor. That seems very stupid now, but at the time i found it very difficult to describe what was happening to me, and given the way the pain vanished so suddenly and that for 90% of the day i was totally fine i had my own doubts that there was anything particularly wrong with me. So anyway the doc didn't know what was up, gave me some co-dydramol, and sent me on my way. As i'm sure you can imagine, the drugs did shag-all, but within one or two weeks the headaches had completely stopped bothering me and i soon forgot about it.

Since then, roughly two years passed, and i left home for university. About two and a half weeks ago, Tuesday the seventh to be precise, i was in a lecture when i started to get a pretty bothersome headache, so when the lecturer announced a 10 minute break i went and got some paracetamol. However it quickly became very apparent that my efforts were futile. The pain (right eye + right side of head) ramped up to unbearable and i was fidgeting like a junkie desperate for a hit. By the time i'd decided i needed to excuse myself i'd recognized my pain as exactly the same kind of pain i'd experienced two years earlier.

I headed for the on campus health centre in search of relief but since no doctor could see me for a few hours i left, knowing my pain would be gone by the time i got seen.

As i feared, the pain struck me again the following morning so that afternoon i saw the doc. No diagnosis, this time i got codeine for the pain. As i'm sure you can imagine, the drugs did shag-all.

Given that i was feeling pain in my eye, i decided to go to an opticians and buy an eye test, thinking that with his high powered devices, the optometrist might be able to see what was wrong. He told me i had a 'recurrent corneal erosion', (another interesting and difficult to treat disorder that presents with excruciating eye pain shortly after waking) and told me to buy some lubricating eye drops. As i'm sure you can imagine, the drugs did shag-all.

Over the next couple of weeks i experienced the headaches most mornings, sometimes i got them in the evenings too. I saw the doctor(s) four more times (during which time migraines and CH were mentioned) and was given some sumatriptan tablets to try. As i'm sure you can imagine, the drugs did shag all. I also got a referral to an ophthalmologist who on Tuesday declared my eyes to be in excellent condition - no RCE.

I took that information back to a doc on Wednesday who said that in that case we're most probably dealing with CH. He gave me sumatriptan nasal sprays and said when i got back to uni after christmas i was welcome to a referral to the nearest specialist migraine clinic to get me thoroughly examined and set up with an abort/preventative plan for the future.

So that's where we're at now really. I've been largely pain free since tuesday. I've fought off a few shadows with red bull - a clever little trick i discovered on this delightful board. This morning my head started bothering me - but i was in no mood for a chritmassy episode so i broke out the nasal spray which had me feeling fine within 15 minutes (nasty taste though). Unfortunately, when christmas dinner was over with we had tiramasu for dessert forgetting all about the marsala wine content which it seems triggered me because 30 minutes later my head was in more pain than it had been since monday evening. However i cracked out the nasal spray again and was sorted in about 10 minutes.

It's nice to have a good idea of what is actually doing this to me, even if it's something as shitty as CH. I guess a lot of you guys understand more than most the fear and frustration of experiencing such anomalous pain and having no clue as to what it is or how to really convey your experience to others.

At 21 it seems i'm relatively young to be enjoying CH so i'm looking forward to it messing me around with no particular rhyme or reason for the next few years. I'm concerned that there's plenty of room for it to get a lot worse - most of my hits have been fairly intolerable hour long affairs but last Thursday's hit was something else, 90 minutes of pathetic groaning, irregular breathing, clutching at my skull, eyes clamped shut, face screwed up, writhing furiously, most agonizing experience ever. This time round i've been treated to some public hits so i'm looking forward to more of those in the future too. It got me on a 3hr train journey last saturday which was a tremendously novel experience.

Anyway i'm definitely rambling now. I guess i'm still trying to get my head round this whole thing. CH is pretty epic. The point is, this seems like a great board and i'm delighted to have found it, it's taught me so much already. So hello to you all  :) it's shit to have to be here but it's nice to be here.

Welcome Tornage.....yes it certainly sounds like clusterheadaches.

I am sure that you have read on here about 02 and how that can knock one in 10 minutes in many.

It is the safest thing to take and works wonders. Make sure that the regulator goes up to at least 15lpm and use a non-rebreather mask.

You can keep a large tank at home and keep a small one at work or in the car.

Hate that you had to find us, but as you have already discovered, we possibly can help with our years of experience. My advise is to read, read, read. :)

Welcome to the board! Your nasal spray is a common abortive, effective for many. Read the oxygen info tab on the left. It's cheap, as fast or faster then the nasal spray, no side effects, been a miracle abortive for many on the board, but it must be used correctly or it's worthless.

Then you need to talk to the doc about the second prong, a good prevent. I use lithium, at 1200 mg a day it blocks 60-70% of my attacks. Verapamil is a common first line prevent.

Alcohol.....yeah......on cycle it's a VERY common trigger....avoid it like the plague! Go visit clusterbusters.com         alternative treatments outside of the main stream medicine that are putting out some pretty amazing success stories. Avoid the over the counter pain killers, do more harm then good and can cause rebounds and internal issues.

Glad you found us, keep on reading, an educated CH'er hurts a lot less! ;)

Joe

Hi tornege - welcome to the forums but sorry you had to come looking for us.

Although it sounds very much like you're having CHs, I'm not a medical doctor so you really need this to be confirmed by a neurologist who specializes in headaches as even most neurologists know little about CHs. You want to make sure it really is CHs and not something else so that you can get the effective treatment you need.

You need to arrange with your doctor a preventive that will stop most CHs before they start. Verapamil is very good for this but other things like lithium and topomax are used too.

Whilst the long term preventive kicks in, many use prednisione short term (say 2 weeks) to prevent CHs.

Oxygen is an amazingly effective way to abort CHs. Read up about it on the link on the left. With a 25lpm flow rate I'm averaging being pain free in 6 minutes with reduced pain earlier still.

Is your nasal sprey imitrex? Some people also use the injectable form for quick aborts, although it's expensive, but you can make it last longer using the tip on the left.

Having the run around between doctors, opticians and soemtimes dentists is quite common with some people being undiagnosed for years.

So keep reading, ask questions and get your diagnosis confirmed.

Two issues: we have a tentative Dx of Cluster--yet there are multiple other disorders which can appear to be Cluster. The caution: don't assume yet. Second, we don't know whether the doc you will be seeing knows anything about Cluster--a major issue for many folks who wander about trying to find the right doc.

So, while you are waiting for the appt, suggest you start educating yourself about CH so that you have some concepts/tools with which to discuss options when you have your appt.

See OUCH site, left, and it many internal links.

PDF file below.
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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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Your research librarian can help you locate other materials on the web, and elsewhere.

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A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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

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Welcome and a Belated Merry Christmas Tornege!

You have been given some great advice already I would only add that you make sure to follow up with the Headache specialist, make sure to ask about Oxygen as your abortive and to make a mental note of the following:

Here are a few over the counter helpers:

4-Way Nasal spray, Afrin nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

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

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) 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.

Thanks for the warm welcome and all the advice, and cheers for the link Bob, i enjoyed that. I suppose it's some consolation that CH is at least really quite interesting to read up on. As a tax dodging student i have free access to most academic journals so i'll certainly be looking to build myself a library.

In the two days since i posted i've taken a couple more hits. Yesterdays wasn't too bad and the nasal spray/red bull chased it off within 15 mins. Today was probably the most painful one i've had since the 18th but again the nasal spray/red bull really did a number on it - took 15 minutes again but the pain went from peak to nothing in about a minute. Felt like i was living in a stop motion world!

These past couple of days i've been getting up a couple of hours later than the previous two weeks or so. It's interesting to me that the time i wake up seems irrelevant, and that i will generally just get hit within ~1 hour of waking up.

Anyway i was down to just 2 sprays after today (and yes Mike i think they're imitrex, it says imigran on the box but that's just a poh-tay-toh/poh-tah-toh situation right?) so with it being a bank holiday i had to call an emergency line for some more. Doc on the phone said 'how many do you want' so i just said 10 would be fine and he was happy to sign off on that (this seemed like a lot to me so for those of you living in England, what is the most you can usually get on one script?) Had a hell of a time finding a pharmacy that had them. Finally managed to get 2 doses but going to have to wait a couple of days for the rest.

This has come at a pretty awkward time, i feel very frustrated that circumstances are preventing me from making diagnostic and treatment progress, so i'm looking forward to getting back to uni, seeing a specialist and exploring the logistics of O2. For now though the imigran is a god-send - the morning hits were really taking their toll on me and leaving me lethargic and fatigued for the rest of the day but the 15 minute hits i had yesterday and today did no lasting damage.

I've read plenty of posts suggesting diaries to be useful tools so i've written down everything i can remember about this cycle, and will be keeping more detailed notes from now on.

Given that it's only a tentative diagnosis and that the logistics would cause me a minor ballache, do you guys think it would be worth badgering a doctor to try me on a prevent? I'm thinking i won't bother since the aborts are working well for me, and i'm three weeks in already so (if my research is correct) anything other than prednisone wouldn't really kick in til week 5. But you guys really seem to know your onions so your opinion carries a lot of weight with me.

I fear i'm rambling once again, so i'll shut up soon, but i've obviously noticed a lot of pain comparisons around the board and in the literature and realised i can offer a fairly interesting perspective on this. I was circumcised under local anaesthetic, which as i'm sure you can imagine requires several injections with a rather large needle directly into the, ahem, penis. Unpleasant as that was, it was a walk in the park compared to the headaches!

Hey, yes imigran is the same as imitrex.  I believe that imigran is typically the one found in the UK and imitrex is America etc.  Although no-one here is a doctor I'll certainly share my experiences with you.

I saw a GP who suggested it would could be Cluster Headache (After the optician, dentist and God knows what else...) he gave me pizotifen which you probably haven't heard of.  Basically it's an migraine preventative that's not really used nowadays for CH because, frankly, it sucks.  Your doctor however may want to put you onto this as it has less side-effects/danger than some of the other treatments.

The other options are verapamil (my drug of choice-I'm out of 'season' but expect to re-enter soonish) Lithium and Progesterone.

From what I gather from your original post you seem to get them for 'only' about four weeks.  This means it's relatively unlikely you'd get Lithium.  From my understanding that's more commonly used for Chronics or long term episodic.  Progesterone is a steroid which you can take for a (six week?) taper.  Apparently -I've never been on it- it's very effective however doctors don't want you to stay on it for over six weeks because it's not really ideal for your body.  If your cycle is four weeks you might just get the taper each year.

However, I had to have an ECG before they'd put me onto verapamil in case I had a heart defect or something which they thought verapamil would make worse or something of that nature.  It went through fine but my GP would do nothing for codeine and pizotifen before my Neurologist signed off on verapamil.

P.S. Oxygen is Godly.  I'm aged 17 and last year I had a tank or two in my school.  I sprinted down the corridor to get on it ASAP.   ;D

Great post Tom, thanks for chiming in from the "other" side of our pond! ;)

Lithium used to be considered useful only for the chronics. As an episodic, I can assure you it works well for many of us too! Verapamil is still the more popular first try prevent, with a great track record of success.

Circumcision with a local anesthetic......ummm...OUCH! :o

Joe

Tortured  Tom wrote on Dec 28^th, 2010 at 5:04am:

Progesterone is a steroid which you can take for a (six week?) taper.  Apparently -I've never been on it- it's very effective however doctors don't want you to stay on it for over six weeks because it's not really ideal for your body.  If your cycle is four weeks you might just get the taper each year.

Just to clarify, Tom, I assume that you mean prednisone, and not progesterone. 

I've never heard of progesterone being used to treat CH--although that doesn't mean much.   ;)

Best wishes,

George 

And yes...consider a prevent despite the fact that abortives are working for you. It's better to kick the beast as far down the road as you can, and then use aborts when it slinks back into the circle. And do try to not become discouraged if it takes awhile for a prevent to work, or even to find the right prevent. Many of us have tried scores of drugs until we found the "right one." Best of luck. lance