Hi,
Apparently I started an account 3 years ago, then forgot about it. I remembered the board though, so when the smelly stuff hit the fan this time around, I figured I'd register and got a surprise. Tried to find some old posts from me, but apparently I just lurked about as usual.

I'm 35 years, got diagnosed as 16(?) year old - back then it did not seem to exist any treatments at all. They tried some betablockers that didnt help. I got frustrated with the doctor and stopped having any contact with them at all.  

Somewhere in the span 20-23? The headaches started abating, getting more and more infrequent. And finally they stopped altogether, it took a long time before I trusted them to be gone, but finally I did.

Then they popped up for a month or so at 26. When they came back I thought I would cry. Maybe I did, I don't remember. I never considered going to the doctor, because I already new they could do nothing.

I realised vigorous excercise helped during some onsets, but only in the start of the cycle. Later on it did not matter. I realised that dunking my head in extremely cold water and keeping it there helped a bit, but only in the start of the cycle. The same with cold showers. Anything that chilled the body seemed to help somewhat.

That episode only lasted for a month, so I quickly forgot about it. Then it came back at 29, 32 and now 35. All episodes up until the current has been 3-4 weeks discounting ramp-up and stray headaches after.

Now I have children and need to work for a living and the current episode terrifies the living daylights out of me. I mean, it was one thing when it was only me. I could be on the street - with the headaches I could have cared less - but now I have a whole family depending on me and that really adds a dimension of scariness.

So this time I actually did some research, I have contacted a specialist and have a scheduled appointment. I also found that there has been some progress in ways of treatment. They sell these Zolmitriptan-based meds over-the-counter and I bought one to try and it actually worked as long as I take it early enough. They are insanely expensive, but they did work for me. I mean...work and work... I still feel really bad and it hurts, but it takes the edge of it, which means I recouperate faster afterwards. So I can work and so on. Still I am not happy with the treatment it is too weak and much to focused on managing the attacks instead of solving the underlying problem.

So that's my story if anybody actually had the stamina to read the whole boring rambling. Let's see if I am a permanent resident this time.

Good article to get back up to speed.

 
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]

I'm sorry for some of the message getting lost in translation.

In-patient meant hospitalized.

"On a tear" means doing wonderfully, not letting anything stand in my way.

We have bretheren in Sweden.

Make mention of that in a seperate post maybe in the Gatherings section.

I'm pretty sure that Svenn is from Sweden and how nice it would be for you to have a local or relatively local "brother" who knows exactly what you go through.

Best of luck

Welcome.

           My name is Bill and i get the clusters too. Sorry to hear you got these god awful headaches too.. But on the other hand im glad you found us. I use 02 as well, and can bust a cluster in about 5 minutes. Give it a try.

                                 Coach Bill

Go ahead and do the paperwork to get 02 so you'll have it the next time the beast shows up.  Most here who use triptan injectables (Imitrex in U.S., Imagran in UK) use 02 to abort most of their attacks and save the triptans for the attacks the 02 doesn't reach . . . and it's CHEAP, easy, and no side effects.  I can abort a hit in minutes with 02 if used early-on in the attack.

Re the safety issue.  Do you drive? Pump your own gas? You don't smoke when doing same, do you.  When you use 02 at the high flow-rates we do 12-15-25 lpm, you can saturate your clothes with oxygen . . .SO . . . you don't smoke while you're using it, and wait a few minutes after you've aborted the attack before you light up (if you smoke at all), to allow the 02 in your clothing to dissipate.

Keep reading . . . keep asking.

   Be Safe,

     PFDANs


      Richard