We have a couple of members from Germany who, I hope, will make themselves available to you to help with the German health system.

Now, you begin to learn! Explore the buttons on the left, starting with the OUCH site (and the multiple internal links).

Suggest you print the entire article for some basic learning (link 2nd line):

 
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]
=========================

Print both of the articles. You  can use them as tools to discuss treatment options with your doctor. (Very important that you find a doc with training/experience with complex headache disorders. Too many docs have little to offer in this area.)

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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. Rozen)
================
Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
(Thanks to "cluster" for link.)

Hi Mark,

where in Germany do you live?

You can find a list of knowledgable docs in Germany here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

After you have been officially diagnosed it is easy to get the oxygen (and other meds) prescribed.

Oliver

I live in a small village, deep in the forests of the Westerwald.

Since you don't have O2 or other meds yet: try to chug down an energy drink (for example Red Bull) at the first signs of a hit.

If you have trouble with the docs or the insurance send me a PM.
If you have a diagnose and O2 delivery is delayed send me a PM as well - there's an O2 system available from the Cluster Group in Cologne.

If you have questions, want to talk, ... feel free to PM, Skype, ICQ, MSN, ... me.

Also check the ck-wissen.de wiki and forum.

Oliver

thanks Gizmo, My first trip is back to my Dr so i can stick my size nine right up her xxxx. then into work to do the same to every one who made comments about migraine, and finally im goint to give the letter from OUCH to all my friends and familly wich explains everything better than i ever could. Then im going to wait untill my cycle is finished get a large rum and coke and celebrate. a hangover cant be anyworse LMAO.

mark

i think im about to around the bend,
whent to the Dr last monday sat down and started to discuss the possability of CH she started asking all the usual questions and said it could be but she thinks it might be a problem when i sleep that i snore and dont get enough oxygen wich has now left me confused as ive had attacks when ive been out and drank a beer or 2 and i wasnt sleeping then. after about 15 minutes she gave me an EEG and 2 migraine tabletts (sumatriptan beta 50mg) and told me to take one when i have an attack if it works its not CH and if not then it is. ive got an appointment in june for another scan started keeping a diary but its difficult to find a pattern as i work shift work.
my symptoms are so:-
wake up 1-3 times with intense headache 4-8 on kip scale, last around 15-40 minutes. i go through around 3 days of waking up with it but had only one day of 3 attacks since last wednesday. watery eye yesterday and since last attack lots of small twinges in the area like small spikes, nose blocked. one sided around my right eye, tempel area down to my jaw and teeth at its high point. blocked nose on the same side, tears during an attack and a redness of the eye.
im starting to crack up. i whent through this at the start and was diagnosed with MS then to be told its not. i dont really care any more what is causing this pain i just wish i knew what it was.Brain tumour, cancer, multiple schlerosis, migraine, tension have all been ruled out   im pretty sure my Dr gave me a migraine tablett 2 years ago and told me to see if it worked, waited 2-3 days had an attack, took tablett didnt work whent back to bed 2 hours later and then had another attack.
is there a test of any kind that can diagnose CH because im running out of options and deseases. the last step is the mad house as im obviously making this all up in my mind.

mark 

Hi Mark,

You certainly are not nuts.  Everything you've described is consistent with CH.

Unfortunately is seems your Dr is not familiar with CH.  If she was then she would know that triptans are effective against CH attacks.  However the're only effective when given by injection.  The pills just take too long to get into your system.

The reason you had a reattack after two hours is Sumatriptan only lasts that long.

I'd go back to this Dr and, using the list Gizmo gave you, get a referral to a Neurologist that does know something about CH and how to treat it.

When you do get to someone that can help, make sure you push for Oxygen.  It works for me as fast as Imitrex/Imigran injections without all the side effects.

The best way to prepare for that visit is to read through all the info Bob Johnson gave you.  It's a goldmine.  You are your own best advocate and knowledge will lead you to relief.

Good luck...

-Dennis-

first of all thanks to every one apart from my wife and your good selves i think id be in the looney bin by now. I was just letting of steam this morning had a pretty crap last 2 days, been getting a light burning in my eye gets a bit watery and little stabbing pains wich last about 5 to 10 seconds goes numb and feels like something is hanging off my eye lids.
My sister was full of advice when i talked to her yesterday like giving up coffee, aroma therapy and accupuncture shell probably sugest yoga next. im sending her this web address so she can get on the same page as everyone else. at the moment shes not even reading the same book lmao
give up alchohol, i dont really drink that much but give up all together ill have to think about that. hmmmmmmmmm no thought about it and
decided that i would still have the odd pint or 2
thanks again to everyone you have lifted my spirits,
Mark McGee   

Hi Mark,

Sorry you had to find us but glad you did. You're in good company with a lot of good advise.

I would caution you on having the odd pint, to many of us, myself included, alcohol is a trigger. I am in my longest cycle to date and would love a beer.  I've been fighting these damn things on and off for 15 years and the only thing that's always remained constant is alcohol turning the headaches on full bore.

I do look forward to going out of cycle and trying the beer test, many of us test to see if it's really ended this way.

Good luck, read and find comfort in the fact you are surrounded by many sufferers and suppoters with a great deal of experience. I've learned a great deal from these folks.

Baer