Hello, first in my life I can change experience about the “beast” with somebody else,
I’m the new one on this CH message board, but the old Cluster Headache sufferer.
As far as I know I’m the first or second here from Slovenia (part of ex Yugoslavia).
Male, 48 years, married, 2 daughters 18/21, construction engineer, reside now alone,
smoke 20-30 cigarettes/day, drink 3-4 coffees/day, moderate drinking beer/wine
(my hobbies: indoor basketball and soccer, skiing, sailing, vintage HI-FI collecting).

My troubles starts at about 20-s+ with periodic single painful headache around eye.
Because of unusual type of pain I visit the lead neurologist of that time in Slovenia.
He said that I have completely to change my life ..., otherwise nothing will help me ...,
existent drugs have too much serious side effects and are very short time affected ...
I really don’t remember, if he said cluster, Bing-Horton or something else headache.

Then headaches indicated like a single attack without of any rule or cause until
in 1997, when after stress and depressed period I started with Prosac therapy and
simultaneously also with two week period of very regular cluster headache attacks,
that means with known headache around eye came between afternoon napping and
with unbearable killing headache at night, when “beast” waked me up at 01.00-02.00.
From that time CH cycles were regular with intervals 12-24 months lasted 2-8 weeks,
in winter, spring, summer, autumn, most left sided, a possible cause some kind of diet.

My personal doctor and neurologist could not real diagnose my troubles through years
(toothache or earache, head punch, migraine, stress, with different treatments and drugs),
until I founded answer with help of different questionnaires on internet few years ago.
My personal doctor agreed about the diagnosis and directed me to neurologist again,
who after my description of headache said to the present colleague (specialization study):
“He truly has a cluster headache!” (like I am a  strange spaceman from another galaxy).

He couldn’t give any advice to me, because they have only one or two patient per year
and prescribed huge dose of corticosteroid Medrol to treatment the cluster headache.
According to my opinion, that attacks will stop soon (when attacks leaves night into day),
I didn’t use the drugs because of the side effects and waited the “beast” leaving alone.
It happened in week and since that time I visited no one except acupuncturist (didn’t work).

Now I’m in the third week of CH cycle “beast” attacks with following characteristics:
- 1. attack from 21.00 to 22.00 h (or by napping) middle or strong intensity (8,9) 15-30 min
- 2. attack from 24.00 to 01.00 h strong or super intensity (9,10) 30-60 min (wake me up)
- 3. to 4. to 5. attack different before 07.00 h same characteristics (7,8,9) like 1. or 2. attack
Last month I’m on Prozac therapy again (every second day), what in some cases could
probably stop the cluster headache (both, Prozac and CH, have influence on serotonin).
I don’t drink alcohol in any form for a month, which was major trigger during CH past cycles.

I think I’m an atheist, but during the actual CH attack I call Him for help to send “beast” away,
I beg Him for mercy and also thank to Him always, when the CH pain suddenly pass off.
Every single attack, when it last, is valid for all attacks in past and future – is not measurable.
I can’t handle with the “beast”, but for sure it will come about one hour later when I sleep down.
During last three weeks I sleep in sitting position with light for two to four hours in average.
I stopped with Prozac therapy few days ago and I hope, it was the trigger for this cycle of CH.

I have discovered in years of cluster headache survey, that only inhalation of hot coffee is
some kind of help, when “beast” turn up and sometimes, but rarely, it turn the “beast” away.
The pain is not describable - hot boring behind in eye and tearing of meat, skin, bones on
face, top of head, neck, set of teeth, chin, shade, dependent of phase during a CH attack
(others, I’m talking about, don’t understand, I mean don’t believe, what I’m going through).
Single triggers were sleeping (every night), alcohol, air conditioning, some kind of food ...

Conclusion is, that real “beast” comes at night and throw you up with no mercy and full of pain.
I don’t know, what the “beast” is, but for sure it is something totally strange, evil and unusual.
I’m really not glad, other persons have to fight with the same kind of “beast” like I have to,
but I’m happy to find somebody else to talk about it and to understand me, what’s going on.
It’s enough for the first time, I wish all days and all nights without any “beast” to all of you.

I'm glad that you found us. Your problem of not having doctors with much experience is what I'm going to respond to in this message. My intention is to give you medical information which I suggest you print and give to your doctors. (Many of us have had to educate our doctors so that they could treat us effectively.) I can only hope that they will be willing to accept this material.
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This book (first one) is written by one of the best headache doctors in the U.S. and is for doctors.

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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This article is from a medical journal. It will be a good introduction for you (as well as for the doctor) to cluster headache. You may need to find someone who can help you understand it--because of the complex language--but it is good. In any case, give a copy to the doctors. (Web link to the complete article on the 2nd line.)
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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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Here are two lists of current medical treatments for Cluster.

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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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)
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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:
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(Thanks to "cluster" for link.)
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This web site is operated by one of the better headache doctors in the U.S. The whole site is filled with good information. It wil just take you some practice to learn how to access it. But also print out the free manual which is mentioned.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)
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Finally, I won't give you any sources now but keep in mind that there are some excellent medical resources in Italy. Some excellent research in headache is being done there and so I would expect you could find good treatment, if that becomes necessary.
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Hope you will feel free to ask us questions and give us reports on your progress.

Welcome aboard Crni.  I'm glad you found us, and I hope we can give you some help.  I know that just being able to correspond with another who understands makes a big difference.  It did for me!

Bob gave you some excellent advice and information.  I hope you are able to use it effectively with your Dr.

I would suggest also that you look at the "oxygen info" button in yellow on the left and take it with you to the Dr.  Oxygen has been a lifesaver for many of us.

Hope the cycle ends soon for you.

Jerry

Thanks to all for advices

For two days, I have only day attacks in afternoon and evening with following characteristics:
1-2 long-term variable attacks, 17.00-22.00 h, low/middle intensity (5,6,7,8), 60-180 min
and some shadows came during this two nights - life is still not beautiful, but is acceptable.
As said, I stopped with Prozac therapy a week ago. I think, it was the trigger for CH cycle.
I also drunk a couple of beers yesterday to initiate daily CH attack / reduce night CH attacks.
For now, it worked, but I will not experiment with alcohol because of previous experiences.
CH cycle probably isn’t stopped (could grow up in few days), but I hope, climax is pasted.
Did somebody have experiences with antidepressants effect to CH cycle trigger / treatment?
(Prozac, in some cases, probably stopped CH - Prozac and CH affect to serotonin regulation).

Thanks a lot in advance

Zoran

Prozac, and all the drugs in that class, are not regarded as an effective med for Cluster. Suggest you use those meds which are widely used & accepted for CH and try others only if the standard meds don't help you.

It will take you some time to read/understand the material I suggested. At that point, you will be in a better position to make decisions about changing meds.