Probably the first time i've felt so unlucky to join such an exclusive club, but here we are!
31 yr old male, fit and active....and these headaches started 2 weeks ago. I've tried to explain the pain to friends, but I don't think it's possible to convey just how excruciating these are, so it is quite comforting to know there are others out there going through this as well.

Confirmed diagnosis of the CH last week, and the VERY high steroid dose I was put on from my doctor does seem to have an effect - 85mg a day for the last 7 days, and on a reducing dose for the next 2 weeks when a neurological appointment is booked in.
If anyone else is about to embark on the steriod treatment, beware....your appetite will go through the roof!

My best wishes to all the people here - stay strong.

Regards,

Sam - from UK

Welcome Sam so sorry you had to find us but glad you did.

There is loads of info. here so read, read, read and ask all the questions you need to, if we can answer them we will, if not it's ask your Doc time.   ;)

Peace and PF wishes to you!

samson61 wrote on Jul 19^th, 2010 at 4:52am:

started 2 weeks ago. Confirmed diagnosis of the CH last week,

Highly fortunate being diagnosed a week from the first tee off.




Quote:

steroid ... the last 7 days, and on a reducing dose for the next 2 weeks when a neurological appointment is booked in.

Looks to be he has hopes this strong three week taper will suffice with no abortive or any preventive med started alongside.  Your next appointment will reveal this plan's outcome.  Steroids are used on a short-term basis, but have been known to stop an episode, if infrequently.  Luck may have it maybe for a first-time cycle.

Questions to ask sometimes at new doc encounters for this are what his planned next steps are should they be needed.  Good idea Ginger mentioned about reading up here in the meantime.


Welcome.    :)

At the same time you are on the Pred the doc should have started you on a longer acting preventive med.

Some quick learning is in order!
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You have an excellent support group:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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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 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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And the PDF file, below.....
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One of the most common issues with Cluster are the docs who lack training and experience in treating complex headache disorders. You have the absolute right, under your health care system, to get a referral to headache clinics--why your local support group is so important to your long term picture.

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What Bob said. Prednisone provides a 100% block for me against CH. But if I go on prednisone, then come off without any other prevent on board, the CH comes back 10 fold. It's like the pred was a dam that just let it store up until I went off it.

As Kevin mentioned, there is a small percentage of CH'ers for whom a short, high burst of pred will abort the entire cycle. here's hoping you're one of the lucky one! ;)

Welcome to the board, you have much reading to do as a well educated CH'er has a much better chance of having an effective treatment regimen established!

Joe

Guiseppi wrote on Jul 19^th, 2010 at 11:01am:

....if I go on prednisone, then come off without any other prevent on board, the CH comes back 10 fold. It's like the pred was a dam that just let it store up until I went off it. ...

Same here. So Samson61, this would be a very good time to do some contingency planning and put together a backup arsenal. The oxygen info link on the left of this page would be a very good place to start.

Hay Sam

welcome . Energy drinks , Red Bull ,Rockstar , Monster etc. can really help to reduce a ch hit or even stop one , glug one down at the first sign of a hit .

Imigran injectables work well for me as an abortive  but O2 is reckoned to be number one ( not tried it my self yet ,went out of cycle before I had a chance , but it's top of my list for the next one ) .

You are one of the lucky ones (don't mean having ch ) getting diagnosed so quickly , like me but it took so long to get a neuro appointment , like about 6 months including getting a cancellation with the NHS choose and book system and ending up in a M.E. clinic >:( , that I was out of cycle . Oh and the neuro I saw was no use at all , BOO.

any how  , hope all goes well for you .

God bless

Nigel