1: Welcome home!

2: Dump that doctor!

If you are in fact suffering from CH, you have found the most comprehensive collection of information on CH, anywhere! And we need to get you to a doc who knows CH and its treatments. Sitting in bed waiting to get hit, then tying to ride it out with OTC meds is unacceptable. The danged things hurt way too much. Read the oxygen info link on the left, it should be your first line abortive, proving almost miraculous for many on the board.

Really glad you found us. Now we just need to get you to a qualified neuro to confirm your diagnosis, and get you on a decent treatment plan.

Joe

Make contact:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Start learning about the business:

 
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]
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The GB OUCH group can help you find a good doc--absolute essential first step!

Then print these lists of the most common treatments. They will give you a good idea of whether your doc is using current thinking in his treatment of you and they are a tool to guide a discussion about treatments.

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

Many thanks for your replies, I have not been officially diagnosed as a "clusterhead", but having read lots of info on the internet I'm certain that I suffer from CH's at approx 2 year intervals. I was indeed correct last night, I did not have what I have seen described as "The Shadows" (a warning that an attack will occur), and I'm happy to say that I do not have The Shadows tonight either, so I'm not expecting to be woken up with severe pain tonight either, but I do know the demon has returned and I expect several CH's over the next couple of weeks before it disappears again for another 2 years or so!

Having read some posts on this site and elsewhere on the internet I actually consider myself very fortunate, I only suffer for about 2 weeks every 2 years, and not every night. I really feel very sorry for those that suffer from acute CH's.

I am interested to see that alcohol is a trigger for CH's, I'm sure that any medical professionals reading this will have kittens but I have found that when I get "the shadows" I drink plenty of alcohol and take 2 nurofen plus tablets and 2 paramol tablets before going to sleep, although I am still awakened by the severe pain, the alcohol and the tablets numb the pain and it is easier to cope with.

I have also found the morning after having a CH, I can feel that area inside my head feels "sore", I am aware that I had a headache in that part of my head, do other sufferers feel the same way?

hi and welcome, im fairly new to this myself and still learning
as to alcohol i had a few beers at the start of my cycle as the weather was nice and the beer gardens where open. the 2nd beer hit me and i took a 4-5 hit for about 40 mins middle in the beer garden after it had gone i looked up to see tears in my wifes eyes  that alone keeps me away from beer during my cycle however im just coming out of cycle (i hope) and the weather is getting better allso i have the whole of june of work so guess where im off to lol.
i hope you come out of your cycle soon and wish you lots of pain free days lots too read here and a bunch of great people (information is power)

mark (a brit in germany)

Yep, I get that sore feeling afterwards too. Like Joe posted, I think of it as a hang-over.

Lottie

don't be complacent with your doc. Get a new one who will help make your life more manageable.  -