Hello,

I am new to the site after having found it quite recently and thought I would introduce myself and briefly tell my story...

I was finally diagnosed with CH after seeing a neurologist in April or so of last year. My doctor had told me initially that I was suffering with stress/tension headaches after I went to see her about three years ago and it took me a while to get a referral. Once I did the neurologist quite quickly identified that I was suffering with clusters.

I started searching recently because I have just started a new cycle (beginning of August) after being in sweet, sweet remission since the beginning of this year. Although I have enjoyed 13 PFDs in the cycle it is also the worst I have experienced with the beast rearing its painful head up to five times a day/night.

After reading some of the stories here it seems there are a lot of people who are having a far worse time than I, which, perversely, has made me pathetically grateful.

Thinking back I believe I have been having cycles for a lot longer than I thought, having put previous cycles down to toothache. Being terrified of the dentist I ignored these pains and tried to subdue them with alcohol - LOL - little knowing that this was almost certainly exacerbating the situation rather than helping it.

As far as treatments go I take pizotifen as a prophylactic and have been prescribed 50mg of Sumatriptan as an abortive, although I have found, oddly, that 200mg of ibuprofen also seems to work, despite reading that normal painkillers rarely, if ever, have an effect on CHs.

I don't know any other sufferers so it can feel a little isolating at times and I am trying educate my managers at work so thay have at least some understanding (can anyone really understand unless they have them?) of my condition. One of my managers suffers from migraine and has been very sympathetic and supportive but until recently the HR team at work has been less so.

Now I try to avoid alcohol during a cycle and also try to keep hydrated but this doesn't always happen.

It seems that a lot of the stories I have read on here are from the States but I am glad to know I am not alone.

Good to meet you all.

Eddie.

Welcome Eddie!

  lorac

Thanks, I think. It is nice to be here although, obviously, I would rather not be.

You will find a good support group at:

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]

Welcome aboard.  I wish you weren't here too! :D

You will find a lot of great info available here, and a lot of great support and friendship as well.

Look into O2.  See the yellow button to your left.  It made a great difference for me.

Jerry

Hello Eddie

Welcome! ;)