Hello, I've been recently diagnosed with Cluster headaches but have been suffering them on and off from about ... November? I remember sitting in my Special Topics lab pressing the heel of my hand into my right eye socket as I thought it was a pressure related pain. I honestly thought it was an eye problem, I even taped a pad of cotton wool over my right eye to 'give it a rest' and used my left eye (hurray self-diagnosis!). Luckily I did this at home! My left eye can't see anything in detail that's further than half a metre away and needed the exercise but still, good thing my room was small and nothing was more than a metre away. Since my right eye is the strongest and apparently does all the work according to my optician, I simply thought it had had enough and was causing me grief for having to do all distance focusing (I'm short sighted and wear glasses only for distance sight and only for about a year now)

One trip to the doctor, describing my symptoms, and apparently it's cluster headaches! I've heard some horror stories about other peoples symptoms of the 'suicide headache', but comparatively mine are mild. I get the stabbing pain, the feeling of pressure behind the eye in question. I'm mostly unilateral with the attacks being in the right side of the brain with the left side only affected rarely (maybe twice or thrice) and never bilateral.

I've had a migraine once before this, way back in secondary school when sitting in the library with class I noticed that I couldn't focus on the photocopied page in front of me, literally. The text was swimming, like a pixelated 'snow-screen' effect. Later that day I got the pain and was pretty much grounded. But since then it's just been the occasional headache and maybe a really bad one once or twice but no migraine.

Then came these little stabby demon attacks last year >_O I've been given painkillers for them but I have a stupidly fast metabolism rate for painkillers (twenty minutes after I take them, they kick in. Effect lasts twenty minutes. Then it goes away and I can't have any more for another three hours >_o) so I'm just glad I'm on a clear period for them. I don't know the triggers yet but luckily I've not had an attack during an exam as far as I know/remember!

I hope that you have located a doc with special skills/experience in headache. We have had too much experience with m.d.s who don't have what it takes to treat cluster. (Get back if you want assistance in finding someone.)

Suggest you start by doing some basic learning about your new  'companion'. After reading this article, explore buttons to the left, starting with OUCH and the internal links there.

Questions will flow for you and being specific in your needs will help us to give on target responses.
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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--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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These are the types of meds which a good doc will be offering you. If you don't hear/see these names, be cautious.

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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Hi KaKata,

Welcome to the board. First of all it's bad news...! salt and vinegar crisps are a huge trigger for many UK sufferers on this site. . I'm partial to the odd pack or two myself.

I know it's a horrible infliction to be diagnosed with but you are very fortunate to have a doctor who has recognised the symptoms and hopefully will work with you on the proper treatments. You also have a very important role to play in gathering as much information as possible and taking this to your doctor and begin working as a team.

Hey the good news is oxygen is readily available on the NHS.Please read the oxygen info to your left and print it out and take it to your doctor. It is important that you have a non re breather mask and a flow rate of at least 15lpm.

One last helpful tip is to secure a 4 month prescription sheet as this will cost you £9 instead of £3 for every visit you make to the chemists. I live in N.I. and i think we have pretty much the same prescription charges.

Take care and let us know how you are getting on...


Lefty...!

You have an excellent support organization which can help you deal with the NHS.

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Heya, welcome!
I'm a student too and make sure you let your tutors *and* disability support know.  I've been told that if I'm having CH around an exam I shouldn't take it and should resist next exam season, cross fingers it won't happen as then I won't graduate :s.  You'll need all the documents in place just in case because if they're not there, they aren't always very sympathetic.  It's for essays as well, as you might have a bad period before ones due in - if they're aware, you can get mitigating circumstances due to, you know, no sleep and death headaches.

Good luck!  Hope all your medication works ever so well!

Emily