Hello, just thought I'd introduce myself to the people that share the pain of carrying this agony throughout their lives.

My name is Kuni, I'm 21, I live in Liverpool and I suffer from cluster headaches. I've only had it for around 2 weeks, after my first week of this pain I went to the local GP to get it checked out. Coincidentally the doctor who checked me up also suffers from cluster headaches, so he understood perfectly the pain I was enduring. The past 2 weeks have not been great because of the headache, so I cannot even comprehend how some people here, who've had it for years, get on with their lives.

The doctor prescribed me some tablets that dissolve on your tongue, they're called Zolmitriptan orodisp tablets, 2.5mg. They dont seem to have any significant effect as of yet, though the pain in my second week has not been as awful as the first week, I think. The doctor himself takes injections to stop the pain, he says it works well because it goes straight into the blood stream, but recommended me to start on the tablets first, which I agreed to. I may be forced to try the injections if this carrys on, though.

I've skimmed through few posts here and it seems like a lot of people here genuinely care for others as they understand what each of us endure, and I believe I can take comfort in this simple acknowledgement. I'm also sure the advices I can take on from here will be valuable too. I didnt know anything about the oxygen mask thing so I'll be looking further into that.

I hope entering this community will help me, not directly to ease the headache, but to assure me psychologically that I am not alone, and I hope I can make others feel this way too.

So thank you, and hello.

Hi Kuni,
     Ditto what Bill said.  Read up on oxygen in the medications section.

Hope you and your doc get some relief

                                   Welcome
                                       JPC

Welcome Kuni!

I'm sorry that you suffer and have to be here.  This board is not only full of Clusterheads, but their supporters as well (like me - I support my DH who has had CH for 17+ years).

We'll  help you as much as we can, and yes, you are no longer alone!!

Be sure to check out OUCH-UK for resources closer to your home.  We do have a lot of Brits here, as well!

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
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.)

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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 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]

Thanks all, and thank you Bob for those links, I've just read them and I'll be taking them to the doctor next time I see him. And yeah Richard I'll ask for the HOOF form as well.

Just realised as well that some people here called me Kuni in their posts and I find that funny because thats actually my name instead of Kuno, weird!

Thanks again, you're all very warm people.

Its ok I dont mind making a fool out of myself!

Good advice above!

Get your GP sorted out i.e. educated with help from the Helpline and if you have problems, I seem to remember one of the best UK CH specialists is in Liverpool??? Dr Silver/Silva if memory serves me right?

Someone will correct me if I have his name wrong.

What Dyno is referring to also is that our Helpline manager is a fellow CH sufferer AND Liverpudlian, but we don't hold it against him.... much

Wendy