Hi all, my name is chris and i am from kent uk. I am still unsure if what i have is ch but maybe with your help il know if its what i have. My headaches started about 7 years ago after i had,had an operation i was on lots of pain killers and after about 6 weeks of taking them i suddenly started getting terrible pain in the back of my eye and temple they would last around 45-60 mins and would wake me up, i wnet to the doctors who told me i had migrains he gave me more tablets but no relief,they told me to take sudofed still no relief then the dentist,lots of unneccesary work later and still there. So i decided to stop taking all the meds and finally after around 8 weeks they stopped.But returned 1 year later almost too the week,again they happened every other night for around 45-60 mins  same side off head same pain like someone is pulling the back of my eye and dragging it out of my temple finished off in morning and the rest of that day feeling like i had been in a fight,Lucky this time they lasted only around 5 weeks.Then they were gone for 2 years then came back same time of year same thing all over again they and another 2 years same again.
  So now they have started again i i think its time i knew what they were. I have looked at other posts and i think my case sound similar but i got to say compared to some people i am not feeling quite so sorry for myself anymore.
  Anyway sorry to ramble on,but i would much appreciate  anyones thoughts on my case. Thanks chris   P.s sorry about my spelling

Welcome Home Chris!!  So sorry you had the need to find us but you have arrived at the right place!!  You now have years and years of clusterhead experience at your disposal.

First off, have you been diagnosed by a doctor with CH?  If not, get a referral to a neurologist for an MRI to rule out other more sinister problems.

Check out the O2 information on the left side of the page, print it out and take it to your doc if you're not already using O2 to abort your hits.  It is a fantastic abortive measure that works wonders for a large majority of us.

Since you are in the UK I imagine LeLimey ( Helen ) will be along directly to point you in the right direction as she is in England as well and extremely knowlegeable on what to do to get things done in ya'lls medical system.

No need to apologize for ramblin here my friend!  The more you tell us about your "beast", doctors diag, and treatments you have tried in the past the better we will be in putting our collective wits together to share our experience, strength and hope with you!

Wishing for some PFDAN's for you soon.

Dallas Denny

Hello Chris from another newbie
I'm afraid that I have less experiance with the beast than you do having only suferd for six months with CH but I just wanted to say hi sorry you'v had to but glad you have found us.

These people here have the best knowledge and experience that you can find , whether your asking questions or just having a rant some one will always have an answer, a useful experience or just the right kind word to help you out

these guys are fab!

Good luck and God's peace with you

Nigel

Welcome Chris...and you too NIgel

Read all you can here, and get that O2

You have a fine support group at: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

As welcome as you are here, make contact with folks who have experience dealing with your health care system.

Learning aout your situation is esential. Start with this good overview:

 
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]

Thankyou for your support, Its nice to at last here from people who also know how painful these are. It sounds harsh but sometimes i would like a few people around me to experience just once a few seconds of what it feels like as i am sure that after just a few seconds there views and opinions would be forever changed. As for now i have comfort of knowing that they wont last for much longer,although im sure as with most when im in a cycle the fear is that they wont stop.
   My thoughts are with everyone suffering and especially for those who are chronic sufferers. Thanks again for your kind words.