hello there people :) ive been meaning to sign up here for a long long time but now i finally got around to it

ive been afflicted with these cluster headaches for 7 years.  They started about a week after i turned 20 and they usually last about 2-3 months of the year between august and October roughly and im into my second week of their yearly visit right now (they started on my birthday this year which was nice of them ha ha ). my doctor is useless and he wont help me he insists they are migraines and i fear if i go back there and he tells me migraine again i will strangle him ha ha. its been 4 years since my last visit to the GP

i went to the walk in center at the hospital a few years ago after my most vicious attack (the most painful experience of my life and ive broken bones before and had many many injuries playing rugby so i have plenty to compare it to:) i would of been happy to die that night) and was told by the doc there they were migraines too and he gave me some really crappy pills they were about as useful as jelly tots and i felt like he just wanted me out of there it was late at night and i dont think he could be bothered with me :( so ive given up on the medical profession

my biggest problem right now is sleep i need to sleep but when i try to im up again in agony in less than 2 hours so im now spending my time in exhaustion and agony im averaging about 6 headaches a day lasting between 40 minutes and 2 hours atm  expecting it to get much worse as they usually do

does anyone have any tips on how i can get a decent nights sleep? also ive been reading about breathing medical oxygen at the onset of an attack and i really want to try this as ive had nothing to help me ever apart from a wall to smash my head against ha ha and i would definitely prefer this to medications if anybody knows where i can get some oxygen from in uk because im desperate now and dreading the coming weeks cos i know theyre gonna be unbearable

thanks in advance for any advice at all i will try anything right now

sorry for the long post  :P

Check to the left of the pg, where we live, and checkout UK people.

And then somewhere on here is doctors people liked (even tho the ones recommended here for me when I check them on the net had low rating as docs.)check your town or providence.

good luck

This can be a too complex disorder to play around with. Get a good doc--first...
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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]
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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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i would love to get a good doctor but i cant afford private health care and my local nhs trust is ranked among some of the lowest in the country

was talking to my sister and she said that our old GP has been struck off since i last visited him dunno what he did wrong but he was useless anyway  so im gonna make an appointment  tomorrow to see the new doc and print out that info for him/her in case its needed hopefully not though

thanks a lot  :) gonna try and get some sleep i hope i can get a good few hours at least before it wakes me up  :(

made an appointment gonna take the info with me its not until next week though which is really annoying....praying the new gp is half way competent  old gp was totally useless  

It doesn't give comfort to know that you are not alone in trying to find competent medical care but--
understand that we are a very small minority of the problems docs see; and their training in headache is so very limited that our problems in finding good care are not a surprise.

I don't have data on UK medical training but in the US it's meager re. headache. Still,


Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.

Bahra A, Goadsby PJ.

Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk

OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14763953 [PubMed]

hey bob i found this place called the city of london migraine clinic but they deal with all types of headaches including cluster headaches. i think i might be better off going here instead of my GP what do you think? looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Interesting looking but unknown here. But specialist care is the key to success!

Another group known to us for its excellent research:

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Don't know if they accept individuals as patients but worth exploring their web site to see.

Quote:

looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and this - copied from the OUCH(UK) website [quote]You can ask your GP to refer you to one of our hospitals for treatment Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment. [Source: UCL website]

For more advice ring the OUCH(UK) helpline - the number is below.

Hope this help.

Rod

Jelly tots, while possessing their own unique set of positive attributes, are no match for cluster headaches. ;)

well i decided to still see the new GP and take it from there  appointment is tomorrow morning you never know it cant hurt to give it a try i suppose. if it doesn't go well im gonna tell him/her im going to that clinic and to expect a letter from them or maybe even ask to be referred to that doc at ucl. my sister studies at  ucl and she can come with me for company at least, different building but should be near by :)

and jelly tots would have been a better prescription than what ive been given in the past at least they taste nice and have as much benefit to the pain than those worthless pills  :P

well my 12 oclock is due pretty soon so im gonna make sure ive got ice to chew  :(  have a good nite anyone reading this  :)

waste of time words cant express the incompetence of the doctor i just saw

refused to look at the information i gave him

pretended to know what cluster headaches were when he had no clue it was so obvious

didnt even ask symptoms that were with headache i had to force them on him and he wasnt at all interested

didnt even look at the record ive kept of time date and number of headaches

told me that ibuprofen was the normal prescription for CH (ive taken whole packets of these in 1 go before cos of these damn headaches before i figured out that they were not migraines they do not touch it)

refused to refer me to any where unless i did blood and urine tests first

told me GPs were not allowed to prescribe oxygen and i could only get oxygen therapy at the hospital

he was totally disinterested  

ive made an appointment at the head clinic which is not until september and im worried that he will refuse to fill their recommended prescription

Hi Gooner.

I'm in the UK and had pretty much the same response from local GP - gave me tablets which were as useful as a chocolate fireguard and refused oxygen and verapamil and told me to give up smoking.

I did get to see a neuro at the local hospital eventually - Mr. Fathers - who was excellent - I have a copy of the letter he wrote to my GP. He gave him a right verbal spanking.

Like others I have found success with Melatonin - 9mgs at night - little or no side effects and cheap  - but you will have to get them over the net as banned in EU - to do with lack of research in europe on long term use - although it is a natural substance.

You could also try Prof. Goadsby who - I thought  - was the leading UK expert - he is based at the institute of neurology in Queen Square. I know he has worked with Todd Rozen  - the leading light in the USA.

Whatever you do best of luck and please keep posting on your progress - Here's wishing you PF days.

hey Melvyn

could you recommend somewhere reliable i could buy some melatonin my sister had recommended this after some research also but couldnt find any at holland and barrett obviously now you say its banned that will be why.

went over 16 hours pain free yesterday and even though i spent the day waiting for one to kick in it was a much needed break and im sleeping a little better for the last couple of nights still desperate for a good nights sleep though. headaches have slightly decreased in frequency and  pain and i pray my cycle may be coming to an early end this year not getting my hopes up yet though  :)

Hi Gooner.

There are various brands and types - such as slow release. I use Biovea 3mg standard type. 180 x 3mg tabs cost £12.95 from their UK site. You can also buy it at the same price from the Agestop site.

best of luck and come back if you have any probs,


regards,

Melvyn

right gonna order some now.... thanks a lot  :)