Hi all

I have been told that I am suffering from CH by my GP, but have not had a referral to a neurologist.

January last year I experienced the worst pain I have ever felt in my life, I went to my GP who mentioned cluster headache and first prescribed me with Codene, this had zero effect so I returned to him a few days later and was prescribed 50mg Indometacin 3xday, this sort of helped, when I run out of tablets I didn't go back to the GP and suffered with it, the  pain stopped about 2 month later.

Last week the pain has returned, and is incredibly intense, I went to my GP and was again prescribed Indometacin, that was Thursday last week, I don't feel that they have had any effect at all.

It starts with my getting extremely hot my face goes lobster red (not something I have had before) within 10 minutes agonising pain comes always in my left temple area and is a stabbing pain, nothing like a regular headache I have experienced in the past which always tend to be dull throbbing pain, this usually lasts a couple of hours, it usually starts around 10am I then get an episode in the afternoon and another early evening, the afternoon one seems to be the most intense. In the afternoon I have to go lay in bed with eye mask on and ear plugs in, not so sure this helps o not, but if I fall asleep usually its gone or subdued a lot by the time i wake.

This pain is driving me crazy, I cant take it any more, I am taking the endometicin 3x day along with 30mg Codene and have been since Thursday, I know that's on 5 days, maybe I haven't given the tablets chance to work properly.

My mother in law is good friends with a neuro consutant, she said she is going to ask her what she thinks, people understand the term migraine and have sympathy for sufferers, but when saying cluster headaches people just think its a regular headache, even my worst ever hangover doesn't come close to this.

Sorry the the long winded post, but I do feel better now I am able to share this with people who actually understand.

edit I forgot to say whenever I get these headaches my left eye also starts weeping for some reason, my left eye also gets very red.
After these attacks my neck usually aches.

You have a first-rate support group to help you work thru the health care system--

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Start to educate yourself so that you can work with the docs who don't know!

Explore the butttons, left, starting with the OUCH group and the many internal links.

Print the full article:




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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Print the PDF file, below, and use it to discuss treatment options with the doc.
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Explore this site:


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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

Thank you for your very informative replys, that helps a lot I am so glad to know I not alone in this.

Should also mention that I am also taking Simvastatin 20mg daily for high cholesterol, Lisinopril 20mg and Lercanidipine 10mg daily for hypertension, not sure if it will have any relevance at all to how I will be treated.

I have made an appointment for tomorrow with my GP, need to tell him that the Indometacin has been no help whatsoever, and see where we go from there, I will update when I get back from the Docs tomorrow.

Thanks guys, I am so glad I have found this message board

One small point I noted after looking at OUCH it states that sufferers are not able to lie down, i find no problem laying on a bed I dont think it physically improves the symptoms or not, but I lay on the bed with earplugs in and eyemask to completely shut out all external stimulie, it doesnt make the pain go away as such but I think it may improve it a tiny bit, GP also told me to lay down if having an episode.

Quick update

Been to docs today and he has said he wants me to try something else

He has given me Migard also called Frovatripan 2.5mg

Maximum of 5mg per day, the strange thing is he has only given me 6 tabets, thats not going to go far, I took 1 about 3 hours ago, I still have a headache although it isnt as severe as usual although I do have days where it isnt as bad so could just be that, time will tell....

Well I think things may have just turned a corner, took A FROVATRIPTAN earlier this evening when I felt the start, and its seems to have dispersed I do have  a slight headache feeling but not full blown as it has been up until today.

Thing is he has only given me 6 and whilst yes it helped this time I cant keep going back for another prescription every 3 days, especially at £7.35 per time and looking at the info they come in boxes of 6 tablets, thats gonna get very very expensive and irritating having to keep going to the docs and chemists (had to tour 4 chemists before finding one that had this in stock)

Well finally got a referral to Salford Royal Neurology clinic, problem is the soonest appointment isnt until 7th April, by which time the headaches are likely to have stopped going by last years headaches.

Asked about Oxygen and he said if I need Oxygen I should go to A&E 

I might look at finding my own supplier for O2 as it doesnt look like I am going to get anywhere with my GP, I have come away today with NO pain relief whatsoever, all I have to fall back in is the Indometacin which doesnt really work.

Anyone know where I can source O2 from in the UK?

Marc, your'e a genius! Hats off to you Sir!
Right under my nose here Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Thank you very much!
I was beginning to think that the regulator would have to be ordered from the US...

Cheers

Gary

Hang on mate...
There are a lot of people in your corner here...Our words won't ease your pain but,hopefully
help you feel a little bit stronger to deal with this.....

We have all been where you are now, and have come through and learned from it...
You have to get the person in there stronger and you do NOT deserve this..

Best Wishes to you ICY and a lot of Hope thrown in for good measure!

Respect

Gary

Hi Icy and welcome.
I, like Karyn, am a relative newby myself, but note, as anticipated, your getting some good advice.
Not noticed it mentioned, but I'd ask your doctor about sumatriptan injections. They're quick acting and rarely fail. I've been having attacks for twelve years and they're the best I've found. Though I am going to speak to my neuro about O2 and a few other suggestions made here on the site.
It's also worth a look at the clusterbusters site, though some of the possibilities there, some might consider, a little 'off the wall'.
I know I shouldn't have, but I couldn't help giggling at your doctors prescribing Codiene. I'd have shoved them where they'd have given him a serious degree of pain! lol
Just a last point, on the prescription costs. Try getting a prepayment card. Your chemist will have details. They're for 3 months or a year. The 3 months one only costs the same as 4 prescriptions. The annual works out even better.
Best of look with your Neuro, get genned up and go ready to tell him / her what to do. Thats my plan.

All the best

Andrew