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Posted by Robin Stoton ( on April 12, 2001 at 07:29:04:


My name is Rob, aged 42 and I have suffered with Cluster Headaches for over 20 years, only finding relief in the last 7 years.

My attacks will either occur in January or July for some reason, never any other time of the year, usually on the right side of my head (although I did have one bout on the left-hand side on one occasion)

My bouts last for about six weeks, starting of with moderate pain building up to a peak during weeks 3 and 4 and tailing off in pain and frequency towards the end of a bout.

At its peak I can have 2-3 attacks during a day for up to 2 hours at a time.

I don't need to tell you the pain is unbelievable!! It usually starts in my neck, travelling up over my right ear, then at it's peak settles over my right eye. My right eye runs, as does my right nostril (very pleasant!)

I know this may sound strange, but I find the best thing for me to do is to go to bed, stay in one position, and not move at all. This makes things just about bearable.

I know many of you need to pace the room and bang your head on the wall, but it works for me.

Also, as the attack wears off I tend to fall asleep, this brings much welcome relief.

I am self-employed, so I can time off to do this without too much trouble, people who are unable to do this have my sympathy. Of course, many employers have the attitude "Oh it's just a headache", may they never have to suffer the pain of CH.

Unusually, my father also has suffered with Clusters for many years, with no help available from the NHS during his earlier years, God only knows how he managed to put up with them. I well remember as a teenager him asking me not to turn the pages of the newspaper, as this was extremely painful for him. I now know exactly what he is talking about. He is now in his early seventies and still has clusters but fortunately the length and frequency of his bouts is much reduced (also he says the pain is nowhere near severe as it was previously). There's hope for us all I guess!

Like many of the contributors to this section I have been misdiagnosed by my GP who has prescribed medication like Aspirin, Paracetamol and Migril which have no effect whatsoever. To be fair to her, I guess she would not see many CH sufferers in her lifetime.

Eventually I badgered my GP so much that she referred me to a neurologist at the John Radcliffe Hospital in Oxford.

After a brief discussion and a few tests, he diagnosed Cluster Headaches!!

At last, I'd found someone who didn't believe it was 'just' Migraine headaches!

I say that advisedly, as I live with someone who has Migraine and I realise how painful they can be.

The neurologist prescribed Sanomigran tablets for me to take, which again had no effect at all.

After this I was prescribed Priadel (Lithium Carbonate) which is also used to treat Manic Depression!

This has been a godsend to me, but must be taken in exactly the right dose in my experience. Too little has no effect whatsoever, too much can lead to too high a level in the bloodstream. The optimum dosage for me is 300mg taken three times a day. I start to take this at the first sign of a bout of CH, which is usually a feeling of stiffness in my neck prior to the bout taking hold.

Priadel has to be taken for the full bout of CH, the last attack I had I did not get one headache, I just had the stiffness in my neck and a very sensitive scalp.

There are some side effects with Priadel in my experience, such as slight tremors and it can lead to an upset stomach on occasions. I have to take a blood test every six weeks to make sure I have not built up too much Lithium in my kidneys, as this can be dangerous.
I tend to drink lots of water whilst taking the medication, as this helps to flush out the kidneys.

I guess if I'm truthful I would prefer not to take Priadel because of the side effects, but I would rather put up with side effects than have the dreadful pain from CH.

I would be most interested to hear other sufferers experiences of using Oxygen, as these would seem to be a treatment with few, if any, side effects. When I mentioned this to my GP, typically, she had not heard of it.

I have also heard of a link between a lack of daylight, possibly being a trigger for CH, perhaps daylight simulating light bulbs may help?

I'm fortunate I have found something that works for me, I hope you are all as successful in finding relief in some way.

Maybe this information is of use to any of the many sufferers out there, if anyone would like to email me, please feel free to do so.

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