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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Newbie......I have clusters....
        
(Message started by: Stypig on May 5^th, 2004, 10:31am)

Title: Newbie......I have clusters....
Post by Stypig on May 5^th, 2004, 10:31am

Hi,

I'm a 21 year old female and my doctor diagnosed me as having cluster headaches, about 7 months ago.
I went to see my GP after having a continuous headache for about three months. (Maybe I should have gone earlier but as a life-long sufferer of migraine I thought I'd try and see if I was triggering them with anything. So I cut out dairy and eggs and fatty foods, because they're my normal triggers)

I explained to my doctor that I had headaches on a daily basis, and that they went in a cycle. The first two days they were just normal headaches quite painful but I could still carry on with my life. The next three or four days they slowly built up to bigger and badder headaches. But I had no visual things (light spots, light sensitivity, loss of peripheral <-? vision) until the last two days when my head imploded and exploded simultaneously. Then the cycle started again, and again and again.

She immediately diagnosed me as having cluster headaches and prescribed Pizotifen. Which seems to help most of the time. But I'm not sure if I want to stay on it for too long, because I've heard some bad things about prolonged use. My doctor says she's not heard anything, but I wondered if anyone here can help me. I tried to stop taking them for 3 weeks but my headaches came back as bad as ever, so I went back on them as I had exams at university to do.

I'm from the UK and so I'm not sure what the general treatment for cluster headaches is over here. But as I don't pay for my prescriptions (because I'm a poor student) I don't mind trying lots of things.

Sorry for the rambling message I thought I'd give my history.

Does anyone know of other non-medication things I can do for my headaches? I get them during the day and at night, but they get worse during the night and often 'break' in the early hours of the morning. I don't drink alcohol, smoke, eat meat or alot of dairy and I'm not stressed. I have suffered from normal migraine for my entire life, triggered by food stuff.

Thanks for listening/reading....

......Stypig

xxxxxxx

Title: Re: Newbie......I have clusters....
Post by Filbert on May 5^th, 2004, 2:18pm

Hi Stypig
Welcome to the board but sorry you're suffering at the moment.Sorry to ask but could you be a bit more specific about your symptoms and have you taken the "cluster quiz" on the left? There are parts of your post that sound like clusters but other parts that sound a little atypical but of course I'm not a doctor. There is a British site for CH sufferers if you didn't know already, www.ouchuk.org You can click on the OUCH link if you want.You can ask questions on the "sufferer support" section.Also read, read ,read the info on this site -its very good! Anyway hope you get some painfree time soon!

All the best Filbert

Title: Re: Newbie......I have clusters....
Post by pubgirl on May 5^th, 2004, 6:58pm

Hello Stypig

Another Brit here, Wendy. I echo what Filbert says about OUCH UK and doing the quiz, but have to say rather more strongly than him that your symptoms as you described above do not really match Cluster Headaches. A continuous headache for 3 months really strongly suggests something other than CH.

There are many headache conditions which have similarities to CH and it appears increasingly UK GP's , having previously never heard of CH, are now over diagnosing it and saying every one-sided headache or group of headaches is CH.

I would like to suggest several things:
1. Read up on the CH diagnostic criteria and see if your symptoms fit
2. Get a referral to a neurologist who specialises in headaches to get the diagnosis confirmed
3. Talk your symptoms through with one of the sufferers on the OUCH Uk Helpline (the number is on the OUCH UK website)

If your GP is right and it is CH, read up on the preferred treatments as Pizotifen is way down the list of preventives and works for very few cluster sufferers. You primarily really need a good abortive and possibly a preventive as well.

Good luck and keep us posted

Wendy