My history of CH..sorry if it is a bit long!

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Posted by Cathy Rowe ( on June 26, 2000 at 13:01:24:

I am a new user to this website so forgive me if I use the wrong terminology. I am a 33 year old woman and have had cluster headaches since I was 17. I am an American but have lived in England for the last 15 years. I suspect my experience of health professionals is somewhat different from Americans.

I was misdiagnosed as having sinusitis for years and was on the verge of having an operation when I decided to go to a doctor and just describe my symptoms rather than say 'I have sinusitis'. It was this doctor that sent me to a 'migraine clinic' where I was eventually prescribed with Imigran. The problem with the National Health Service in England is that it can take weeks to see a specialist by which time the cluster has passed. I also have problems getting prescriptions for Imigran, as the medication is expensive. I only have to pay 6 (about $10) for each prescription but doctors are reluctant to give me any more than six tablets at a time. I take six tablets every day when the cluster reaches its peak. I sometimes feel like a drug addict turning up at the doctors hoping and praying they will give me another prescription.

I am lucky in some ways compared to some of the postings I have read on this website. The shortest remission between the clusters has been 18 months and the longest was almost 4 years. I had at that time hoped they were gone.

The intensity and duration of the clusters gets worse with each attack. I have had my current cluster headaches for almost three weeks. I suspect they will last another three weeks. When the cluster peaks I feel like I have a headache all the time. It just seems to sit there in the background.

I was interested to read in this website that even the smallest amount of alcohol can make the cluster much worse. I had two glasses of wine Saturday night and was up all night and all day yesterday having one headache after the other.

I have been prescribed steroids as a way to try and 'switch off' the cluster. I have read on another website that I shouldn't take steroids because of the harmful side effects. I do find the conflicting information I read a bit scary and wonder if I am doing the right thing.

The neurologist has also prescribed three other medications (to reduce the pain and also reduce the intensity and duration of each headache).

I have suggested to many doctors in England that oxygen might help. They just look at me like I am crazy. I feel like saying well if it doesn't help I can get someone to hit me over the head with the tank that at least will cause me to lose consciousness which would definitely be a help! I will bring the information I have printed off from this website to see if I can finally persuade someone to give me an oxygen tank.

I also find it helpful to massage the back of my neck and side of my face. Yawning also helps, but you cannot do that for an hour! When I thought I had sinusitis I put Vicks menthol in hot water and inhaled that with a towel over my head. I would say that this does still help. I suspect it is just because I am breathing deeply and inhaling more oxygen. But it works so I stick with it. It even helps the very painful ones in the middle of the night. I have also been given injections of morphine that usually involves begging a doctor or nurse at the hospital. Begging works (as does crying lots) but I wish it didn't come to that for me to get some relief.

I have never found alternative therapy to help much though and often makes the headaches worse. I have tried reflexology and also bands on my wrists. Both brought on very painful headaches.

It has been incredibly reassuring to read of others experiences on this website. I have never met anyone else that suffers from cluster headaches. I have met lots of people that suffer from migraines and they seem to assume that what I am going through is the same as them. I get rather sick of hearing that my headaches are triggered by something like a food or stress. Given that I have these at times when I have been eating well and exercising lots and also at times when my diet has not been as good it surely is not related to food. I have also had them at incredibly stressful times in my life and also when I have been relatively stress-free.

This has been the most informative and reassuring websites I have seen.

Thank you


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