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ClusterBusters
Greg111

20 years and counting

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Hello. My name is Greg. I was watching a Netflix show called Afflicted and it brought back some bad memories. I suffered from CH from the age of 26 for about 17 years. I have been pain free for 20 years now. I am surprised to see how little has been done by the medical community in the last 30 years. I was not diagnosed with CH for the first 10 years...everyone thought I was crazy and I was beginning to believe them. Just thought this may give someone a little hope, especially if they are in year 16. You can get through this ....I did.

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Reading your post has given me some hope. My son has just started. He’s 21. Did you CH just stop? What treatment worked best for you? Please help with any advice?

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CH is quite rare and not very well understood, even by the 'experts'. It takes publicity and funding to get more doctors and scientists involved in finding a remedy. We need something like the ALS Ice Bucket Challenge - which I couldn't do because cold is a cluster trigger for me!

Until then, we have to be our own scientists, doctors and test subjects. 

I believe where the medical community lets down the most is in not being able to diagnose the condition quickly, and to provide the most basic abortive options. 

MG

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