Greg111 Posted August 15, 2018 Share Posted August 15, 2018 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. Quote Link to comment Share on other sites More sharing options...
Mum3115 Posted August 16, 2018 Share Posted August 16, 2018 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? Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted August 17, 2018 Share Posted August 17, 2018 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 Quote Link to comment Share on other sites More sharing options...
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