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Posted

Hi Everybody. Daniel here from Denmark. So one year ago I was also diagnosed with clusterheadeache and I am currently in my second cluster. But I am experienceing some other symptoms that what is normaly described also. So normaly I have really bad misofonia (hate of sound) but right now some sounds hurts in my brain. And it has been like this straight for 9 says. Is anyone also experienceing this? And also AI sais that someone with my profile (3 diagnoses) it is the perfect set for my clusters going chronic? Can anyone give me any info about this? This is absolutely one of my biggest fears right now. 

Sorry for my bad gramma and thanks a lot for everyone of you. 

Posted

....hi Daniel...glad you found us! sorry you have to be here...you communicate just fine...

...i have always had an aversion to sharp sounds, but it is quite transitory and non-CH related. however, during a hit i seek silence. not exactly "misofonia"... i've always considered it an inability to handle any more aural and sometimes visual input when fighting the beast....

...re chronic. i was ECH for 23 yrs and feared...every day...going chronic. then it happened,  turned out to be no better, or worse, than ECH...just a different version of CH that was still responsive to the same tools i had learned. my chronic was not daily HA but a non predictable hit sequence, no predictable cycle,  BETTER abort efficacy with O2 (with a well earned breathing technique that saved my soul), D3, energy drink to improve O2 efficacy and sometimes effective on its own, less intensity of hits, different and/or reduced triggers. a whole 'nother version of a f'ckn nightmare, BUT not the horror i had feared. IF it happens, you already know how to treat...don't let the fear rule your life....

best

jon

 

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