Freud Posted October 21, 2021 Share Posted October 21, 2021 Any one else have a hard time accepting that CH hurts too much not to have brain damage? I know the science but emotionally my brain doesn’t want to accept it’s benign... Quote Link to comment Share on other sites More sharing options...
Freud Posted October 21, 2021 Author Share Posted October 21, 2021 Not that I rationally think it’s anything other than the worst pain in medicine that is not a sign of something more serious. But at times like these (up spike in severity) I can’t help but wonder. It feels like my head is going to explode and you just want to die. 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 21, 2021 Share Posted October 21, 2021 I understand buddy .when i first started getting them when i was 13 years old i thought i was going to die ., but we all know its not going to kill us Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 22, 2021 Share Posted October 22, 2021 ...yeah...it was a worry, but after a number of real bad hits early on....and even w/o a diagnosis...there didn't seem to be residual physical damage so i started worrying/concentrating on the mental health aspects. hard work...nothing physical to grab on to...i constantly wonder how folks maintain in the face of CH. my admiration for the perseverance of clusterheads is endlessly deep... ....what became near incomprehensible for me was "how is it even possible to SURVIVE a pain so incredible it defies description?". there were 10's (thankfully very rare) where it hurt so bad i actually forgot to breathe......yet here i am.... 5 Quote Link to comment Share on other sites More sharing options...
xBoss Posted October 22, 2021 Share Posted October 22, 2021 I thought I read somewhere that CH can cause some memory loss over the years. I feel like my memory has some holes in it after the last few cycles. 2 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted October 22, 2021 Share Posted October 22, 2021 2 hours ago, xBoss said: I thought I read somewhere that CH can cause some memory loss over the years. I feel like my memory has some holes in it after the last few cycles. Memory loss? ?? oh crap, I forgot what I was gonna say. Im with ya on that one 2 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 25, 2021 Share Posted October 25, 2021 Agreed! It does affect memory in my experience. So I wind up taking those pills for old folks to help with memory. They seem to help or the placebo effect is working!!! I'm old, so either way is just fine. Help is help! 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 25, 2021 Share Posted October 25, 2021 Sure seems plausible that it would cause some sort of damage... I know when I had my last MRI it said something about a T2 something or another and when I asked my neurologist he mentioned it being a small white mass that was basically scar tissue he said it wasent of concern unless I had more show up down the road and that it was common in both CHRs and migrainers.... So to me that seems like damage idk... 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 25, 2021 Share Posted October 25, 2021 Shit damage to the brain . I wont tell the missus . She already thinks im mad . That will just confirm it 3 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 25, 2021 Share Posted October 25, 2021 Bosco, my MRI's come back with that damage too. So when I get forgetful, I blame it!!! 3 Quote Link to comment Share on other sites More sharing options...
xBoss Posted October 25, 2021 Share Posted October 25, 2021 10 minutes ago, spiny said: Bosco, my MRI's come back with that damage too. So when I get forgetful, I blame it!!! I never had an MRI. I def have to get one eventually. The whole rule out other stuff is probably not an issue since I have had this condition for over 23 years but still need to check. I have terrible medicare insurance though. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 25, 2021 Share Posted October 25, 2021 You never had mri scan xboss wow . . First thing i had .ive had this for nearly 40 years now and the docs over here still insist on giving me then . I think they are still looking for a brain Ive had about 15 i think ive lost count Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 25, 2021 Share Posted October 25, 2021 31 minutes ago, xBoss said: I never had an MRI. I def have to get one eventually. The whole rule out other stuff is probably not an issue since I have had this condition for over 23 years but still need to check. I have terrible medicare insurance though. It couldn't hurt to get one done. I am not sure where you are located but just be careful when they order it up that its "in-network" as the first one I had they sent me to some "out of network" location and I got a bill for $700.00. I hate getting MRI's as I am claustrophobic and feel like I'm being stuffed into a way to small rocket ship... Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 25, 2021 Share Posted October 25, 2021 1 hour ago, spiny said: So when I get forgetful, I blame it!!! That's as good of an excuse as any! LOL 1 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 26, 2021 Share Posted October 26, 2021 Mri lol i hot mixed up i was on about ct scans idiot Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 26, 2021 Share Posted October 26, 2021 9 hours ago, Shaun brearley said: Mri lol i hot mixed up i was on about ct scans idiot I don't like those either but they are not as bad because it's a big open doughnut.. The contrast is no fun though (makes you instantly hot)... Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 26, 2021 Share Posted October 26, 2021 Had loads bosco. docs seem to think they will find something new everytime they give me 1 for some reason . Idiots really but if it makes them happy 1 Quote Link to comment Share on other sites More sharing options...
Axel_B Posted October 29, 2021 Share Posted October 29, 2021 On 10/26/2021 at 8:47 AM, Shaun brearley said: You never had mri scan xboss wow . . First thing i had .ive had this for nearly 40 years now and the docs over here still insist on giving me then . I think they are still looking for a brain Ive had about 15 i think ive lost count Hahaha 1 Quote Link to comment Share on other sites More sharing options...
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