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Hi everyone again. After looking through some old threads, I see that someone previously reported brain symptoms which are exactly like mine and couldn't have put it any better into words. This was after I spent years thinking that I was the only one in the planet with this mysterious brain condition. While I now know that I'm not entirely alone with this, I feel terrible knowing that there are others out there going through what I have been for years, both with this illness and with dismissive doctors who don't want to help their patients get better and actually live again.
https://forums.phoenixrising.me/threads/how-to-cope-with-disabling-brain-symptoms.75418/
The symptoms described in this post are almost identical to mine and nothing at all like classic ME/CFS. Similarly to this person's story, I was doing rather well at college studying music production and sound engineering, and was just 5 days away from completing a 2 year course before this disease suddenly hit me. I went from being able to record bands in studios using mixing desks, effects units, Pro Tools etc and remember complex theories and mathematics on how sound works... to my mind being completely blank and getting nothing but headaches from trying to think and remember anything I learned from college, all just overnight. Since then, I've just been steadily deteriorating and I can no longer work, can barely socialise and have abandoned nearly all my hobbies and activies I once enjoyed. I feel like I could potentially still do these things, just that they take insane amounts of effort and willpower that I no longer have with my brain constantly killing me all the time.
It started off as a mild cold/flu bug (nothing at all like the viruses/infections that would usually trigger ME/CFS) and only noticed how impaired I was when I went back into college and tried to finish off my final essay. These impairments of course were nothing I ever experienced with any bug I caught, I didn't know what hit me when it happened and I never knew what "brain fog" was untill a doctor threw the CFS label on me (or post-viral fatigue as he called it at the time) and I began looking up the condition I supposedly had on the internet.
These brain problems I have are 24/7, barely flucuate in any way and have only been steadily getting worse since the onset, with further brain problems setting in over the years like headaches, vision issues, worsening insomnia, worsening anhedonia/flat emotions, other aspects of my memory and recall getting worse, horrible head feelings (hard to put into words), increasing tiredness and heart rhythm issues (bigeminy and SVT attacks). Everything I've tried in terms of food, activity, suppliments, nootropics and medications has had zero effect at all on my brain symptoms in the past years, felt like a waste of time and money and I've almost given up trying anything else as I just know that nothing will happen. I also kept a symptom diary for a while but it proved useless to me as nothing ever changed with my illness, other than it slowly worsening with time.
The only thing that's given me any relief from feeling so horrible all the time is taking high doses of codeine or co-codamol. While it doesn't help me regain any brain function I've lost, it sort of numbs my brain so I don't feel it being attacked so much, or at least makes those nasty head feelings/sensations more tolerable so I can function somewhat and get through my day. I'm concerned about the fact I've been taking opioids daily for the past 2 years, and especially having to use them more frequently as my disease progresses, but just now I feel like it's my only option.
Looking at the thread I mentioned, I'm suspecting that my condition could well even be some sort of autoimmune problem with me brain. The virus/bug I caught, despite just being a common cold/flu, could have perhaps triggered some autoimmune response in my brain during my sleep, on the night before that particular dreadful day at college. I imagine this could explain why my body seems to be completely healthy and in perfect working order (no CFS symptoms at all), while my head feels like it's under constant bombardment from something. Hopefully I can look further down this avenue and get tested for this.
Anyway, thanks for reading all this. I just hope I get to the bottom of this condition soon before it's too late.
https://forums.phoenixrising.me/threads/how-to-cope-with-disabling-brain-symptoms.75418/
The symptoms described in this post are almost identical to mine and nothing at all like classic ME/CFS. Similarly to this person's story, I was doing rather well at college studying music production and sound engineering, and was just 5 days away from completing a 2 year course before this disease suddenly hit me. I went from being able to record bands in studios using mixing desks, effects units, Pro Tools etc and remember complex theories and mathematics on how sound works... to my mind being completely blank and getting nothing but headaches from trying to think and remember anything I learned from college, all just overnight. Since then, I've just been steadily deteriorating and I can no longer work, can barely socialise and have abandoned nearly all my hobbies and activies I once enjoyed. I feel like I could potentially still do these things, just that they take insane amounts of effort and willpower that I no longer have with my brain constantly killing me all the time.
It started off as a mild cold/flu bug (nothing at all like the viruses/infections that would usually trigger ME/CFS) and only noticed how impaired I was when I went back into college and tried to finish off my final essay. These impairments of course were nothing I ever experienced with any bug I caught, I didn't know what hit me when it happened and I never knew what "brain fog" was untill a doctor threw the CFS label on me (or post-viral fatigue as he called it at the time) and I began looking up the condition I supposedly had on the internet.
These brain problems I have are 24/7, barely flucuate in any way and have only been steadily getting worse since the onset, with further brain problems setting in over the years like headaches, vision issues, worsening insomnia, worsening anhedonia/flat emotions, other aspects of my memory and recall getting worse, horrible head feelings (hard to put into words), increasing tiredness and heart rhythm issues (bigeminy and SVT attacks). Everything I've tried in terms of food, activity, suppliments, nootropics and medications has had zero effect at all on my brain symptoms in the past years, felt like a waste of time and money and I've almost given up trying anything else as I just know that nothing will happen. I also kept a symptom diary for a while but it proved useless to me as nothing ever changed with my illness, other than it slowly worsening with time.
The only thing that's given me any relief from feeling so horrible all the time is taking high doses of codeine or co-codamol. While it doesn't help me regain any brain function I've lost, it sort of numbs my brain so I don't feel it being attacked so much, or at least makes those nasty head feelings/sensations more tolerable so I can function somewhat and get through my day. I'm concerned about the fact I've been taking opioids daily for the past 2 years, and especially having to use them more frequently as my disease progresses, but just now I feel like it's my only option.
Looking at the thread I mentioned, I'm suspecting that my condition could well even be some sort of autoimmune problem with me brain. The virus/bug I caught, despite just being a common cold/flu, could have perhaps triggered some autoimmune response in my brain during my sleep, on the night before that particular dreadful day at college. I imagine this could explain why my body seems to be completely healthy and in perfect working order (no CFS symptoms at all), while my head feels like it's under constant bombardment from something. Hopefully I can look further down this avenue and get tested for this.
Anyway, thanks for reading all this. I just hope I get to the bottom of this condition soon before it's too late.
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