5 Years of Continuous, Degenerative "Brain Fog" and Anhedonia

Hi everyone once again.

This is a fairly lengthy read for this forum so I do apologise in advance.

For 5 years now, I've been suffering from some kind of post-infectious illness since June 2016 that's resulted in progressively worsening brain and head symptoms non-stop since the day of the onset, making my life practically not worth living anymore.

This is NOT the "brain fog" that I've heard so many speak of, which generally only happens in temporary episodes (hence "fog") and actually goes away, making you 100% functional again and able to continue with your normal life etc untill your next episode of it.

This seems more like some sort of disease process that's aggrivating my brain all the time and causing an endless onslaught of horrible brain/head symptoms which do nothing other than get progressively worse and more unbearable as time goes on with this illness.

At the start of this illness, the only symptom I had, other than the initial virus/flu that caused it, was this sudden, severe deficit in my memory recall. I only noticed this when went into college to finish off some coursework, and found that my mind was almost completely blank when trying to remember the previous knowledge I learned. The knowledge was there of course but simply wouldn't come to me, and trying to recall any of it just caused my brain to strain itself endlessly, bring on headaches and quickly become fatigued and worn out.

This symptom just slowly got worse and gradually started interfering with other aspects of my cognitive functions. I did another college course for a year after a failed the previous one. At this time, I still had a normal life and was out drinking with friends, playing in bands etc without my illness getting in the way of this. However, I eventually had to give up my second college course after I further deteriorated.

Since I was then out of education and couldn't work, I had to go through the process of claiming disability benefits. At this time, I was still managing to play in bands and my life still felt somewhat normal, although I was becoming noticably more impaired, particularly with my social abilities, which made each gig I played less enjoyable and more like a chore to please others. This was especially the case even more when my impairments started leading to anhedonia, which seems to be just an extension of my other impairments. Unlike anhedonia which is generally related to depression or medication overuse, I struggle to feel emotions because once again, my brain is somehow increasingly having to strain itself and work harder to process them. This has only gotten worse too and by far one of the worst aspects of this disease.

Other symptoms I've developed over the years with this illness include: Sudden SVT attacks and bigeminy in my heart, chest pains, various headaches, ringing ears, peripheral vision loss, random insomnia episodes, sleep cycle problems, abdominal bloating, progressive muscle weakness, motor skill deterioration and various symptoms related to intracranial hypertension.

The more my illness has progressed, I've been noticing this horrible, agrivating feeling in my head which has been getting worse as it accompanies all my other symptoms. Whatever this horrible feeling is, it seems to be directly related to whatever is causing all these other symptoms I've been having. I get episodes often lasting about a week or so where this horrible feeling gets much worse and makes all my other symptoms worse along with it. It's almost as if I can actually feel the disease attacking and destroying my brain and making the symptoms worse. This symptom also seems to cause this horrible tiredness, which seems to only affect my head and not the rest of my body, making my head feel heavy and limp.

The only way I can cope with this horrible feeling in my head is by taking codeine, which more or less numbs my brain so I can't feel what's happening to it. And at least being on the codeine helps me feel a little bit more like the person I once was, instead of a emotionally braindead zombie who feels nothing other than the pain of my own brain destroying itself.

Other than taking codeine to help cope with feeling ill all the time, nothing I've tried over the years in terms of diet, suppliments and medications have had any effect at all on any of my symptoms in any way at all, and the illness just seems to be invincible and unphased by everything that I try, doing nothing other than getting worse with time.

At least I can say there might be some hope for me though. I'll be seeing a neuroimmunologist who I hope will give me answers to this, and who knows, maybe I still have a future ahead of me. I can only hope.

Anyway, feel free to reply to this if you have any thought to share.

P.S. Please DO NOT post any comments suggesting I have anxiety/depression or ME/CFS, I've never suffered from any of these. Thanks.

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