8 replies to this topic

[SeanQHX1]

Hi everyone once again.

 

It's been 5 years since 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. And best of luck to others on your brain healing journeys!

Edited by SeanQHX1, 03 April 2021 - 04:00 PM.

[Justin BoBustinBananaFanaF]

Good luck and keep us posted. Could it possibly be lymes? do you have any depersonalization symptoms?

[SeanQHX1]

Good luck and keep us posted. Could it possibly be lymes? do you have any depersonalization symptoms?

 

Thanks, I will do.

 

I was previously tested for Lyme which was negative, but I reckon it could well be neuro Lyme. Typical cases of Lyme cause a lot of physical complaints, post-exertional fatigue etc like many other post-infectious disorders. However, my symptoms are primarily localised in my brain/head and many of them seem to be IH related.

 

I don't have any depersonalisation symptoms, or feel any different psychologically. The anhedonia I mentioned is just the result of my brain slowing down and straining itself to process information, just like every other cognitive aspect that's been suffering under the effects of this illness. The more basic a cognitive function is and the less processing power my brain needs for it, the longer it waits in line to be affected as my illness worsens.

Edited by SeanQHX1, 04 April 2021 - 09:58 AM.

[Turnbuckle]

and various symptoms related to intracranial hypertension.

 

 

​Sounds like you may have corrected diagnosed it yourself. Or has this been ruled out in these 5 years?

[SeanQHX1]

​Sounds like you may have corrected diagnosed it yourself. Or has this been ruled out in these 5 years?

 

No, it's not been ruled out. But I do reckon I could have some secondary Intracranial Hypertension resulting from whatever problems my illness is causing in my brain. Getting severe ("worst headache ever") head pains when you put pressure on your cranium is an obvious symptom of this. 

 

There are many conditions that can cause this though or mimic the symptoms. This includes brain infections, with neuro Lyme being one of them.
 

[Turnbuckle]

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.

 

 

So perhaps this wasn't a virus as you'd assumed, but Lyme disease to begin with, which can present with similar symptoms. This would be less likely if in winter, more likely if summer.

[SeanQHX1]

So perhaps this wasn't a virus as you'd assumed, but Lyme disease to begin with, which can present with similar symptoms. This would be less likely if in winter, more likely if summer.

 

Indeed, there's no telling whether not it was a virus at all. If it were, this would need to have been a type enterovirus, since these can enter the brain and cause complications, although these are generally more life-threatening ones like encephalitis, meningitis etc. I'd also say this because you don't need to have any physical contact with people to catch an enterovirus.

 

However, on the other hand, it could well be an infection like Lyme, or one of it's co-infections invading the brain. All I know is that I suddenly took some kind of immune system reaction presenting with flu-like symptoms, which appeared to subside within a week, but left these permenant brain issues I speak of that continue to worsen.

 

It was summer (June) when the initial flu-like onset of this disease started, and had fallen ill when I came back from Download Festival in 2016. I also noticed a small insect bite on my hand, possibly from a mosquito. I just thought this was a harmless insect bite though, since there was no rash, but this could well have vectored the initial illness. At the same time though, I could have easily caught some harmful bacteria, virus or parasite from the poorly maintained toilets at the festival, or from contaminated food or drink.
 

[Question Mark]

Stop eating gluten. Personally, my brain fog went away almost entirely when I went on a gluten-free diet. You could have other food allergies/sensitivities that you aren't aware of, and you might want to consider getting allergy tested.

[SeanQHX1]

Stop eating gluten. Personally, my brain fog went away almost entirely when I went on a gluten-free diet. You could have other food allergies/sensitivities that you aren't aware of, and you might want to consider getting allergy tested.

 

I doubt gluten is the culprit here, or any kind of food allergy. My diet has been very low on gluten anyway and I've tried various elimination diets over the years, but the needle had never moved on my symptoms and they just continue to progress independent to whatever I try or don't try. I'm pretty sure if certain foods were aggrivating my symptoms, they wouldn't keep progressing the same way after months of not eating said foods. Brain fog as severe as what I'm describing, which only gets progressively worse and leads to other worrisome symptoms, I'd say needs medical attention from doctors. I've been doing all the wrong things by trying to fix it myself with diet, suppliments etc. But I am glad to hear that you fixed your brain fog for the most part by going on a gluten-free diet.

 

I now suspect after the initial sudden flu-like onset and 5 years of non-stop progressing brain symptoms, that I could well have a case of autoimmune encephalitis. I'll be seeing a neuroimmunologist soon who will hopefully give me further answers on this. I'll keep you all posted in the meantime.