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Steadily Progressive Brain Symptoms for 3 Years

brain fog progressive degenerative

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#1 SeanQHX1

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Posted 07 October 2019 - 02:37 PM


Hi everyone! For not long over 3 years now I've been battling a mysterious illness causing steadily progressing brain symptoms including worsening brain fog, mental tiredness, emotional blunting/anhedonia, vision problems and insomnia to name the main ones. This illness has been making my life not worth living these days as I can no longer work (I now claim benefits), had to give up many activities I used to be good at and enjoyed, have lost basically all my prospects and I'm finding it increasingly hard even to enjoy and appreciate anything in life nowadays. Doctors don't seem to be doing very little to try and find out what my illness is and appear to be dismissing it as "CFS" and "Post-Viral Fatigue", despite me having very different symptoms that are primarily brain related, not to mention the illness being progressive.

Before I had the illness I was completely healthy, aside from the fact I had Asperger's and some minor gut issues. But when I came back from Download Festival in June 2016 I ended up with some sort of cold or flu, and along with it: severe brain fog which resulted in me failing a college course in audio engineering I was just a few days away from completing. This bug I had only lasted a week before clearing up. But since then, this brain fog has remained and has only gotten worse, while even more seemingly degenerative symptoms have appeared over the past 3 years. And so far, practically nothing I've tried in terms of diet, exercise, suppliments, nootropics and medications have had any effect on my symptoms. Although in some milder cases, melatonin does help my insomnia.

Here's a time line of my symptoms so far in the order they appeared and progressed:

June 2016 - Mild cold/flu symptoms - Cleared up within 1 week

June 2016 - Cognitive Decline  - Sudden onset along with cold/flu symptoms. Mainly affecting recall and processing speed. Imagination and creativity seem to be getting particularly worse and once vivid photographic memory has almost became non-existant. Brain also seems to become very easily aggrivated and fatigued (with acompanying headaches) when thinking or doing any kind of mentally involving tasks even for short periods of time. Steadily worsening and continuing to decline.

June 2016 - Tiredness  - Constant general feelings of tiredness. Steadily worsening.
 

Sep 2016 - Insomnia (Episodic)  - Difficult or completely impossible to fall asleep at night. Can occur at random on certain days but most often happens in week long episodes, leading to 4 days or 5 days of complete sleep deprivation. This insomnia is usually acompanied by a very unpleasent 'buzzing' or 'tingling' sensation in the head. Has since then progressed to chronic/intermittent insomnia.
 

March 2017 - Persistant Headaches and Strange Head Pains - Various pains around entire head directly under the skull, including stinging and burning pains. NOT migraine, tension or cluster types (never experienced these) and are likely to be of a different cause.
 

Oct 2017 - Deteriorating Field of Vision  - No physical problems with eyes and appears to be a processing issue with the brain. Anything the eyes are focusing on will be seen at high resolution while everything else around it isn't and seems blurred out, giving a false sense of peripheral vision loss. Steadily worsening and continuing to decline.
 

Oct 2017 - Abdominal Distension and Bloating  - Bloating, swelling and fat accumulating in the abdomen (particularly at the front stomach area) resembling a "beer gut". Prior to this, stomach area looked perfectly slim and healthy. Still worsening and increasing in size as time progresses.
 

Sep 2017 - Sleep Issues + - Unrefreshing sleep even after 8-10 hours of sleep, some days worse than others. Can often wake up feeling much more tired and groggy than usual. This lasts throughout the rest of the day and is only resolved (may be better or worse) by a night's sleep. Symptoms of this continue to worsen.
 

Dec 2017 - Supraventricular Tachycardia (SVT) Attacks - Occur at random, often when in a relaxed state such as bedtime. Sudden sweating will generally occur as a warning sign first. The heart then quickly beats hard and speeds up to around 170-200 BPM before slowing down and returning to normal.
 

Feb 2018 - Blunted Emotions and Anhedonia - Emotions deteriorating in a similar manner to other cognitive functions. Not related to depression and cause unknown. Steadily worsening and continuing to decline.
 

March 2018 - Heart Arrhythmias, PVCs and Bigeminy Episodes - First began after taking propranolol (after only taking two tablets in one day), lasted 2 months, subsided,  then returned 3 months later for unexplained reasons.
 

March 2018 - Chest Pains - Strange pains that often appear at random in the chest, mainly on the left side. A dull, spreading pain in the middle area along with chest tightness (basically like a heart attack) can often appear during an SVT attack, likely due to the heart muscles being under too much strain.
 

Feb 2018 - Muscle Twitches  - Small repetitive muscle twiches that happen on any part of the body. Can also happen in the heart and be mistaken for arrhythmias.
 

April 2018 - Head Pain when lying down  - Pain quickly builds up when any kind of pressure is applied (e.g. when lying on a pillow) to any area of the head where the brain is located. This pain instantly disappears when head is lifted and pressure is relieved. This is not related in any way to headaches and is an entirely separate symptom.
 

June 2018 - Vision Issues - Flickery vision with slight static, and flickering shadows (something I would only previously get with sleep depravation). Looking at plain white objects makes this most noticable and tiny, white specks (floaters?) can also be seen.  
 

August 2018 - Tinnitus - Constant ringing in ears for unexplained reasons, without any exposure to loud sounds.
 

August 2018 - Unpleasent Head Sensation with Brain Fog - An extremely unpleasent, aggravating feeling in the head that is somewhat comparable to a bad head cold or hangover. Is acompanied by brain fog (which makes the existing cognitive issues seem much worse) and often, headaches. Happens in week long episodes generally twice each month. Taking co-codamol (30/500) seems to help block out the horrible negative feelings with these episodes and make them more tolerable.
 

October 2018 - Exertional Breathlessness - Breathlessness and very rapid heartbeat upon exertion, especially when walking up and down stairs and lifting heavy objects. Still Worsening.
 

Apr 2019 - Insomnia (Chronic/Intermittent) - The insomnia seems to have progressed to a more chronic and intermittent state where it comes and goes on a random basis. A common pattern however is alternating sleep and insomnia: one night of sleep, one night of insomnia, one night of sleep and so forth.   


Does anyone here have any idea what could be causing a progression of symptoms like this? Anyone who manages to help find out what this condition is once and for all deserves a reward from me to say the least, many thanks again! 



#2 SeanQHX1

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Posted 08 October 2019 - 06:34 PM

This thread appears to be a duplicate, could a moderator please delete it, thanks!



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#3 DaveX

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Posted 11 October 2019 - 12:50 AM

Could be an unbalanced immune system: https://selfhacked.c...-th2-dominance/

One can get that from taking many of certain supplements, and also try to balance it this way. I sometimes feel a little off or improved in such a way from anti-inflammatory or immune system modulators.

Could also be a methylating agent like methionin, SAM-E, B12 or Folic Acid. Some react differently to them, and I have to be moderate with them, they make me nervous. Could also be a severe lack of them.

Edited by DaveX, 11 October 2019 - 12:59 AM.


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#4 SeanQHX1

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Posted 11 October 2019 - 11:48 AM

Could be an unbalanced immune system: https://selfhacked.c...-th2-dominance/

One can get that from taking many of certain supplements, and also try to balance it this way. I sometimes feel a little off or improved in such a way from anti-inflammatory or immune system modulators.

Could also be a methylating agent like methionin, SAM-E, B12 or Folic Acid. Some react differently to them, and I have to be moderate with them, they make me nervous. Could also be a severe lack of them.

 

It could be, or perhaps even some sort of out of control inflamatory response in my brain due to the bug I caught, perhaps in combination with the alcohol consumption, lack of sleep, exhaustion and stresses I faced while I was at the festival. I imagine this could be the case as I've never head of a mild bug like a common cold or flu causing post-viral illnesses, any time I've heard of these cases it's always been something like glandular fever or herpes simplex which required treatment like antibiotics. I was taking B12 suppliments for several months before my illness struck but it was only untill then that had any symptoms, I had practically zero health issues for the first 22 years of my life before this. And that brain fog I speak of was a sudden onset that happened overnight. It's almost as if a bug/virus gave me a brain injury during my sleep. Also, I've taken loads of different suppliments for the past 3 years and none of them have made any noticable difference to my symptoms or any aspect other of my health.

 

What I still don't get though is how it is primarily affecting by brain while the rest of my body is almost unaffected. People who have post-viral illnesses or any kind of "fatigue" (hate to say that word) condition usually have muscle/joint issues being one of their main complaints, along with PEM/crashes as a result of exertion or intolerences to certain foods, chemicals etc. I never appeared to have any of these and my illness seems more like a degenerative brain condition than anything else. I don't quite like using the term 'brain fog' either as this is generally used to describe temporary episodes and fluctuations of cognitive impairment, rather than perminant cognitive impairments that worsen in a degenerative mannor.

 

These symptoms however do seem to point towards brain inflammation rather than my immune system. Besides these symptoms I'm having, my immune system seems to be in good working order as I barely get catch any bugs or viruses and when I do, they will last for about a week at the most before clearing up. So maybe it could even be a Th1 problem perhaps, I'll need to do more research on this though.


Edited by SeanQHX1, 11 October 2019 - 11:50 AM.


#5 DaveX

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Posted 13 October 2019 - 02:22 PM

I would maybe go for supplementing brain membrane health, like Citicoline, Uridine (sublingually), Omega 3 etc. But that's just my instinct. Omega 3 has also a good effect on lowering inflammation.

 

Aside from that cytokine response, I've also personally been looking into Glucocorticoid receptors on the same site, and some of the supplements that have an effect on immune response also have an effect on these, which might account for some of the felt effects when taking them. The whole thing has to do with the often passingly mentioned HPA-axis.

 https://selfhacked.c...icoid-receptor/

 

 

Another idea might be diabetes, though I don't really know how that is supposed to feel or progress...



#6 DaveX

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Posted 05 November 2019 - 07:52 PM

Some of those "immune-shift" reactions I've spoken of may well have had other reasons, because I can't reproduce them. All I get are the normal effects from taking something, but not holistic averse longtime symptoms.

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#7 SeanQHX1

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Posted 10 November 2019 - 07:39 PM

I would maybe go for supplementing brain membrane health, like Citicoline, Uridine (sublingually), Omega 3 etc. But that's just my instinct. Omega 3 has also a good effect on lowering inflammation.

 

Aside from that cytokine response, I've also personally been looking into Glucocorticoid receptors on the same site, and some of the supplements that have an effect on immune response also have an effect on these, which might account for some of the felt effects when taking them. The whole thing has to do with the often passingly mentioned HPA-axis.

 https://selfhacked.c...icoid-receptor/

 

 

Another idea might be diabetes, though I don't really know how that is supposed to feel or progress...

 

I will try taking citicoline again, this time at a higher dose as I was only taking 500mg previously. It didn't have any effects at all the last time I took it but maybe because the dose was too low. I also take Omega 3 fish oil (1000mg) daily, but perhaps a highter dose could also help here.

 

I'm not quite sure how much of a role inflammation is playing here with this brain disease I have and how much inflammation exactly. But it certainly does feel like something is actively irritating my brain all the time and perhaps even destroying cells or tissue. It's like a degenerative brain disease where you can actually feel your brain being attacked and destroyed all the time, with your existence slowly dying away with it. I really hope I can find a cause soon and manage to treat it somehow before it's too late.

 

It doesn't look like I have diabetes either and if I did, this likely would have showed up in the routine tests the NHS have been giving me. This illness started off as a sudden onset of severe brain fog along with a mild virus/bug I caught, so I've been narrowing things down to conditions that can cause symptoms like this and haven't found anything yet.







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