8 replies to this topic

[SeanQHX1]

Hi everyone again, I do apoligise in advance once again for the long read!

 

Looking back at the 3.5 years I've had my mysterious brain condition, I'm realising more and more that it most probably isn't some rare disease I have at all and could well be in fact something easily treatable that some very negligent doctors (one GP I was seeing in particular) could have missed, and has been left so long without treatment that it's just leading to further health problems.

 

Here is an updated list/timeline of my symptoms below:

 

June 2016 - Mild Viral Symptoms - A sudden onset of viral/infectious symptoms resembling that of a common cold or mild flu bug, including dizzyness, sweating, shivering and a dry cough. Cleared up within 1 week and no longer an issue.

June 2016 - Brain Fog / Cognitive Decline - Sudden onset along with viral symptoms, most likely due to brain inflammation. Mainly affecting recall and processing speed, not so much memory. Brain also seems to become very easily aggrivated and fatigued (with accompanying headaches) when thinking or doing any kind of mentally involving tasks even for short periods of time. Noticably worsened and started to impair daily functioning in December 2017 when annhedonia and further cognitive problems set it. Steadily worsening and continuing to decline.

June 2016 - Chronic Tiredness - Sudden onset along with viral symptoms and brain fog/cognitive decline. Started off mild, then gradually worsened along with the cognitive problems. Constant, general feelings of tiredness. Steadily worsening.

 

Sep 2016 - Insomnia (Episodic) - Gradual Onset, started off mild before progressing. Difficult or in some cases completely impossible to fall asleep at night. Can occur at random on certain days but most often happens in week long episodes, which can lead to 4 days or 5 days of complete sleep deprivation. Has since then progressed to chronic/intermittent insomnia as of April 2019.

 

March 2017 - Mild Headaches / Head Pains - Gradual onset. Various pains around entire head. NOT headaches such as migraine, tension or cluster (never experienced these) and are likely to be of a different cause related to my condition. Becoming more frequent and worsening.

 

Sep 2017 - Vision Issues - Gradual Onset. Poor vision due to tiredness and sleep depravation, giving a false sense of vision field loss. Generally oblivious to what I'm seeing unless consciously thinking about it. No physical problems with eyes and appears to be a processing issue with the brain. Steadily worsening and continuing to decline.

 

Sep 2017 - Sleep Issues - Gradual onset. 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.

 

Sep 2017 – Bloated / Distended Abdomen - Gradual onset, not noticable at first. Bloating, swelling and possible excess fat accumulating in the abdomen (particularly at the front stomach area). Mild pain and discomfort in this area. Prior to this, stomach area looked perfectly slim and healthy. Still worsening as time progresses.

 

Dec 2017 - Supraventricular Tachycardia (SVT) Attacks - Sudden onset. 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 - Flat Emotions / Anhedonia - Gradual onset. Emotions flattening and deteriorating in a similar manner to other cognitive functions, leading to a state of anhedonia as it worsens. Not related to depression (never had this) and cause unknown. Steadily worsening and continuing to decline.

 

Feb 2018 - Further Cognitive Problems - Gradual onset. Further cognitive problems have set in along with the emotional blunting. Imagination and creativity seem to be getting particularly worse and once vivid photographic memory has almost became non-existant. Word finding is also particularly bad and recent memories of events now feel like distant ones. Steadily worsening and continuing to decline.

 

March 2018 - Heart Arrhythmias, PVCs and Bigeminy Episodes - Various Heart arrhythmias which first began suddenly 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 - Sudden onset along with heart arrhythmias. 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.

 

March 2018 - Muscle Twitches - Gradual onset. 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 - Rapid onset, soon after the heart arrhythmias and chest pains. A strange pain which 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 - Further Vision Issues - Gradual Onset. 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 - Gradual onset. Constant ringing in ears for unexplained reasons, without any exposure to loud sounds.

 

August 2018 - Unpleasent Head Sensations (Episodic) - Gradual onset. An extremely unpleasent, aggravating feeling in the head that is somewhat comparable to a bad head cold without the physical symptoms. Is acompanied by worse brain fog (which makes the existing cognitive issues seem much worse), increased tiredness and often, acompanying head pains, drastically impairing daily functioning. 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.

 

August 2018 - Further Head Pains (Episodic) - More severe head pains which occur during the unpleasant head episodes, then subside once the episodes end. These include burning and stinging pains around the brain areas (which I refer to as "battery acid brain", due to it feeling like hot acid burning the brain), boring head pains and feelings of increased pressure in the head.

 

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. Unpleasent head sensations can often acompany this type of insomnia, making sleeping very uncomfortable and difficult. Has since then progressed to severe insomnia as of December 2019.

 

July 2019 - Loss of Balance - A sudden, brief loss of balance which can occur at random for no apparent reason. Happens occasionally, generally once per week.

 

Oct 2019 - Sudden Rapid Weight Loss - Rapid onset. Rapid loss of fat and possibly muscle all over the body, despite getting all the correct nutrition and not changing my diet for years. This weight loss excludes the abdomen which remains heavily bloated and distended. Steadily worsening.

 

Dec 2019 - Severe Insomnia - The insomnia has now further progressed to a state where it is not only chronic and intermittent in regards to falling asleep like previously, but now seems to be causing problems staying asleep. This results in a fragmented 3-5 hours of sleep each night, with roughly just 1 hour of sleep at a time before waking up and falling back asleep. The resulting, ongoing continued sleep depravation and poor quality sleep is making the cognitive impairments and tiredness noticeably worsen beyond their likely current baseline levels.

 

As you can see in my timeline of symptoms, my condition began in June 2016 simply with a cold/flu-like bug, which had some tiredness and brain fog accompanying it. The brain fog wasn't quite so severe at the time (it mostly just affected my college studies, especially exams) and there was no other symptoms at that time.  And while the bug went away very quickly without me doing anything, the brain fog and tiredness lingered for months.  

 

My GP at the time "diagnosed" this lingering brain fog I had as Post-Viral Fatigue, then ME/CFS. The doctor told me there was no treatment or cure for my so called "fatigue", and that it will go away if I eat healthy and exercise. However, the brain fog and tiredness continued and just gradually got worse. I then started trying loads of suppliments that supposedly helped brain fog and fatigue but they done nothing at all. And when I went back to my doctor, he just kept saying the same things "eat healthy, exercise etc", then proceeded to blame me for making my brain fog/tiredness worsen, claiming I wasn't doing these things enough. Eventually after several months, the doctor sent me for a bunch of blood tests (blood sugar, thyroid, liver/kidney function) which all came back normal. He also reluctantly sent me for a CT scan of my brain (even though I asked for an MRI), which also came back fine, as expected.

 

During the first year and a half I spent with this undiagnosed and untreated brain issue, despite the brain fog, I was still able to function perfectly well as a person. I was doing another college course (after failing the previous one due to my impairments), doing rehearsals and live gigs with bands I played in (I play keyboards) and was out partying and drinking with friends, just as I did before. At this time, my impairments were only noticable when I had to start studying for exams, which I ended up failing miserably.

 

It was after this year and a half that my condition noticably worsened and other, more worrying health problems started to set in. First it was sudden SVT attacks in my heart, then further decline in other aspects of my mental functions, then a bunch of pains and horrible sensations in my head and more recently, I began rapidly losing weight and muscle. Now, all my symptoms have gotten so bad that I can hardly function now unless I dope myself up on codeine tablets, which basically numb my brain of all those horrible feelings and sensations in my head.

 

Looking back all those years I've had this condition and the way it has progressed, I'm thinking that most of these health problems I'm now having could have easily been prevented before it had gotten to this stage if I seen a competent doctor who addressed the original problem that lead to all my other symptoms. I suspect that my brain fog at the start could have been some sort of brain inflammation or encephalitis resulting from the bug/virus I had, which could well have been cured quickly with a course of antibiotics and/or corticosteroids (like prednisone perhaps?).

 

A trainee doctor from the UK I spoke with online was also shocked at the fact I had such poor medical testing and low little had been done after over 3 years of this illness. One of the primary reasons for this of course was the fact I was waiting 6 months (half a year!) at a time to see specialists who done almost nothing anyway.

 

I just hope all this madness with the coronavirus ends soon. Not only do I fear for my life catching it, as for everyone else in a vulnerable state with their health, but the fact that the NHS are even more busy, short-staffed, under-resourced and overworked than ever, making my condition an even lower priority for them than it already was.

 

Hopefully I'll be able to get properly tested soon and find out once and for all what this condition is. I'm now looking to get my brain fully tested with an MRI, EEG and PSG (sleep study) and maybe then I'll get some answers. And if NHS doctors arn't willing to do this, hopefully I can find people who will without emptying my bank account. And as I said, it looks alot like some sort of chronic brain inflammation from a virus that's long overdue treatment. I just hope I can still get it treated, it hasn't led to any permenant brain damage and I can go back to living life the way I used to.

 

Anyway, thanks for reading all this, stay safe everyone!

Edited by SeanQHX1, 30 March 2020 - 06:20 PM.

[Turnbuckle]

Consider viral-induced intracranial hypertension.

[SeanQHX1]

Consider viral-induced intracranial hypertension.

 

Thanks, I have looked into intracranial hypertension before, especially knowing that this can happen suddenly with an infection or virus.

 

I know one main symptom of this is a severe headache, along with vomiting. In my case, I don't appear to be experiencing any actual headaches, just a bunch of random pains all over my head that are hard to describe. And I believe IH also generally causes papilledema and actual physical problems with the eyes/optic nerves, whereas there appears to be nothing wrong with my eyes, other than the vision issues you would expect to get with prolonged tiredness and sleep depravation.  

 

Another issue is that I don't even know if it even was a virus that caused my condition, I'm just going purely by the symptoms I had at the time which were just like any common cold or flu I had. So I can't even say for sure that it's post-viral or viral-induced.

 

I'm not so sure that it's quite as serious as IH as of yet, and would say it's more likely to be just a heavily inflamed brain from a bug/infection/virus that's been left untreated and has been slowly worsening over the years.

 

Hopefully for once I'll finally find some answers with some proper tests after things eventually settle down with the coronavirus.
 

Edited by SeanQHX1, 31 March 2020 - 08:18 PM.

[gamesguru]

My initial guess was a chronic EBV/CMV or norovirus infection in an immune-compromised patient, but the lack of initial mononucleotic or gastrointestinal effects don't support this.  Then my attention was pointed to circovirus.

 

If you never heard of either of these, then I didn't either until recently.

 

Norovirus is common in tropical regions, on cruise ships and causes vomiting in adults.  In children flu can also cause vomiting, which leads to some confusion, but in adults flu-like illness is rarely cause of vomit and "stomach flu" is a misnomer.   But norovirus is also not well known to public, like HIV or rhinovirus, so vomiting illnesses tend to be either explained away too simply (the flu) or shrouded in darkness (what if its the new coronavirus?)

 

Well what is circovirus, I have even less of a clue, but here we go..

 

Is chronic fatigue syndrome caused by a rare brain infection of a common, normally benign virus? - PubMed

Read full article here

 

Chronic fatigue syndrome (CFS) is a disabling disease of unknown aetiology. A variety of factors have been suggested as possible causes. Although the symptoms and clinical findings are heterogeneous, the syndrome is sufficiently distinct, at least in relation to the more obvious cases, that a common explanation seems likely. In this paper, it is proposed that the disease is caused by a ubiquitous, but normally benign virus, e.g., one of the circoviruses. Circoviruses are chronically present in a majority of people, but are rarely tested for diagnostically. Normally these viruses do not penetrate the blood-brain barrier, but exceptions have been reported, and related viruses cause disease in the central nervous system of animals. The flu-like illness that often precedes the onset of CFS may either suppress immune function, causing an increased viremia, and/or lower the blood-brain barrier. In both cases the result may be that a virus already present in the blood enters the brain. It is well known that zoonotic viruses typically are more malignant than viruses with a long history of host-virus evolution. Similarly, a virus reaching an unfamiliar organ may cause particular problems.

 

 

Coxsackievirus is also known to cause myocarditis (heart inflammation and pain).  So it's hard to really pinpoint one virus, even given your detailed timeline, because sometimes they are not so well understood and the individual response over time can vary.  Even with the new coronavirus we saw in Chinese mostly fever (89%) and dry cough (53%).  But then in the US we are already reporting conjunctivitis and gastrointestinal disturbance as other prominent effects, from a proofreader virus that doesn't mutate much, I assume the racial background and human genetics influences the effects and outcomes.

 

Regardless of the virus, it could even be HSV-1, the main recommendations of leafy greens and berries, as well as garlic and wild Asian mushrooms would likely apply.  The more potent compounds probably work by altering immune response, whereas systemic changes (e.g. lysine-to-arginine ratio, or inositol) work by interfering with the virus at some level.

 

Antiviral Agents From Fungi: Diversity, Mechanisms and Potential Applications

Read full article here

 

Here, we have summarized the current knowledge of fungi as producers of antiviral compounds and discuss their potential applications.
 

Conclusion
As fungi are a rich source of bioactive agents, the accumulation of know how on the actual bioactive molecules enriched, and their detailed targets in virus families will probably increase in the near future. Presently, there is a rather limited understanding of the antiviral mechanisms of fungal products on virus infection. Thus, more detailed knowledge on the actual molecular targets is crucial in order to develop these molecules further to efficiently combat virus infections in the future.

 

[SeanQHX1]

Hi Gamesguru! As I've said, I'm not quite sure if it even was a virus at all that caused my illness, I'm only guessing, it could easily have been a bacterial infection or something else entirely. It just seemed like a common cold or mild flu like I was used to getting before, except with an added tiredness and brain fog that I never experienced.

 

My immune system doesn't seem to be compromised and works just the same way it used to when dealing with infections/viruses. Any bug I've caught (which was rare, generally just a cold once per year) has went away within 1-2 weeks by itself and I never had any reason to see a doctor about them. And it's just the same for me now, even with this brain illness I have. And I imagine that if my immune system was compromised, these bugs would likely be more severe, last longer and I would be more prone to catching them, rather than it being the opposite. If it's anything immune related, it could maybe be an autoimmune issue or inflammatory response with my brain's own immune system perhaps.

 

I don't remember ever vomiting from any virus or bug I've had in my life, and especially not the one that caused my illness, so I'm not so sure that looking into viruses that cause vomiting is going to help much when trying to get to the bottom of my condition. I'd say the same thing about viruses that trigger ME/CFS as this illness is not even remotely like mine.

 

I also think my heart symptoms are a result of my brain sending wrong signals to my heart, rather than the heart itself having any problems, I don't think I have myocarditis. If my heart was inflamed, I'd likely have other, chronic heart symptoms like breath shortness and worse chest pain outside of these SVT attacks/bigeminy episodes I get.

 

What concerns me isn't so much the mild bug/virus I had at the very start, but that severe brain fog and tiredness I had along with it, which never went away and has only gotten worse and been leading to further problems as it's been left untreated for years.

Edited by SeanQHX1, 01 April 2020 - 09:23 AM.

[Turnbuckle]

Another possibility is Chronic Fatigue Syndrome (CFS) stemming from viral damage to mitochondria. If so, stimulating mito fission will make the symptoms worse—possibly much worse—and stimulating fusion will alleviate them somewhat. If this turns out to be the case, then it can be treated.

 

You can stimulate fission with nicotinamide, 500 mg to 2 grams.

 

[SeanQHX1]

Another possibility is Chronic Fatigue Syndrome (CFS) stemming from viral damage to mitochondria. If so, stimulating mito fission will make the symptoms worse—possibly much worse—and stimulating fusion will alleviate them somewhat. If this turns out to be the case, then it can be treated.

 

You can stimulate fission with nicotinamide, 500 mg to 2 grams.

 

This would need to be a very different "CFS" from ME/CFS if that would be the case. What you said though is definitelly worth noting.

 

Is taking nicotinamide the only way to stimulate mito fission, or do other things? Since I've spent nearly 4 years steadily deteriorating, no flucuations in symptoms and nothing having any effect despite trying loads of suppliments over the years, I find it hard to imagine anything having any effect now. But I'll consider trying this just to rule it out.
 

[gamesguru]

I also think my heart symptoms are a result of my brain sending wrong signals to my heart, rather than the heart itself having any problems, I don't think I have myocarditis. If my heart was inflamed, I'd likely have other, chronic heart symptoms like breath shortness and worse chest pain outside of these SVT attacks/bigeminy episodes I get.

 

What concerns me isn't so much the mild bug/virus I had at the very start, but that severe brain fog and tiredness I had along with it, which never went away and has only gotten worse and been leading to further problems as it's been left untreated for years.

 

fwiw I don't think many bacteria or fungus are implicated in these type of chronic disease, they generally clear the body without trace.  Whereas viruses only go into "dormancy".  I think a good amount of research will be done here in the next decades, including some surprising links between these obscure viruses and auto-immune diseases.

 

i really doubt brain damage is causing signalling issues to your heart.  More likely a peripheral neuron disease—even if just a harmless NT imbalance—that explains these generalized arrhythmias.  Hypokalemia could be another factor, it's good to get your blood potassium and sodium levels checked along with other common markers every once in a while to see where you stand.

[kurdishfella]

how do i know if you have brain deficiencies? it could just be a health issue i.e immune system which causes overall body to decline including brain and that would be more obvious than say a decline in kidney function. If you have lower neurogenesis then youll lose skills quicker etc things we do that lower neurogenesis could be like sleeping too much. Or drugs all of them are poisons and cause imbalances only very few are useful good safer.