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Old 02-22-2021, 06:46 PM #1
SeanQHX1 SeanQHX1 is offline
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Default Undiagnosed Viral Brain Illness

Hi everyone!

I'm 26 years old, male and have Asperger's/autism. I've had a seemingly progressive/degenerative illness for 4.5 years now which remains undiagnosed and untreated. It happened suddenly when I caught some sort of virus or infection I caught back in 2016. before that, I had almost no health issues at all and was completely healthy.

My brain symptoms are seriously disabling. I basically don't have much of a life now or any future because of it, since I can no longer work, can't enjoy any activities I could do before. I also have to take codeine all the time to get any kind of relief from the constant onslaught of horrible brain and head symptoms which only keep getting worse regardless of what I try.

I thought I'd post a list of my symptoms below and see what any of you guys think. It's a very long-detailed list though I must warn you. Included are the dates each symptom started and the 3 "stages" of the illness.

1 - Viral (?) / Infectious Onset

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

2 - Progressing Brain / Head Symptoms after Infectious Onset

June 2016 - Sudden Cognitive Deficits and Decline - Sudden onset along with viral symptoms. These cognitive issues closely fit the definition of "bradyphrenia", a term used to describe slowing of thinking and information processing. It mainly affects recall and processing speed, memory isn't so much affected and there's no actual loss of mental faculties. It feels like my brain is having to work increasingly harder to process any thoughts and becomes very easily aggrivated and fatigued (with accompanying head discomfort or pain) when doing any kind of mentally involving tasks even for very short periods of time. Increasingly more aspects of my cogntive functions are being affected the more it worsens, starting with the upmost higher cognitive abilities (e.g. doing difficult college work or exams, computer programming, working in a recording studio), down to the lower ones (e.g. feeling emotions, being able to socialise or have a basic conversation). Noticably worsened and started to impair daily functioning in December 2017 when annhedonia and further cognitive problems set in. Steadily worsening and continuing to decline.

June 2016 - Persistant Feelings of 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 and sluggishness. I wouldn't consider this "fatigue", since it doesn't seem to be related to energy levels and can still do activities for prolonged periods of time without running out of energy or needing to rest. Steadily worsening.

Sep 2016 - Insomnia (Episodes) - Gradual Onset, started off mild before progressing like my other symptoms. 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 - Headaches / Head Pains - Gradual onset. Various pains around the entire head, particularly at the skull areas. NOT actual headaches such as migraine, tension or cluster (never experienced these) and are likely to be of a different cause related to my condition. Pains seems to mainly be around the scalp area, directly underneath the skull. Becoming more frequent and worsening.

Sep 2017 - Vision Issues - Gradual Onset. A sense of peripheral vision loss or tunnel vision, most likely due to brain disfunction. I'm generally oblivious to what I'm seeing (or "zone out" visually) unless consciously thinking about what's in my view. No apparent 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 can only be resolved (may be better or worse) by a night's sleep. Symptoms of this continue to worsen.

3 - Symptoms In Other Parts of Body and Further Progression of Brain Symptoms

Dec 2017 - Supraventricular Tachycardia (SVT) Attacks - Sudden onset and first episode. 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 160-200 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 sense of anhedonia and apathy as it worsens. Not related to depression (never suffered from this) and seems to a further extension of my other cognitive deficits. 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. General level of consciousness and awareness feels like it's decreasing slightly the more these sympoms worsen. and Steadily worsening and continuing to decline.

March 2018 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. This doesn't appear to be the result of any changes to my diet and is unaffected by any food or suppliments I take. Still worsening and gradually growing in size as time progresses.

March 2018 - Heart Arrhythmias, PVCs and Bigeminy Episodes - Various Heart arrhythmias which first began suddenly after taking propranolol (a single daily dose). This includes random one-off PVCs, as well as short episodes of bigeminy triggered by exertion. 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, radiating 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 - Severe Head Pain when Lying Down - Rapid onset, happened soon after the heart arrhythmias and chest pains. A strange, severe pain which quickly builds up when any kind of pressure is applied to any area of the head where the brain is located, or on the opposite side of the head to where the pressure is. Resting my head on a pillow for example will cause this pain on the opposite side to where the pillow is (and feels like the brain is pressing against the opposite side of the skull). This pain instantly disappears when my head is lifted and pressure is relieved. Wearing items on my head, such as a hat or headphones can also cause this pain. Pressure on my upper spine area (sitting with my back against a chair for example) will cause a dull headache that quickly worsens, then disappears when the pressure is relieved. Allowing this pain to build up too much will cause a excruciating 'stab' of pain (a sharp prickly pain in the center of the affected area), followed by sudden loud ringing in ears, light dizzyness and a burning sensation that spreads from the affected area downwards. Episodes of this lasting several weeks can happen, accompanied by the later symptoms unpleasent head episodes and further head pains, before subsiding back to it's regular state.

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. Is noticably worse, with very loud ringing coming and going abruptly and quickly during the unpleasent head episodes and exacerbated symptoms.

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. All symptoms noticable worsen during these episodes, along with acompanying head pains, drastically impairing daily functioning. Later episodes of this have been causing noticable (at times, sudden) weakness in muscles and increased difficulty talking. Taking codeine seems to help block out the unpleasent feelings with these episodes and make them more tolerable. Happens in week long episodes generally twice each month.

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 noticable feelings of increased pressure in the head (feels like the brain is swelling up and pressing against the skull).

March 2019 - Exertional Breathlessness - Getting out of breath very easily, with accompanying heart palpitations, when doing any kind of physical activity. This can include climbing stairs, vacuuming or lifting fairly heavy objects. Steadily 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. In some cases, it may alternate from one day to the next. Unpleasent head sensations can often acompany this type of insomnia, making sleeping very uncomfortable and difficult. Has since then progressed to severe insomnia episodes as of December 2019.

July 2019 - Brief Loss of Balance - A sudden, brief loss of balance which can occur at random for no apparent reason. This is possibly related to increased weakness in leg muscles and motor skill issues starting to set in. Happens occasionally, generally once per week.

July 2019 - Problems with Motor Skills - Increasing problems with motor skills, leading to noticable weakness, clumsiness and poor coordination, especially with hands. Writing with a pen or trying to hold a camera steady for example is now very difficult because of this. Steadily worsening.

Oct 2019 - Rapid Weight Loss and Muscle Waste - Rapid onset. Progressive fat loss and possible muscle waste all over the body, despite getting all the correct nutrition and no changes in diet. Legs especially are becoming worryingly thinner, with the knee bones, ligaments and tendons noticably protruding out of them. This weight loss excludes the abdomen which remains heavily bloated and distended. Steadily worsening.

Dec 2019 - Severe Insomnia Episodes - The insomnia has now further progressed to a state where it is now intermittent in regards to staying asleep as well as falling asleep. This can happen in prolonged episodes and often 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 will make the cognitive impairments and tiredness noticeably worsen.

Nov 2020 - New Symptoms during Head Episodes - During an unpleasent head episode and exacerbation of symptoms, some noticable new symptoms have appeared. This include sudden weakness in arms and a stiff neck that comes and goes abruptly, with accompanying pains at the back of the head. Likely becoming worse with each episode.

Jan 2021 - Head Pain when Coughing and Straining - During more recent unpleasent head episodes and exacerbations of symptoms, actions such as coughing and swallowing can cause sudden, short lived pains in my head. This is a dull pain felt in the middle of the head. Using the toilet (defecating) is particularly painful with this symptom.
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Old 02-22-2021, 08:05 PM #2
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Hi Sean, welcome to NeuroTalk.
I'm a parent of two young adults on the spectrum. Both had some extremely complex health issues when they were younger involving infections and viruses.

I have a few questions if that's OK?
  • Original illness - No. 1. Did you have any blood tests or visit a doctor at that time?

  • Ever diagnosed with a "Strep" infection? Specifically GABHS - group A beta-hemolytic Streptococcus or Rheumatic Fever even as a child?

  • What tests have you had over the past few years? e.g. Blood Tests? EEG? ECG? LP? Scans etc.?

  • Who prescribes the Codeine and the Propranolol for you? Do you have any specialists involved in your care or do you see a general practitioner/primary care doctor only?

  • Is the Propranolol prescribed for high blood pressure or for anxiety or something else. What dose? e.g. 40mg per day or 10mg per day? Did your Doctor say why you need to take this medication just once per day?

  • Has your Doctor ever talked to you about a condition sometimes called "Post Viral Syndrome"?
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Old 02-22-2021, 08:50 PM #3
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Hi Sean

Welcome to the community .

I am sorry to read about was you have experienced.

You can use the Search option here (https://www.neurotalk.org/search.php) which will let you search for topics and threads here which could help you.

Best wishes.
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Old 02-23-2021, 08:42 AM #4
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Hi Lara. Glad to hear back from a parent of young people on the spectrum with previous viral/infectious related health issues. I'll answer your questions as best as I can here.

Original Illness - The original illness at the start was a sudden onset of flu-like symptoms. I previously never went see doctors about any common cold or flu bug that had during my lifetime, since they always cleared up quickly on their own without any problems. I thought this virus/infection was no different from this so I never thought to see a doctor. I wish I had known better though, since the severe brain fog and mental deficits that came with it (which made me fail a college course I was days from completing) was something I never experienced. However at the time, I thought this was just a symptom of the virus/infection and would go away once it resolved itself. But after this tiredness and "brain fog" lingered for 3 months after the flu symptoms resolved itself, I then seen a doctor. I got one bloot test at this time just to check my blood sugar which was fine of course.

Strep Infection - No, I was never diagnosed with a strep infection as a child and didn't have any previous infection as a child that I seen a doctor for.

Tests - I've had all the routine blood tests the NHS do several times, including tests for Coeliac and Lyme disease, all of which have showed up normal/negative. I also had a CT scan of my brain where nothing showed up abnormal.

Medications - My current GP prescribes a low dose (8/500mg) of co-codamol. This is almost ineffective now and I regularly buy stronger 12/500mg tablets from chemists since this is the highest dose I can get legally. The propranolol was also prescribed by a GP.

Propranolol - A GP prescribed me propranolol once, after claiming my illness was anxiety. The doctor was very insistent on giving me antidepressants which I didn't want because of the side effects, so I was given these to try on a 10mg dose, being told they were safe and had no effects. However, after just one dose, I took a severe reaction to them. I had symptoms which lasted several months after this, including heart spasms, various arrhythmias which appeared out the blue, tremors and shakes. After the symptoms resolved themself, some of the heart arrhythmias (SVT attacks, bigeminy) came back and are now perminent symptoms with my illness. I also started to get noticable symptoms of intracranial hypertension or increased intracranial pressure (severe pain in head when lying down, worse headaches at night) during this time.

Post-Viral Syndrome - The first GP I seen about this illness (3 months after the initial virus onset) almost instantly "diagnosed" me with Post-Viral Fatigue during my first appointment, without ruling anything out with tests, then said it was ME/CFS several months later. The doctor was reluctant to do any testing, saying that it will "probably be negative anyway" and kept saying "there's no cure" repeatedly. I reckon if I had seen a better doctor at the time, this illness could have been addressed earlier on before it had gotten to this stage. Now the doctors are stumped with my endless growing list of symptoms and don't know what to do.
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Old 02-23-2021, 03:46 PM #5
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Hi again Sean,
Please go easily with the Co-codamol. It's not so much the dose of the codeine, which isn't too high yet, but it's the paracetemol. Depending on how much you're taking, those 500mg of paracetemol can quickly add up and cause problems, especially on the liver. Plus if taking it for headaches all the time, people can actually get rebound headache when it stops.

It's a shame the Propranolol caused such a severe reaction. I have read that it can do that in rare instances. It can be a very helpful medication with few side effects for most people. I am prescribed Propranolol for social anxiety on a prn "when needed" basis. My daughter as well although hers was prescribed originally when she was having classes at uni where she needed to speak in front of everyone.

Are you still studying or working at all?

It's difficult when doctors can't name an illness and just take it all away. You have so many symptoms and it must be very difficult for you. I personally wouldn't give up on the ME/CFS route though, but that's just because I've seen what my daughter has gone though and still struggles with it all to this day.

There may be no specific "cure" for these syndromes (PVS or ME/CFS) IF that's what is going on, but there certainly are ways that doctors can help. If for some reason along the way a doctor suggests CBT, then that's actually a good thing. Well, it certainly helped my daughter a lot to get moving again.

Don't give up on study even if you just do one course and that's online. You're obviously smart and it would be a shame to stop everything as hard as that might seem right now.

Rest when you need rest. Get help with your sleeping problems. I see that's addressed in the CFS information and it's a big issue to start with as that restless sleep pattern is very unhelpful.

bacme.info |
British Association for CFS/ME

PDF-BACME working group on severely affected
Quote:
in people who are severely affected, we recommend testing for Vitamin D due to poor sun exposure, and B12, Folate, Ferritin levels if the patient has eating difficulties or poor nutition
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Old 02-23-2021, 09:10 PM #6
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Hi Lara again,

Yep, I do worry about taking co-codamol all the time daily, with the amount of paracetamol I'm taking. Paracetamol or any regular painkiller has no effect at all on my symptoms, so I'm taking it needlessly for the sake of the codeine. I haven't yet experienced a rebound headache so far and hopefully I never do. I take codeine mostly to relieve the horrible head symptoms I get from feeling constantly sick all the time, more so than for actual pain relief.

I will never take propranolol again after the scary side effects I experienced, however I'm glad to hear that it's been working well for your daughter and yourself.

No, I do not work or study at all now and currenly claim disability benefits. I also live with my parients. I was doing a college course in sound engineering and was less than a week away from passing my course. Then one morning, I walked into college into college, felt some sort of cold or flu coming on, and suddenly couldn't do the work I had to finish off. My mind was completely blank and my brain would just hurt and strain itself whenever I tryed to think at all. That was basically the start of this nightmare and since then it has only gotten worse as time goes on.

For a good while at the start of my illness, I was managing to power though my illness and still live my life somewhat, being determined that I was going to beat this illness and not let it stop me. I did another, easier college course, but as I futher deteriorated, I had to give that up too. I was also taking driving lessions which I soon had to give up, with me almost crashing the car on my last lesson. After this, I spend a lot of time playing in bands, since my musical abilities weren't affected at the time. But found myself having to give this up too with my worsening health. There's only so far you can go powering though like this untill your deteriorating health finally catches up and you just succumb to your ill health.

There is no point in thinking about any more study just now. This illness has made a complete mess of my brain and can barely function now. Even basic activities are becoming more of a struggle the worse this gets. I used to be smart and had many unique skills that could have been put to good use in a future career as a session musician (I play keyboards), music producer and composer. I had plans to start my own musical project too and already have about 2 albums worth of finished recorded material which I had put loads of work into. Potentially, I could perhaps regain these abilities I once had if I address the cause of my illness and manage to find some way of treating or alleviating it.

I am almost positive that my condition isn't anything along the lines of PVFS, ME or CFS. I was on a forum for people with ME/CFS for a while, but no one there could give me any helpful advice, since my symptoms arn't remotely like these conditions. And the people on the forum don't think that it's ME/CFS. These are generally fluctuating conditions, generally cause a lot of physical complains (rather than mostly brain symptoms) and a hallmark symptom is flair-ups (called Post Exertional Malaise, PEM) often trigged by over-exertion or any kind of intollerences or sensitivities the person with the condition may have. There are generally some ways of managing the symptoms with these conditions, such as avoiding certain foods that trigger the symptoms, or taking suppliments that help symptoms improve.

My current situation is almost a contradiction of ME/CFS. Nothing I've tried in terms of diet, exercise, suppliments, medications or any kind of lifestyle changes has had any effect on any of my symptoms. My symptoms are immune to everything and just gradually get worse with time, almost like some sort of degenerative condition. The speed of the progression isn't affected by anything either. At least with ME, you can tell that something is temporarily holding you in that state and appears to be reversable somehow, or can be managed somewhat. My illness on the other hand just seems to be a permenant degradation which is much more worrying. I just hope I'm able to find some answers soon.
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Old 02-24-2021, 11:03 PM #7
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Hi Sean,
Well, I sure hope you're able to find some help for your symptoms soon.

It may be time to get a second opinion from a different doctor if that's possible.

Hopefully some other members here might have some suggestions for you.
All the best to you.
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Old 02-25-2021, 06:34 AM #8
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Thanks Lara, hopefully some point this year I'll finally make some progress with diagnosis and treatment.

I am currently waiting on word to see a neuroimmunologist who will hopefully manage to find some answers.
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