Hi Everyone! This is quite a long read so I do apologise. I'm a 25 year old guy from Scotland and for almost 3 years, I've been experiencing constant, worsening cognitive problems, anhedonia, tiredness, heart rhythm issues and headaches amongst several other symptoms which are destroying my life. I have failed two college courses as a result, am currently unemployed and claim disability benefits. And I have now completely lost failth in the NHS as just about every doctor I've been seeing throught the years will basically trivialise my illness and brush it under the carpet. I worry that as this illness continues to worsen, I won't have any future ahead. I feel like my existence is slowly expiring and that I'll continue to plunge further into a state of total blankness and nothingness, unless I finally manage to diagnose and get treatment for this mystery illness.
Before I had this illness, I had almost no health issues, besides the fact I had Asperger's Syndrome and a some mild IBS symptoms. As a musician, I had a great life making my own music, playing in bands and partying whilst also studying sound engineering at college and looking to start my own audio business. But in June 2016 I was in the process of completing college and decided to go to Download Festival for the weekend, looking to finish the last of my coursework the following week. But the day when I came back to college, I had caught some sort of flu like bug, felt really tired and had this horrible feeling as if all the gears in my brain were jammed up and couldn't think. My mind was blank, I could no longer remember any of my previous sound production knowledge off the top of my head and could not type the remaining paragraphs my graded unit. As a result, I failed the course and all my previous work was for nothing, then soon had to apply for disability benefits (ESA).
The bug/virus I had cleared up within a week, but the tireness and cognitive impairments remained for several months. When I seen a doctor, he quickly named it "Post-Viral Fatigue", sent me for a few blood tests which came back fine and gave me some generic GP advice: "eat healthy","get more exercise" etc. As the months went on, the tiredness and cognitive impairments kept getting worse. And when I went back to my doctor, all I got was the same useless advice once again, then had my diagnosis changed to ME. I soon changed my GP and got refered to a clinic where they tested my blood sugar, thyroid, cortisol, liver and kidney function which all came back normal. Nothing further was done then and doctors would just refer to my illness as "chronic fatigue". As more months went on, my symptoms would continue to worsen and I would start developing terrible headaches and episodes of insomnia. After that I was getting even more symptoms including sudden STV attacks in my heart (just palpitations or anxiety attacks according to doctors) and noticed my emotions began flattening. This anhedonia clearly isn't depression related either and feels more like my brain's ability to process emotions is slowing down alongside my other cognitive functions. A clueless doctor however claimed I had anxiety and prescribed me some beta blockers (propanalol) which gave me even more scary heart symptoms (chest pain, heart twitches, PVCs and bigeminy) for weeks after taking one dose. These heart symptoms soon went away but the PVCs and bigeminy returned months later and have remained since. I also started getting unbearable pains in my head when lying down, making me often have to lie on my face and take co-codamols at night to sleep. I also noticed my field of vision deteriorating, although an eye test showed that I could still see out of my peripheral vision, just that my brain wasn't interpreting or perceiving it correctly. At one point, I suspected that this illness could be Lyme Disease due to the progressing nature of the symptoms but I had a test which also came back negative. I also had a CT scan of my brain which also came back negative. And I have also seen a neurologist who couldn't do anything to help me.
More recently, I've been getting much of the same symptoms, only worse. My emotions are now almost completely flat and my brain is becoming like a really old Windows PC that's super slow, glitchy and barely unusable. And my vision is now so bad that the combined vision of my two eyes is the equivelent of one. My condition also seems to be progressing much faster now and I can feel my symptoms worsening and my mental functions declining as the weeks go on.
To summarise, here's a list of all my current symptoms:
- Cognitive decline (Mainly affecting processing speed, recall/word finding, imagination and creativity - Still declining)
- Anhedonia (Declining emotional responses - NOT related to depression - Still declining)
- Headaches (Constant, all over entire head and are only relieved by taking opioid painkillers)
- Head pains when lying down (Unrelated to headaches)
- Tiredness (Gets noticably worse in the evening - Still worsening)
- Very Low Stamina (Get breathless easily after minimal exercise/activity - still worsening)
- Lower Alcohol Tolerence (Get drunk much more easily - still worsening)
- Insomnia (Often happens in week long episodes)
- Vision Perception Issues ( Laggy vision, flickery/static vision and perceived tunnel vision - Still declining)
- Heart PVCs and Bigeminy (When heartbeat reaches a certain speed during high stress, excitement or activity)
- Heart Palpitations and SVT Attacks
- Chest Pains (Happen at random or during an SVT episode)
- Frequent Thirst and Dryness
- Constant Ringing Ears
- Bloated/Fatty Stomach and Hips (Worsening)
- Muscle Twitches (Happen at random, all over body including heart)
Over the years I've been several diet regimes including keto, gluten free, low manganese and no carbs, all of which done nothing. I've also tried many suppliments and nootropics including B Vitamins, Vitamin D, Magnesium, Iron, CoQ10, Ubiquinol, Acetyl L-Carnitine, Korean and Siberian Ginseng, Ginko Biloba, Bacopa Morrieri, Turmeric, Lion's Mane Mushroom, Citicoline, L-Tyrosine, 5-HTP and MCT Oil (the C8 type) but once again, none of these had any effect on my symptoms. Lastly, I tried taking some freebase NSI-189 but took a bad reaction to it (those heart issues again) and had to stop it after a few days. Might still be worthwhile trying the phosphate instead, although I have my doubts trying any nootropic or suppliment these days.
I've also been researching literally hundreds of health conditions, including ME/CFS, Fibromyalgia, MS, various brain diseases, encephalitis, biotoxin related illnesses, deficiencies, imbalances and so on but can't find any condition with symptoms that quite match mine. I've also been on a few other forums including Phoenix Rising for ME/CFS patients but so far, I seem to be the only person on the planet suffering from this mystery illness. Growth Hormone Deficiency however is quite high on my list of suspected problems and I'm looking to get this tested. The person who posted the thread on this forum "constant-heavy-drunkdruggedsedated-brain-with-dimmed-vision-and-anhedonia" is in a situation is quite similar to mine and is so far the closest to what I've been experiencing, although probably more severe. One big difference though is that I never had any major health issues or injuries before this illness and my condition appears to have been a sudden onset during some sort of cold/flu type bug. So I'm rather stumped with how a seemingly mild viral infection could suddenly give me brain damage overnight and lead to degenerative brain symptoms.
Is there anyone here who has any idea what could possibly be causing these symptoms, experienced issues like this and tried anything that had helped, many thanks!
Edited by SeanQHX1, 29 April 2019 - 05:51 PM.