Steadily Progressing Brain Symptoms for 3 Years

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Hi everyone! I'm a 25 year old guy from the UK and for just 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 (the brain fog in particular) 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 seem to think it's "CFS" or "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 at all on any of my symptoms. Although in some milder cases of insomnia, melatonin has helped, but that's it.

Here's a timeline of my symptoms so far in the order they appeared and progressed, it's quite a long list so I do apologise in advance:

June 2016 - Mild cold/flu symptoms - Symptoms similar to that of a cold, flu or similar viral infections. Subsided and 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. Socialising and having conversations (especially with more than one person) is extremely difficult due to my brain being too slow to respond or to think up answers to questions. Brain also seems to become easily aggrivated and fatigued very quickly (with acompanying headaches) when thinking or doing any kind of mentally involving tasks even for short periods of time. By far the most debilitating symptom. 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 and chronic ringing in ears for unexplained reasons, without any exposure to loud sounds.

August 2018 - Unpleasant Head Sensation with Brain Fog - An extremely unpleasant, aggravating feeling in the head that is somewhat comparable to a bad head cold or hangover. Is accompanied 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 physical 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? Many Thanks!

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10 Replies

  • Posted

    The obvious question to someone who attended a festival is did you do any drugs there ?

    The second is were you ever prescribed Cipro or Fluoroquinolones for any infection ?

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    • Posted

      Hi derek76. I should probably have mentioned this in my post but no, I did not take any drugs at the festival and have never done any drugs at any point in my life. I was drinking alcohol at the festival though so that could be something worth taking into account.

      Answer to second question, no I have never been prescribed ciprofloxacin or fluroquinolones for any infection, in fact any virus or bug I've ever had in my lifetime has cleared up on it's own without me seeing any doctors. Interesting you mention this though as a few people have suggested that my symptoms sound like fluroquinolone toxicity.

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  • Posted

    I know you say it's not Cfs, but Cfs is also M.E which is myalgic encephalomyelitis. by definition is it a systemic neuro immune disease . affecting cognitive function Is a major part of that. it usually follows a virus. and has a wide spectrum of symptoms, with much of what you've mentioned being part of it. now I'm not saying it is M.E but dont rule it out. a lot of people think M.E is just chronic fatigue. and it's not. I would be focusing on getting a brain MRI, to be sure nothing else is going on and then reducing inflammation in your body, through diet, supplements, cbd oil etc.

    I have lupus and similar symptoms to you, including heart issues, a fib for me, and twitches which progressed to a pretty nasty tremor. and was diagnosed with dystonia, I'm not 100% convinced on that front. but CBd oil helps a lot, especially for sleep, as does mindfulness, and exercise as much as I can.

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    • Posted

      What time of day do you take your CBD oil and do you just put it under your tongue ?

      Some people add it to various drinks but I don't believe in diluting things.

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    • Posted

      I take it mostly at night, under my tongue. if I'm using paste I add it to some chocolate and put it on my gum, as adding fat helps absorption. I take it morning if I wake up in a great deal of pain or with bad tremors. I wouldn't dilute it. just make sure to do some reading and choose a good quality one. i dont know where you are, I use the original alternative, its come out well in many independent tests.

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  • Posted

    It certainly sounds like ME, but I think it would be worth your while researching food intolerances. If you Google "Deliciously Ella" it will lead you to the story of someone who had very similar experiences. She was bedridden after a virus in similar circumstances. Eventually, she managed to research food issues and slowly developed her own alternative diet and basically ate herself well again. she has produced some books with recipes and guidelines around what some people call 'clean eating '. James

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    • Posted

      Hi James. Sorry but I'm not convinced this is ME, I have done loads of research on this condition over the past 3 years and have also been on Pheonix Rising forum a lot taking to many people with it. I've never been bedridden and have barely any physical complaints or any mobility issues, my illness is primarily affecting my brain, so this story is not a similar experience to mine. I don't appear to have any food intolerances either, nothing I've tried diet, suppliment or medication wise has had any effect at all on any of my symptoms, they just steadily get worse as time goes on. I've tried diets like keto, gluten free and no carbs but it done no good either and felt like a waste of time for me. And personally, if someone apparently had ME/CFS and fully recovered just by changing their diet and "eating themself well again", then I doubt they actually had this condition at all and it was probably something else that was treatable/curable like Lyme disease for example.

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  • Posted

    Hi Sean, I’ve been going through something very similar the last 3 years and my life is completely different from what it was. I’ve never read anyone’s symptoms who relate to mine as much as yours. I made a post 8 weeks ago on here about my neurological disorder you should have a look although since then I’ve been experiencing more symptoms since then such as arm and leg weakness and sometimes random pain as if I’ve been working out although I’ve not. A lot of your symptoms sound very similar to mine especially the constant brain fog pressure that builds up or hurts when pressed against a pillow or rested at all(in my case). I got a private mri done last month on my brain and spine which came back completely normal. They did say however something about c5 c6 but didn’t see it as an issue. Have you got any neck issues? As I’ve been deteriorating from this I’ve developed neck crepitus which came with the tinitus.

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    • Posted

      Hi. Sorry to hear you've been experiencing symptoms somewhat similar to mine. Yep, that pain that builds up when trying to rest your head down is horrible. When it was at it's worst, I had to rest on my cheek when trying to sleep as the pain would even travel to the opposite side I was resting my head on. Lying on an area of my face that was in alignment with another area of my face (my face being a 'non-pain zone') was the only way to stop the pain/pressure being directed towards a 'pain zone'. Thankfully though it's not anywhere near as bad as that now, although I still lay on a pile of soft folded up scarfs to prop my brain areas away from my pillow.

      Also, regarding muscle weakness, I don't have any major complaints here although I find that when I lift heavy objects my strength and stamina seem to be very low and I quickly become breathless, almost like you would if you had an iron deficiency, although I recover pretty quickly afterwards.

      Your neck issues though seem like a different symptom from what I've got though and I haven't had any of issues with my neck. The crepitus you speak of sounds strange, although maybe that could be the result of resting your head in awkward positions when laying down perhaps. I do hope you manage to somewhat at least get to the bottom of these symptoms and find some way of treating/curing them, after all there is nothing worse than your health deteriorating like this and not even knowing what you're dealing with . Anyway, best of luck to you!

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