3 years after that one weekend my symptoms persist. Things have improved and stabilized but I'm still in a bad shape. I left this forum because I frankly got tired of the attitudes blaming anxiety or whatever and because it felt useless, and there were some clueless posters. It still feels useless, but because I'm bored I thought I'd share this. I'm in much better shape in the way that I was bedridden and housebound for a few years but now I can go out and function somewhat. But I can't live any kind of normal life any longer. I'm currently seeing a neurologist but so far no diagnosis and I'm wondering if there will ever be.
I'm not sure if I remember all the symptoms I had in the worst period when I was posting, I might miss some.
What has gone:
Anxiety/agitation seems to be gone, or at least on a level that is pretty close to my normal baseline, and it's not visible outside. There is still some kind of slightly amped up feeling. It's not really anxiety, it's more like being hyper or stimulated. Similar to drinking a cup of coffee or an energy drink. It makes my concentration worse, but it doesn't show outwards like it did in the beginning.
Trembling, tremors, shaky voice
Severe nausea. It's very rare that I feel a bit ill on my worst days but it's mostly gone
Sensitivity to sounds is gone
Sensitivity to stimulation overall is mostly gone. Before I had to be in a dark room most of the time. Now I can be out and about in public.
What has improved:
Tinnitus. There is still a white noise type sound but it's less. 50%?
Sensitivity to light. I used to get bad after images but it's not as bad. My eyes are still sensitive though and spending a lot of time on the pc makes it feel like there's a huge pressure building behind my eyes. If I continue it starts to hurt and can take a long time to calm down.
Dizziness. I used to feel so out of it I had to lay down and listen to audiobooks for days in a confused daze. It was a weird time, I hardly knew where one day ended and the next began. I still feel a bit off but it's better.
Pressure behind eyes. It's there, but less. Maybe 50%.
Fatigue. I still get exhausted way more than before but I felt like I was a 100 years old then. It still sucks though.
What is the same:
I can't focus my eyes on one spot. They still keep slightly dancing around the point I'm trying to look at. It's like a REM movement that happens eyes open. This actually belongs probably to the 'improved' category because it might be less. It's just one of the more debilitating symptoms so it still feels horrible. It really makes you feel nutty when your eyes are spinning like that, it's a really distracting thing.
Eletrical buzzing behind my left eye and down my neck and the involuntary body jerks it causes. This is one of the more outwardly visible ones. There is a constant buzzing tingling sensation that builds up and roughly once every second it peaks and causes my head to shake quickly from side to side and and my left arm will fly up from the shoulder, sometimes my fingers flex and my left leg kicks. This only happens on my left side. The right side of my body works fine.
This is dampened by activity like moving and increase at rest. I'm constantly having these involuntary jerks while awake. It's like getting a low volt tazer in the neck constantly.
Vision; In daylight it still looks like I'm looking through a black sheet, but this was and is a very mild thing. I have floaters also, same as in the beginning. The more noticeable issue is how in dark or dim light my vision has a lot of static and twisting forms. Clear surfaces like clear black have the classic grainy hppd static.
I haven't tried to do anaerobic exercise lately. Last time was over a year ago and back then it made me extremely dizzy and out of it and like the ground was shaking. Back then I was in a worse shape though so I might give it a go. I can still do cardio.
Overall everything is still absolutely shit and my life sucks
. I guess it's nice that I can do things like see friends, well at least before the lockdown, and even had a beer a couple of times. I did pay for that with some extra symptoms the next day but oh well. Things like these were totally out of the question for the first 2 years.. I wouldn't have dared to put anything inside me I was in such a horror state of being. Now it's still crappy dysfunctional but not extreme like that.
