I'm new to this forum as I've suffered something that no one has been able to help me with and I've been left feeling very poorly with cognitive problems and in pain along with a whole host of things and I was looking for some help and advice,
I'm a 33 year old male married with 2 young children, back in Feb 2013 one evening I experienced I large tremor it felt it started in my head down my spine and knocked me to my knees, I felt what I can only imagine was a snap or click in my head also it all happened as quick as a click of the fingers,
As the click happened my perception altered and so did my cognition -
I was with my wife and two children aged 6 & 2 at the time - I lost what felt was facial recognition of them and where I was so I began to panic.
I went bed thinking it was sleep deprivation, it's only dawned on me recently (due to poor cognition) that night I lost the ability to think "I need to call a Ambulance" type thinking, it's horrendous.
The next morning I woke up feeling very bad I struggled to dress myself, everything felt cognitively harder even tying my shoe laces, it felt as though my brain had gone from automatic to shut down to manual. Everything was painful and hard to complete even a basic conversation or task was and still is painful and hard. It's been 4 years nearly and 24:7 I'm stuck in pain struggling cognitively and altered perception from the night that all happened.
I suffer nerve pains, severe head pains that get worse when doing basic cognitive tasks - the longer I go the worse I become, I experience loss of speech or slur my words from what feels like intense pressure in my head from what I can only explain is me trying to function and use a part of the brain I feel is damaged or not responding and it hurts. At the same time it makes my perception more inwards like a deep tunnel vision, it feels like all the back of my head is dead and painful to use, visualising is painful trying to try to visualise a persons face or a place ect, it causes tremors down my spine.
I suffer alot of tremor trying to Manually think in a way I use to automsyically be able to think, because I don't no more I try to and it hurts - i can feel pressure pushing on my head as though I'm forcing to try to use a part of my brain again isn't functioning.
I now also have to use a breathing machine at night as I have have a constant head pain and pressure in the back of my head that alters my autonomic breathing when I drift off, I now start to jerk, my left leg twitches and I instantly stop breathing.
Roughly a week after that tremor I experienced a serve amount of pain one evening all over the top of my head and the back - it was so bad I fell to my knees and screamed for 20 minutes solid! I am 6ft 20st, I can only describe the pain like blood was being drained out of my brain or someone was ripping my soul out through my head, it was horrendous, I got nerve pains for months after that that would come in intense short 15-20 minute periods that effected my breathing and physical ability to stand and walk and talk or move my legs, I would also have strange dull feelings in my head that left me disoriented and confused. I thought these could of been TIAs I'm not sure.
Baring in mind I was experiencing all this why still feeling very bad with my cogbtion and perception.
I had to leave my job, we lost our home as my wife had to care for me so she left her job,
I suffer alot of different problems physically but the worst is my alteration in perception, processing, thinking, being aware, all these cogbtihr issues.
I have had MRI brain scans but this shown no structural damage,
I had a brain spect scan that shown reduced perfusion in parietal, temporal lobes I think also occipital not sure on that, I'm being told this scan is pointless...yet it shows these reductions, any advice would be a massive help as I say my cognition isn't the best to work things out, it's the "working things out" that is physically painful and hard for me it can trigger bodily problems and motor function problems ad well as a drop in cofbgive ability even worse and vision and spacial awareness ect.
I'm being told I haven't had a stoke - yet the problems and things I experienced are not nomal and the way I've been left isn't right surely,
Can anyone possibly help me? I struggle to think for myself it's just not there no more I have to be prompted to eat and drink that's how my cogntion has altered - I don't think about people or places I use to be aware of, I'm in head pain 24/7 and as well as feeling cognitive and perception declined and in pain when trying to try I struggle on a hourly basis to feel the way I've been left and no answers to what or why.
Thank you so much in advance I've probably missed some obvious detail out.
The main issue for me is work - I use to be a gas engineer I'm not lucky if I wake in the morning aware this even exists without being prompted, it's frustrating as I can be like this with my own children when not with them.
I need help to figure this out and what tests can I ask for from my GP or hospital,