Please help, severe head pain, dizzy, lethargic, woozy, forgetfulness, impaired 24/7

I’m a 29 year old female with a tracheostomy due to a damaged airway following a prolonged intubation back in 2013 but otherwise healthy, well I was.

Since December last year I’ve had a severe headache, I call it head pain as I’ve had a headache when younger and it’s nothing like that. It never goes away but does change in severity sometimes. I have severe brain fog, I’m extremely lethargic and woozy, I call it drunk but in a horrible way. I constantly have to blink to keep my eyes open, I feel like I have to fight with my body everyday to keep my eyes open. But when I close them I can feel my eyeballs darting around inside my eyelids. I get a floating in the air sensation but not in a nice way. Can’t feel my body but can and unable to move. I stumble on words during sentences and I have trouble thinking of what I want to say. My head feels like it’s going to explode, the pressure and pain is intense. It feels like someone is pumping my head up with a ball pump.  With my tracheostomy I have to cough to clear it and doing that increases my head pain and leaves me extremely dizzy.  Everything I just said is the way I live everyday but I also have episodes that only last for half an hour or so where I’m almost incoherent, my eyes go hooded and I have to lie down or I feel like I will collapse, I get involuntary muscle jerks, my hands lock shut in a position, I’m barely able to talk and it feels like everything slows down like my breathing rate. 

Ive had a brain MRI that showed nothing and I’ve seen a neurologist who unfortunately wasn’t helpful at all but in fact terribly disappointing. He specialised in MS so cleared me of that type of neurological disorder. I’m booked in for a full spine MRI scan plus a brain EEG scan in 2 weeks. I’m terrified, I no my own body and I can feel something is horribly wrong but struggling to find help. A head/brain isn’t meant to hurt like this for this long and living with my vision impaired all the time isn’t sustainable. Could this be a blood flow issue to my brain? Does anyone have any advice  

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