Paresthesia Internal Vibrations Moyclonic Jerks Help!
Hi. I'm desperate for some advice since I feel like I might die next time I fall asleep. Have only had some tingling in legs and seat area when having stomach pain and eating Prilosec for last couple of years. This fall I got pain that I thought was esophagus and ate Nexium 40mg for 35 days. Pain did not go away and one day I got like and electrical current between shoulder blades and suddenly my whole back started tingling. It spread up my spine and neck, behind my nose. Then I got tingling in my tongue, and lips. Next couple of days it spread to my cheeks and up to my eyebrows and front side of my body. (The back side was affected from day1) . I could not eat without terrible nausea but no vomiting.
Had extreme shortness of breath and had to lay down. When trying to sleep the horror began. As soon as I slipped into sleep I would get a dark wave of buzzing in my head and I would wake up with pulsating tingling in both neck muscles and spine, and behind my nose.
My sinuses felt like the had pressure and my gums were tingling. This was paired with total body tingling and internal vibrations in abdomen. Next days I woke up with my lips visibly trembling or my tounge visibly trembling or my jaw would spasm and my neck would jerk. Then came back jerks. Jerking head sideways or jerking back. Right hand trembling when gripping something. Right leg won't quite follow. I have been inside a living nightmare since December 2022. I've been to 2 primary docs. Didn't jerk then
and they did not take me seriously. Went to ER while jerking. They did ct without contrast only found age related vascular changes nothing else (I'm 60). Paid for mri abdomen and brain out of pocket since docs did not take me seriously. They found nothing to explain seizures.
Been trying to find a neurologist before I die but it's impossible in Sweden without referral. I've not been up more than 20 min at a time for 8 weeks.Also heart flutters and pulse is 100 or more when up) Shortness of breath got better last 3 days but every single time I fall asleep my condition deteriorates. First my lips tingle then I jerk head, back or legs . Then various myscle twitches everywhere and in face. If I manage to fall asleep I wake up with entire body tingling burning intensively including face. Horrible pressure on upper arms and thighs like they were constricted. Sweating, face flushing.
I hurry up and measure oxigen it's 96 percent. I've had no loss of skin sensation, no loss of reflexes or muscle strength so far except my hand and face twitch when tensing muscles. A heavy feeling in the back of my head like a lump and pressure behind sinuses. Pain if I press the area between nose and forehead. No congestion but intense ringing in ears. If I turn head side to side quickly it's like a dull sound, pressure and things get a lot worse. Constant body tingling and internal vibrations but when I sleep it gets so intense and burning it's like someone has taken a belt and cut off bloodsupply to upper arms, thighs and face while the rest of the body has tingling.
My lips tremble when chewing.
My whole chest vibrates when I speak and I get nauseated.
So my brain shuts down somehow when I sleep and Im so terribly afraid of these seizures and paresthesias. It started like guillain Barre or tranverse myelitis but since I have no weekness and no loss of reflexes and crp is 5 so no inflammation markers that doesn't match either. I can't have brain or spinal inflammation can I? even though that's what it feels like since I have this preaussure in my head. Or vascultis that attacks sinuses but crp is normal. Please does anybody know what kind of brain injury gets worse when you sleep. I've just layed here for 9 weeks trying to get help but Healthcare system is terrible in Sweden and I can't access a neorogist. I'm just laying here waiting to either die or get bad enough that it shows to ambulance staff. Ive called 3 times since December they have refused to take me in and when a neighbor took me to ER while jerking they still sent me home after ct scan. I can't get them to understand that the damage happens when I sleep and I honestly think I will die soon if I don't get help. It's getting harder to come back to consciousness after sleeping.