Afraid to fall asleep: POTS and other issues

Posted by misschaitea @misschaitea, 5 days ago

I have POTs and there’s a strong possibility I have Multiple Sclerosis also, my body and the doctors have yet to shake on that still.

But I’m really struggling with symptoms and it’s one of those things that just comes and goes. But terrifying all the same. This started out on the 19th; the 20th was my birthday and on the 19th my Mom and I went to the antique store and then lunch and came home around 4:00. I came up to my room and took my meds around 7:00. At 7:30 I instantly got the worlds most earsplitting headache, then nausea that almost sent me into my bathroom, except that I couldn’t move. 7:45 it was gone. No meds no vomiting out as quickly as it came.

Friday I slept in the afternoon for about 2 hours. I’ve been really struggling with fatigue lately and family was coming for dinner. At 9:30pm I had meds and went to bed. This is the terrifying bit and it’s done this before starting in 2019 and every 4 months or so since.

As I fall asleep my ears close up, like they do when you yawn. My ears close up and I start to feel like I am vibrating and being electrocuted. I’m convulsing, eyes closed trying to scream for my Mom but she never hears me. With my eyes closed I see sparks in the corner of my vision. It causes me to wake up and then fall asleep again repeating the process over and over again. Until eventually I just fall asleep.

Tonight I’m terrified that it will happen again. I don’t want to do it again. I know I have no choice otherwise. Please tell me this is a thing. Please tell me there’s a name.
I promise with everything in me it is not anxiety. This is really really physical in all forms.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

I am not a doctor, psychologist or anything else. I have been in a coma and wondered where I am and why am I in this white room with people in dressing gowns. At 77 years old, 72 years after my first experience, there are still unknowns. How this relates to you is this. Fear is the most debilitating thing of all. Hopefully you will know what is causing what is happening soon. Doctors don't know everythig and yours may be brillient in everything except some obscure thing happening to you. There are millions of information sites on the internet. I spend 2 or 3 hours a day learning and thinking. In the meantime you might try meditation to have something in your mind besides fear. Fear accelerates negative reactions and thoughts. Any attempt to defeat fear may also relax some other negative or unexplained reactions. Simply saying a meaningless word such as "ah-oom" or "ha-ring" or a simple sentence such as "I am at peace". "I am conquering my fears" can help. just keep repeating them. I am still not perfect but I am at peace. I hope you can reach a point where you are "a work in progress" and not in fear, just curiosity, and at peace with where you are. God Bless.

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I have never heard of your situation exactly but I have some weird condition also to do with my ears. I have tinnitus which first of all gives loud noises from my brain that I hear in my ears. Rumbling noises, constant repetition of notes or musical bits, cricket and cicada noise and low booming sounds. This goes on night and day 24 hrs a day. I am sometimes afraid to rest or have a short sleep because when my brain wakes up the noise seems ear splitting for a couple of hours before it tones down a bit. I also have exploding head syndrome. This is when some violent noise wakes you out of your sleep but there is really no noise in the room. I am often afraid of what might happen to me with regards to this tinnitus. This is because there is no cure or any medication to treat this condition. In your case studies by a neurologist at a university hospital might give you some answers. I stress that it is important that the medical investigation that you get is conducted in a reputable university affiliated institution. Providing your condition doesn’t correct itself, which it might do. How long have you had your present condition and what age are you?

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Welcome, @misschaitea. I hope you saw the helpful replies from @willows and @1died2x. I can imagine you are afraid to sleep given these experiences.
I'm tagging other members who have POTS and similar syndromes to offer their coping mechanisms and tips.

You may also be interested in this related discussion:
– Body vibrations when falling asleep or waking? https://connect.mayoclinic.org/discussion/body-vibrations/

It sounds like you and mom live together. Might it be possible to figure out a way that you can alert her when you are in distress but can't call out for her?

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@colleenyoung

Welcome, @misschaitea. I hope you saw the helpful replies from @willows and @1died2x. I can imagine you are afraid to sleep given these experiences.
I'm tagging other members who have POTS and similar syndromes to offer their coping mechanisms and tips.

You may also be interested in this related discussion:
– Body vibrations when falling asleep or waking? https://connect.mayoclinic.org/discussion/body-vibrations/

It sounds like you and mom live together. Might it be possible to figure out a way that you can alert her when you are in distress but can't call out for her?

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try an allergist ,is thorough , good rerutation , good reviews, and most important someone who will listen and or give you a reference to see someone but check them out first. maybe a naturalopathy they can get some blood work done . keep trying and praying

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