So glad to hear that Medicaid has accepted you. I hope you can
receive the care and meds you need, now.

I used to wake up like that with very severe abdominal cramp. I believe it is a form of spasticity affecting the muscles there. I wrote a long post about this a year or so ago, but I just wanted to reiterate it in a brief form. I don't have this problem any more. Maybe I get enough minerals now, although I haven't used the Himalayan salt. I will try it. My nighttime horror now is my legs and back jerking, and itching all over. The itching is not from MS--it is from Polycythemia Vera, a common symptom and chief complaint. I use ginger tea if I have to get up with the itch, and that helps. I must get enough magnesium and calcium during the day to stop the leg and back jerks, which is usually successful. I have no way to really get a handle on the itch, although ginger helps. Obviously skin balm helps but does not stop it. I am always grateful when I have a night a sleep through, maybe a third of the time.

Thanks Sally! I am very excited and nervous all at the same time. Happy about being able to be seen by actual health care professionals, but am terrified of it being an experience like the very last quack doctor I saw. I am hoping so much that I find someone like Dr. Omar.

Mariel- I read the older post. I don't have pain in my abdomen in these episodes.. It's a really crazy feeling in my head and a horrible rushing sensation throughout my body. My breathing seems to be off rhythm or short.. My eyes feel weird when they move and 1pupil will be tiny and the other completely dilated. It's bizarre and scary as all get out. I have noticed a couple of times before these episodes, that I will wake myself up laughing. Other times my boyfriend tells me the next day that I was laughing all night in my sleep.

Lately I have been having to make sure my head is fully elevated while sleeping or else I wake up with horrible vertigo and sit up immediately but am not fully able to get my eyes all the way open or get the spins to stop for a minute. That's very scary as well. The base of the inside of my head doesn't feel right, I am assuming that's inflammation.

I may try magnesium tho, as thats not really incorporated into my vitamins

AynaDee, it can't hurt to get some extra magnesium, as it is a needed element which is often low in many people. A pcp told me that the majority of Americans now test low in magnesium. He didn't know why this was, other than possible nutrient deficiency in our food.
I know you didn't have the abdominal spasm, just noted it in my case as an example of how spasticity could cause night-time severe reactions. I had a weakness in that area due to having Porphyria; it is almost completely gone now.
I hope your night condition goes away too!

I have had your exact symptom of waking up gasping for air, and the rest of my body is freaking out, too.

I was diagnosed with MS-related central sleep apnea. The more common sleep apnea, obstructive sleep apnea, is when you stop breathing because of an obstruction in your airway. Central sleep apnea is the result of having your brain fail to signal your body to breathe, and in MS it is because of damage to the portion of your brain that controls that sort of thing.

As a result I am now on O2 at night. It hasn't happened to me since I started the O2.

Thank you so much for this post.. It's definitely something I am going to write down to ask my new doctor (when I find one).

When these happen and I try to explain it to my boyfriend when I come out of these spells, that's much like what I tell him.. 'it's like my body is forgetting to breathe and am on the verge of falling out my brain wakes me up like "HEY YOU"RE GONNA DIE_WAKE UP!" and then all heck breaks loose'

This all makes sense..

And also backs my theory on me knowing my body better than most doctors

Thanks again!

AynaDee, My nighttime wakeup emergencies were very much like yours, except that my trigger to wake up was the sharp pain in the middle of the abdomen. Actually the pain was in the area of the diaphragm, where we breathe. I think my events were also triggered by something in the Central Nervous System failing to signal me to breathe, so that then I had this acute pain which MADE me wake up.
During the more severe of these episodes I would say to my husband, before I was fully awake, "I have died." or "I am dead." I didn't say "I'm dying". I WAS dead, in the opinion of my body. sometimes this would be so extreme that I would throw myself out of the bed and somehow end up against the wall a few feet away.
The Central Nervous system being damaged is a problem! I don't have this type of pain signaling any more at night. Maybe because older people sleep lighter than younger ones. Maybe I do not go into that very deep sleep now.