Exhausting sx--feedback please!

[truckin]

Flare? Emotions? Meds? Both docs aren't overly worried.

Started about 4 days ago, I sleep or doze (night sleep or nap) and when I wake I am very groggy/drunk but scared. When I stand up, my neck muscles spasm with a heavy pressure for about 5 minutes and my shoulders shake uncontrollably.

I always call my caregiver during/after each episode and she talks me down, assuring me it's my ptsd/anxiety (I posted about that a few days ago) coming to the surface. Yes, good things are coming into my life, after being a virtual hermit the last 4 years--She said no wonder after all that time your brain is trying to shift gears.

Anyway, while talking to her on the phone, she tells me to hold my arms out straight in front of me, and to the sides, and the shaking stops. I still have residual lumbar shakes, jelly legs, and need to urinate, but it usually calms down after ~20 minutes. Even after that I am still breathing sluggish like I'm asleep--I guess that's better than my usual hyperventilation.

Scary and frustrating, but my PCP did annual exam last week, and said it's sleep paralysis and that anything--the need to urinate, or a noise, etc can start the episode.

I dunno. Maybe a flare--but my mind/brain, whatever--is like dead weight every time this happens. Caregiver wants me to stay up and walk, light stretches, guzzle water, etc., not lie back down.

It's like every time I wake, my adrenaline has to be hit over the head to get moving! I'm trying a smaller dose of Nuvigil, 1/3 of 1/4 of a mg of Xanax, sublingual B-12 first thing in the AM.

Then when the Nuvigil starts doing its thing (wired) I have to add another tiny piece of Xanax, then I gradually get drowsy and doze,then I can't wake unless I start shaking.

My neuro has always said if the sx are not continuous--like hours or days--she considers the anxiety first, or the sleep paralysis--she calls a type of parasomnia.

I don't mind dealing with these sx, as long as I can stay strong and half alert and not feel thrashed night and day. So sick of this!

[Justsayyes]

Wish I could help, your symptoms are complicated just because you have more than just the MS going on.

Glad you have good people taking care of you who understand this far more than I do!

The one thing I can kind of relate to is that when I wake up my legs shake. This passes pretty quickly.

Hang in there!

[kebsa]

have they ever suggested doing a sleep study, a year or so ago i had a really bad run with several relapses that led to spending a lot of time in hospital. I had known for a long time i would wake with a crashing headache, and feeling really tired, hard to get moving- then the nurses reported that i seemed to stop breathing at times- i was sent for a sleep study and i was diagnosed as having Central Sleep Apnea- the Doctor said it was caused by the MS- at times my brain just forgets to breath- i now use a type of CPAP, a bilevel machine that will force me to tak e a breath if i do not- its not as bad as i thought it would be but it is another sneak attack from MS!

[truckin]

Gotta roll with the punches

Yeah, It sure is complicated. Alot of input from different specialists, it's hard to figure out.

I had 3 sleep studies and have a regular CPAP for the kind of breathing breaks you're talking about, although the sleep specialist said they were normal breaks and no loss of 02. Guess I need another study--that's the only way Medicare will pay for another CPAP.

Docs through the years have told me that depression alone can do this. Time to try again with an AD, I guess.

Then the PT told me to stretch and massage my neck.

Also change my bedding, maybe? Since it's only my shoulders that shake, and no numbness, I'm thinking getting some sort of cervical pillow and raise the top half of my body.

Tired of trying to figure it all out. Like my caregiver told me--don't forget dings and dents of aging.