Sleep issues and a question about dysautonomia

[BumbleBeeBumble]

I am waking up in the most nights. I have the sensation of a TENS unit going off in my hands, arms and now my bottom lip. My lower lip was firing off like mad. My husband was not sure what to think because he could actually see my lip rapidly jerking. Had it happened when I was more awake I would have gotten video. But who thinks clearly at 2am.

I was wondering if any of you have dysautonomia and what you do to manage it? Mine is getting better but I'm pretty sure it will get bad again as it does seem to come and go.

Kitty comes today!

School is out now. Much needed break for my kiddos. We have been doing the online thing since last March. They are totally over it.

[greaterexp]

I'm sorry about these very troublesome symptoms. What does your neurologist have to say about how to handle it?

[BumbleBeeBumble in reply to greaterexp]

The old neurologist didn't say much about it.

Not sure what the new neurologist will say. It's definitely some kind of neuropathy.

The new neurologist will be at s University. Much better testing there.

[carolek572 CommunityAmbassador]

I have that happen in my lower legs from time to time. It hasn't been too bothersome, yet, BumbleBeeBumble but I usually massage the area and it goes away. I am curious as to what others in the forum do for theirs

[Iona60]

I frequently get tremors that occur just as I am falling asleep. They are very bothersome and keep me awake. They are worse now as I am in the "crap gap" month before my next Ocrevus infusion. Last night I took 800mg of ibuprofen before bedtime which helped. My neuro did not mention the term, dysautonomia. It may be different than what you have.

[BumbleBeeBumble in reply to Iona60]

Dysautonomia is an umbrella term. Things like POTS, vasovagal syncope, orthostatic intolerance are autonomic issues.

[erash in reply to Iona60]

Dysautonomia more like breathing, heart rate regulation, temp regulation or sweating (I think)

[BumbleBeeBumble in reply to erash]

Yes, all those things as well.

[erash]

Sounds more like dysesthesia

If not painful, I note it, think”how bizarre” and then attempt to ignore it (quivering thighs, mouth, spasms face)

[Iona60 in reply to erash]

I wish that I could ignore mine. It feels like I continually hit my funny bone.

[BumbleBeeBumble in reply to Iona60]

Yes. That sensation in my legs very frequently. Sometimes it's hard to get to sleep it's so bad.

[JTZES]

I have those symptoms every night and it varies where from night to night. I also have it during the day in my hands and from my knee down through my feet.

The Doc has me on gabipenten which does help but makes me very tired if I use the recommended dose.