Jump to content

Does Anyone's Face Go Numb?


Recommended Posts

Hello everyone....

I was wondering if anyone experiences their face going numb when they stand. Starts with tingling, and if I push it (like during my horrible TTT yesterday) than it goes completely numb. This happens to me within about 30 seconds of standing, quickly followed by my arms having extreme pins and needles (very painful) and my legs/feet hurting like crazy, but not having that "asleep feeling".

Why is this? I looked in the literature, and was a bit confused.

Thats how I know my BP is either dropping or about to drop and I need to get flat. Along with massive sweating, feeling lightheaded, vision goes, etc...and the lovely, "Oh no I'm going to die" feeling. I think I have PTSD from all this :)

Still getting tested, waiting on results and follow up, and basically making no progress...but I feel like its coming, I just have to keep pushing for answers. Thanks for all your support.

Claire

PS - new autonomic specialist thinks i have Autoimmune autonomic neuropathy and neuropathic POTS, maybe OH or NCS. And I'm massively deconditioned, looking into Mayo's adult bootcamp program.

Link to comment
Share on other sites

Thanks Naomi - my right side of my face does that too, independant of this. My neuro exam showed something wacky with my facial nerve (number 2 I think?). They weren't sure if it was vascular - I thought it may be MCAD related, but have been told definitively no MCAD (not sure I buy it though).

This is a reaction when I stand, it's really weird!!!!

Link to comment
Share on other sites

yep me too! I get alot of numbness in my chin and face...just randomly out of the blue......I have also just recently lost my sense of smell for no reason....I figure it is neuropathy related or MCAS related as benadryl does help the numbness

Bren

Link to comment
Share on other sites

So standing could trigger an MCAD or MCAS (which is it these days? :)) reaction? I knew exercise could, so I guess that makes sense, as standing is really exercise for me right now! Glad I'm not the only one. Thanks all. I'd really like that magic pill if anyone has it yet :)

Link to comment
Share on other sites

So standing could trigger an MCAD or MCAS (which is it these days? :)) reaction? I knew exercise could, so I guess that makes sense, as standing is really exercise for me right now! Glad I'm not the only one. Thanks all. I'd really like that magic pill if anyone has it yet :)

Yeah, exercise will trigger it. New term now is MCAS. Yeah, I want a pill too - so get us both one. :)

Issie

Link to comment
Share on other sites

MCAS it is :) I'm just wondering if standing would trigger that, or its some kind of sympathetic overreation. I sweat like crazy, and have a terror panic attack feeling. Weird. Anyways - I'll keep you posted on the magic pill :)

Link to comment
Share on other sites

Claire, Not remembering if your NE levels were high. Those panic, jump out of your skin type feelings can be a release of NE and that is an over-reaction of sympathetic system. But, the same type things can happen with MCAS - so if you have both ---now, we're talking really hard to figure out.

Issie

Link to comment
Share on other sites

I just want to throw this into the mix---low blood calcium can cause numbness/tingling around the mouth and in the fingers. I know about it because I had it after my thyroid was removed.

At other times over the years, I've had random low calcium. I've also found I get off/on facial numbness probably related to that, but I've never had labs taken when it is at its peak. I am just assuming it is.

Now, when I lay in bed and prop up for reading at night, I notice right away that I get a weird "numb, tugging" feeling next to the left side of my mouth. That is actually the side that has a little droop that even my neuro noticed. So, I am assuming that that might be neck related when I bend my neck like I do when propped.

Our weird symptoms!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...