Clairefmartin Posted May 1, 2012 Report Share Posted May 1, 2012 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.ClairePS - 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. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 1, 2012 Report Share Posted May 1, 2012 The past few months the left side of my face has been getting tingly, numbish, burning. It comes and goes. I assume it's related to neuropathy. Not sure if this is the same as what you're experiencing. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted May 1, 2012 Author Report Share Posted May 1, 2012 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!!!! Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted May 1, 2012 Report Share Posted May 1, 2012 not sure if it the same, mine doesn't happen every time I stand more when I am trying to do something and YES when I did my TTT. Its like my face goes numb starting from around my mouth and then out to my checks. Quote Link to comment Share on other sites More sharing options...
issie Posted May 1, 2012 Report Share Posted May 1, 2012 Have you tried antihistamines to see if it helps? Might confirm the possible MCAS. I have this too and I think it is MCAS related.Issie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 1, 2012 Report Share Posted May 1, 2012 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 numbnessBren Quote Link to comment Share on other sites More sharing options...
chipper Posted May 1, 2012 Report Share Posted May 1, 2012 When I have been on my feet too long, my face has a numb-like feeling. Not very pleasant! Hope you find answers and a way to get better. Boot camp sounds good. Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 1, 2012 Report Share Posted May 1, 2012 I sometimes get it with standing and exertion, other times as part of my reactions Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted May 2, 2012 Author Report Share Posted May 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
issie Posted May 2, 2012 Report Share Posted May 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted May 2, 2012 Author Report Share Posted May 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
issie Posted May 2, 2012 Report Share Posted May 2, 2012 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 Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 2, 2012 Report Share Posted May 2, 2012 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! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.