Paresthesia And Sympathetic Activation?

[peregrine]

Starting yesterday I've had problems with numbness/paresthesia (tingling) in my left hand. I was using the computer in a less-than-good way for a few hours and noticed my left hand feeling odd - particularly the outer fingers (pinky, ring) and outer part of the hand (so not carpal tunnel). It didn't improve with sleep (and I avoided the computer all evening). This morning it returned, and now my right hand is also having the same issues to a lesser degree. Every time they tingle badly, I get a sudden rush of sympathetic stuff - sudden cold sweat, feeling of doom, some nausea, a bit more lightheaded. I do have a cervical rib on the right side, which has caused numbness when I wake up in the past, but this is different (hand and wrist only) and on both sides. I also have a small amount of (probable) autonomic neuropathy in my left arm (QSART only, no biopsy) but not (if I recall correctly) in my right. Hard to tell if the issue is nerves or blood vessels. Flexing the backs of my hands back towards my wrist does help somewhat.

I know some folks here have long-running paresthesia - anyone have anything like this, especially with the sympathetic activation? I'm kind of anxious here (unusually), since I use my hands for a fair bit of computer work in my career.

mmm - edited, I've been having increased breathing difficulty for about a month now. I'm seeing a pulmonologist next month (now that we know it's not a pulmonary embolism and it's not responding well to asthma treatment). I've read that breathing issues can cause hand numbness, so figured I'd mention it. (also, if anyone knows anything about being short of breath and POTS, I'd love to hear it; I know there's some stuff out there, but haven't read up on any of it yet)

[cmreber]

I was experiencing this a lot for awhile there. I mentioned it to the doctors when I visited the Mayo Clinic in Arizona in May, so they did some testing with nerves and needles or something? Anyway, they found that all my nerve conductivity was normal and there was no neuropathy or anything going on. In the end, we chalked it up to just another symptom of the POTS. I do notice that it happens when I am either having breathing issues (what I think is a product of the occasional panic attack) or if my BP goes very high. It has also happened with the tightening of the BP cuff. I find it interesting that it affects your left hand, pinky and ring finger, because it is the exact same for me. It also happened to both of my hands while I was doing the TTT, but my BP and heart rate were both very high at the time. Someone had mentioned to me it may be caused in part by high CO2 levels, which would happen if hyperventilating, etc. I'm not sure, but lately, I have only been experiencing it every once in awhile. I hope it gets better for you too, because it is INCREDIBLY uncomfortable!

[arizona girl]

Hi, it sounds like mayo only tested your large fiber nerves and emg which is done with the needles. Large fiber nerves control your ability to move your muscles. Unless they did a qsart, sweat test or skin biopsy they have not ruled out small fiber neuropathy. SFN can cause sensory and autonomic neuropathy, both symptoms which you report. SFN control all your autonomic functions including breathing.

The rise in hr/bp on ttt shows a hyperandergenic response. Meaning when your the sf nerves in blood vessels don't contract them on standing to push blood to the brain, the body uses it's back up system causing a release in adrenaline/norepinephrine which also constricts the blood vessels. When this type of neuropathy is found the cause of it should be pursued, as proper treatment of cause will improve symptoms and/or hopefully stop progression of the cause. Treating symptoms alone while helpful doesn't address cause.

[cmreber]

Arizona Girl, thank you for the info! (& you're right, they did the emg thing on me). I seriously feel like there is so much to know about all of this and even though I've tried to educate myself, it seems there is always more to learn. It probably doesn't help that I live in a small town and no one here has even heard of POTS. Seriously, my general doc gave me an internet printout once I got my diagnosis after finally being referred to a guy in Stanford...and still doesn't really know anything about it. I haven't had too many occurences lately, though I have had a couple weird breathing episodes in the past couple of months. I am supposed to go back to the Mayo Clinic in November and will definitely talk to them about it more.

[jpjd59]

Yes! My daughter experiences trouble breathing on a daily basis. I'm so tired of the first thing every doctor mentions is anxiety. True, when she can't breathe she gets anxious but that is not the cause of it. She can be having a perfectly normal conversation and have it start. So far, no doctor has been able to figure it out. She has other symptoms of a mast cell issue (although no tests prove this) so we are thinking this might have something to do with it.

[arizona girl]

Did you see Dr. Goodman at mayo? If your coming back to az and you want to look into the small fiber neuropathy. Phoenix neurological associates specializes in the skin biopsy for it. They also do qsart, but only for about a year. Mayo may do that one better. Was mayo able to tell you anything and why are they having you come back?

In the home setting have you been able to document a rise in bp/hr?

There are a lot of us in az if you want to get together with any of us when your here. We can a least give you some tips on where to eat and such.

[Chaos]

Peregrine- yes I've had what sounds like similar paresthesia in both my hands,same location in the ring and little fingers. It comes and goes. I don't recall it being associated with the sympathetic activation so much though. In my case, it seemed like I had it more when I was working but I could never pin-point exactly what triggered it or find what relieved it. Now that I'm not working, I still get it intermittently, but still haven't been able to figure out any real pattern to it, although I do think it's a little worse when I work on the computer or have been doing headstands for yoga.

I've had the paresthesia in the hands from having high CO2 levels but that's not the same as this. If I had to guess, this feels more like something coming from my neck.

I do get the shortness of breath fairly frequently with POTS. It's a very annoying symptom. One explanation I've read is that it's related to thoracic hypo-perfusion.

[E Soskis]

Yes - thoracic hypoperfusion can cause a feeling of inability to breathe - I get the feeling of a tight constrictive band around my chest which makes breathing difficult - it was explained to me that when that happens, I am not getting enough blood flow to my chest - it is the same principle with neck pain and hypoperfusion to the neck and shoulders

The parasympathetic system can cause many types of paresthesias - one of the first signs of dysautonomia I ever experienced was left facial numbness and tingling - it didn't go away and now 20+ years later, I still have it. As the dysautonomia progresses, both sympathetic and parasympathetic systems malfunction more and more. It was only last year that my parasympathetic system began to fail. I can have bouts of numbness and tingling on one side of the body and not the other. I can be mottled and cold on one side and not the other. My legs can tingle and prickle then turn a lovely shade of lavender. One hand can feel numb and cold or just a random finger will turn white and feel dead. It is worse in the winter but, can occur in a really cold room.

Each day is a new adventure in autonomic dysfunction!

[peregrine]

Gah - I didn't see the replies for this (no emails sent) - sorry! But thanks all for the responses - good to know, especially that other folks have had it in similar spots. I'm seeing a pulmonologist next month; we'll see what they say about the breathing after my neurologist weighs in. It started fairly suddenly, so I don't know if it's a continuing response to a particular issue (breathing in dust during one particular day) or something else. I do have a history of asthma, so it could be a combination of POTS-related and asthma-related. Ugh. Glad to get all the info from you guys!

Strangely, the paresthesia has mostly gone away; no idea why. I expect it'll come back eventually, though I'm glad to hear that it's probably more general POTS stuff rather than something specifically wrong with my hands (especially since it's so different from my usual pain and hypermobility). I don't know about my BP during the time - I should take it next time, since I swing widely in both directions.

E Soskis - you mentioned the parasympathetic system causing paresthesias - due to failure or overactivation? It sounds like failure? I'm on pyridostigmine, but if you're describing it due to failure, I guess that's less relevant.

Thanks again!

[E Soskis]

Generally, parasympathetic dysfunction causes paresthesias - I'm not familiar with overstimulation - I am only experienced in shut-down - the autoimmune dysfunction I have causes antibodies to attach to the nerve endings and shuts the particular neural pathway involved down or slows it way down. Classis Raynaud's disease is failure of the parasympathetic nervous system and it stems from many causes. Since the autonomic nervous system is comprised of both the sympathetic and parasympathetic nervous system, it stands to reason that both eventually become involved with autonomic "failure".

How does the Mestinon/pyridostigmine work for you? - I was on it for a few years but, my physicians pulled me off and don't want to put me back on it even though I have asked - not sure why they think it is so bad for me - it helped a little but, not tremendously.

You describe your paresthesias as coming and going? - that is typical - they wax and wane - some days are worse than others and some days, not bad at all - those are my favorite days! Hope you remain paresthesia-free - it is a real nuisance to feel like you have bugs crawling over your feet or down your leg, etc...

[peregrine]

The pyridostigmine is... well, mostly meh. I think it helps with fatigue some, but it's hard to say; days when I don't take it I'm generally a bit more tired, but it's hard to separate out from the day-to-day variation due to both POTS variation and how my schedule, sleep, etc changes.

Thanks for the additional info on the paresthesias - that's good to know. It does feel annoying, but knowing that it's not a sign of tissue damage/structural problems per se (like carpel tunnel) means I'm at least a little less afraid (both for the future and also afraid of damaging my hands), which is very helpful - thank you for the clarifications and explanation!