Felissa Posted January 5, 2013 Report Share Posted January 5, 2013 Is this part of my POTS?Hello all. I'm 26 and I was diagnosed with POTS in 2006 after passing out at a museum tour. (very embarrassing) However I never took POTS seriously until I started lining up my symptoms together and realised, hey, this is something I have. I guess I ignored it because my symptoms are not really that bad. I kind of ignored all the things they told me, and even threw away my compression stockings! Honestly, the doctors at the hospital didn't take the time to explain POTS to me and I've never been to see a specialist etc. I just grew to accept it as part of my life. I know to stand up slowly (although I forget 60% of the time) I know I can't stand for long etc. I throw PVC's on the heart monitor (something I was told is no bigge??)But lately my symptoms have been flaring up. I cannot drink a glass of water without peeing almost immediately. Peeing actually rules my life. I need to pee ALL THE TIME. I'm constipated. I cannot bend over without feeling light headed. Anytime I stand up from sitting for a while (or worse, lying down) my heart races and I get tunnel vision.I still can't stand for long, I cant change the lightbulb or do much with my arms raised above my head. I used to have exercise intolerance, but I pushed through that because I want to be fit.But my latest symptom is really scaring me. My big toes are numb. Well, partially numb, anyway. and the severity seems to vary. It started on my right big toe and spread to my left. My left big toe felt numb all over, my right big toe was numb more to the sides. Now they seem to have switched.Internet searches leave me with panic attacks. They leave me thinking I have MS, or diabetes or even HIV. I had a full blown panic attack one night because I kept googling what was wrong with me and coming up with all sorts of terrible possibilities. (Anxiety is also something I suffer with)All this to say... does this happen to anyone else. Could this be a symptom of my POTS?? Quote Link to comment Share on other sites More sharing options...
jenniferlynne76 Posted January 5, 2013 Report Share Posted January 5, 2013 I can't speak to your other symptoms, but I can tell you that I deal with numbness in my toes/feet and hands/arms. Especially my hands/arms with regularity (every night when I go to sleep and sometimes sporadically throughout the day). It's always best to get checked out by your doctor, but after ruling out all of the horrible things you find when you Google such symptoms (and I know...I've done it, too!) my neurologist has assured me that this is just part of the POTS/dysautonomia. One more "fun" symptom many of us share. My advice: stay off of Google (it'll scare the wits out of you), and contact your doctor. Always best to rule the scary stuff out, but I suspect you'll find it's just another "present" from POTS.Hang in there!Jen Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 5, 2013 Report Share Posted January 5, 2013 When you say, "numb toes," what exactly do you mean? Is that totally numb w no feeling? Or is it partially numb withs some feeling? Is it pins and needles numb? Cold numb? I have lots of numbness in all my extremities, like Jen said, especially at night and w limbs falling asleep. But never totally numb w no feeling. I think we all struggle w anxiety produced at least in part by our overacting sympathetic nervous systems so it is a delicate balance between using the information we find on the Internet as a help and not a hindrance. This forum is a great place to go to reassure you that your symptoms are similar to others and learn from one another. Quote Link to comment Share on other sites More sharing options...
FarmerAmy Posted January 5, 2013 Report Share Posted January 5, 2013 I often have icy cold feet and hands. I especially notice that my feet are freezing when I got to bed at night. I also have problems with my feet cramping when they are really cold. And it's been a long time since I have been on a stair master, but my feet used to go numb when I would use one. My feet always feel better once I get them warmed back up. Are your toe numb because they are cold? Do they feel better when you get them warm? Quote Link to comment Share on other sites More sharing options...
Felissa Posted January 6, 2013 Author Report Share Posted January 6, 2013 It's partially numb. The term I saw on the internet that described it the best is 'encased in wax'I'm not cold. :-/ I live in a hot country. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 6, 2013 Report Share Posted January 6, 2013 Sounds like a common Dysautonomia symptom. You might want to do a search on this forum for numbness- I bet there are lots of people describing this in the history of the forum. That would give you a good idea if it sounds like what you are feeling. Quote Link to comment Share on other sites More sharing options...
peregrine Posted January 7, 2013 Report Share Posted January 7, 2013 I've got numb (loss of sensation, no tingling, just can't feel much) big toes - at first I thought it was Christmas Toe (a problem that backpackers get) - I had hiked 250 miles with too-tight boots), but it didn't recover. When my primary care doctor referred me to the autonomic nervous system neurologist at the local hospital, she did mention that specifically. I have also had a period of tingling numbness and weakness in my ring and pinky fingers, but it resolved fine; my neurologist just said that it's probably the POTS.Numb toes *can* be associated with small fiber neuropathy, which can be caused by things like diabetes, HIV, vitamin deficiencies, etc. You might talk with your primary care doctor about getting those ruled out - they are simple blood tests and may help allay some anxiety - and if you do have one of those (I don't have any of them), they are treatable and should be treated.Peeing all the time sounds like issues with salt retention - before I started eating salt I peed all the time when I drank extra water.It sounds like you should have a talk with your doctor - if you can't get a specialist to see you, maybe show him or her the DINET website and see if he/she can run some simple tests like the poor man's tilt table and some blood tests to start with, and maybe talk about some of the more "conservative" (less likely to be harmful) treatments like salt, water, compression stockings, abdominal binders, etc for starters.(regarding the PVCs - everyone throws them on the monitor from time to time, as far as I know; I threw a couple on my Holter monitor but my heart is fine) Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted January 7, 2013 Report Share Posted January 7, 2013 I doo experience numb tingly toes and hands and face. It varies and I often get this when I'm exhausted or hot. Quote Link to comment Share on other sites More sharing options...
Felissa Posted January 8, 2013 Author Report Share Posted January 8, 2013 Thank you so much for your answers! It's weird. I wake up without numbness, and by the end of the day the tip or the sides are numb. I have no tingling or pain. I'll have to see my doctor, but I can only do that when I can afford it. I'd be devastated if I have diabetes or something. Quote Link to comment Share on other sites More sharing options...
peregrine Posted January 9, 2013 Report Share Posted January 9, 2013 Waking up without numbness and having it at the end of the day sounds like you might be compressing a nerve while you're up and about that has a chance to come back after you sleep/rest overnight - perhaps something as a result of your posture, walking gait, etc. I'm not a doc (of course), but when/if you have the monies, make sure you mention the pattern to them. I don't think that most small fiber neuropathies present that way, but I could be wrong. Quote Link to comment Share on other sites More sharing options...
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