Always hoping Posted January 11, 2016 Report Share Posted January 11, 2016 I'm once again hoping that you experts can provide some reassurance on some of the craziness of POTS. You are the only people I know that can really understand!I'm one of the "lucky" ones that normally doesn't actually faint. I just get the head spins a lot and know when to sit down. I'm grateful not to have the associated migraines or nausea that is associated with this syndrome and mostly deal with the low BP, high HR and heat intolerance as my bigger issues. I had one of my scarier episodes again last Friday. It has happened about 3 times since the start of this (pre-diagnosis mostly).Out of nowhere, I get a terrible sensation from my waist down (like a rush of a wave) and then in the next second one of my arms go numb (no tingling or pins and needles, just useless). It lasts for only about 5 - 10 seconds and then the feeling comes back into my arm. Of course by this point, I've gotten into my normal position on the floor! Has anyone experienced this? Is it "normal"? The arm numbness is the really frightening part for me. I'm assuming that this is part of pre-syncope and if I had actually fainted I wouldn't notice the numb arm.Friday's episode was explainable (weaned off of Florinef 4 weeks ago and didn't eat much that day) but it also happened while I was in a seated position and had been for about 20 minutes. Fortunately it didn't happen until I had the car in park and turned to pick something off of the passenger seat.... another whole terrifying issue.Thank you and Be well!Trisha Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 11, 2016 Report Share Posted January 11, 2016 Hi Trisha,I know some of this stuff is really scary. I do experience numbness in my limbs (all 4) but mine is due more to EDS than POTS. It is positional. For example, I can't sit on the floor with my legs crossed or bent because I have flacid veins from EDS and it easy cuts off my circulation. The low bp and inefficient blood flow from POTS, of course, does not help the situation. I can't hold my arms up for long or the same th8ng happens.That being said, because you are experiencing this in conjunction with other symptoms and you don't know what the cause is yet, I highly recommend calling and discussion g this with your doctor (PCP, neurologist, or cardiologist) because sudden numbness can indicate a serious problem. It may be part of your presyncopal symptoms but it is the kind of symptom that you shouldn't just assume is a POTS problem and ignore it.Take care, Katie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 11, 2016 Report Share Posted January 11, 2016 I agree w Katybug. It could be related to POTS but any new symptom should be evaluated by a doctor. Quote Link to comment Share on other sites More sharing options...
Always hoping Posted January 12, 2016 Author Report Share Posted January 12, 2016 Thank you for your replies Ladies and I will make an appointment with my EP to discuss it. At the time, I was actually heading into my PCPs office for a check up. I made it into the registration desk before they caught me (yes - yet another embarrassing moment) so within minutes of the episode I had my BP, HR, sugar, Pulse Ox and EKG checked. All came up fine besides being "tachy". I didn't ask how high that was.It's about the 3rd time it's happened in the 6 years of dealing with this - but it never gets less scary! Thanks again! Quote Link to comment Share on other sites More sharing options...
artsystacey Posted January 17, 2016 Report Share Posted January 17, 2016 Hi Trisha, I'm glad you're seeing a doctor about this. I just want to say I've had that sensation before and it seems to happen when my adrenaline spikes, trying to raise my blood pressure - it brings on panic attack like symptoms for me and I get these rushes of electricity in my limbs and then they go numb. Quote Link to comment Share on other sites More sharing options...
bigtrouble Posted January 18, 2016 Report Share Posted January 18, 2016 so within minutes of the episode I had my BP, HR, sugar, Pulse Ox and EKG checked. All came up fine besides being "tachy".===============I think they have a method to measure blood pressure per vein or visualize the blood flow. I don't know what the name of the technique is.Measuring the blood pressure at the arm misses the pressure in your head and various local parts. Quote Link to comment Share on other sites More sharing options...
Always hoping Posted January 26, 2016 Author Report Share Posted January 26, 2016 Hello! Just wanted to let you know that I did see my EP today and he wasn't concerned about the arm numbness. I think it helped that I had a brain MRI in December, so he could see there were no signs of stroke from the previous episodes. He's assuming it is just another POTS thing and plummeting BP at times. Thank you for your replies! Quote Link to comment Share on other sites More sharing options...
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