TigerLily Posted July 19, 2020 Report Share Posted July 19, 2020 I am not sure what happened but I sm greatful for the time I had where I felt totally normal. The last week has been awful. All of my symptoms are back. I was in the ER again with a BP of 163/ 118 and a heart rate in the 150s. My digestive system is on the fritz again as well. And I swear my left foot feels like it's hooked up to a tens unit:( Im actually seeing my neurologist tomorrow. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 19, 2020 Report Share Posted July 19, 2020 So sorry @TigerLily ! I know what you are going through, I've been there many times. Did they at least give you IV fluids in the ER? For me docs were always hesitant to give them to me with a high BP, but once I talked them into it my BP would drop as soon as the fluids ran. --- Hang in there - this too will pass. You will go back to feeling better, just please take it easy. I hope your neurologist can help. Best wishes!!!!!! Quote Link to comment Share on other sites More sharing options...
TigerLily Posted July 21, 2020 Author Report Share Posted July 21, 2020 Yes they gave me IV fluids. And everything normalized after that. I have had episodes at home though. My husband just told me my ears was fire engine red. This is an issue that started in 2008. Just my left ear would turn red. And one day it just stopped. Well now that's back. He noticed so I went and took my blood pressure. 128/100. So now I know my red ear directly correlates with my blood pressure going up. A doctor once told me yrars ago the red ear thing is called Erythromelalgia. I sometimes got it in my feet too. My neurologist believes I have small fiber neuropathy. She did say my white matter disease os stable so there's some good news:) Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted July 21, 2020 Report Share Posted July 21, 2020 @TigerLily Very sorry you are going through this, all the best. You finally solved my mysterious “flaming” red ears, thanks. Quote Link to comment Share on other sites More sharing options...
TigerLily Posted July 21, 2020 Author Report Share Posted July 21, 2020 1 hour ago, PotsieCrocheter said: @TigerLily Very sorry you are going through this, all the best. You finally solved my mysterious “flaming” red ears, thanks. Oh you have the red ear thing as well? Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted July 21, 2020 Report Share Posted July 21, 2020 Yes. @TigerLily I had it for many years and it cleared up with my POTS treatment. I don’t get as crazy high spikes in my bp anymore, as for low that’s a different story. I was in ER recently, for a possible clot (false alarm). The nurses were concerned at my low bp and made me wear a colour coded bracelet indicating a high risk for falls. I had to reassure them it was just part of POTS! Edit - wanted to convey that you are not alone with bp problems (sorry if it seemed out of place). Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 22, 2020 Report Share Posted July 22, 2020 I seem to have erythromelalgia, too. It affects my ears, as well as my heels and elbows at night... Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted July 22, 2020 Report Share Posted July 22, 2020 I only get it on my ears. Do you know if it is related to extreme sun sensitivity? When I use to get out more and spend a short time in the sun my skin would get blistery, red and burning on my chest, nose, cheeks, ears, arms, hands, and legs. Even with sunscreen! Once the rash developed it wouldn’t easily go away. It would get itchy too. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 22, 2020 Report Share Posted July 22, 2020 For me, it does not seem to relate to the sun. Anything that has pressure on it at night becomes red, hot, and painful, but my ears seem to do this for no reason as well. Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted July 22, 2020 Report Share Posted July 22, 2020 Sorry that you go through that, it sounds very uncomfortable. I hope you can find some relief. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 22, 2020 Report Share Posted July 22, 2020 Thanks. Pillows strapped to my feet help, and oddly, so have supplements. Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted July 22, 2020 Report Share Posted July 22, 2020 You are very innovative! Come up with a catchy name and sell them, I wouldn't mind a “strappy pillow” myself. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 23, 2020 Report Share Posted July 23, 2020 There are legitimate versions available... but these were a lot cheaper! I stitched the edges of the pillows together, but I tried just using Velcro straps at first. Thanks, though! I love to "invent"! Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted July 24, 2020 Report Share Posted July 24, 2020 On 7/22/2020 at 1:36 PM, RecipeForDisaster said: Pillows strapped to my feet help, I stitched the edges of the pillows together Seriously, can’t find them in Canada, all I could find are strap on knee savers. If “My Pillow” can make millions (not interested in foam chips), your “burrito” style, strapless pillow has a chance (more useful for me). Quote Link to comment Share on other sites More sharing options...
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