Scout Posted November 24, 2023 Report Share Posted November 24, 2023 Currently having a bad flare up with hyperPOTS. I can't be upright without feeling so ill and symptomatic. My pulse pressure is also very narrow (about 20), and salt and fluids isn't doing much. I think I'm posting on here as I just need some positivity and support. Hope you all have a nice day 💕 Quote Link to comment Share on other sites More sharing options...
Sea otter Posted November 25, 2023 Report Share Posted November 25, 2023 Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 25, 2023 Report Share Posted November 25, 2023 @Scout I am so sorry you are going through this. I too have HPOTS and know exactly what you are experiencing. In my case the docs already know when I get a flare I need IV fluids to stop it. I used to crawl into the hospital and after two bags of IV fluids came out skipping and hopping. For the past four years I had a port and get fluids twice a week, which has cut my episodes down to zero, and flares are rare and manageable. Maybe your doctor is open to giving you an order for IV fluids? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 27, 2023 Report Share Posted November 27, 2023 Sorry you are having a hard time. I second IV fluids. It makes a huge difference for me when I get in a bad flare. My dr orders two bags 3X a week, administered over 4 hours. Quote Link to comment Share on other sites More sharing options...
Amyschi Posted November 27, 2023 Report Share Posted November 27, 2023 Can I ask what degree of symptoms necessitates IV fluids? I'm sure its up to your individual doctors, but just curious what the criteria might be? I just looked it up, and one article said that daily symptoms alone would suggest it; seems like everyone would be getting it in that case?  TY. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 27, 2023 Report Share Posted November 27, 2023 When I am in a flare up that is so bad that I can't stand up or move around fairly normally my dr orders IV fluids. It is subjective.  Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 28, 2023 Report Share Posted November 28, 2023 @Amyschi in my case it is any of these symptoms: inability to remain upright without significant symptoms like tachycardia, brainfog, syncope or pre-syncope, hypertension. https://www.standinguptopots.org/resources/iv-saline https://pubmed.ncbi.nlm.nih.gov/28185102/ Quote Link to comment Share on other sites More sharing options...
Machair Posted November 28, 2023 Report Share Posted November 28, 2023 On 11/24/2023 at 11:58 PM, Scout said: Currently having a bad flare up with hyperPOTS. I can't be upright without feeling so ill and symptomatic. My pulse pressure is also very narrow (about 20), and salt and fluids isn't doing much. I think I'm posting on here as I just need some positivity and support. Hope you all have a nice day 💕 I just wanted to say I hope you are feeling better. Low pulse pressure is awful I get this too 89/70 in flares xx Quote Link to comment Share on other sites More sharing options...
Amyschi Posted November 29, 2023 Report Share Posted November 29, 2023 On 11/28/2023 at 8:22 AM, Pistol said: @Amyschi in my case it is any of these symptoms: inability to remain upright without significant symptoms like tachycardia, brainfog, syncope or pre-syncope, hypertension. https://www.standinguptopots.org/resources/iv-saline https://pubmed.ncbi.nlm.nih.gov/28185102/ Thank you so much for this info - very interesting. Quote Link to comment Share on other sites More sharing options...
MattyT Posted December 4, 2023 Report Share Posted December 4, 2023 I would agree with many of the comments made above. For me, hydration with salted/flavored water would be important. Resting horizontally would be equally important. I have found cardiac rate/rhythm plug-ins on my mobile phone to be quite helpful. The tracings from these devices can be very informative for your doctor-cardiologist-electrophysiologist-neuroendocrinologist. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 4, 2023 Report Share Posted December 4, 2023 26 minutes ago, MattyT said: hydration with salted/flavored water would be important. this one for me is a number one cardinal rule. get a bit dehydrated and expect to have 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.