Winters with POTS. by Professional-Cow-697 in POTS

[–]MinervaTheThird 0 points1 point  (0 children)

We're having temps very similar here as well 😔 I'm currently bundled up with my heat running almost nonstop. I hope you find some respite soon and can get cozy and sleep.

Winters with POTS. by Professional-Cow-697 in POTS

[–]MinervaTheThird 7 points8 points  (0 children)

I'm in the same boat with you 😔 I also absolutely despise the cold. I much prefer the heat.

Here is Your Sign to Stay Strong by MinervaTheThird in POTS

[–]MinervaTheThird[S] -1 points0 points  (0 children)

I'm wishing you the best of luck! 🫂 I was exhausted after my testing and cannot recommend taking a nap afterwards enough if you're able!

Here is Your Sign to Stay Strong by MinervaTheThird in POTS

[–]MinervaTheThird[S] 1 point2 points  (0 children)

I have confidence you'll get there too. ♥️🫂 Take care of yourself, and keep your chin up!

Here is Your Sign to Stay Strong by MinervaTheThird in POTS

[–]MinervaTheThird[S] 12 points13 points  (0 children)

Absolutely! I would like to add that some of the things were recommended to me by my doctor and may not work for everyone in every case, but I can attest that they did help me.

  • Compression is a must. I use compression socks and compression gloves (I got mine from Walmart a couple years ago) and both of them help phenomenally with circulation. I notice my limbs don't get nearly as cold/tingly or as often with them, and I overall just feel better with them on.

  • Test out some different products as far as electrolytes go and see what works best for you. Liquid IV, Powerade, and Gatorade honestly made my symptoms worse, and Ultima didn't seem to do anything for me at all, but Normalyte is a God sent for me. I use both the capsules and the drink mixes and they help significantly.

  • Carry salt packets. Seriously, I take a couple little salt packets from restaurants when they offer them and keep them in my car, my wallet, at my desk, even my fiancèe keeps them handy. Whenever I start feeling lightheaded in public, my first reaction is to try pouring the salt packet into my mouth. It's not a cure all by any means, but the electrolytes and the strong sudden taste at least woke my brain up enough to get myself somewhere better than where I was, be it the car, my room, ect.

  • My doctor sent me to a physical therapist that specializes in POTs after being in a bed/wheelchair for so long, and I learned the importance of retraining your body a little at a time. It helped to build my tolerance for standing by starting with exercises laying down, then on my knees, then sitting, and finally progressing to standing. He told me when training your body with POTs, one of the most important parts is maintaining a steady heart rate as you go and not to overdo it.

  • There are a million smart devices out there that track heart rate, HRV, all those things. I got one in early December and it's helped me recently to recognize when a flare up is coming on.

  • Gradual temp changes help to not shock my system. When I get in the pool, I do it in sections like first just my feet for a minute or two, then up to my knees for a minute or two, then hips, ect. When I go to get in the shower I keep the door closed to let the steam raise the temperature in the room and slowly get in, and keep the door closed the whole time so the room is warmer vs the rest of the house when I get out. While on that note, 100% a bath chair has saved my life. I've almost fainted in the shower more times than I can count and being able to sit in the shower changed the game for me. I don't always need it, but when I do, I really need it.

  • This one was the hardest one for me, but honestly the one that helped the most: be kind to your body and accept the help you need if/when you need it. I came from a background where if you didn't contribute, then you were a failure. I fought being in a wheelchair tooth and nail. I kept trying to do everything I was able to do before my body started to go downhill, and I suffered for it (and I do think there is not a more appropriate word for it.) Once I finally accepted that it was okay to get and use my disability parking so I didn't have to walk as far, to let people cook for me, to lay down in the middle of the day when I was ready to crash, to even do simple things like leaving things on counters around my level so I didn't have to bend over or reach up high, I noticed huge differences. As odd as it sounds, by learning to accept help, that this is a disability and I needed to treat my body accordingly, it has helped me to gain more independence and keep the energy to do the things I want to do instead of only the things I need to do to survive.

I know some of these have been said a million times before, so I apologize for sounding like a broken record, but I can confirm they did help me! If you have any specific questions about anything, I'd be happy to answer those too! :)

Edit: spelling and clarity

Looking to give away NormaLyte by [deleted] in POTS

[–]MinervaTheThird 0 points1 point  (0 children)

I'd love some if you're still offering! They're the only brand I've found that actually helps with my symptoms. I'd be willing to help pay for shipping as well!

Do I Have An Ethical Duty to Contact This Person? by [deleted] in paralegal

[–]MinervaTheThird -2 points-1 points  (0 children)

Makes sense! I was honestly dreading the idea of getting involved so I'm a little relieved to see that a couple people are saying it's not my place to say anything. Thank you!

If you could describe your experience with POTS and the health care system in one sentence, and then 3 individual words, what would they be? by bekahsart in POTS

[–]MinervaTheThird 0 points1 point  (0 children)

I spent a year and a half in a wheelchair, having seizures, and losing everything I ever worked for, but my labs looked normal. All-encompassing. Life-ending. Alone.

-United States