anyone else here have POTS/Dysautonomia too?
i got diagnosed with POTS last year, and i haven't been able to be in school this year due to it :(( i've never met or talked to anyone else with the same condtion or some kind of similar one, but it'd be nice to!
@modernmisery i hope you are able to find someone to connect with here!
@modernmisery I do!!!!
@modernmisery
I have POTs. There are subreddits and other online communities such as FB groups, where you can find others with POTs and get some support and understanding.
@SilentSerenityy could we PM?
@rationalWillow5379
Yes, you can send me a message if you wish to talk about POTs. :)
@SilentSerenityy I cnst sadly as I dont see a chat now button by your name!
@rationalWillow5379
Is there not a 'leave message' button? I could send you a message if you'd prefer?
@SilentSerenityy please do! As I dont have a leave message button for you
@rationalWillow5379
You need to allow listeners to send you a message through your settings first. :)
Have you visited my profile? There should always be a leave message button. Try the desktop site if you're using the app.
@SilentSerenityy I have allowed them already
@rationalWillow5379
I've just noticed, it's because you're a teen and I'm an adult only listener, sorry. :\ I won't be able to message you privately.
@SilentSerenityy awwww no
@SilentSerenityy please do! As I dont have a leave message button for you
I do!! I have it as well. My PMs are open if you want to talk!
@modernmisery Hello, fellow Potsie!
If you haven't yet, check out these links. These are the main places people with POTS gather to get up-to-date information.
https://www.dysautonomiainternational.org/
https://www.facebook.com/DysautonomiaInternational/
https://www.ndrf.org/
Also, it's good to keep an eye on updates from the Mayo Clinic in Jacksonville, FL. They do a lot of POTS testing there.
Since you're new, here's a quick crash course for you:
1. Salt is the best thing that's ever happened to you. Eat it, love it, live it.
2. Exercise is terrible, but deconditioning is the #1 thing to make POTS worse. If you can, work with your doc to find some physical therapy that works for you.
3. Moving quickly is BAD. Try slowing down whatever you do, especially standing. It gives your body more time to get your BP where it needs to be and helps stop some of those syncope symptoms.
4. A blood pressure diary is a GREAT way to help your doc find the right treatment for you. Just remember to include what you were doing right before taking your blood pressure (eating, sitting, etc.).
5. Don't give up! A lot of us have had ups and downs, but if you keep moving forward, it does get better. Ten years ago, I was told mine was so bad that I'd never walk again, but sheer stubbornness kept me going and now I can go grocery shopping on my own two feet. It takes patience, research, and a lot of trial and error, but you can have a wonderful life.
Let me know if I can help!
@TooManyTentacles hello. Thanks for the info. I really struggle with the dizziness and fainting.
@TooManyTentacles Those are wonderful resources and tips!
I think I have POTs, I see a Cardiologist and Neurologist soon. I sure hope I feel heard and its not all blamed on anxiety!
I definetly notice worse symptoms with insufficient water. I got myself a shower chair, no shame! And I try to remember to getup slowly, but I’m still working on that. My poor heart, its working so hard! ❤️❤️❤️
I have Dysautonomia and have had it for over 10 years!
We also have POTS!
I have dysautonomia! It really makes things go haywire and I’ve never met anyone else with it outside the internet.
