Tips for dealing with POTS - Part 2

The 2nd of 3 POTS tips videos. In this one I discuss the importance of pacing yourself as well as communicating with your doctors, and much more !

Please note: I know I've said this a lot, but everyone with POTS is unique! We are all so very different. I know when I first got diagnosed, I went from being healthy to being very sick and I was terrified that it wouldn't go away or get better. I realized after I made this video that the mention of things like shower chairs or wheelchairs may be frightening and discouraging to those of you who are in the beginning stages of POTS, and unfamiliar with everything. Please, please, please do not let it scare you or make you feel like you're going to get worse or anything like that. You may never get to that point. And if your blood pressure is more stable & you currently don't find the need for a wheelchair, shower chair, etc, please don't let this video make you feel like you may need one later on. There are so many different variations when it comes to POTS. It's very difficult to generalize an illness like ours. I tried to base the tips on the "average" POTS patient, but the truth is there is no average POTS patient!




((3rd video will be up tomorrow!))

Hope everyone is doing great!! (hugs)

Kyli

Category:

Education

Tags:

• pots
• dysautonomia
• chronic illness
• orthostatic intolerance
• low blood pressure

[RobertFlorio]

its so good that you are getting feed back. good work. iv got an idea for our video

[chronicallykyli]

Can't wait to hear it!!!

[xNikki713x]

It's really nice of you to take the time & try to help others out that are going through the same thing. :) Right now my doctors think I could possibly have some form of dysautonomia. The thing that confused my doctor is that I'm constantly dizzy. For the past 4 months it's been almost everyday, with a few good days here & there. I'm new to all of this and am trying to do some research on my own..but with what you know, is it possible to feel dizzy all the time with something like dysautonomia?

[chronicallykyli]

Nikki, it's definitely possible to be dizzy everyday with Dysautonomia. I'm so sorry you're dealing with that. I was dizzy everyday when it first started for me as well. How familiar is your doctor with Dysautonomia?

[ChanShelly]

when I watch your videos.

Thank you so much for working so hard to make these videos that help others with POTS and help people understand the illness!

[chronicallykyli]

Shelly, I'm sooo glad my videos have been helpful to you. That makes me so happy. It sounds like we have a lot in common!! Good luck with college. I'm sure you'll do great (it seems that there's one thing us POTS patients have in common & that's dedication and passion!) Keep in touch. I'd love to hear about how you're doing with it :)

[casserilla331]

Thank you, Kyli, for doing such a thorough job summarizing the tips and tricks for us POTSies. The salt thing is huge and I too had trouble finding the old V8 that isn't low sodium. I wound up switching to Clamato. I actually think it tastes a little better than V8. I have actually found a good doc who knows about POTS here in Dallas, TX... Dr. Kyprianou at The POTS Treatment Center. Huge relief of my POTS symptoms. FYI - I also have Neurocardiogenic Syncope. Take care!!

[ew7walsh]

Hi, so I think I have POTS but I have gone to the doctors and they didn't confirm it but definetly agreed that it was a possibility. While that was good, it also was a shame because now my parents don't fully take me seriously. This is all while I have most of the symptoms; extreme tiredness, sensitivity to light, floaters etc. What should I do? (PS I am also an athlete so it makes things tougher for me)

[cairns73]

The video was great and keep up doing what your doing

[ChanShelly]

Hi, thank you for your kind words! And it is great to hear that my coment made you happy :) Keep up the great work with your videos, they are amazing and kind of make me want to start putting up videos of my own!

[luminescentfeeling]

Really good video once more. It's good you've met someone in real life with POTS, i never have as in the UK there aren't any support groups. Thankfully

the Americans 'discovered' POTS which is why you guys are so much more aware!

Pacing is a good idea and as you said yourself by doing one day on/one day off - you can usually prevent a relapse of symptoms, well until we get wacked with a virus or stress but you're right. Try and find a balance and adapt life style and activities.

[azulamarillo1]

thank you again lyli for your videos!!

they always cheer me up :)

[azulamarillo1]

nikki, when i began with dysautonomia i used to feel dizzy everyday too, its normal. my doctor recomended me that when i felt like that i had to drink a lot of water, but really lot lol

at first its kinda weird because when you are dizzy you just don't want to eat or drink anything, but it really helps.

good luck!!

Francisca