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!!
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)
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.
you have done a super great job with these videos. Its nice to know that others find taking a shower challenging. I use a shower chair and I am definitely going to try a cool water soak before getting out of the shower.
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?
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?
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.
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 :)
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!
I was diagnosed with POTS a year ago, and I stumbled upon your videos soon after - they have been a great source of help and inspiration to me! I just recently got a Youtube account, but I have been watching your videos from the beginning. :)
I'm 18 and have a lot of similar interests to yours, like I want to be a doctor as well and have just started college, also my mom is sick as well, and it really makes me feel like I have someone to relate to when
Kyli, you've really got something here and i feel like that first one was you pointing at me and telling me to, lol! I'm working on it... Limitless... that's what i'm trying for. Videos will come on my end soon, i promise, but you look gorgeous as always and i applaud the videos as well! :) You're really taking this to a next level :).
(hugs) I know how tough and discouraging ER visits are. I'm so sorry to hear about the pacemaker. Things WILL get better no matter how scary they seem right now. Hang in there. Everything's going to be alright.
Kyli... Thank you, thank you, THANK YOU!!! I'm so glad that you are out there and that you take the time to make these videos. I'm just now starting to deal with the really bad parts of POTS. I've been in the ER three times this month. Twice with tachycardia/palpitation symptoms and tonight with irregular heart beat. So, I'm soaking up all the tips I can get! Unfortunately, I just found out tonight that I might need a pace maker. I appreciate all your efforts! You're a wealth of knowledge!
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!!
casserilla331 2 months ago
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)
ew7walsh 2 months ago
The video was great and keep up doing what your doing
cairns73 2 years ago
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.
luminescentfeeling 2 years ago
thank you again lyli for your videos!!
they always cheer me up :)
azulamarillo1 2 years ago
you have done a super great job with these videos. Its nice to know that others find taking a shower challenging. I use a shower chair and I am definitely going to try a cool water soak before getting out of the shower.
lednugenna 2 years ago
Let me know how it goes :) I'm going to try it myself today!
chronicallykyli 2 years ago
its so good that you are getting feed back. good work. iv got an idea for our video
RobertFlorio 2 years ago
Can't wait to hear it!!!
chronicallykyli 2 years ago
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?
xNikki713x 2 years ago
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?
chronicallykyli 2 years ago
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
azulamarillo1 2 years ago
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!
ChanShelly 2 years ago
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 :)
chronicallykyli 2 years ago
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!
ChanShelly 2 years ago
Thank you so much for doing this!!
I was diagnosed with POTS a year ago, and I stumbled upon your videos soon after - they have been a great source of help and inspiration to me! I just recently got a Youtube account, but I have been watching your videos from the beginning. :)
I'm 18 and have a lot of similar interests to yours, like I want to be a doctor as well and have just started college, also my mom is sick as well, and it really makes me feel like I have someone to relate to when
ChanShelly 2 years ago
Kyli, you've really got something here and i feel like that first one was you pointing at me and telling me to, lol! I'm working on it... Limitless... that's what i'm trying for. Videos will come on my end soon, i promise, but you look gorgeous as always and i applaud the videos as well! :) You're really taking this to a next level :).
bionyx86 2 years ago
(hugs) I know how tough and discouraging ER visits are. I'm so sorry to hear about the pacemaker. Things WILL get better no matter how scary they seem right now. Hang in there. Everything's going to be alright.
Thinking & praying for you!!
chronicallykyli 2 years ago
Kyli... Thank you, thank you, THANK YOU!!! I'm so glad that you are out there and that you take the time to make these videos. I'm just now starting to deal with the really bad parts of POTS. I've been in the ER three times this month. Twice with tachycardia/palpitation symptoms and tonight with irregular heart beat. So, I'm soaking up all the tips I can get! Unfortunately, I just found out tonight that I might need a pace maker. I appreciate all your efforts! You're a wealth of knowledge!
jkweirich 2 years ago