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
August 29th, 2009 - 04:20
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!
August 29th, 2009 - 04:43
(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!!
August 29th, 2009 - 05:53
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 :).
August 29th, 2009 - 08:02
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
August 29th, 2009 - 08:03
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!
August 29th, 2009 - 13:39
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?
August 29th, 2009 - 15:10
its so good that you are getting feed back. good work. iv got an idea for our video
August 29th, 2009 - 15:21
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.
August 29th, 2009 - 15:53
Let me know how it goes :) I’m going to try it myself today!
August 29th, 2009 - 15:55
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?
August 29th, 2009 - 15:57
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 :)
August 29th, 2009 - 16:47
Can’t wait to hear it!!!
August 29th, 2009 - 23:47
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
August 29th, 2009 - 23:48
thank you again lyli for your videos!!
they always cheer me up :)
September 3rd, 2009 - 17:42
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.
September 11th, 2009 - 04:45
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!
October 23rd, 2009 - 22:49
The video was great and keep up doing what your doing