Chronically Hopeful [Doctors, college, & laughing at life]
Just some more updates on my life. :) When I said that POTS can be caused by other conditions, please know that there are also forms of POTS that are simply the result of Dysautonomia (autonomic dysfunction) and if that's the case, seeking another diagnosis isn't going to change things. I have always felt that my form of POTS is being caused by some other condition due to the fact that some of my symptoms aren't really all that typical of POTS. I also have some endocrinological issues that make me wonder what else might be going on. It's important to remember that POTS stands for Postural Orthostatic Tachycardia Syndrome and while there is a long list of symptoms that usually goes along with it, it is mainly characterized by low blood pressure and a high heart rate. Both of these things can be the result of other conditions. Anything from a malabsorption issue (gastrointestinal) like Celiac Disease or Inflammatory Bowel, to anemia to thyroid problems could cause POTS symptoms. That's why, from the beginning of my diagnosis, I've been on a search for an underlying cause. If I find one, it could mean a better treatment plan for me (which means a better life for me!). As always I cannot stress enough that each individual with POTS is just that - an individual. No two POTS patients are alike so it's important to take that into consideration when listening to other people talk about their conditions. Please comment me with ideas on what you'd like me to talk about! And keep ...
February 16th, 2009 - 04:06
awesome update kyli i hope this new doctor can help you get on the right path now. def keep me updated on everything. great video:)
February 16th, 2009 - 08:07
glad to hear from you , and i hope that your new doctor finds the other condition so it could get better treatment so that your life to be better. And a super update . Keep us posted we care about you , Loot’s of hugs alexa.
February 16th, 2009 - 21:36
I know the feeling. I often feel like there is something else underlying this, and feel like once they dx’d me with POTS they stopped searching, but I wont. Good luck with your search! I hope the best for you!
February 16th, 2009 - 23:06
Hi Kyli,
I came across your videos when I was “Googling” POTS. I was diagosed with POTS in December 2008. I’m also one of the lucky 30% of POTS patients that also faints (vasovagal). I just created a YoutTube account so that I can subscribe to your videos. I think they are funny, easy to understand and informative. I know what you are going through. Thanks for letting others know about Dysautonomia.
~Gina
February 17th, 2009 - 19:52
Kyli,
I am so happy to see that you are doing great. This gives hope to other ppl suffering with chronic illness that it might be possible to live a somewhat normal life. I would love to hear all the tips that you for ppl with POTS how to make a life more managable.
Good luck to you girl.
February 18th, 2009 - 17:34
I have POTS too, and I know how rough it can be. I’m glad to hear your doing great! You go girl!
February 19th, 2009 - 09:54
You amaze me again. I was lucky enough to get through both degrees before I started fainting so much and then POTS where the docs here just ignore it completly. I guess my second degree I was pretty sick but blocked it out..and I know the stress made it more difficult and the exhaustion was crazy and yes I laughed alot about my fainting more than the tachacardias arg I feel for you girl but so glad you make these videos
February 21st, 2009 - 10:17
Hi Kyli,
Your video on what is pots was the first thing I saw when I learned I might have pots. I have since been diagnosed, and look for your videos all the time. The way you share your life and struggles with everyone is wonderful. It helps me so much when I see I am not the only one. And I love the humorous people you do like the office lady that wouldn’t let you use the phone. I hope you keep the videos coming just the way they are. Thank you.
February 22nd, 2009 - 12:13
God Bless you dear!!! I will pray for you ^__^
March 7th, 2009 - 11:44
YAY KYLI!
March 16th, 2009 - 09:14
Hi :) I have just watched your videos for the first time (I started right from the beginning and couldn’t stop watching). It was so amazing to watch you bc I look at what you have to go through, and think, “OMG me too!” and it’s awful at the same time, to think that there is someone out there going through what I am.. and having to suffer through it. What you are doing is really important, bc people need to see what this is from the patients perspective. Feel better hun! & thank you :)
Ash,
March 16th, 2009 - 09:16
hahaha me too! i never had a user account until I saw these videos from her.
April 15th, 2009 - 22:02
Did you get any test results that helped you!?! I hope so! I’ve been looking for quite awhile with no results, but hey- giving up isn’t something I do :)
April 17th, 2009 - 03:55
i LUV YOU KYLIE AND CAN DEFINATLY RELATE TO EVERY THING YOU SAY. THANKS FOR HELPING ALL OF US TO NOT FEEL SO ALONE. POTS IN INVISIBLE TO THE UNTRAINED EYE INCLUDING FAMILY, FRIENDS, AND DOCTORS . THANKS FOR BING THERE WITH ALL OF US. WE ARE THERE WITH YOU 2
April 30th, 2009 - 07:43
Hi Kylie, YAY for being back in school. Rest is so VERY important in the life of someone with pots. It’s just so hard to limit the energy output.
I am still a full time student at University and trying to deal with my pots symptoms. IT IS TOUGH! So, to anyone out there going to school and dealing with pots, YOU CAN DO IT! Thats what I have to remind myself all the time.
Keep up the great work Kylie! I hope you find some time for your photography. I love photography as well!
~Katherine
December 2nd, 2009 - 19:32
hey i would really love to know where you went to the doctor, because penn isn’t too far away from where i live and if you have found a great doctor i would really like to know!
January 11th, 2010 - 06:04
wow,your such an inspiration to many people and me,tuns of hugs
February 22nd, 2010 - 08:48
My daughter was diagnosed with POTS at Mayo Clinic in Minnesota by Dr.. Philip Fischer in May 2009.
In Jan of this year her blood pressure shifted from low to high…as in stroke level so we went back to Mayo in Minnesota and some of her meds were changed. We are back home now but my daughter is so discouraged about so many things, her inability to go to school for one. It would be wonderful if you could possibly message us on here. She needs some encouragement!!
March 7th, 2010 - 22:35
U r so adorable and strong!