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 the comments and messages coming. It's wonderful getting to know all of you!!

XOXO, Kyli

Category:

People & Blogs

Tags:

• pots
• dysautonomia
• chronic illness
• fatigue
• college
• doctors
• life

[ironbith]

U r so adorable and strong!

[Amanda0517Melissa]

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!!

[81kphelan]

wow,your such an inspiration to many people and me,tuns of hugs

[dancergrlrocks]

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!

[tophatkat11]

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

[cmilhn]

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

[someluckystar]

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 :)

[ashpauls]

hahaha me too! i never had a user account until I saw these videos from her.

[ashpauls]

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,

[ReineDeLaSeine14]

YAY KYLI!