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Morgan Dickson
@morgandickson

Posts: 2
Joined: Mar 29, 2013

Postural Orthostatic Tachycardia Syndrome (POTS)

Posted by @morgandickson, Apr 2, 2013

Hello!

I am wondering if anyone has any experience with POTS and would like to share their stories. I am considering how to best meet the needs of patients (and their caregivers) who are experiencing symptoms of POTS or who have been diagnosed with POTS. If anyone has had any experience related to this syndrome, please share your relation to POTS, the hardest moments for you, and the moments that were most valued.

Thank you!
Morgan

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Jenniferjjjj
@jenniferjjjj

Posts: 2
Joined: Apr 03, 2013
Posted by @jenniferjjjj, Apr 3, 2013

hi Morgan! I have POTS. My story is long but I will try to condense it as much as possible. My problems started in 2009. I had 3 miscarriages in a row. After a bunch of testing i was actually diagnosed with Lupas. I was put on meds for it. After several months i started to have other issues. I was getting dizzy and having a lot of stomach pain. Again, i started going back to the doctor. They couldn’t find anything. Then It just got worse and worse. The dizziness became everyday, I couldn’t eat without vomitting, my legs would shake until i felt like i was going to fall down, chest pain, i was always out of breath, terrible stomach pain,


Jenniferjjjj
@jenniferjjjj

Posts: 2
Joined: Apr 03, 2013
Posted by @jenniferjjjj, Apr 3, 2013

hi Morgan! I have POTS. My story is long but I will try to condense it as much as possible. My problems started in 2009. I had 3 miscarriages in a row. After a bunch of testing i was actually diagnosed with Lupas. I was put on meds for it. After several months i started to have other issues. I was getting dizzy and having a lot of stomach pain. Again, i started going back to the doctor. They couldn’t find anything. Then It just got worse and worse. The dizziness became everyday, I couldn’t eat without vomitting, my legs would shake until i felt like i was going to fall down, chest pain, i was always out of breath, terrible stomach pain, tingling and pain throughout my body, hot flashes and night sweats. The docs couldn’t figure it out so i was told that it was all in my head and that i had an eating disorder which i knew that i didn’t. i was put on several anti phychotics and anxiety meds and was to told to see a phychiatrist. So i did because i was willing to do anything to feel better. Well i only got worse. Finally one day i was at the doc and down to 90 pounds and i passed out. I was admitted to the hospital and was diagnosed with gastropheresis. My body was not digesting food which is why i couldn;t eat and had all of the stomach pain. Then they sent me to Chicago to see a specialist. After many tests they said that i did not have lupas but had POTs. I was put on new meds and a few months later i became pregnant with twins. I was able to carry them and have healthy babies. Now i have 4 children and the twins are 3 months old. My dizziness and some other issues are coming back and i am looking for some help. I know that i have left a lot out but i figured this was long enough.

Jennifer


Morgan Dickson
@morgandickson

Posts: 2
Joined: Mar 29, 2013
Posted by @morgandickson, Apr 10, 2013

Hi Jennifer!
I’m sorry for the late reply- Thank you so much for sharing your story with us! It seems many patients are receiving feedback suggesting their symptoms are “all in your head.” This was very helpful:) Thank you again!

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