I'm 34 and I thought for sure my symptoms would have peaked by now but I'm getting worse and worse even with medication and I'm curious how many others are experiencing this?
So back in November I was trying to fall asleep and started having what I thought was a seizure. I went to the hospital and they had me in there 12 days giving me epilepsy medication thinking it was epilepsy, but it was making me worse (later research told me that epilepsy medication makes pots worse). While in the hospital my hr would go up to 180s then I would have seizure like episodes.
They gave me 3 eegs all negative so they ruled out epilepsy and tried to say it was psychogenic non epileptic seizures. I was then told by my nuerologist my hr got to high for it to be pnes, and he wanted me to go to a epilepsy monitoring unit. I went and after reviewing my hr, etc. During a seizure like episode he suggested dysautonomia/pots causing too much adrenaline which can cause seizure like episodes.
So I went to a Cardiologist who said he doubts I have pots without testing anything because according to him "an increased hr can't cause seizure like episodes". Well i still didn't care what he said and knew something was off so decided to try a pots clinic. Luckily there was one near by.
First meeting with the doctor there she said "I definitely believe you have pots, I want to order a tilt table test." They also had me do the poor man tilt table test there where they test ur hr sitting vs standing and my hr went from 70 to 130.
Fast forward to yesterday I do my tilt table test. They say they are gonna tilt me up for 30 minutes until I have symptoms and if I dont have any put me back down. So they test my hr and blood pressure laying down it was 108 (which is high for me laying down but I had like 4 hours of sleep and was a little nervous), my bp was like 140 also high for me.
They then tilt me up, I can feel my heart pounding so I tell them my heart is pounding and my hands and arms are cold, then I start shaking worse then I ever have before and I hear her say my name but can't respond. Next thing I remember im being put back down and the doctor just says "write pots confirmed, not a seizure its from lack of blood flow to the brain". She told me I beat the record for fastest diagnosis at only 30 seconds. They put me back down after only 30 seconds because my hr went up to 168, and I was shaking, and passed put, and my bp went to 155!
Here is the results:
Description of Procedure:
The patient was in the supine position for minutes with vital signs
recorded every 5 minutes, IV fluids infusing at KVO, and protective straps
in place x3. Upon arrival of physician, the patient was tilted to 70
degrees upright for 30 minutes with vital signs recorded every 2 minutes.
See details in hemodynamic report.
Symptom(s): Patient developed significant tachycardia with heart rate of
168 bpm after tilt. Developed symptom of dizziness, palpitation,
seizure-like activity with whole body shaking, numbness in both arms and
then had syncope. Heart rate returned to normal within few minutes when
patient was brought to supine position
Conclusion/Recommendations:
Postural Orthostatic Tachycardia: symptoms of orthostatic intolerance
accompanied by sustained elevation in heart rate (>30 BPM over baseline)
with no significant decline in blood pressure.