Productive electrophysiologist appointment yay!

so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray

POTS FLARE UP!!!

So, today has been hard. My POTS is flaring up again. I woke up this morning, and I checked my pulse, it was 69. I got up and went to make breakfast. All I did was put it in the microwave. Within 15 minutes of standing, my heart rate was 161. I had woken up at 10:15 am, but by 2, I was tired and had to go to sleep again. I only woke up about an hour ago. POTS is so frustrating to live with. I go to the cardiologist on Monday to get a second oppinion about it. If anyone has any advice on dealing with this condition, please help. I’m taking in extra salt and as much as I can. I also have an eating disorder. Thanks for reading.

Ray

POTS — actually having a good day!!!!

So, today and the last few days have been really good with the heart rate and POTS symptoms. Maybe it’s because of the extra salt that I’m taking in, or maybe it’s just good luck??? I don’t know, but I’m enjoying it while it lasts!!!!!!! I usually sleep on my couch because it’s elevated because I sleep with my head on the armrest, but tonight I’m going to try and sleep in my bed and see how that goes.

Ray

Echo Today

So, I have my echo today. Hopebblly, nething is wrong. I won’t get the test results back for a while. lly, I can still wear lotion and stuff like that. does anyone have any tips for showering, cleaning the house, and cooking when you have POTS? Have a good day, and thanks for reading.

Ray

Cardiology appointment

Went to the cardiologists today and they said I could have one of three things postural orthostatic tachycardia syndrome, orthostatic hypotension, or inappropriate sinus tachycardia. We have to have an echocardiogram done and we also have to see an electrophysiologist. I looked up what that kind of doctor is and it freaks me out. The doctor told me to stay hydrated taking extra salt and if my heart rate stayed above 130 even after sitting down for longer than 15 minutes I’m supposed to go to the ER for medical attention. They wanted to put a 21-day bodyguardian monitor on me, but my stupid freaking Medicaid wouldn’t cover it. They also want me to wear compression socks.