POTS? Maybe?

TinyBrooke · 12-08-2010

Hey everyone! I'm back! My computer broke and I couldn't get it fixed for nearly a month, but I got my AMAZING boyfriend to install my new hard drive and I'm back! Woot!
So yeah, anyways (I seem to get off topic often...) today was not a good day for me and I started having some symptoms I'd never had before, or at least not as bad as I did today, and from what I've read about POTS they could be related.

I was wearing my elbow and ankle braces this morning because they had been hurting a bit and were fairly unstable. By about 10 am, I noticed that my left hand was more red than the other. I loosened the brace on that arm a bit and kept working in class. A few minutes later I looked again and it didn't look any better, so I took the brace off. Ten minutes later, my hands were fine. The brace hadn't been too tight or anything, but it was definitely restricting my blood flow quite a bit.
Then in the next class period, my foot started feeling funny and cold (which wouldn't have concerned me if both of my feet were cold) so I loosened my ankle brace and once again it didn't help. So I took it off and a while later my foot felt fine.
The next class period was right before lunch and I started feeling jittery. After lunch I wasn't as jittery, but I just didn't feel well. I can't explain it other than it was like I had stayed up for nearly 24 hours and was exhausted, but didn't feel like sleeping. My heart started beating strangely (again, wouldn't have surprised me on its own, I have mitral valve regurgitation) and my head felt weird. I just laid my head down and tried to relax for the last little bit of class.
The next hour was the worst. It was math, and we had a fairly difficult lesson in front of us, but I couldn't focus. My mind was swimming and foggy. I tried to concentrate so I could do my homework later, but it just wouldn't happen. I started feeling kind of nauseous, so I just gave up on trying to concentrate and sat there and relaxed. After about 30 minutes of this, all of a sudden it started letting up and I caught the tail end of what my teacher was saying.
The rest of the day, I was fine, save for a little fatigue and my hands hurting.

It scares me though. I've heard countless POTS horror stories and something that's a motif in all of them is going to the ER to get fluids. I can't deal with that; I have a HUGE phobia of needles.
*sigh* Any advice? I'm going to tell all of that to my cardiologist when I FINALLY get an appointment.

P.S. On a more happy note, I start trumpet lessons tomorrow and I'm getting sized for ring splints on Friday morning!

ReineDeLaSeine14 · 12-16-2010

Be careful with the trumpet okay! I hurt my fingers a few times and got dizzy but my bendiness and large air capacity worked to my advantage.

I don't know. Obviously I can't diagnose you but it seems to me like you're sensitive to pressure. I have Raynaud's and and neuropathy and my braced limbs become colder than the rest sometimes. It could be the MVP as well.

POTS: the big thing is that your heart races when you stand up. Some people get a drop in blood pressure which makes them black out and get dizzy but not everyone.

Actually going to the ER for fluids isn't a regular occurance...only the most severely affected get that treatment. I've only gotten fluids ONCE. There were other times I've needed them but haven't gotten them for one reason or another. Usually the dr will have you eat more salt, be careful when you stand, wear special stockings and take medicines to help control your blood pressure and heartrate. Big thing though is to drink a lot! Mostly electrolyte drinks: I drink Propel for example.

Talk to your cardio and see what he says. Good luck!

TinyBrooke · 12-16-2010

Thanks!
I don't know when I'm going to the cardio next... Probably not soon. As for the heart racing and fainting when standing up, it almost happens sometimes. I'll be sitting very still for a few minutes and then stand up and get really dizzy and black out a bit. I've never fainted from it though. My hands are ALWAYS cold and don't seem to retain heat at all. I also generally run at about 97.5 degrees on average rather than 98.6. Before I figured this out, my mom would never let me stay home when I felt sick because my temperature wasn't in the "fever zone", when a 98.6 is a fever for me.
P.S. I'll probably have my ring splints before I really start playing trumpet-- my band teacher canceled lessons that day.

ReineDeLaSeine14 · 12-19-2010

Yeah some people tend to have a lower body temp than others. I can only really suggest that if it gets really bad to call the cardio and get an appt.

xxBrittany · 01-05-2011

Aw! Glad you are feeling better Brooke, if you ever need anything, you know how to reach me!