theterrordactyl

He meant that it was embarrassing to him.

I'm also a 20 year old girl with POTS. It gets better!

I was diagnosed when I was 15 and missed a year and a half of school. I was pretty much unable to get out of bed for more than a few minutes at a time for a year of that. I was going to my cardiologist once a week, and that was the only time I left the house. I was taking 50+ pills a day. It was rough. I'm pretty sure I watched everything on netflix.

Now I'm in college (in the year that I should be), got into medical school, barely even have symptoms most days, and am only on three POTS meds. Life is awesome. You'll get there too, don't give up!

Some tips I picked up along the way:

-Gatorade and salt pills are awesome at getting your blood volume up.

-If you feel like you're going to pass out, wrap your legs around each other and squeeze, it'll help force some blood up into your head.

-If your hemoglobin is low, talk to your doctor about procrit. I think it's usually used for cancer patients, but my hemoglobin was in the oh shit range for months and once I finally got it back up I felt so much better.

-In general, look into midodrine. I've been taking it every 2-3 hours for 5 years, it is enormously helpful.

If anyone has any questions or anything feel free to message me about it.

I have had to teach so many doctors what POTS is. It's actually pretty sad.

You're lucky you got diagnosed quickly! It took me over 6 months of 3-4 doctors appointments a week, during the course of which I got told I was lying about ten times and that I had two different types of cancer. It was awesome.

Not OP, but I did get told I might have a structural defect in my heart at one point, that was pretty scary. (I don't.)

Anyway, right now I can take OTC medications normally, although I do read all the labels carefully, and I don't have to go to the doctor over minor things. I do get way sicker than normal from a cold or something though, and my immune system is pretty shitty so I get them all the time. Back when I was on a billion meds I had to clear everything with my doctor though.