Angelaintexas

I went to an urgent care clinic and explained that I had POTS, they just looked at me lol -but I said that I am hypovolemic and around 'that time of the month' I just bottom out and need a refill. They understood that and helped me out )

AND I'm sorry you have to do the dreaded tilt table test! -I would rather do anything else than the tilt table again or another stress test. -they are so not 'pots friendly' lol

My 'POTS specialist' in south Texas worked in NY there and speaks very highly if the staff. )

It gave me HORRIBLE headaches! Better yet one constant headache that lasted from about 4 days into it for 2 weeks straight and ended about 2-3 days after I stopped it. Stopped it for a month, then tried weaning on slower... And headaches again!!! -But some people LOVE it and it has helped others a lot. So be open minded -maybe you won't be the one who aims weight or gets headachs - you could be the one that it treats perfectly without any negative side effects )

The truth is most doctors don't believe that POTS and some of the other dysautonomias are actually anything at all. One of my specialists said that trying to convince a doctor of POTS was like trying to turn his religion. I have hyperadrenic POTS. My very first specialist my primary dr sent me to was convinced I had an eating disorder (a lot of the symptoms are the same) and I was a 22 year old Zumba Instructor... I had another (one who doesn't believe POTS or Dysautonomia is actually 'anything' ) he was convinced I was very dehydrated... A few (3) bags of fluid later ... He sent me away saying I would probably feel better later .

Dani, I'm also going through the disability battle. I have been denied once and the second decision is do to come back this month. -Be honest, and yes describe your worse day, be sure to say that not all days are like that- then explain that on your 'good' days you can stay in bed all day and ride to the post office with your husband. And on a 'good' day you can put on make up and go to your sisters birthday dinner.... Then tell then how you willingly do those things knowing your sacrificing the next couple days of being stuck in bed. We're all pulling for you! Wish you the best of luck, and try not to stress out to much about it... Or you'll be no good the day of the trial.! Let us know how it goes. ))

Try to find a new dr. An electrophysiologist. I have 2 POTS drs I see, I live in central tx so luck me I drive 5 hours south to see one of them and 4 hours north to see the other one. Having a doctor who understands what's going on and knowing how to treat you is going to be what gives you your life back. If you have to fly to see a good dr, it will be worth it. And you may only have to come in once and he can keep in touch with your dr in Alaska. )

YES it is a very common thing with dysautonomia. I'm not taking either of those medications, so I'm not sure it they are making it worse. My hair has gotten so much drier, breaks off and falls out! -I started taking Biotin vitamins, and Prenatal vitamins. The second day of taking them I noticed that I was not brushing out as much and I can now take a shower without the drain getting plugged up with hair! Lol

Oh, and I'll tell you like my dr told me.... It's gonna get better before it gets worse, so try to be ready for it. -I know, not good news. But with new medications and unknown side effects and all of the other symptoms that go with the dysautonomias ... Research, so you can recognize something and stop it before it develops more. )

Hey. 24 to F. I've had POTS for just over a year. And I am a paramedic and Zumba instructor. I had to quit working completely and am most day bed ridden for the last 7 months. I am very envious of anyone who can do any form of exercise!! Lol . A lot of people feel better when they exercise, but not me. Will it go away?... 'They' say that since we're young we may possibly 'out grow' it. And a lot of people do. ) -most people fine medical treatments that work for them and give them some quality of life back. ) be patient with the medicine, and do EVERY LITTLE THING your dr reccomends. -BUT if you don't feel like something is working, say so... There are other things he can reccomends. Also try to find a specialist, I have to drive/ ride 5 hours to see mine, and have to stop numerous times because I can't sit that long. We even have to get a hotel sometimes. But it's worth the trip. Good luck to you. )