LastUnicornLady

Thanks everyone! We had a little confusion with my doctor's appointment, because somehow we managed to get the wrong date... Thankfully the office called for a confirmation! I'll be bringing up the migraines when we go to my appointment tomorrow. I glad (???) that this is a common symptom. It's nice-ish to know that I'm not the only one who's experiencing this. Liz, I don't believe I have BP issues, but I guess they'll be checking on that at my appointment. I suspect we're also going to get some bloodwork done to check my electrolytes and all that checked. I guess I'll have to post an update sometime next week, as I will be unable to get to a computer over the weekend.

Hey, everyone! I've started having some pretty nasty migraines this past week, pretty much every day. I don't think it's a normal tension headache, because it's not responding to Advil at all, even though I normally do pretty well. I took the maximum dosage, and saw absolutely no improvement. Also, i've had a lot of light/noise sensitivity, and it just feel different from a "normal" headache, ya know? I was wondering if migraines were common with POTS, and what you guys do about it. I have a cardiology appointment this week, so I guess we'll see what he says. We may end up being referred to a neurologist, and I guess that if he can help, we'd be happy to go see him. But we don't want to keep bouncing from doctor to doctor all the time. I mean, I'm a little worried about raising red flags for Munchausen syndrome. Ah, well. I guess I'll give you all an update after the appointment. Do you have any tips for dealing with these pretty debilitating migraines until then??? Any advice is appreciated! Thanks all!

I may fit the thin and pale stereotype, but not tall. At 5'4", I'd hardly call myself tall. Before POTS, I weighed about 113-114. Now, after taking Florinef for several months, I'm at 103-105. Humph. I never had much weight to begin with, and I actually managed to LOSE weight on a steroid. 10 lbs. that I never had to spare! Some people just scoff when I complain about weight-loss. I guess they don't really get that skinny girls have problems too, and I sure don't try to lose weight. (No, I'm not anorexic.)

It's really interesting to read everyone's responces to this, and I hope it made you laugh a little. Sometimes you just need to laugh at the absurdity of it all. I mean, here I am, feeling the worst I've ever felt in my entire life, and you're telling me I'm imagining it? I had never experienced this extent of exhaustion, pain, etc. until now... I could never have thought it up on my own. Or when they "try" to relate, but it really only ends up feeling like they've implied my problems aren't really a big deal. That they're normal, day-to-day issues that everyone has. Or when they tell you that you just need to exercise more... WHAT?!?! I was an icredibly active tennager in the prime of health, when all of a sudden I could barely make it through one class. What the heck?! I was excercising three times a week before I got sick. How would "just excercising" or getting out more cure me of the very illess that took away my althetic abilites??? I don't get it...

What are some of the most frustrating things about people's misconceptions about POTS and dysautonomia?

Hello, POTSies. I'm kind of new to this whole thing, having only been diagnosed with POTS a few months ago, and we're still struggling to find the right medication for me. I've been having trouble sleeping for more than a week now, and I was hoping you guys would share some tips for falling to sleep faster, and getting a more restful nights sleep. I know sleep issues are common with POTS, but I don't really know how to start trying to fix them. If possible, I'd like some home-remedies, natural tips, etc. I want to try things like that before I try any sort of medication. Also, I've heard that elevating the head of your bed helps some POTS patients, and I was hoping you could share some low-budget ways of doing that. I tried just using multiple pillows, but I'm not sure if I was doing it wrong, or if it just doesn't work, because it only served to give me a neckache... Thanks everyone!