Megan

Hi Zach! I don't have much to add to what everyone else has said, although I wanted to mention that Prozac is sometimes used as a medication for POTS, which is why I stayed on it even after getting my diagnosis and knowing I wasn't just a nutjob (which many doctors told me...) Also, You are your best advocate. The more research you can do on meds, your symptoms, tests that might help you get more information, etc, the better, especially with a doctor that doesn't specialize in this kind of stuff. Oh, and my medical cocktail includes Prozac, Klonopin (which is anti-anxiety), Mestinon, Florinef, and Midodrine. I also sometimes use compression hose and drink a ton of fluids. Sometimes even fluids and salt don't help and I have to get saline IV's (I have standing orders to get one. I just have to show up and ask.) A lot of it is just trying different things to see what works. But definitely try to get a tilt table test if you haven't. Good luck with things!

Meg

My sweat test was slightly abnormal...they kept turning the machine up. I thought I was going to die! Anyway, I typically sweat a LOT. There are just some spots that don't sweat at all. I think with our kind of disorders the tendency is to go to either extreme, not at some average level.

Meg

Hang in there!

Meg

Since I've been seeing him I've been put on Midodrine, Florinef, and most recently Mestinon, although technically Bev put me on that one. (I'm still on all of them) The Mestinon is kind of tough on the stomach, especially if you don't eat before you take it.

I am praying!!!

Meg

This is interesting to me, because when I was diagnosed at Mayo, squats were one of the exercises they suggested I do every day. (I don't....) That squats cause so many people trouble makes me wonder why they suggested them for POTS.

Meg

At mayo I was told to drink 4 liters of fluids a day, and I usually come close, but don't actually reach it. I have to pee sooooo often! As far as feeling thirsty, I find that when I feel that way all the time, I need an IV because just drinking fluids won't rehydrate me.

Meg

I'm on both Prozac and Klonopin, which help me emotionally, but as far as going out, getting medical tags and wearing them constantly helped me immensely. I know that if I do pass out in public, EMT's will know why (or at least see what it is, even if the dr's at the ER have to look it up...) I have my meds listed on my tags, also, so I know I can get them if something happens and I'm in the hospital without them. Medical tags are pretty easy to get and you can get them in necklace or bracelet, whichever is more comfortable. Maybe that would help a little with leaving the house?

Meg

Totally non-related. My middle name is Michele with one "l" and I've never seen anyone else spell it that way before, so I got a bit excited when I saw that you did!

Meg

Hi Marti! I hope you find some comfort in numbers here! As far as dehydration, I have standing orders from my dr to get an iv (no more than once a week, one liter of saline) after I have an "episode" of pots. I don't know if that is feasible for you, but maybe it could be an option. Also, have you seen a urologist or something? Maybe it's not a UTI and that's why it won't go away?

Meg

Good luck with your appointment! A couple of years ago I spent an entire summer almost crippled with stomach pain and on vicodin (almost got addicted...it was before my pots diagnosis) However, I am almost positive this was pots pain, as I still get it now and have talked with my dr about it. Yours sounds different, though, so I'm glad you went to see your doc!

Meg

Here's my two cents on that...If I'm not healthy now, then I'm not enjoying life now and don't even want to think about the future. So as far as the hidden side effects, taking the florinef is what I have to do, so I do it, and just watch my health and watch for any weird signs. (difficult when pots is so weird anyway...) Anyway, my point is, if it's the only thing that helps you, it's probably worth it. Just a thought.

Meg

I'm so sorry that nothing has seemed to help. I am on a handful of meds, but mornings are also difficult for me, so I find that it's best to take my meds, go back to bed for half an hour, and then get up and slowly get ready for my day. Rushed mornings kill me! All I can think of is trying to talk to your doc about this (if you haven't recently...and keep asking if you don't get answers!) I'm praying for you and your daughter! Hang in there!

Meg

I had to fight a ton of doctors! Luckily my family did believe me. As far as a dr in the Toronto area, I'm not sure, but I think somewhere on the site there's a list of doctors...maybe that could help you. Anybody want to help me out with the link here?

Meg

I had the alien abduction jokes too! Just to add, I also sweat a lot (I always say 'like a man') and run a low temperature. And I fidget all the time, since I was little. I've since realized that when I fidget it helps keep my blood moving. If I don't fidget, my hands and feet go numb (not enjoyable). I hope your test results show something (even if it's not a good thing, it's always good to know!)

Adding to Ernie's post, maybe you could get a camping cot of some sort to use?

Meg

Cold fluids and popsicles help with the cooling down some. I also tend to walk around in very little clothing when I am in my dorm room alone. Just a couple of little tips that I can think of. Oh, I have this spray bottle with a fan powered by batteries that I use, not sure where it came from, but it's nice to spritz myself and fan myself a bit when I get too hot. I hope your ac thing works for you!

Meg

First of all, pickles=ridiculous. Hang in there, hun! You're in my thoughts and prayers!

Meg

My sister's ANA was due to Lupus. (not sure if this is relevant, kind of foggy right now!)

Meg

A slightly unrelated thought - singing gets to me sometimes just because of the breathing patterns. It makes me dizzy/presyncope-y. I've never had the other problems, though

Meg

ps-corina: sometimes dr's bother me when they are like that! :-)

Have you had your thyroid checked? I'm not sure if the symptoms match, but that's the first thing that came to my mind.

Meg

I have to stay on a low dose of florinef so my bp doesn't skyrocket, but at a low dose it definitely helps.

Meg

I think I saw that you're from pennsylvannia...would toledo be closer than vanderbilt for you? Dr. Grubb at Medical College of Ohio is my doc and is great with POTS stuff. Maybe you could get a referral?

Meg

I'm glad you have some good news in all of this!

Meg

That's great! It also gives me hope, as my POTS was likely caused by a virus, also. (And since I just turned 20 my dr thinks I have a good chance of growing out of it.) Glad you're doing well!

Meg