Sarah

Rhada, if you don't mind me asking...what are your migraines like(symptoms)??

You are all so nice and thanks for the info. I too am a RN. I think I've lived with this disorder long before diagnosed because I didn't know anything was wrong with me until I got on the meds and realized what normal was. Like I said, I was at a new school and kids thought it was weird that my hands shook so bad...yet my family nor I ever noticed. My IC is under control finally. I was in and out of the ER with "UTI's" Once I was passing large blood clots (you get the picture I don't want to be to graffic, it's gross). I was put on Elmiron for about 6 months and they also inject some type of medication into the bladder. Now I just drink a lot of water and say away from carbinated and acidic things. I'm told that it can flare up with pregnancy, but they can inject that med, which doesn't harm the baby and takes away the pain. Those with IC....what have they done for you??? I would go insane if either my POTS or IC wasnt under control. And that is so awesome to know you can breastfeed with Toprol. There seems to be so many young people with POTS....they kept trying to reasure me that most young females grow out of it...I knew that wasnt the case...I wish there was more awareness so that more young people could get help sooner ...IC is seen mostly in young people too so I'm told....I really believe it is the high intake of Pop/Soda. That stuff is good, but potent.

The loss of vision, everything goes black. Your heart starts pumping extremely fast called tachycardia. Your heart is trying to compensate for the pooling of blood to your lower extremities. In short, your not getting enough blood to your brain... the best thing I have been told to do, which does help me, is to curl up. It makes since with gravity and all. For me this happens more often when I go from lying to standing especially when heat is involved because heat dilates the blood vessels increasing the pooling of blood to the feet causing the heart to have to pump faster and harder. I've always thought this was one of the main problems with POTS. It is very scarey...and I can't say you'll get used to it, but I have. My medications keep this under control for the most part and I experience less frequently than ever. Do you have times when you sit (and don't black out/loose vision) but your heart races for what appears to be no apparent reason, and it feels like there are books on your chest or glue in your lungs and you can't catch your breath because your heart is beating out of your chest? This is another common problem I have kept under control with my meds. Toprol XL (for the tachycardia) ProAmatine/Midodrine (for the low BP) and florinef (help retain water) and a high salt diet.

I was diagnose with POTS when I was 15 and have been taking Toprol XL (Lopressor) ProAmatine (Midodrine) and Florinef everyday for the last 7 years...I don't like the idea of being on these meds for the rest of my life and would like and alternative, as i'm sure all of you. But the meds make me feel great and I have no complaints really since I've been on them. I am conserned because I would like to have a baby....but i don't know what to do about the medications. I was also wondering if anyone has interstitial cystis....it is where you feel like you have a bladder infection all the time....but you don't. There is no bacteria, your bladder is inflammed... When I was 15 I didn't realize my hands shook, kids at school told my mom...I was tested for hypogycemia first. I shook so bad that I had a hard time getting fries into my mouth at lunch and had to use to hands to drink a can of pop. Once I was also clumsy.. Once I started the meds, I'd have spells of palpitations, blackouts...but never passing out...just crawling around on the floor waiting for my vision to return, numbness of lips hands and feet, anxiety, and at times my whole body felt as if it where shaking inside...till this day i don't see my hands shake...but everyone else does... Is anyone else on these same meds, or have any of these disorders? And to add the the midodrine discussion....After about a year the itching and crawling of the skin stopped. Even when i forget to take it for a day i still don't experience the sensation.

Has anyone had a baby while on Toprol XL (Lopressor) florinef or ProAmatine (Midodrine)??