yogini

Thanks. My BP is definitely not too high. It's around 115/75 or 120/80, which is MUCH higher than it has been in a long time! (I have also been having salt like crazy, even though I HATE it.) The dizziness seems to have gone down somewhat with the hose, knock on wood, but by no means completely gone. I think I just feel weird with the waist high hose, so I will have to try the thigh high.

Thanks to all of you for your replies. Ginger, it probably wouldn't hurt to see both a cardiologist and a neurologist. But neither may be able to answer the question unless they have a great deal of experience treating POTS. During the past 7 months, I have been to 4 neurologists in the NYC area, two of which supposedly specialize in treating POTS. But with the exception of one of these doctors (who unfortunately won't even return my call), none of them seemed to have much of a clue about POTS. We probably all know more from reading on the internet than seeing some of these Drs. (BTW, I have had mild pain in the ears, but a lot of pressure and ringing. I think it happens when my other POTS symptoms are happening, but I am not really sure.) It is frustrating, because all of my doctors new I had the POTS, but diagnosed me with the ear condition anyway. My cardiologist told me that the dizziness in May (occuring 4 months after my POTS diagnosis) could not be related to my POTS, because my blood pressure and heart rate were under control. I think this is totally wrong. Even though my blood pressure and pulse are decent for the most part, right now I am experiencing symptoms of POTS other than the ringing in the ears and the "up and down" dizziness. My hands and legs have been turning bright red, I have numbness, occasionally very rapid heart rate, and severe heat and cold intolerance. I barely had these symptoms on the higher dose of florinef. And I have tried reducing my florinef twice and th symptoms occured both times. I would probably feel better if I just increased it again, but I am going to wait until after my appointment at the Mayo Clinic, which is in less than 2 weeks! I am tired of guessing and trying to figure out my own treatment.

Thanks! I read the posts and noone mentioned having symptoms, so maybe it's just me. I have the pantyhose right now, so maybe I should try switching to thigh high.

I tried wearing compression hose for the first time last week. I understand that the recommended compression for POTS is 30-40mmHg. I bought 20-30mmHg pantyhose to start off with, and I felt slightly nauseous the first day I wore it. The second day I wore it, I had a terrible headache. I am not sure if either of these symptoms are related to the pantyhose or just to my POTS. I'm wondering whether anyone else has experienced any problems or has any advice on compression hose. I have been unable to get in touch with my local Dr. and I will be flying to the Mayo Clinic in 2 weeks. I want to make sure the flight goes smoothly, so I think I need to wear compression hose of some kind. Thanks!

I am a new poster to this message board. It's so nice to see that there are other people going through the same thing. I probably should have posted months ago. Has anyone with POTS ever been diagnosed or misdiagnosed with an inner ear condition? I came down with POTS in mid-Feb 2004. After a few months of fumbling around with various Drs., my situation seemed to be mostly under control with florinef and atenolol. In May, a doctor suggested that I try reducing the florinef. About two weeks later, I started experiencing severe dizziness symptoms which felt different than my original symptoms. I didn't have any spinning sensation. but felt like I or the room was moving up and down when walking and standing (sometimes when sitting). My cardiologist said it couldn't be related to the POTS because my blood pressure and heart rate were under control. I went to an ENT, who gave me an ENG, posturography and rotary chair test. The first test showed a possible ear problem, but the 2nd two test came back normal. I have been going to vestibular rehab for nearly 3 months and it seemed to help and greatly reduce my dizziness. During this time, I also increased my florinef back to .2 mg. I went to see a neurologist in late July who specializes in treating pots. She told me I should try to go off all of my medicines gradually. Again, two weeks after reducing the florinef to .1 mg, I started experincing the same up and down dizziness all over again. My ENT says that it likely isn't an ear problem, because ear problems don't worsen all of a sudden. But he doesn't know for sure. And my neurologist who told me to reduce the medicine isn't returning my call. I have gotten so fed up with all this that I am going to the Mayo Clinic in Rochester in two weeks. But I would love to hear from anyone who has any thoughts on this. Thanks