yogini

Thanks for the article. It's interesting that you bring up geography, because I have been wondering whether it's a factor in POTS. I may be over-generalizing, but it really seems like most of the posters on this site are from the East Coast or Midwest of the U.S. I wonder why there aren't more people from the West or Southwest...

Susan, I think it's pretty normal to have the kind of swings in BP you are talking about. Normal activities like eating, bathing and walking have a big effect on BP, and medicines too. When I have been hooked up to a constant BP monitor, I have noticed swings like you are describing even over a short period of time and the drs said it was fine. -Rita

I laughed when I read your post. My parents (who were just visiting for the holidays) are really overprotective too and barely let me go out in the cold. I can see how you are going a little stir crazy. I agree with Katherine that it's helpful to push yourself a little bit, without overdoing it. Maybe your doctor can talk to your parents and convince them it's a good idea for you to spend some time out of the house? You could start with something small (like just going right outside of your home for 5 or 10 min every day) and then build up to going to stores and other places you want to go. If they are having trouble with the wheelchair, maybe it would help for them to think of it as temporary - as if you had broken your leg or something. Hopefully you won't need it after you see the POTS doctor and get the right medicine. Good luck, Rita

Sue, I don't think you are paranoid. At Mayo they gave me a really good explanation of POTS. They said that I would continue to improve over time, but that I should also expect to have setbacks from time to time too, which could be triggered by overexertions, hormones, or no reason at all. They said it is just a normal part of POTS, and it didn't mean that I was regressing back to my worst. The best thing to do during these times is to take it as easy, just as you are doing. You should sit up or walk around a little bit in your home if you are able to. But get loads of rest and hopefully it will pass soon. Feel better soon, Rita

Diane, Sorry you are having a hard time. I have POTS, but you can definitely have dysautonomia without having POTS. Here is a link which lists the different types of dysautonomias, and POTS is just one of them. http://www.ndrf.org/autonomic_disorders.htm -Rita

Another big problem with alcohol is that it dehydrates. My hangover days are far behind me, but I love a couple of cocktails or glasses of wine. I've had drinks a few times since getting POTS, and didn't have any problem. But I had a big crash in July (unrelated to drinking), and I am still not better. I haven't had alcohol for the past few months, because the risk doesn't seem worth it right now.

that is so disappointing and ridiculous, too. he could have at least examined you before jumping to conclusions. it is great that you have such a supportive family, though. when i read your post i thought of calypso's story from the other day about how she went to see a psychiatrist. the psychiatrist told her she wasn't crazy and got her an appointment with an endocrinologist. maybe a psychiatrist could confirm it isn't in your head and help you to see the right kind of doctor

Happy holidays...here's to a healthier 2005 for everyone!

Mindy, I agree with Calypso. You'd mentioned in an earlier post that you are on a whole bunch of meds. Weight gain (especially if it was a lot of weight quickly) could be a side effect of some of your meds (or your meds could have screwed up your thyroid, etc.). You should definitely check in with your POTS doctor. Also are you able to walk with the blood clot? When I can't exercise (which seems to be most of the time these days), I just walk back and forth in the hallway in my apt bldg or at work. Of course people must think I am crazy, but it seems to help slightly with my energy level, tachycardia and weight too. -Rita

Great news! Keep us posted...

Hey Gena, I sometimes get nightmares because my heart is beating too fast or because I have to go to the bathroom. I think my body is waking me up to tell me that something isn't right. Also, are you taking any other meds or supplements at night other than the Klonopin? It could be a side effect of something or could just be the POTS. -Rita

What your doctor is telling you doesn't sound right. POTS is not based upon reaching a specific HR, just having an unusual increase in HR. And many of us ave the symptoms of dysautonomia even on days when our BP and HR are in the "normal ranges." This really strikes a nerve for me, b/c I have gotten seriously wrong advice from doctors this year (one of whom is listed on several websites as being an autonomic specialist), which landed me in the hospital and also sent me on a three month wild goose chase where I thought I had an ear problem in addition to POTS. Of course in the end I learned that all my symptoms were classic POTS symptoms which the drs didn't pick up on. There are a lot of drs who know a little bit about POTS, but a little knowledge can sometimes be dangerous. So I if you feel that the symptoms are caused by POTS/NCS, trust yourself.

Welcome to the board and sorry you are going through so much. Since you faint all the time and your HR fell on the tilt table test, i am wondering whether maybe you have neurocardiogenic syncope? Have you seen a doctor that specializes in dysautonomia? There is a lot of great info that you can read (or print and give to your doctors) on potsplace.com and ndrf.org, including a list of treatments and doctors that might be able to help. There are lots of folks on this site that suffered for years and saw dozens of doctors before figuring it out. You still have a good chance of improvement if you get the right doctor to work with you to find an appropriate treatment. -Rita

Tearose, Please take care of yourself. I hear you when you say you want to live a normal life. It's hard to know when to say when, so it's not your fault. I hope you recover soon and have a wonderful and restful holiday season. -Rita

I definitely get dizzy when I get high BP. Have you tried a beta blocker to hel;p with the BP issues?

At Mayo they told me to try Mestinon, but I haven't yet. They told me that it somehow causes your BP to rise only when standing. That is probably why your BP is going up when standing, and it may be why your HR is going down when standing. (HR is sometimes inversely related to BP). You should definitely talk to your doctor, though.

Thanks so much for the article! I also sent it to my family and friends. I noticed that the reporter included his email address at the end of the article. I am going to email him and thank him for writing the article. I also wonder if he would be willing to write more articles about POTS/dysautonomia. I think awareness of this condition is so important. Someday, when I feel better and have more energy, I would be interested doing things to make the community more aware of POTS through DINET or otherwise. -Rita

I read somewhere (maybe in the instructions that come with the hose?) that the hose will last longer if you don't wear lotion. I also wear the thigh high kind, so I am worried they will slide down (more than they already do) if I wear lotion.

Thanks for your responses. Ah, the joy of having the weird symptoms of POTS! Tearose, I do get dry hands too. I have always had pretty dry skin - my mom has it too. It does seem to have gotten drier with POTS, though. The worst is on my legs because I am not supposed to wear lotion with the compression hose. Like someone just said in another post, it is so hard to tell what's POTS, and what's not! I'll definitely have to try sleeping with gloves on, thanks for the idea. -Rita

I don't know if a beta blocker can cause your HR to go down when you stand up. That has happened to me a couple of times, but usually my HR goes up, way up! My BB has definitely caused my HR to go too low sometimes. It has happened to me when my BP goes too high that my HR is in the 50s/60s standing, when it is usually in the 90s/100s at the very least. I do feel really funny during those times, although I don't know if it's because of the high BP or the low HR. At these times I've usually had to adjust my medication. How is your BP and how are you measuring your HR when standing? If I leave my heart rate watch on, I can see my HR the whole time that I am standing. In the first few minutes, the HR is a bit all over the place, but it usually settles down into a range after a few min. -Rita

I know many of you have pooling in the arms and legs. This was worst for me in the beginning and my hands and feet used to be purple and painful. It has gotten a lot better now, but I still have it on and off. (At the same time, sometimes my hands turn really white, which is weird too) I have been having tons of salt and loads of fluids too and my BP is about where I want it to be. (Knock on wood it will stay that way) But my hands and legs seem more red these days. I am wondering whether anyone experiences this when their BP is in the normal range. Could this be caused by increased blood volume, or is it still the problem with my veins not constricting properly? I know this isn't serious, but just wondering... Thanks, Rita

Angela, I have read some of your posts and wanted to wish you luck with the move. You made a tough decision, but it seems like the right one. I live in NY and it's a tough place to live in with POTS, with all of the sights and sounds and difficulty getting around. I hope you will be back on your feet and back here soon! In the meanwhile, it is wonderful that you are able to live with your family and that they can support you through this. -Rita

Beverly, I am so glad Nicole is doing a little better. I thought beta blockers were supposed to slow you down and make you sleepy, but I guess anything is possible! I also wanted to add that I had horrible side effects for the first week of taking a BB, but I hung in there and then they went away. For some BBs, once you start taking them, it can be dangerous to stop abruptly. So I would check with the doctor about taking it intermittently if that's what Nicole decides to do. -Rita

Merrill, That is really funny! I constantly buy and return things too. Must be a symptom of dysautonomia. I read that some stores are now banning people who return too much, and am scared that that will happen to me! -Rita

Nina, Congratulations! I am always impressed by reading your posts in how you are able to juggle work and school, and give so much to DINET, all while dealing with POTS and other health issues too. It is inspirational to many of us who hope to become more active someday. I hope you have a wonderful and relaxing vacation (although I am very jealous)! -Rita