Alma

I am using my grandmother's old walker. It doesn't help that much most of the time, really, because I'm still upright when I use it. It does give me a place to sit down if I need to, though, which is useful when waiting in lineups.

I get tingling and numbness in my pinky & ring fingers, sometimes extending up the side of my arm up to the elbow. It happens when I stand up too long.

I have wondered about this, too.

Statistically, most people with POTS are under 50.

There is no cure for POTS, so what happens to them?

POTS does not kill us directly, but it stands to reason that they must be more susceptible to seemingly unrelated causes of death.

Yikes.

Let's stay as healthy as we can!

I had a really hard time standing today, but my hr is no worse than usual (around 135 standing, 90 sitting, 68 lying down). So I took my blood pressure lying down (84 over 53) and then standing (96 over 82). The standing numbers are actually more normal, so why do I feel so bad? Can it be because there is not enough difference between the diastolic and systolic numbers?

I have heard of high and low blood pressure, but is there any such thing as blood pressure with numbers too close together? I have noticed before that on my worst days, the numbers seem to be closer than about 15 or 20 units together, but not necessarily too low. For example, sometimes I am 80 over 50, but I feel better at that than I do at 80 over 60. Does that make sense?

I don't want to bring it up to my dr if he's just going to brush it off. I like to be selective in what I say, so that he takes me seriously.

I have hippus, too. Pupillary athetosis. I wonder if it causes my vertigo.

I have a problem with burping when I am pregnant... It is my first sign of pregnancy, lasts the whole time, and magically disappears as soon as the baby is born. After 5 babies, we know when I am pregnant just becAuse I start to burp! Obviously, I am not suggesting that you are pregnant, Mike, but thought I would share just because it seems to provide some evidence for a possible hormonal link.

Thanks for this info! I will post when I get the results.

Thanks, ANCY. Is that a pots thing, not breathing deeply enough? Breathing must be regulated by autonomic system, right? I'm new to this.

I went for arterial blood gas today. Has anyone else had one, and did it show up anything unusual?

Thanks, ks42 and corina, i do appreciate your input. I will look into it on YouTube, and stay away from blogvertisements. Right now, I am trying water, salt and compression socks, but the only 'cure' I have found is lying down. It works every time!

Has anyone tried this? I found what I thought was a blog (wheelchairtorollerblades) about it, but there are only 3 or 4 posts, and I think it may just be an advertisement for this "DNRS." Has anyone heard of or tried this?

I get funny readings with oxygen sometimes, too. Sometimes it tanks when my symptoms are bad, sometimes not. And then sometimes it tanks and I feel fine. I know that I REALLY like when they give me oxygen. It clears up my vision and everything....let us know how your oxygen does overnight.

Thanks, Stellaluna, it sounds like we have a lot in common! It sounds crazy, but I think I preferred it when I thought I needed open heart surgery to this we-can't do-anything-for you and dismissive attitudes from doctors! I am in a situation where my cardio sent me for heart surgery, and when I got there, they said, 'you're fine, go home,' I just want this fixed, but it seems like that may not ever happen, the more and more I read. Glad to know I'm not alone in this, anyway.

I have gone numb before, in both hands. I couldn't drive for a while because I couldn't feel the steering wheel. It was during my first pregnancy, was on and off throughout the second trimester. I don't think it was migraines, though. I get those visual ones from time to time, much like Bigtrouble's description.

Thanks so much! Hello to everyone. This seems like a very welcoming, and a very informative forum. I'm glad to have found it.

I'm so sorry you had to go through that. I haven't had exactly that experience, but I was crying during my recent transesophogeal echo, and I was very embarrassed about it. The nurse said it was the Valium that they had given me for pain relief during the procedure making me cry. But it is very embarrassing, and I can empathize with you.

It is too bad that the well-meaning lady couldn't just back off and respect your request to be left alone. How annoying!

Thanks so much for your kind replies! I am glad to know I am not alone in this, because it really scared me to see such a low HR. Ancy, you pass out several times per day? Is that because you need to try to do things standing up for too long (washing dishes, etc) or is that because you don't have enough time to even go to the washroom or walk to another room without passing out?

I have 5 minutes or so before I pass out, so I have been staying pretty seated so that I don't pass out, and that has worked fine for now. But my dad and my husband are doing all the work around the house, so all I have to do is walk from room to room, and go to the washroom. I am worried about what will happen when my dad goes home, and I will be home with 5 kids to feed and care for every day until my husband comes home from work.

I am not used to this illness yet, and I really don't know what to expect.

Love it! I linked to it on my blog.

I did several poor man's tilts for the doctors when I was hospitalized last month, and they all showed tachycardia on standing. Supine HR would be around 65, and standing would go up to 130 right away, then up to 140-160 before I would fall over (but with enough control to fall towards the bed).

Now that I am at home, I have been largely at rest, and have not pushed myself to the point of passing out. Until Friday, when my husband bought me a blood pressure monitor and I did my own poor man's tilt test:

Baseline (after 10 minutes supine): BP 96/65 HR 72 Subjective: Feeling fine

2 minutes standing: BP 91/75 HR 93 Subj: Starting to feel like I wanted to sit down, lightheaded, weak

5 minutes standing: BP 88/74 HR 110 Subj: Feeling really bad, horrible headache, had to lean against the wall

8 minutes standing: 111/93 HR 39 Subj: Ready to pass out, so couldn't wait for the 10 minute mark

It was the heart rate that scared me. I've never seen it like that before, and didn't even know it was possible. Does anyone have any idea what that was about?

*edited for typing error

I think MVP is related to dysautonomia, in the way that ED is often related. Whether there is a causal connection going one way or the other, who knows, but it seems to be correlated for a lot of people.

This book says that 40% of people with MVP also have dysautonomia, which they also call Mitral Valve Prolapse Syndrome.

http://www.amazon.com/dp/1572243031/ref=rdr_ext_tmb

Makes me wonder whether having my valve repaired would help my symptoms after all.

Stellaluna, you say you have become increasingly POTS symptomatic in the past 6 months. Me, too. Is your regurgitation getting worse? Mine has.

I'm chemically sensitive, too. I actually wonder if it's an autonomic problem that makes me very sensitive to chemicals and medications.

I had a similar experience here. I just don't think many doctors know much about this. Indeed, the head cardiologist at the hospital I was in told me that he didn't know if there even are any specialists in this province! There is a list of specialists on the main page of this forum, maybe they'll have someone listed there in your area. I wish you all the best, it certainly is frustrating.

And the gyms would be full of recumbent machines, and even flat-on-the-back bikes like the ones for bicycle echos! And there would be oxygen bars everywhere!

I was just joking withy husband that I would do really well on the moon... Have you ever seen the Star Trek ds9 episode with the alien woman who was unaccustomed to our gravity? She basically had POTS!

I am trying to do the poor man's ttt at home. Resting heart rate 65, resting bp 95 over 70. When I stand up,hr goes up to 100, but the bp machine gives me an error message -- error 5: remove clothing on upper arm. I am not wearing clothing on upper arm. This is a consistent problem, can't get bp when standing. Is it a cheapo monitor, or is it a problem with my bp when I stand? Any wisdom would be much appreciated.