bjt22

Just wanted to add that in addition to a beta blocker and mestinon, Catapres has helped me a great deal, too. I realized how much it helped with these symptoms a few years ago when we tried to reduce the dosage...not good. Not good at all.

I understand. As Ernie said, beta blockers can help with tremors. The shakiness, overall weakness, though, is a problem, isn't it? Its where I'm at a good portion of the time. I can't offer much, but when I started taking Mestinon a few months ago, I think these symptoms were helped somewhat.

I had more problems trying to take atenolol that I have ever had with any other drug. It was so bad that I wouldn't even consider another beta blocker for years. I've been able to tolerate another beta blocker quite well, though. Atenolol is a "selective" beta blocker. There is some evidence that POTS patients might do better with less "selective" beta blockers. How do you do on the atenolol? I guess that's the question. If you feel it helps instead of hurts, then why change? If you think the results could be improved upon, then I'd probably give the other a try.

I'm on this medication. I have been for several months now. There has been studies that show that it is a helpful drug for POTS patients because of its action on acetecholine (sp?) receptors. It did not help my orthostatic issues, but, I did notice that I have less muscle weakness and over all shakiness. These have been huge issues for me, so any help along the way is worthwhile. Its also helped with digestion....its actually speeded it up a bit, which again, is a very, very good thing for me. I had a difficult time with this drug for the first few weeks I took it. Strangely enough, it seemed to really do a number on my ability to maintain blood sugar levels. As it would start to decrease in my system, I'd have a heck of a crash...now, it could be that it crashed my blood pressure controls and my blood sugar levels followed, but it did take awhile for me to work out a way of taking it without having this be so much of a problem.

Hmmm.....I just seem to attract the very elderly. They seem to always sense when I'm needing help when I'm out. Not sure what that's all about.

For me, a glass of wine works quite well....and probably has far few side effects.

That's where I'm at. There's just a lot of people I've found I'm much happier not being around. Why spend time with those you really don't care for? And if anyone asks, these days I'm putting it down to "getting old and set in my ways". The real kicker is that those who were the first to exit out of my life were the ones who had always expected me to listen to their problems on a regular basis. Over and over. I suppose they just didn't have any room in their lives for anyone who just might need a little something from them now and again. Obviously, they were much more interested in taking than in giving. Good riddance.

All I can say is thank God my boobs decided to cooperate! I've heard that about breasts and cardiac testing, though...not sure what I should take away from it since mine apparently didn't get in the way.

Sara - Glad I'm not the only one here with a fast heart rate. My resting rate rarely goes below 80, and it's not uncommon for it to be 100. That's usually when I'm most symptomatic with POTS - if my resting rate is around 100, then it will probably be 140-150 as soon as I stand up. If my rate is slower (like 80) my heart rate jump is not as much when I stand (might only go up 25-30 beats or so). Actually, I'm sure I read somewhere that most people with POTS have fast resting heart rates, but maybe that's not the case - doesn't seem to be here. Summer Without meds, my resting heart rate was usually between 100-125 bpm. It would go up to 160+ upon standing.

I would be more than happy to have your numbers. Even with meds, my total is always between 215 and 250. My tryglicerides are borderline at best. All of this while eating 1500 calories a day and not being menopausal yet. I took Zocor for several years, and I didn't even register a difference. I switched to Vytorin when it first hit the market, and my numbers are a bit lower than before. And I agree...the differences between your two tests are particularly significant.

Yes...thank you for bringing this up. This happened with me, but fortunately, I had a cardiologist who did understand that losing my blood pressure was part of my autonomic dysfunction and not an indication of coronary artery disease. I had the thallium stress test which helped us decide that most likely, I had no major blockages and could probably skip a catheterization for the time being. When I had the test done, I explained to the technicians that this was likely to happen, but they were still totally freaked out by it. They didn't even want me to continue after losing my blood pressure from just standing up. But by God, I'd come that far, and I wasn't leaving until I tried! I only managed to stay on for about four minutes, and they would only allow it with two people holding onto me. They were very happy when I got off. I wasn't on long enough for the exercise part of the test to make any real determinations, and I did have a few questionable ECG changes, but having that thallium scan did put me at ease...well, enough at ease to forgo more immediate testing. Somewhere down the line, however, I'm sure I will as I'm not getting any younger and I do have high cholesterol. As a test result that allows for quick understanding, though, it is helpful...but yes, by all means, be prepared to deal with the question of further testing.

Its useful to have if other doctors question your diagnosis or have a difficult time understanding your problem. I had one tilt, years and years ago when my symptoms were actually a bit different. No one has ever seen the need to have me have a repeat, however. A couple of years ago, I had an exercise stress test. I lost my blood pressure upon standing up even before I got on the treadmill. I managed to stay on the treadmill for less than four minutes, and I was unable to sustain a readable blood pressure during that entire time. This was very useful information, because health care providers are much more familiar with the stress test than they are with the tilt table test. Therefore, it was very easy to understand why I might say I felt awful....they could see that when I'm upright, I don't have a measurable blood pressure. They could somehow relate more easily to this. As to treatment, beta blockers, etc. I would love to tell you that there was a drug, treatment or combination of the two that would make you like you used to be. Some people are lucky and get really great results. For many, though, its a question of whether we feel kinda bad, bad, or worse. Its a give and take. Often, though, after a while, the side effects of beta blockers diminish quite a bit. For the first month or so I was on the one I'm on now, I felt quite drugged. Better, but drugged. This did improve. I'm not sure I have any particular side effects from the beta blocker now, but it does what it does, you know? It keeps my heart rate from going crazy, it helps keep my blood pressure more stable and improves the level of chest pain that I have.

I've been taking this drug for a few months in addition to the other drugs I've been on quite awhile. It has been helpful, but its not a cure. It hasn't helped with the orthostatic problems at all, but many of the symptoms of being orthostatic seemed to be reduced a bit. I still have a lot of muscle weakness, but it doesn't seem quite as severe. I have less shaking, I believe. And not least of all, my digestion seems to be a tad improved.

I've never heard of any doctor wanting to medicate a person to keep their heart rate in the 50's. And actually, people who are smaller tend to have FASTER heart rates, not slower heart rates. That's why adults have heart rates lower than they had as children! For what its worth, when my heart rate gets down into the 50's, I'm very, very sick. With several medications, my resting is still in the 70's or 80's.

Beta blockers have been considered part of "standard care" for NCS/POTS. Like all other drugs, sometimes they are helpful, sometimes they aren't. The thought with NCS is that a beta blocker can attenuate the response that leads to a syncopal episode. How often it actually works this way is up for debate. I take a beta blocker, but I'm POTS/autonomic neuropathy. Even with very low blood pressure, I feel better with the beta blocker than I do without. Ofcourse, the beta blocker helps keep my heart rate and rhythm in line, but it also keeps my blood pressure steady, even if it is on the very low side. Steady low blood pressure feels better for me than a blood pressure that is moving around all over the place. If her son wants to continue with his athletic pursuits, I would be very careful with a beta blocker, however. They can cause individuals to have a difficult time raising their heart rates while exercising.

I tried it a few years ago with no luck. It made my chest hurt even more, and while taking it, I felt as if I were walking around carrying huge weights. Needless to say, this made me more fatigued, not less.

None of us are perfect parents. We all fall short in some ways. I've probably have a much closer relationship to my children due to having had this for so long. I'm here at home all the time, so I'm the one who has the long, long talks with the kids. In the long run, I think this has been of far greater profit to my children than being able to run them here and there, day in and day out. And we will feel some "Mommy Guilt"....it does go with the territory. We live in a society that practically enforces it. Keep it in perspective. Parenthood is great, over all, and its a shame to waste the good times over worrying about things we can't help anyways.

I"m not anxious or depressed. I took Welbutrin a few years after I had tried the Zoloft. At first, it seemed to minimally help, but I could never get up to a dose beyond the lowest levels. Still, I took it along with other meds for a few years. Eventually, not thinking that I was getting any benefit from it, I quit....I was right, evidently I was getting no benefit as I felt no different after stopping it and my symptoms didn't change one way or the other.

I think most people equate anxiety with "nervousness"....you know, how the older people used to say "I'm a nervous wreck!". There are some who believe that anxiety and depression have similar root causes. A lot of people who have trouble with one will have trouble with the other. The only experience I've had with depression was the one I talked about when I was first on Zoloft. I don't have anxiety, either...in fact, I'm too far the other way. Things that should scare me just don't. Many people will have the type of anxiety you describe with POTS as well as with other cardiovascular problems.

Oh, and as to suggestions for energy conservation: Definitely keep drapes closed. In fact, make sure you have heavy drapes. We are putting up what's referred to as "black out drapes" on all the windows at the back of our house as this is where the heat comes in during the afternoon. We also want to do another layer of insulation in the attic. Because of my need for constant air conditioning, our electric bills are astronomical in the summer. Most of the things we do that would help our houses stay cool in summer will also help them be easier to heat in winter....and I have little doubt that natural gas costs are going to be on the rise, too. Humidity does bother me....sometimes, when it isn't even that hot outside, I'll turn on my window air conditioner in my room just long enough for it to sort of de-humidify a bit. It really doesn't take that long. Maybe that would help you...could you turn the air on for about a half hour before you go to bed?

I have problems with everything when the humidity (and the temperature) is high. I run the central air in my house as well as a small window air conditioner in my room. Even so, my body seems to just KNOW that its nasty outside. Even though I have not stepped out of the door of my doubly-air conditioned house in the past two days, I've been feeling really bad. All symptoms are worse, and the freakin' headaches are wanting to start up. Last summer, our central air died. Ofcourse, when your air conditioning goes out, there will always be a heat-wave. Its a law of nature. I went from bad to worse within the few days that it took us to get a new unit installed. A day longer, and I think I would have ended up in the hospital. I was needing oxygen just to keep my chest and head from feeling as if they were going to explode. As to not sleeping...for whatever reason, I tend to usually feel better later in the evening and at night. I'm usually at my best around midnight. Make of that what you will! Anyway, I think I'm up a lot at night just because its when I feel just a little better. Who wants to sleep through their "good" time?

As mothers, we are always going to feel mother-guilt. It just goes with the territory, and frankly, we live in a society that encourages it. I suppose since I had children before becoming disabled, I sort of understood this. Ofcourse, I sitll wrestle with it, but I'm at the point where I can keep it in perspective. Years later, I can still feel twinges of guilt, and yes, I feel a bit lonely and isolated, but again, its about perspective. If we're lucky enough to have loving and caring people around us, I think we're already ahead of the game. Years and years ago, I took Zoloft for my autonomic dysfunction. While it helped with many of the autonomic problems, it gave me what I term "existential depression". My mind would often wonder in curious directions....you know, about how we are all small specks in a vast universe....I was lucky enough to realize that it was this drug causing these thoughts and they did diminish with a little bit of time.

POTS is often thought to be caused by the body trying to compensate. That compensation can be "exaggerated" for a variety of reasons. For instance, if one has lived with POTS due to neuropathy or possibly a connective tissue disorder, its reasonable to believe that the compensatory responses of POTS can become exxagerated due to hypersensitivity of the undamaged receptors or even the scarred receptors. Like you, I've had some deficits for as long as I can remember. Could never blow up a balloon...heck, I could never even blow a bubble with bubble gum. I thought everyone had blackouts/greyouts on a regular, if not daily, basis. What sets it off to worsen? Who knows? And why do some get better? Again, who knows?

I have routine blood work up done at least twice a year. Nothing has popped out that could be causing this other than the severe autonomic neuropathy that I've been diagnosed with for 13 years. My primary care doctor and the doctor I see for ANS/POTS don't seem to see the need for further investigation. Ofcourse, I'd like definitive answers, but I suppose at this point, there's a limit to how much testing I want to do in order to confirm a problem is what we are fairly certain of the cause. I don't know that even identifying a particular autonomic deficit causing this would lead to any better treatment. Diuretics do help me manage...and isn't that about as much relief as any of us get from any treatment?