lynnie22

Thanks a lot Chaos for that info and link. I will read it. The doctor I saw at Mayo never tested for pooling -- is there a test? He just suggested bicycle shorts, not compression stockings. I don't understand it exactly. Is there a test, or a way they tell where the pooling occurs? The only thing I know (well not the only thing, but not too much) is that my blood pressure is very affected by the time of day and my stress level, but not much by my standing up, that it goes down after 9 pm to very low if I take any propanalol after 1 pm, that my heart rate goes way up, especially in the AM when I stand by about 40 or 50 bpm, but is up to 100 sitting without any beta blocker. If I exercise, where this all began, my heart rate is much higher all day and early evening. No idea exactly how this relates to pooling or where I pool, so I hope to discover some of this in the link you gave. Thanks again!

Ugh that's a tough one. You can't help it. It sounds like you're doing the best you can. Is there a way you can explain this to her, your condition? I think there must be some sort of disability protection for people who are genuinely sick. I know I have to work, there's no one else. I work for myself, and I sit seeing clients. I cancel sometimes because my blood pressure changes, and sometimes I feel so dizzy. I take alittle propanalol in the AM which helps with the HR, and depending on my blood pressure later in the day, I take a little more. I don't work like I used to and I end my day early. In the evening my blood pressure usually sinks and I feel worse. Other people have it the opposite. I struggle with it each day. There are bad days and better days. I've been put on an exercise protocol -- and from what I've heard, I should be wearing compression stockings. I'm exhausted most of the time but try to get enough sleep. That's really important for me, but lately, with worry, I toss and turn and don't sleep well. Sometimes I would love to not work, to take a rest, but I don't feel I have a choice.

Hi, I have a couple of questions. Chaos, what is anaerobic threshold? Sorry for my lack of knowledge, does it mean how fast you can allow your heart to beat? If so, weird thing is, for me standing, just standing seems to be the worst for my HR without any beta blocker. If I do the bicycle for example, if doesn't go up much, not yet anyway, while I'm doing it, just later throughout the rest of the day and the next -- when I'm standing or even sitting up. I know of course if I were to make walking aerobic that would be a whole other matter, and exhausting. I like your idea. Alison, what kind of compression stockings do you recommend that are more like a hug? I've heard people say that you really need compression stockings that are up to the waist. One of my doctors suggests bike shorts. Thanks for your feedback.

Chaos, your information and articles were very interesting. Thank you for sharing that. Allison, I am amazed that you can do so much exercise. I do envy you....I have never worn compression stockings, one doctor recommended them but I tried them but it felt like I was being strangled, just my experience. I agree that non aerobic exercise is probably better....but believe me, what I do on my recumbent bicycle is hardly aerobic. Three years ago when I was diagnosed with pots by Mayo, I was in much better shape. At that time, I did do lots of weight training type exercise, loved it, better able to walk, much more stable bp and hr. Then, I stopped and coincidentally lost a whole bunch of weight (who knows why?) and everything became flaccid. In the last year I can hardly do anything. I've been trying but I agree that too much is exhausting. Like you, TCP, the recumbent bike really exhausted me this round after fifteen minutes for days. I'm not sure which way to go, but my doctors all seem to believe in exercise as the cure all. I agree, Chaos, that when I was diagnosed with CFS I wasn't able to exercise without days of exhaustion. I know if I don't start moving though, things are just going to get worse. Maybe easy does it. I haven't tried yoga for quite a while because of torn rotator cuffs and very limited as to doing positions. But I know that yoga is supposed to be helpful. Does yoga make any of you dizzy though? Thanks for all your feedback. I think it's so individual, and it's important to pace ourselves.

You make a lot of sense -- taking it slow. Thanks for your feedback. My doctor wanted me to work up to 1/2 hour of aerobics and 1/2 hour of weight bearing everyday. Today all I did was 15 min of the bike and I'm exhausted. What causes the HR to go up so much in general just because we're walking a little more, or is it the decline in my condition? It's in the last year I've seen this steady decline but now the tachycardia is so much worse in general, and especially since I've been trying to move more.

When I went to Mayo, i was told that the main thing that will help my pots symptoms is lots of exercise, recumbent bike, walking, leg exercises. I have started slowly to walk and use the recumbent regularly, and find that my heart rate has really escalated. I can't take much beta blocker because it lowers my blood pressure too much. Has this happened to anyone else? My heart rate was 120 standing at its high, now is 145. Sitting has gone up to 110 at times. Does this eventually equalize as your body gets stronger? How long does it take? It's not easy to take.

Thank you for bringing up this topic, Jackie. I am struggling with this issue right now. My lease is coming due and I have not been able to work like I did before, so uncertain, and my rent is NYC rental very expensive. So I am forced to move, not certain where, not certain how I can look given my health, with all rents in the City being very high. So the resolve on this one is unknown at this point. I moved to this apartment four years ago when I was feeling well. In the past, about sixteen years ago, I was forced to move because of health=inability to work. I had been diagnosed with CFS, although it certainly may have been a variation on the pots theme, some of the symptoms were the same. I was in a work/live apartment and, as work declined and I stopped working, I was forced to move. Complicating the whole thing was the fact that I was also the primary caregiver for my mom who had dementia and was living with me. Thank God I had a studio apartment that I at the time owned, where we moved, although the quarters were quite cramped, as you can imagine. Finances continued to worsen though and again, thank God I owned the apartment because I was able to sell it -- and moved again to a bigger, more affordable apartment outside Manhattan. I was on disability at the time. I had only two weeks to find a new apartment once I found a buyer, it was crazy, but I did. It wasn't ideal, but it at least was spacious which I think was healing. My health slowly improved. In both moves, I don't believe there was a choice in either decision. Of course I missed things in each move -- the space tremendously when I moved back to my studio, and the city when I left it. Now, however, I am more uncertain, because I don't have something to fall back on, and I'm not well enough to commute so that I can rent something more affordable. Anyway, I wish I had thought ahead this time, that I might get sick again. Maybe I would not have moved to an expensive apartment in the City, but it is what it is, and I have to figure out what makes sense and find a place to live.

I've been told to start on the recumbent bike and work myself up to 30 minutes of aerobic walking! Right now after several weeks, I'm up to 12 minutes on the bike alternating between level 2-3. I also try to walk 5-10 minutes which I find very trying because I get dizzy and my HR can go up a lot. Still I started out at 5 minutes on the bike at level 2, and walking, very difficult. My own personal experience is that the walking, simply by being upright, is very tiring, unless, as you say, I am leaning on something. However, walking is preferable to standing, but I think the bike is a better beginning, at least it doesn't create as much of a problem, although later in the day my bp does go down somewhat and my HR up for the day. My doctor also told me to do resistance exercises for my legs to build up the muscle. This I can only do a little of, only because it causes real muscle fatigue.

Here and there he seems to discuss helpful supplements to take, but I agree: He focuses too much on weight loss and he doesn't really get into substance. Even his alternative health shows are terribly limited. However I do think it would be great if we could send some sort of group message, like a petition, requesting that he address Dysautonomia in a serious way, perhaps having one of the experts appear to discuss it. It will not get the coverage it deserves, but it deserves to at least be recognized.

Thanks for the suggestion about changing my beta blocker. That seems to be the only logical next step.

When my pots symptoms worsened and I returned to Mayo recently, they told me what I needed to do to get better was exercise, exercise. So I have begun slowly on the recumbent bicycle. I am on a small amount of inderol for the very fast HR, which they have kept me on but it bottoms out my blood pressure. Problem is I also get these early evening spurts of high blood pressure -- which goes down after about three hours. If I take inderol in the evening, it goes down to very low levels so I try to avoid it. Now, with the exercise, even though I take no inderol in the evening, my blood pressure is beginning to get lower and lower. True brain fog and dizziness. What to do when even the beginning of the journey back to improving my symptoms worsens my symptoms?? If I don't exercise, of course I'm totally deconditioned, and my heart rate gets worse, but if I exercise, my heart rate still gets worse along with blood pressure sinking. No one has put me on anything to raise my blood pressure because of the evening high blood pressure. Any suggestions?

Hi Trappedat20, First off, let me welcome you to the group and say how I feel for you and hope you get some good answers soon. Have you had a complete workup by an autonomic system neurologist? I think that's so important. Although my blood pressure isn't quite as labile as yours, it is labile and after a year of freaking out about blood pressures that went as high as 185/120 and as low at other times down to 70/40, and changing every minute like yours, I went to several doctors, including a recent visit to Mayo to see what could be done about this. Even the experts aren't certain, but they did attribute it to POTS. Were your stress hormones tested? Yes, something is way off in your sympathetic nervous system causing severe fluctuations in your blood pressure and HR. One thing I noticed in your numbers which make sense is that when your blood pressure goes up, your heart rate goes down or vicea versa. From what I know that's how it works. Now since all this happens independent of your position, and thus not necessarily postural, it is confusing as far as POTS. But I know there are so many different symptoms and problems that each person has. I've been told time and again that everyone's blood pressure fluctuates every minute which it does, it's just that ours go to extremes, and yours goes from one extreme to another very quickly. I have not been given much in the way of meds for my blood pressure -- a small dose of betablocker to keep my heart rate lower -- my heart rate does not go down much on its own and is pretty consistent, it's just my blood pressure that is not. But they do not know how to treat the fluctuations, not wanting to lower it too much. I wish I had more information to share. From what you write, it sounds like you haven't had a really thorough workup and would really benefit from one. Lynnie

Well I can certainly relate to the insomnia problems! When I was on a 24 hour beta blocker, I couldn't sleep at all. It seemed to worsen my insomnia but I also know it can interfere with breathing for some people. I've had insomnia for a long time. I also have these sudden awakenings, often after two hours and have to get up, watching some television in another room and go back to bed. The doctor at Mayo thought a sedating type anti anxiety drug might be helpful but must find a 'sleep specialist' to help me with that. I do wake up at times early in AM with heart pounding, if that's what you mean, Katie. I am able to go back to sleep though. The best helps for my insomnia at least as far as falling asleep is listening to soothing music or a sleep hypnosis cd. The awakenings I haven't figured out yet. By the way I have a high stress hormone level, just tested at 1200. Maybe the sudden awakenings are related to surges. Are you ever able to go back to sleep, Katie? Thanks for the Alpha Delta Sleep info.

Hi Kitt, Well who knew about Dr. Low? He came in after his assistant interviewed me but his major emphasis was on a need for exercise, and that the lack of it is the major reason people like me return. And yes I do have access to the test results and the NE jumped to 1100 when standing from 550 lying down. I had no idea Dr. Low no longer saw patients. Wow. I still would have liked to be in the POTS clinic, but thank you for showing me the positives. THe cardiologist who saw me was very good, and he found many more things besides POTS for me to follow up on, two red flags....and other things....I was so thankful to have him read all my test results with such acuity. It was a tiring trip for me and although I don't have too much to follow up on for the POTS, I sure know that exercise needs to be in my immediate future. He is sending me I hope some exercises for me to follow along with my recumbent bike and trying to swim. Anyway, once again, thanks and good luck to you! Let us know how you do. Lynnie

I was at Mayo almost a month ago but was not scheduled at the clinic I hear because I am over 50 and was scheduled to see the same doctor I saw three years ago, a cardiologist, who arranged my consults and whatever tests I had. I saw another POTS doctor, Dr. Low, so there are more than two. He did not order additional tests. I went because my condition has declined. What was emphasized to me was EXERCISE, and the fact I was deconditioned. One of the tests also showed a hyperadrenergic state when standing. However, I am sorry I cannot offer any feedback on the clinic itself. I've heard very good things about it and the two doctors mentioned and of the clinic and am sorry that they are not taking us older adults. Good luck on your visit!

I also can't take antibiotics, at least none that they've tried as yet. Kathy's idea sounds good. There are many herbal alternatives to antibiotics that kill bacteria, although I am still finding out about them. I have friends that were cured of problems with the right herbal tea or remedy.

What a drag, Jackie! Isn't there anything they can give you, some antiviral agent that works? Having a fever that often with a rapid HR is really difficult. Thank you Lulusoccer for that info -- had no idea we were talking about tylenol. I am an advil fan although it is not a fan of my stomach.

Weird how that is. Good luck on propanalol, Faintinggoat. I think in truth ALL betablockers make people tired, it's just how much each one affects us. Since I've been on all these betablockers, my bp has become very abnormal, although it took a couple of years -- extreme lows in the evening on propanalol, extreme highs without it some evenings. Perhaps some of our autonomic nervous systems as crazy as they are become even more affected by certain drugs.

Just to add to the mix. I was on propanalol as my first drug, and although it probably contributed to my exhaustion, it was hard to tell. Then I was put on Coreg 40 mg and it had really weird effects on me, never felt right, couldn't keep my bp high enough so eventually I switched back to the short acting propanalol, 20 mg twice a day. After quite a while, it began to affect my bp much more, and so I had to lower the dosage to 10mg in the AM and 10 mg 6 hours later, but then the later dose began to bottom out my bp so now I only take it once a day, in the AM. I don't know why it became so potent for me, and I will probably be switching to a low dose of atenalol which I never have tried. I don't know if anyone else has found propanalol to become so much more powerful on bp, but that's my story. As far as HR, it's been good, although 10 mg just keeps it below 100 standing.

On our site, there's a section describing how SSRIs can help. Everything is person specific, so not everything helps everyone, unfortunately. But from what I read, serotonin is the main neurotransmitter that is used over autonomic control, particularly blood pressure and it can also help suppress the sympathetic nervous system, a big overactive part of POTS. I'm planning on going on something really soon, but I have been warned that the first few weeks of taking it can cause a worsening of symptoms and then things improve. Gemma, I think like with everything we try, it is trial and error. And it probably depends upon the type of POTS you have as well.

I work in my own business, but not on my feet. I sit in my work. Still, there have been days I've had to cancel clients last minute, hate how I can't really plan how I'll be feeling. The first two years of POTS were pretty mild, only the last year has become difficult. I think there are good periods and bad ones. I don't know much about FMLA. I only know that the last time I was sick, a long time ago, with what was then diagnosed as CFS, I was on disability. Got better after a couple of years. I think balance is the key word for all of it. Not overdoing it. It doesn't work.

Jackie, thanks! That's a good possibility. I've actually had this sinus/larynx problem since September. Doctor never sure if it was bacterial or not, but I'm allergic to most antibiotics so they loathe to try them. It came and went and came and went. With the flu shot, it came big time, really infected, high fever, but that is better today, still not great. My internist told me to go to ER over weekend, went and they did NOTHING. Serious nothing. No blood tests, no nothing, just a physical exam, ER doctor felt it was a virus, nothing to do. Quickest ER visit ever. Why do you get fevers so often?

Corina, I don't think paracetamol is available here, at least over the counter. You have so many more drugs that are available ove the counter there! Kisekis I relate! Jackie, it must be so hard getting fevers so often! You obviously are on tylenol regularly. I am not sure if this was the flu or something that happened after the flu shot with a high fever and sinus/cough/throat problems. Anyway, today I'm more congested but doing alittle better, thanks Jackie. The advil (not great for stomach) has helped the fever and I have been drinking alot of tea with honey, the honey is simple but great for the throat and LOTS of fluid, as always.

I never drank diet soda. However, I am always used artificial sweetener in my one cup of coffee. It used to be equal. Oddly enough when I changed to splenda, my symptoms got much worse. Are any of them good for you? I doubt it. My own personal opinion: most illness is caused by all the artificial everything in our foods and everything else. I agree with Jan that maybe you should stop it as an experiment and see how you feel.

Hi Corina. What is paracetamol? Actually, it definitely has helped but my fever is tottering again, meaning my hr is higher.