lynnie22

I have had a constant and worsening state of my symptoms for about three years. My doc thinks I must have had this for years before, as I'm simple too old (64) to get it, he says. If I have, I never knew I had some of the symptoms, although I had two periods in my life of extreme fatigue, breathlessness and other symptoms. For these three years, however, the symptoms have been unremitting. Do others have any periods of getting better/symptoms improving?

I don't know much about this, but once again today I had another surge in blood pressure for several hours, took extra inderol to lower it, but I'm a mess while it's happening and it's happening more and more. From 155/110 to several hours later, 95/70. My POTS neuro didn't know if it was related to POTS, but it sure sounds like it? Rama, you sound like you are very knowledgeable about this and volunteer, it sounds like you have something similar to this. Could you explain a bit more? Thanks.

Thanks Ram for the info about Dr. Levine's program. I don't think I'm up to anything very strenuous. But I didn't realize that PT can actually help your whole body get in shape. The PT I go to does one muscle group at a time, by prescription. I think I'd better check out other resources. As far as rebound, that's me also. One day I can walk and bike and the next day I'm exhausted.

On my worst days, I can't do much of anything and so I sleep as late as I can and hang out on the couch, watching television. That's it.

I have tired to exercise, I have a recumbent bike, but find it really hard. When i exercise, my heart races more for the entire day. I guess it's because I'm so out of shape. I really believe in the importance of exercise for so many reasons with POTS, and think a PT is a great idea. My neuro actually have be a script for exercise specifically to improve orthostatic intolerance. I haven't been yet, and am curious what that would be. I am pretty new here, so I do not know Levine's exercise program. I assume I can look it up?

This is all really interesting. it was prescribed Ativan by a neurologist for insomnia. Years ago. I had insomnia for years before, but ativan was a whole other experience. I used to take 1 milligram, now I take between 2-21/2, plus ambien. Hard to admit, but true. You keep building up an immunity and have to increase the dose. I tried to stop all at once and didn't sleep for a week. It just kept getting worse. I don't know the correlation between ativan and POTS but the people at MAYO did think there might be one. And I wouldn't be surprised.I have been unsuccessful at getting off the drug, but am trying, a tiny bit at a time. I was sent to a sleep study center by MAYO here, and they had me buy a blue light to use in the AM, although it never helped me sleep better. I think the only way to get off is to cut down by 1/8 every two weeks, from what I've learned. There are no doctors that I have found who are even interested in helping you withdraw. I'll be thrilled to be benzo free at some point.

WOW....thank you for responding. I will try to find the threads....not great at it, but sounds really interesting. And thanks for your info about you, although sorry you're having a tough time, but it sure is tough. Well here's my MAYO experience in a nutshell. I went there having no idea what was wrong with me, just that I was out of breath and my heart raced whenever I walked at all and I was exhausted. Never took my ativan use into account, although it has been there for too many years....stopping or even cutting down is really, really hard. At MAYO, besides getting diagnosed with POTS, I was sent to the sleep study clinic where the psychologist in charge and the cardiologist who diagnosed me felt that there might be a strong relationship between the two, not ativan as cause, but certainly as playing a role in CNS dysfunction. They didn't go into detail, unfortunately, as I don't think there has been enough research on this, but he said that my sleep spindles whatever they are, were moving very rapidly while I slept, caused by benzos, which also was impacting my oxygen level. I'd be curious to hear more about the responses you got when you posted about benzos. And eager to hear other comments and thoughts.

Thanks for your post and help! I particularly am helped by your sample diet. When you say larger doses of the B vitamins, what range do you take? Did you learn this from a nutritionist, others or trial and error? Again, so good to hear you are doing so well!

Because of insomnia, I have been taking ativan for a long time. The sleep study people at MAYO suggested there might be a relationship between my orthostatic intolerance and taking ativan. Does anyone have any thoughts about that? I have been trying to cut down but it is not easy. I'd be interested to hear what you think or your own experiences.

Hi, I postponed my injection, doc is now away for two weeks, scheduled then. Asked for pain meds, will pick it up in next couple of days. The pain sure interferes with my sleep! I don't know if I can tolerate pain meds, I will see. But I think I will get the shot when he's back.

Hi Rama, I have to ask you then. What is a better drug than inderol? I just saw the POTS doctor today, for the report of the most recent test done three weeks ago. He suggested I think he called it Pidalol (I think that's wrong but close), but hasn't changed me yet. He also gave me a prescription for pyidostigmine bromide, no idea what it really is but he says it will increase things like my blood pressure when I stand along with my energy level. Is that what you're talking about? Of course I do not want to increase my blood pressure during its high times, especially the systolic numbers. My testing showed a normal parasympathetic system but a phase two decline with the Valsalva maneuver for sympathetic nervous system, whatever that means. I do not know about being HYPER or having baroreflux failure -- not notes for that in my testing. He wasn't sure about the blood pressure surges, where it is coming from, but is doing some more blood tests. Thanks again all for offering feedback and suggestions!

Hi, That's a difficult journey, CMReber. I am on inderol, a beta blocker, but am constantly taking different amounts because of my ever changing blood pressure, often too low to handle much, sometimes too high as you know. It suddenly gets high toward the end of the day at a particular time of each month like menstrual cycles, which is why my endo is looking at hormones. It happens when I am sitting and do not know if it would go lower if I were to lie down, and have no idea what would happen if I stood. But it goes from low to high while I am in the same position. Yogini, I am on synthroid, aciphex at times, ativan at nigh and ambien at night. And of course, inderol. Does that make a difference? While I was at Mayo, they believed that my use of benzos might be affecting my system but they are not very easy to get off, especially with severe insomnia. I am keeping track of my episodes now but do not know what triggers them. Once the pressure goes up, it stays for several hours, getting lower after taking 30-40 mg of inderol. It happens at work, so perhaps a part is stress, but these tremors start before it, and it doesn't happen most of the month which is so strange. Any ideas?

I'm not on any pain meds. They never gave me any, but then, I take quite a bit of sleeping aids to sleep, trouble sleeping. I'm scheduled to get the cortisone shot tomorrow. Ifey about it, but the pain, especially trying to sleep is really hard. It seems that so far you feel like I do -- that it's something to probably avoid if possible. I'll let you know how it goes.

I find all of your responses very interesting. Well I think I'm the senior in this group of emails -- I'm 64 -- and I've had POTS that I know of for about 2 and a half years. I'm really not sure what caused it, I had my thyroid removed for cancer about six years ago and I think that was the beginning of a decline. I certainly don't feel really great since I've had it, although there are good days and bad days. I don't know how it affects longevity, but I do agree with some of you that you need to keep yourself in the best shape possible. Exercise and good nutrition seem paramount, but exercise can be hard, I know for me because I'm so tired and out of shape from not exercising in the past. Still, I know these are important to keeping our systems functioning at their best. I have other illnesses, someone mentioned diastolic dysfunction which I've had for years and was told that it wasn't something to worry about, whether the cardiologist was right nor not. I've had thyroid cancer as mentioned, have serious osteoporosis, had CFS for a few years, which may or may not be a part of what I have now. Still I believe what is most important is keeping yourself as healthy as possible, given the givens.

This is a quick question. I have a torn rotator cuff, in alot of pain, scheduled to have a cortisone injection but was reading about side effects -- I have this labile blood pressure lately whether it's related to dysautomia or not which can get really high (separate post). Read that these injections can sometimes cause high blood pressure as well as glaucoma (need surgery for that). Don't know of course how it mixes with POTS itself. Any experiences?

Hi, Thanks for answering. I'm going to answer the four posts and hope to hear back. Yes, when my bp spikes, I feel very nervous, shakey inside, some numbness in my left leg. It started several months ago and happens a few days a month, the same time of month. What is baroreflux failure, ramakentesh? I am scheduled to see a POTS specialist who just retested my POTS a couple of weeks ago. He knows about this and he and my endo are looking into my adrenal levels. Hi Lemonsin2/lemonade. My blood pressure which is normally 90/60 -115/80 spikes to 160/100 to 185/115. We're talking high. I took so much inderol to try to bring it down and this time I was working and I couldn't cancel so it just didn't go down very much. I am becoming really anxious about it. So yours is 130/100 to feel lousy. Does this happen with POTS? Lynnie

Hi All, I am a fairly new member and would love some feedback if anyone has any information or experience with this. I have been diagnosed with POTS for the last two years, and over the last year, my blood pressure which is usually very low, has spurts of being very high several days each month. I find the whole thing very anxiety producing and confusing, and the doctors have no idea what's going on. So the inderol that I take for my tachycardia which is usually only 10 mg twice a day becomes 70 mg a day when my blood pressure goes soaring. It can't be good to change it all the time! But the doctors say it's okay and it hardly helps reduce the high blood pressure in any case and I never know when it's coming. When it becomes high, I begin to get tremors inside. There is some suspicion that it is related to adrenalin although blood tests are not reflecting a big rise. Does anyone have any ideas or experience with this?? I am 64 years old and I feel like I'm going to have a stroke or go crazy. Thanks for your help. Lynnie

Hi, I'm pretty new myself but have had POTS for almost three years. I just posted wondering why my HR is going up and BP is so erratic. In any case, my resting HR varies a lot. It is usually in the 70's, but when I take inderol which I do everyday, it can go into the upper 50's. The last few days it has been close to 100.

Hi All, Over the past few days, I have developed a rapid heart beat from the moment I wake up (it can wake me up -- 100 or more), which of course increases by 40 or 50 bpm when I stand. My blood pressure, in any position when I wake up is so low I cannot take my usual beta blocker to manage. I drink plenty of fluids, salt and still it takes hours before the bp is over 90. I don't know what to do. I go to work, but can't stand upright to get there. The doctors cannot advise me, at least the ones I have. I am scheduled to be retested in two weeks. I have begun to wear the compression stockings but so far see no difference. Any suggestions? Thanks so much for your help. lynnie

Lately my blood pressure when I wake up is 80/58 or 90/60 and I can't take my bb,which I have been taking regularly to control my racing HR. And so I wait. But eventually I have to get out and go to work, and so I take a small dose of the bb which in my case is inderal, and then my bp sinks and I feel faint. The small dose hardly controls the tachycardia anyway. Any advise? I don't know what to do. I drink plenty of water and fluids and salt and it no longer helps until much later in the day. Help!

It depends on whether with or without beta blockers. In the AM before I've taken a beta blocker, my standing is 120-130. After my bp is high enough to take a bb, it eventually goes down to 90-100. My resting hr is about 60-80, very variable.

I have been drinking about 64 oz of water a day, plus two V-8 juices on bad bp days. Smart Water sounds like a good idea, since the regular water goes in and out very quickly. There are a few waters out there that claim to have lots of electrolytes in them which will probably be better for fluid retention and thus bp. I'm looking into them.

I hope I am not posting too much as a new person here. I am eager to get feedback, and eventually hope to be able to offer good feedback. It's been two years since my initial diagnosis at Mayo, they put me on a very strong beta blocker which bottomed out my blood pressure which is normally low, so I eventually switched to inderol which I take twice a day, was taking 20 mg, now down to 10 mg, and barely able to keep my blood pressure above 85/55 using it. It only helps the tachycardia at that low dose a little, keeping it under 110 when I walk or stand. My body has suddenly been unable to keep my pressure up with it, even sitting, and I'm often very dizzy and feel faint. One of the things I was told is to exercise on a recumbent bike. I try, but I also found that exercise raises my heart rate for the day and it is hard to figure out how to balance all of this. Of course, I do not have a doctor who can help me yet, having had bad experiences with 'experts' and the others often do not even know about POTS. I drink alot of V8 juice for the salt, alot of water, and not sure what else to do. Now that my dosage is lower on the inderol I'm developing an irregular heart beat at times, very disconcerting. Any ideas until I find the right doctor? By the way, I also lost a lot of weight over the last year, not on purpose and alot of muscle strength in my legs. I KNOW I need to exercise them, but again, when I exercise my heart rate goes up, creating a problem with needing more of the BB. Thanks alot for any help you can offer!!

I just wanted to thank all of you for your feedback and positive support. It really helps to know there are so many others out there who have been through the same thing. That was a good point about MS, and it is really hard to find a doctor who is willing to treat my condition -- even a so-called expert. I hope you all don't mind that as a new person, I am posting my different questions. Thank you for being there!

Hi. I'm new here. I was told two years ago that I had POTS after a battery of tests and here in NYC, went to one of the main dysautonomia doctors who told me no, I suffer from under exercise and 'nerves'. He dismissed the Mayo reports. It is very aggravating to be dismissed and not find help where I live. And, of course, I cannot travel back and forth to Mayo. My hr goes up whenever I stand by 30-40 beats, and know that is part of the diagnosis for POTS. Has anyone else been dismissed by a specialist? Glad to find this site.