lynnie22

I had a hysterectomy and two years later, an oopherectomy for the remaining ovary. I was sick with what was diagnosed as CFS before these surgeries. But I did not become sick after them. However, when I had a thyroidectomy back in '07 along with a parathyroidectomy, I never felt well again and was diagnosed with POTS a couple of years later. I am not sure if it was the removal of the thyroid (never having normal thyroid hormones again) or the anesthesia used in that surgery. I had a terrible reaction to whatever they used for that. Certainly there may be a relationship.

Thanks. i find it really interesting how an SSRI helps with tachycardia. Does anyone know why? Yes lying down helps me too and meditative breathing has helped me with my blood pressure but not yet my heart rate. I'll have to keep trying.

I take aciphex which is a PPI. It works well. But yes, papaya digestive enzymes used to really help me. Glad you're feeling alittle better. Avoid all those acid producing foods.

I'm finding that my HR has been getting faster and faster -- It used to be 70-80 sitting, about 120 standing. Now it is zooming to 100-110 sitting and 140-150 standing. Because my blood pressure seems to be dipping too, I can't take the same amount of beta blocker to control the HR. But because it sometimes goes high for a short time, I haven't been put on any of the usual pots drugs. Any suggestions?

You know, Yogini, there may be a correlation. Although I haven't noticed much change in HR or BP perse since the visual changes have been fairly constant (although today a little better -- why? no idea), when my bp is low or my HR is very high my vision also changes, not exactly like this but close. So it may be POTS related. I'm generally sitting -- period -- and that's when my vision is so difficult, gets worse with the day as my eyes get more tired, and when it's really bad, I can hardly keep my eyes open. I guess I'll see what the MRI shows and pay more attention to my HR and BP. Today my HR was through the roof, even sitting.

Thanks, Yogini. Yes, I went to a neuro who has ordered an MRI for tomorrow and vestibular testing next week. We'll see what they show. I'm extremely dizzy -- got worse as the week wore on. I had an ocular migraine on Wednesday after dizzy for several hours, it could be part of migraines, I'm not sure. Hopefully after the MRI and testing, I will know something further, or at least feel a little better.

My lowest often happens in the late evening just sitting around, drinking plenty of fluid to try to keep it from sinking. 74/48 has been my lowest. Didn't feel very well, head all fuzzy, lightheaded. Happens rather frequently. Doctors say I should just go to sleep.

Hi blue and lejones, Interesting comparision. My experience has varied wildly by hospital. If you are having a heart attack or have those symptoms, they take you immediately and set you up on a monitor, take bloods, etc. But I don't know if you see a doctor so fast. Other things it really depends. What I meant by a long wait is two hours and I hadn't seen a doctor yet but was told that I would be there all night before they would give me a catscan. I figured it made more sense to go home and go to the doctor. I have an appointment with a neurologist tomorrow. I was just talking to a friend who had passed out, taken to the ER and was in the middle of the floor for 17 hours before she got moved into a cubicle, and was hardly treated by then. I know people who have been in the ER for two days before being moved into a room. But then, there are exceptions where you are seen within an hour and treated and discharged within about three hours. Doctors examine you and order tests, mainly are not available, nurses are more available but depending upon the hospital, hardly available either. You often lie there hooked up to something that no one is watching. Last night was impossible and two hours without being seen seemed too long to me. I left and was told that I wasn't really admitted yet, but they had put an IV in, which they removed, although they had no record of it. I got two calls when I got home asking me if I still had the IV in my arm....

Hi, Well I went to the ER only to leave before examination! Is that not crazy! I have no patience in those places which is what you need. Thanks for the feedback -- I've heard of nystagmus, Katie. It is something to keep in mind. And I do have ocular migraines, meaning I become blind periodically. I've had these weird headaches for several weeks, but my vision is all distorted for the last couple of days. Anyway, my visit to the ER left me no wiser. I will try to get an appt with a neurologist, Galatea with MAV and a good catscan or MRI in mind. It does feel a bit like vertigo, which I had several years ago for almost a year. Well with POTS, who knows? With this I feel exhausted -- especially my eyes. And everything is really bright.

For the past couple of days, following problems with my stomach for weeks and on the heels of a laxative, I've developed problems seeing clearly -- I'm dizzy but with everything sort of moving or wobbling. I feel tired, anxious and weird. I'll tell you, I've been having vision problems for months, and I think some are POTS related, there are so many things that happen I don't understand, but this is different and has me concerned about having a stroke or something. I've also had headaches on and off for weeks. Anyway would love some feedback if this is something familiar to any of you. I know this is not a diagnosis forum, I'm just anxious about all of this, and wonder if maybe it could even be anxiety. If it gets worse I will take myself to an ER. In the meantime, thanks for any feedback.

Good to know, Yogini. Thanks for the suggestion. My bp seems to go through different periods, and this is a new one of very low. It seems to make sense with Tyler, Rachel, since he is in puberty.

I was just curious if many of you have blood pressure lows at night -- really low? Recently my bp has been sinking to 65/45 at its lowest and I really don't feel well when that happens. In the AM it's back above 100/60, but it seems really extreme. Any experience with this? Thoughts?

I think I'm the senior in this group. I am 65 and have POTS, suspicion that it may have been with me at other points in my life. I do not think it gets easier with age, because of the other problems that come up and it just is really hard to stay fit and to get through other illnesses and surgeries with age and POTS together. I do worry about heart failure and brain problems, partially because it runs in my family and partially because of what POTS can do. Doctors have reassured me that it doesn't affect how old you live but who knows. But I try to just get better, and some days are better than others. It is hard to juggle.

I know there have been some posts in the past on compression stockings or athletic compression stockings. Two doctors in the past week have suggested that I get them, but did not tell me what type. They seem to feel anything would be of help. At Mayo, I was told to get bicycle SHORTs. What's the consensus out there? What has helped?

Hi Looneymom, This is such promising news.....I've never heard of Mycoplasma P, but this is one of many things I don't know. It sounds like you and Tyler are on a really good road. Will be eager to hear how things go. Lynnie

Freaked, it sounds so much like what I go through often. I was having a terrible time, with the surges in BP, despite it being normally low. I shake, feel terribly anxious, and could not seem to control it. I take a very tiny dose of propanalol, haven't found a beta blocker that doesn't lower my bp too much at other times. I am unfortunately on benzos, but at night to sleep. I don't think in the long run they are very helpful because you do get addicted and according to a sleep specialist, it may be causing some of the pots symptoms to get worse. I found it correlates for me with times of day -- late afternoon being problematic, late evening being low blood pressure and calmer. It's all about our overactive sympathetic nervous system I think, and obvious surges in adrenaline. I have tried meditating which has seemed to help over time. My blood pressure is now higher in the morning and that seems to help me feel better later. But I am a nervous wreck most of the time, and do experience these terrible panic attacks with all that you talked about. I have also heard about although not tried biofeedback.

Hi, I've only been to the Mayo in Minnesota. Different people have had different opinions about the best one, although this is a primary center for pots. That is where I was diagnosed three years ago. But one note. They have quite a waiting list and, if you are over 50, which I don't know but probably not, you cannot be seen it seems at the regular pots center. I'm not sure what they do when you don't have an actual diagnosis yet. But yes, when you make your initial appointment, I think you can make other appointments with other specialists for that visit, or the doctor you see may send you to other specialists. I went recently and things had changed. I had to return to the same doctor I had seen last time, a cardiologist who was good, but sent to who he felt I should see as consultations which were limited. I don't think that will be your case if you've never been there before. Hope that helps.

I have tremendous difficulty with stairs! That was my first clue that led me to be diagnosed with pots -- I couldn't handle stairs without my heart racing and becoming completely out of breath. That being said, and the fact I have avoided stairs now for years, I think some stair climbing very slowly might be good to do. I've become so deconditioned that I find I can't walk up or down stairs without pausing on each step--so I'm trying not to avoid them as much. Yes I agree that upright exercise for us potsies is the hardest, but probably the best for conditioning.

Post endoscopy.....They gave me four drugs, although they only told me about two beforehand. Fentanyl, Lidocaine, Propofol and Versed. I have been very drugged out and dizzy, at first just high, now really dizzy and nauseous. Not sure what to do but drink water. Not sure which of the drugs in this cocktail is affecting me. You would think IV drugs would leave your system. Didn't get my report get about the test, but feeling pretty lousy from mainly the drugs. They sure don't know about POTS. Never heard of it. Any one have an idea which drug of this mix is the culprit and when will it leave?? Thanks alot for your support.

Thank you so much, badhbt. It is lucky to have someone working in endoscopy here. Dr. suggested I take BB an hour before the procedure with a bit of water, but he doesn't understand POTS. I didn't know the drugs they give you. I remember last time they gave me one drug, what is used alot as the anesthesia too well known because of famous overdose. Anyway, it sounds like they will have it covered.

I'm having an endoscopy tomorrow. I take shorting acting inderol twice a day -- usually half hour after I awaken with tons of water over the course and 6 hours later. Because you can't drink water for four hours before the procedure, I am confused on how to handle this since not drinking will lower my bp very low and not taking the beta blocker, my HR will be 150 and higher. Any suggestions? Thanks.

Jan, I find, ironically that when I get TOO much sleep, my HR is very high. but I think that's because I take short acting beta blocker and then it's been TOO long since the last dosage. Maybe. But I am a restless sleeper, take stuff to help me sleep which I do think is part of the problem, although hard to stop. Thanks about the exercise warning. Too much too soon. It may be related to stress since I'm overmaxed these days. But I can't seem to figure out what creates a good or bad day or week. Freaked, what do you mean about the low BP being part of the problem? I'm alittle afraid to take too much salt because of the high BP spurts, but I guess I have to normalize. Interesting about the cartilage inflammation with you too. Today was slightly better. I had four hours to let the beta blocker work before standing and facing the world.

Hi Katie, I don't think so. I was thinking, what has changed? I noticed one of my pills has two different generic companies -- in one bottle. So I thought maybe that. But I tried each of them and woke up, my HR quickly at 140-150 again today. Food is pretty much the same. It's never been this high

Despite having this condition for over three years now, I am rather ignorant it seems. And my condition keeps taking these precipitous slides. In the last few days, my heart rate has gone way up, to 150 standing, despite some inderol, and 110 sitting -- everyday. It did this for only one day a couple of months ago. I hope some of you who know more can help me. Doctors thus far are unable to help. I also have had alot of pain in my upper abdomen, doctors say it's an inflammation of the cartilage tissue, but it doesn't go away and stomach pain. Don't know if anything is related. When I was at Mayo in November they told me exercise is the key to getting better. I tried and then I got sick with what might be -- not sure -- a reemergence of CFS. The sore throat, the exhaustion makes me think so. With it my HR has gone soaring but my blood pressure remains low, making it so hard to take more beta blocker. In the evening, briefly, my bp goes soaring to highs, making it very hard to take some of the other meds you all take. i am under enormous stress. Needing to move because of money, sick with a number of things, still working, though more of a struggle....so stress may be a part of this escalation. Any ideas? Suggestions? Thanks. Lynnie

Thanks Chaos for the links. I read the articles and found them very informative. It sounds like the distension you experience may indeed be related to pooling. Due to pain in my upper abdomen since the bike (why there?) I have taken a short break from the bike. Plan on going back to exercise soon, but will be more careful about pacing, not that I was doing that much. In the meantime, I am moving around more, not exactly exercise but still....and found that after a certain point of moving about in the evening, my HR seemed to lower some. That's encouraging. Unfortunately these weird pains in abdomen have not gone away for two weeks, so am having heart and stomach checked. Think though it's some muscle inflammation that got exacerbated. Take care!