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Everything posted by lynnie22

  1. Not one who knows enough about POTS, unfortunately.
  2. Hi, Does anyone know about or has taken a prolia shot for osteoporosis with POTS? I am being advised to take this shot for severe osteoporosis but am concerned about its many side effects, especially because it works through the immune system and have no idea how it effects the autonomic nervous system. I have had POTS for six years. Any advise or experience would be greatly appreciated. Thank you. Lynnie
  3. Just wanted to share this. Just saw my neurologist who said they recently completed a study on paxil and pots showing it helps both the tachycardia and stomach issues. Not sure where the study was done, nor if it involved only paxil, or any other SSRIs, but I know some people have been helped by various SSRIs. I haven't tried it yet myself.
  4. Hi Katie! Nice hearing from you. I didn't realize you were so disabled with your digestion. There is a doctor who does food allergy testing I've been trying to get to for months. In NYC, it costs an arm and a leg because it isn't covered by insurance. So I've been trying to get there. In my system it works like this and it keeps getting worse: for months I was constipated and then the last several months, one day nothing, the next day, the runs several times, every other day. I eliminated milk and that helped for a while but not for long. Thanks for that advise. And a do have a prescription from my internist for librex for cramping when needed. I keep thinking its the POTS. Anyway, thanks. That reinforces my need to go to NJ. Take care, Lynn
  5. I haven't been around in months. So many things started piling up, and dysautonomia went to the back burner. I'm sorry to have disappeared on all of you. Things have gotten serious so I hope some of you out there can relate to my problems and maybe suggest some roads to take or not to take. My digestion: Went from bad to worse. I now have the runs almost every day, sometimes a day in between. They are calling it IBS, although my internist thought it could be POTS related, although he said there's still nothing to do. Is there anything to do about this crippling state? I can't seem to find anything I can eat that doesn't cause pain. My other issue which most of you because of your age have probably not faced as yet: osteoporosis. I didn't take any of the drugs because I am SO drug sensitive but over the past year, I lost 10% bone mass and am at great risk of a fracture. They want to give me prolia. It is a serious drug that works though the immune system, lowering immune system functioning. The other choice is forteo, a synthetic parathyroid hormone with shots daily but I have a history of hyperparathyroidism, not a good combo. Anyway,If anyone can give feedback on either of these two conditions, experiences, choices, I would be greatly appreciative! I hope in my long absence that many of you have gotten better and found answers.
  6. Hi Kris, I am so sorry for your frustration and all you've had to go through! I can totally relate to the frustration. I also hate insurance. They can be so difficult in approving things. I have been having GI problems for months -- so it does belong on this board -- so common with our issues, but I can't find ONE gastro who will do any testing! It is driving me crazy as I'm getting worse and worse. My intestinal tract seems to be not working, but no one listens. Anyway, I'm glad you at least found Mayo. There are many, many gastros out there. Maybe you need to try someone else or go back to Mayo if you have to. Again, sorry for all your frustration. So few doctors seem to get what's really going on and it's too easy to say it's psychosomatic when they don't know what to do. Good luck and feel free to vent here.
  7. Hi Aiofe, I have flown several times also, without much of a problem. As Katybug suggested, order a wheelchair to take you through the airport to the plane. A two hour trip shouldn't be much a problem, in my experience. Take care. Lynnie
  8. I have a small hole in my heart (shunt) in the part where the blood goes into the lungs to get oxygenated. The pulmonologist believes there is a relationship between that and pots -- which affecting which, uncertain. One surgeon wants to put an umbrella over the hole. I've read mixed reviews on this one as far as pots goes. Does anyone have both these, or have had it fixed, or know of their relationship? Thanks a lot.
  9. Hi Katie, Thank you SOOO much for these links! I can't believe I missed that first post only a couple of weeks ago....Your links and highlights are so helpful. My complication is a hole in my heart, causing less oxygen to be available in general. I wonder if anyone here has had pots and that. I've read that correcting it can sometimes have deleterious effects on pots. I'm sure everything has mixed reviews Again, thanks. I'm actually going to have a test in the hospital where they simulate high altitudes and see how you do. I hope you're doing well!
  10. As I am contemplating staying with a friend in Santa Fe (7,000 ft altitude) if I can manage to get there, I began wondering about all of you out there and if you've found your symptoms are affected by your altitude, or climate for that matter. I wonder if my HR will get worse where the air is thinner or not, how the altitude will affect me in general. I live in NYC, sea level. When I've been in Seattle, also sea level but different climate and atmospheric pressure, I felt better. I don't get around much, but I believe there must be some correlation. Any ideas or experiences on this?
  11. Hi Jingles, Good to hear I am not alone with the withdrawal and tolerance factor. I haven't begun withdrawal, just don't want to be hooked anymore, and they have stopped working to help me sleep the way they used to. Good luck with getting used to the lexapro. I believe in starting very small -- with lexapro which was helpful to me for a short time before I had pots or between episodes I was on no more than 10 mg and that's where I stayed for the three months I took it. Now I imagine it would feel really different. The benzos don't bother me but I can't stand being so dependent on them and having built up such a tolerance. What caused the anxiety to get really bad for you?
  12. I was cutting back on caffeine for months...getting more and more exhausted because I was told to. Recently I began to consume more just to be able to keep my eyes open, and it really seems to have a positive effect (not too much because then my HR goes up a lot). Caffeine has this very positive effect on my eyes, seeing more clearly, my eyelids not being as heavy. Thanks Rama for bringing this up.
  13. I have to say that this is all very interesting. I am also at times very sensitive to sounds and too much activity. I get spikes in catechomine when standing too, much not near to your levels, Sarah. I also have tremendous problems going to the movies, haven't been in months, restaurants, subways out of the question (along with the stairs). For me, Ativan in these cases helps, as does propanalol but not consistently. Good luck, Dizzy Girls, with their appointment. I had 9 months of vertigo many years ago. I think ativan was first prescribed to me then and it helped back then. I'm going to try with an SSRI and see if it helps with some of my symptoms. Anyway, wishing all of you well.
  14. Thanks for your responses. It's so interesting how we all react so individually. ks42 -- It sounds like benzos have helped you ALOT and that the klonopin has actually also helped your bp. I have been on ativan for years, before I knew about the pots, and the sleep clinic at mayo they said I had these abnormal waves because of them, so wanted me to get off. Hard to know if it's helping or not. Good luck Becia on the SNRI. It sounds like the benzos have helped you all more than the SSRIs, and I guess it's a matter of trial and error, with a lot of both. I really would like to get off the benzos because they aren't really great for you over the long term with memory, etc., but I guess you have to weigh the pros and cons. I am going to try a small dose of an SSRI and also probably something to knock me out at night so I can slowly lower my ativan dose.
  15. I've been on ativan for years, primarily to help with sleep, and trying to get off them for years. Have read here that many find them helpful with the high HR, etc. And reverse. At Mayo I was told that benzos may actually be aggravating my pots. But it's **** to get off. I have also been told by my CFS doctor that SSRIs have been proven to really help with POTS symptoms. About to try one. I've read for some of you that has been the case. Any experiences either way?
  16. Thanks for reaching out! You know, Chaos, I HAVE been on a search, I am in NYC, went to my old CFS doctor who does know the connection between the two, but she has a pretty it seems laissez faire attitude about the whole thing. I did make an appt with an infectious disease doctor, new I think, who does specialize in CFS among other things. Hopefully she can offer some help. The antibiotic for the strep helped, oddly enough, but not with the fatigue, and it caused terrible bowel problems which I hope do not become another issue (just somehow resolved that one after several months, hate antibiotics). I will check into Dr. Montoya's study, thanks, and I will really try to find someone. So sorry about your daughter, Dizzygirls. I do hope you find a doctor for her. There is a list on this site I know, and I imagine a lot of them are good. I went to Mayo out in Minnesota at first when I couldn't get an answer in NYC. At least I got diagnosed, although not really helped. I think it's hard to find a good doctor. Period. Good luck--there are definitely doctors who work with CFS or POTS. Me, I'm sitting here tonight with terrible chills and exhausted, long weekend ahead.
  17. Thanks for your support! I don't think it's the strep, Katie, cause the antibiotics aren't working really. An inch from death describes it well though. I guess no one here has had a CFS active and POTS combo? But who knows really what it is. Haven't been able to work in about three weeks consistently, that's for sure. Thanks everyone for listening.
  18. I haven't been on this site for a long time. I'm sorry to return now when I feel in desperate need! I was going on, marginally functioning but functioning. Suddenly, about a month ago I got hit with this super exhaustion and feeling of being sick that I have never experienced before. I have been diagnosed with POTS and years ago, with CFS. I went to the CFS doctor that I haven't seen in a long time and it turned out my herpes 6 active titre ( IGM) was borderline high. My internist retook it three weeks later and the numbers did not change. He said it meant my virus wasn't active, or else it would be going up. Anyway, I have sunk and can barely move. I honestly don't know where the CFS begins, or the virus begins and the POTS ends. When I went to Mayo clinic four years ago where I was first diagnosed with pots, I was also exhausted, although not like this. I can't even move, my throat is sore (I'm on antibiotics because I tested somewhat positive for strep) but I think it's the CFS/pots -- I know there is an intimate connection between the two, and then there's the reactivation of herpes 6. Anyway, I'm jumping out of my skin and was wondering if anyone has had this experience, and has any suggestions. Thanks for whatever you can offer!!
  19. Hi Goat, Sorry you're going through a tough time right now. I know. I understand. A lot of us do, so you are not alone in that. Some days, the bad days, I feel so overwhelmed I hate to face the day, and hope seems to be in short supply. But as many have said, Jackie and Chaos, among them, hope is really important to keep alive, because, as you know, things do change-- from fainting everyday to fainting once a week -- no small feat, even if new symptoms come to be tackled with. Finally there is more and more research being done on this and I believe that new discoveries will be made. In the meantime, the fact that alternative therapies have helped so many is positive, and something I should be doing more of, for sure. Not to say it's exactly a celebration to have this illness, it's a drag, it's frustrating, but it's important to focus on what gets better, the days that feel good, the fact that many people have really been helped. As far as therapy, I know it well, and you have to feel the therapist gets you, connects to you. I don't think the therapist has to be ill herself, but she or he has to understand in her heart what it feels like for you, what your life is like for you, and help you find the hope that seems so elusive at times. Certainly a therapist with an understanding of chronic illness is a plus, as long as she is also compassionate and gets you as a person. My sentiment on good therapy, Tell her how you feel about what's going on there, see if it helps. If not, then maybe move on. Anyway, I'll be thinking about you, Goat, and hoping that you begin to feel better. Glad you're writing.
  20. I am able to work most days, but that's because it's a sitting job, but sometimes I have to leave early because of blood pressure spurts. Getting to work is harder -- unable to take public transportation because of the standing for a bus or stairs. Work pretty much depletes me, so social life outside home is very limited. As many others have said, it depends upon the day. Chores are minimal, exercise is minimal. Some days, usually one a week, have period of normal in them, so exciting when that happens.
  21. Thanks, gjensen. It is good to have a couple of recommended choices since the one I'm taking isn't working. Hi Raisin, yes I know the fiber without water is adding a problem. It's strange, no matter how much water I drink it is never enough lately. I think the constipation helpers which absorb water from the system and the fiber are probably taking all the water away from everywhere else, but still no success. Yeah, I don't have the IBS type swings, only this one way -- not going. I am ordering new probiotics today and hope to do better eventually.
  22. Gjensen, just to have a couple of possible probiotics, do you remember which one you took or take? Thanks. Katie, since I don't know if that is what I have yet, it's hard to know. But I have been sorely lacking in fiber for a long time, except for what the gastro has added to my diet. Meaning I think I am pretty deficient in fiber, except for the bran he added. I'm beginning to think becoming a fruitarian for a short time might be the answer. But if I ever get in touch with the gastro (we have been trying each other all week without success), I will get that test. Thanks again Jackie. Actually I wonder if what is going on is severe inflammation of my intestinal walls. But how do you tell.
  23. Thanks so much for answering! Sometimes with all of this, I feel very alone. Yes, I have been taking culturelle, but as you say, Jackie, it isn't helping. What is florastor? A friend of mine who does colonics (I had one, unfortunately that too did very little to help) suggested Prescript Assist, a 27 strain probiotic, heavy duty. Yes, the gastric emptying study sounds like a good idea. I've been trying to reach this other Gastro person who might be amenable to that. In the meantime, besides probiotics, what in the world can I do? I'm really sick of taking all this other stuff which doesn't even work that well, and I think it may hurt. Gjensen, may I ask, what do you credit for your improvement?
  24. Until August, I had my digestive problems, but since a colonoscopy in August, it's like my digestive process has shut down. The timing may be coincidental, I don't know. It's as if nothing in my intestinal tract is moving properly-- or at all -- without lots of aids and even then, it's totally not normal. I don't want to become dependent upon laxatives. I honestly don't know what has happened. My internist suggested that this could be pots related and an autonomic dysfunction although my gastroenterologist thinks that's ridiculous and so I'm supposed to take bran and colace and miralax..... I've started taking a probiotic which hasn't helped yet....No matter what I eat, if I don't take something, I become impacted. Any suggestions on what to do or what could be going on?? Thanks a lot. Lynnie
  25. Yes, it is low. My bp at times can drop to 72/50. Then I feel really lousy, dizzy, faint, foggy. Lots of fluids, lying down, of course salt, can really help. Everyone is different on how they react to different pressures. Sometimes I feel lousy when it's 85, sometimes I'm okay. Does position affect it at all? When I stand up when it's low, I feel the worst. That's when lying down really helps. I agree that a medication adjustment might be in order.
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