MomtoGiuliana

Amy--regarding high heart rate, I doubt that the fact that you have developed POTS now as opposed to when you were a teenager would make you more susceptible to heart damage--unless, like Merrill said, you have some kind of heart structure problem. That said, it would be reassuring too to talk to a cardiologist about this question. Like Merrill, I have never had a doctor express concern about my heart rate being over 100 when sitting or 140-160 standing--and I saw many doctors during pregnancy and post partum (post partum is when it was regularly 140-160 standing). Even when my POTS flared at age 30--probably in response to my developing Hashimoto's, and my heart rate was around 90 to 120 night and day, no doctor expressed any concern about it as far as my long term health. Regarding heart rate being in the low 100's, my understanding from talking to both my endocrinologist and my POTS specialist is that this is not dangerous or going to cause long-term damage in an otherwise healthy heart. But--I understand! This stuff worries me too--and b/c I still have a lot of tachycardia I am thinking about going back on a small dose of bb. I think the high blood pressure may be a higher concern and more of a reason to take a low dose beta blocker. Again, talk to your doctor about that. I am in the same boat now with that. I used to have LOW blood pressure. Now I have borderline high blood pressure--my hope is that I will go back to my pre-preg state, but that may not occur. Take care, Katherine

Runnergirl--I am so fascinated that your doctor says you have the most unstable thyroid she's ever seen--my endo has said the very same thing to me. It got even worse during my pregnancy--thus augmenting my POTS symptoms especially going into the 3rd trimester for some reason. I had to keep getting dosage adjustments. ernestine, yes I have heard that it is not unusual for lupus patients to also have POTS. So frustrating that so little is really understood about these autoimmune conditions that affect millions of women. BTW, I remember seeing a study that found that women with autoimmune conditions on average have slightly longer lifespans than women without. Quality of life may be another story tho.

The controversy over TSH never ends, it seems! Most doctors use it alone to make a decision about dosage. However, many patients and more doctors now believe that the entire panel needs to be reviewed as well as the antibody test(s). I'm not an expert on this by any means, but I am pretty sure your heart rate needs to be pretty consistently in the 120 bpm+ range to develop cardiomyopathy. It does sound though that with a standing rate of 110-115 bpm that is consistent, going back on a small dose of BB makes sense. What is your heartrate when sitting or lying down, just out of curiousity? I noticed the breathing thing most when feeling overheated or after eating. No connection to standing for me. It felt like my lungs were filled with glue and breathing was a bit of a chore. My main symptom now are the darn PVCs and flutters, and tachycardia at times. At times my heart rate will be in the 80s standing, other times over 100. When I was first diagnosed it was consistently 120-160 standing! So, it has been a great improvement. Like I said tho, it definitely was a year postpartum before I got to that point. Katherine

Calypso I am so so sorry for all that you are facing right now. I can relate to the breathing challenges--I have felt that way when my POTS has flared. Also, I have found yoga to be quite beneficial for whatever reason. I have not had much pain like the pain you are describing, just weird tingly feelings in my skin and that kind of thing. I didn't really feel "well" postpartum til after a year had passed, so it may still take some time for you too. I found the first year of "recovery" to be very very slow and to take unexpected twists and turns with symptoms--it was not a smooth progressive improvement. And I did not have the stress of an ill parent, much less a recent loss of a parent, to deal with. That does affect your health, to have such significant stress in your life. I am glad you are looking into other causes for some of your symptoms, it may be that you have something else going on too. When was the last time your thyroid was checked--I know you said it has been checked--but changes can occur fast with autoimmune thyroiditis--if only the TSH was checked, perhaps ask for a full panel and also a check for antibodies against the thyroid. My thoughts are with you as you care for your mom, too. Take care. Better days ARE ahead, I believe. Katherine

Corina I know, "only" was a poor word choice! Geez! Hashimoto's is an autoimmune disease in which for some reason the body creates antibodies that attack and eventually destroy the thyroid. Katherine

Calypso Have you been tested for thyroid disease? Not that I think breathing problems are related, but my POTS symptoms flared for the first time when I developed Hashimoto's--only I didn't know it was POTS at the time. I also remember having feelings like I couldn't breathe at that time. Katherine OK--never mind, I see you say you have been tested. Did they test you for antibodies, or just your TSH? Perhaps you might want to ask them to test for antibodies and also do the whole thyroid panel, not just the TSH.

This issue may have been polled before--I'm sorry if it has--I haven't checked. This connection of autoimmune disease and POTS seems to come up in our discussions from time to time. I have Hashimoto's and at the time I was diagnosed, I was told that I had a pretty high probability of developing or having another autoimmune condition as well. I am just posting this poll out of curiousity. Thanks for participating. Katherine

I love Corina's reply--it is full of wisdom. There ARE many things to consider when choosing pregnancy--whether you are ill or not. If you are ill, there are even more things to think about. For anyone, the choice to have a child is sort of a leap of faith. You think carefully as you can about it, and if you chose to go forward, you do it with the awareness that there are many unknowns. I think becoming a parent means accepting a lot of loss of control over your part of the universe, that you may have felt you had before. Many women with POTS have successful pregnancies. Unfortunately, with our condition, it is pretty hard to predict at all how you will feel and how your health will be during pregnancy (for some it improves for others not) and afterwards. In my individual case, I didn't know I had POTS until post partum. My pregnancy was very very difficult for me physically in the late 2nd and much of the 3rd trimester, but in the end, I had a healthy baby girl, born at term. POTS did not appear to affect her fetal development in any way--it just took a physical toll on me. Still, I would do it again--even if I knew beforehand how hard it would be. That said, I personally do not intend another, b/c of problems I had at birth (that may not be POTS-related--may be related to my daughter's large size and that I had a fibroid--although I did have about 5 days of elevated blood pressure at the end of the pregnancy that probably was POTS related) and also my concern that my POTS could be a lot worse the 2nd time around, and also that I personally choose to have one child biologically. Do you have to go off all meds? Is that what your doctor recommends, or is that your preference? I am with you regarding concern about the potential effect of meds on the baby, but I think some POTS meds are considered safe during pregnancy. Perhaps you can explore that some more with your doctor and also by learning about the meds taken by other women with POTS who have taken meds during pregnancy. Children, young children especially, require a lot of energy. However, like Corina says, it does, as they say, "take a village to raise a child". Things that you can't do could be done by others, if you have that support available. Your love will shine through with the things you are able to do. Good luck with your decision. Katherine

I took Prozac, 20 mg and a small dose beta blocker for a little over a year. I decided to try going off of them 2 months ago. So far, everything is ok, but I am having a lot of PVCs and sinus tach, especially in the AM. My doctor told me that SSRIs taken for awhile make some kind of subtle, PERMANENT, changes in the brain--wish I knew more about that--but anyway, it may be that the benefit of taking an SSRI for awhile may continue once you are off it. I believe I would not have gotten better without these drugs. I did also use Xanax, sparingly, on occasion early on to help with the panic episodes. Good luck with your decision. Katherine

blackwolf--when my doctor made that comment about PVCs and brief atrial fibrillation being common in young women, my strongest thought was, ok, but I am probably always going to experience this! I am curious though if there are cases where it eases off with menopause--otherwise, where does this understanding that this condition is one of young women come from, I wonder?? BTW, overall I feel better now off the beta blocker, it's just these irregular beats are much more frequent and forceful. I really have to pay more attention to keeping plenty of fluids in me now. Katherine

Yes, when my POTS was at it's worst, and still now on occasion, I waken to tachycardia, or it gets worse on getting out of bed at night. I have always wondered about the physiology behind that, too. I guess it is related to the dehydration and blood pooling that occurs when you are prone for a period of time, but I also wonder if there is some connection to the body's diurnal cycle and hormonal changes. Hope it eases for you soon. Katherine

Julia59 I have had the same experience you have--the awful fluttering/quivering feeling (during or following exertion--e.g., climbing several flights of stairs). I have described it to my electrophysiologist/POTS specialist and he has been unconcerned b/c it is so short-lived when it happens. He said it was probably a brief episode of atrial fibrillation and said it is almost always a benign condition quite common in young women. Perhaps this means it gets better after menopause?! The PVCs are the scariest part of this condition, no question. I get a lot more of them since I decided to try going off the beta blocker. Drinking plenty of fluids seems to help--also eating lots of fresh veggies and fruits--which I think must keep my potassium up? It is comforting to know that others are living (well!) with this problem too. Take care everyone! Katherine

seaboardbc, Sorry that you are among our ranks. It is interesting that you did ok with your first pregnancy but not with the 2nd, and also that you had problems with hypertension the 2nd time. I also had the water retention you describe, except for some reason my blood pressure remained good for most of my pregnancy. But, I was super puffy by the 8th month and didn't look like my normal self either. I am definitely not going to have another pregnancy. I unfortunately, suspect the prognosis for the 2nd is likely to be worse. I am nearly back to normal now, but I still have remnants of POTS symptoms and still have not so great days. Katherine

I understand your fear, particularly if you have had bad experiences with medications in the past. Unfortunately, like most people with this condition, you are most likely to get much better only with the support of medications. And this means trying (sometimes) a few different meds before you find what works for you. You are right that some could actually make you feel worse--that was my experience. And whatever you do end up taking, it is probably still going to be a long haul before you start to feel a lot better (could be months). Take things one day, one pill, one minute, sometimes, at a time. It might help to see a counselor, or this might sound strange, but someone trained in hypnotism. Such folks know many techniques for helping people control their own thoughts a bit better. (I'm not suggesting you be hypnotized, per se!). I saw such a practioner, who was also a counselor, and he really helped me to manage my fears and anxieties with both mental and physical techniques (e.g, breathing and meditation exercises). I also agree with what Earthmother states, that the body does know how to heal. Try to have faith in that as well--it's important to the healing process, whether you take medications or not. There's a great book called Spontaneous Healing by Andrew Weil that I recommend. Take care and keep posting whenever you think anyone can be of help. Katherine

This clearly is a reflection of the health care crisis this country is in or headed for. I understand why doctors are doing this! Malpractice insurance is through the roof in many states. The cost of paperwork alone to process health insurance claims can be staggering. If a doctor is good and treating me or my family professionally and helping solve medical problems, it's worth it to me pay them for these services. I think sadly a lot of people with our condition end up spending a lot of money (either our own or that of our insurance company) on inadequate care, unnecessary tests and office visits, etc. That's why I think the most important thing we can all do is educate--or try to--the medical community and patients suffering from autonomic dysfunction conditions--as well as advocate for more research. Thanks for sharing this. Katherine

I've never heard that there is any connection between the liver and POTS. POTS has to do with dysfunction of the autonomic nervous system. The liver shouldn't be affected. But as the above post suggests, any illness or infection (including those that might result in abnormal liver function tests) can bring on or exacerbate POTS. I hope your doctors can figure out the cause for you of the elevated enzymes. BTW, the only abnormal test I ever had was electrolytes--sodium and potassium have been abnormally low in the past. This I think has to do with abnormal pooling of blood below the heart which makes you excrete more electrolytes than you should. I think that's the reason?! Take Care, Katherine

I also had exercise intolerance as a child. It was mild, but I never excelled at sports, much to my father's frustration. I remember in elementary school the only one of the physical fitness tests I could come in at at an above-average level was "sit-ups"--I guess now they're called abdominal cruches. Whenever we went hiking as a family, my parents have told me I always complained about being tired. (In fact, I remember them comparing me to my 18-month younger sister, who was "so much more hardy and not a complainer"--I took it like a personal attack--it never occured to them or me that there could be an underlying physical explanation for it.) I was ok at running longer distances--never had problems with the mile and a half run in high school--but horrible at sprints and horrible at basketball or anything like that. I've thought about that in relation to POTS and do believe there is a connection--in that, I probably always had POTS at some level, it was just not detected or detectable. Katherine

Jessica, thank goodness. I've been worrying about you all! Katherine

Interesting that some folks on here from time to time mention vitreous floaters as a symptom they noticed. A lot of people get floaters. People who are near-sighted are most prone to them. It is hard to believe there is any connection to dysfunction of the autonomic nervous system. On the other hand, pupils that are slow to react to light changes, may be a symptom of dysautonomia. Thus, the problem with bright lights (which I also have). ramakentesh--I am sorry for all you are going through right now. Your symptoms are overall quite similar to what I experienced when my POTS was at it's worse--as is the treatment you got from doctors. Even with the elevated blood pressure, my POTS specialist AND my endocrinologist told me to take both extra salt and extra fluid--2-3 liters a day. That combined with a low dose beta blocker got my blood pressure on standing under control very quickly. A low dose SSRI also helped stabilize (apparently) my autonomic nervous system. Do you have a doctor who is knowledgeable about POTS? This is so important, b/c each of us is so different. What worked for one may or may not work for another. You may need to try different treatment regimes to get better.

I also can't imagine why general anesthesia would be dangerous for us. I'd be very interested in hearing the explanation! I had to have general anesthesia when my daughter was born via c-section, due to abruption. B/c I hadn't had an epidural and they had to move fast, they put me under general anesthesia. ( I had POTS but was undiagnosed). Anyway, I had no reaction to the anesthesia. I think it was the SURGERY that my body responded to. This is what my POTS doctor has warned me about--not that it is life-threatening, but just that we dysautonomics are highly sensitive to surgery, like we are to most any stress (but surgery is super stressful to the body), and he has seen most of his patients have an increase in symptoms for some time following surgery. We are also often sensitve to epinephrine and for that reason it should be avoided for use in local anesthetics. Katherine

I've always found that being less emotional works well with most doctors when in an appointment. I've had my worst experiences when I was seeing a doctor while feeling at my wits end. I was always sent home being told I had an anxiety or other psychological problem. I know this is very hard when you feel angry, frustrated and very sick and exhausted. Write down your history of symptoms and any blood pressure or heart rate data you have collected on yourself. Try to provide this information as dispassionately as you can. Ask the doctor to measure your blood pressure and heart rate lying down, sitting and standing. There is nothing worse for a doctor's ego than questioning their opinion or trying to tell them about an illness they have never heard of. Unfortunately, it gets you nowhere with many doctors. I have had two doctors who were incredibly arrogant and became down-right bull-headed about my condition (insisting I had post partum depression pure and simple and closing their minds to any other possibility) when I asked them to run additional tests or questioned their diagnosis. Only the most competent and confident doctor will be open to your own ideas about what is wrong with you (I have a doctor like that now). So, anything you can do to stroke their ego will only help you, bruising it will be counter-productive. GOOD LUCK. I know how hard it is. Katherine

calypso: Cervidil--that's what I had too--the tape thing that you describe. I was thinking it was some kind of gel, but maybe that's not the right term. In my case, like I said, my hypertension came on at the very end. Giuliana was actually overdue when I was induced. She was 10 lbs 2 oz, so I don't think the hypertension affected her too much. I didn't have diabetes, but they kept checking her blood sugar levels after she was born since she was so big, but she was fine. I think birth weight also is affected by genetics as well as environment (of course!). I was a big and long baby too. I think the theory makes some sense and I appreciate you sharing it. Clearly something happens physiologically to some of us during pregnancy and post partum to cause POTS. There must be a causal relationship. There is so little understood about preeclampsia, too. Someday I hope both will be better understood so that it can be managed and fewer women and babies have to go through what we have. If doctors could even just recognize POTS in pregnant women, it would help reduce risks, I think. Even with as little as we understand it. My daughter is pretty healthy too. B/c she is in day care part-time she brings home colds and she is also prone to ear infections. She is very active like any toddler and has a vocabulary of close to 200 words. I worry about her, like all moms do, but maybe more so, b/c I can tell already she is going to be tall and thin like me and I don't want her to go through the problems I have with POTS. Calypso--I understand your feelings of frustration with your mother. My mother didn't smoke, but she didn't educate herself about childbirth or breastfeeding when she had me. This was in the late 60's when natural childbirth was beginning to get popular, etc. Anyway, my mom delivered me vaginally, but she was under general anesthesia--so weird. So I suffered physical trauma from that and had a low apgar. Then she didn't know for some reason about the benefits of breastfeeding and had low confidence in herself about it, so only breastfed me for a couple of months. She educated herself better before having my next three sisters. They were all born with no interventions and all breastfed longer. I am the sickest of all of us--so I always wonder if there is a connection there! Katherine

I can't remember the name of the medication now, but that is very interesting. I had read in numerous books that the cervical gel was more gentle than pitocin and LESS likely to have side-effects which is why I asked for it. I have also often wondered whether the induction itself brought on the abruption. It was a very sudden onset of labor. I was crampy for a couple of hours and then the contractions came on and were so close and long it was very hard to manage. That went on for a couple hours that felt like days during which I steadfastly refused pain relief believing it would all soon enough be over, and then the abruption started. I will do some more research on that though. Definitely I think the fact that I lost so much blood and had to have a c-section made my POTS completely unmanageable for the months that followed. I truly believe that had I had a natural or at least a normal birth, my POTS would never had gotten so dramatic. Thanks for doing the poll--it should be interesting! Katherine

Jessica Interesting about the formula issue too. Even before all this mess with POTS, I felt that the fact that I was formula-fed had contributed to my Hashimoto's. I was determined to breastfeed especially for that reason. Sadly I stopped when Giuliana was 4 months old and I worry about it. I stopped b/c of the meds my POTS specialist prescribed. He felt I could continue to breastfeed safely with them, but the pediatrician said no, so I weaned her, which was so very painful emotionally. But, I think our problems have to be more complex than only being connected to breastfeeding. For example, my grandmother had exactly the same birth and pregnancy and postpartum experience I did. She was quite sick, lost a lot of blood during delivery, and nearly died. I think there is a genetic connection too. And my sister who has been diagnosed with POTS was breastfed for 8 months. It's true all of these various assaults on the body (formula vs breastmilk, environmental contaminants, poor food choices) must have cummulative impacts. I think genetics is very very strong though, even so. Katherine

Interesting. The thing that makes me question the autoimmune connection is only that I thought the body is immunosuppressed during pregnancy. Most women with autoimmune conditions see their conditions improve during pregnancy and then flare up following. But, at the same time, obviously in my case POTS flared in response to the stress of pregnancy. That much was clear. I do also have Hashimoto's which is an autoimmune disease. As bad as my POTS seemed during some of my pregnancy, I still worked for most of it, full-time (up til the 7th month). Post-partum I went for a couple months of barely being able to stand. I had excellent bp until the last 5 days of my pregnancy--even though I had tachycardia and episodes of low bp and days of feeling just completely horrible. Then it suddenly shot up to 170/90. My ob/gyn shrugged her shoulders, told me to rest and come back in a few days to re-check it. Well, by that Monday (at which point Giuliana was 2 days late) I really felt terrible. My blood pressure was all over the place--every time it was measured it was different -- from 110/70 to 180/90. So, she decided to induce. I asked for the most gentle induction method, which I now can't remember what it is--but isn't pitocin by IV. It's the gel that is placed on the cervix. She didn't check my bp again for quite awhile. I went into labor 6 hours later and all was going seemingly normal for several hours. Then I had severe placental abruption and was luckily in the hospital or would have died. Anyway, sorry for re-living my nightmare. It's hard to forget, and forgive my doctors for not managing my bp or understanding what was wrong with me. I lost so much blood I had to have a transfusion, which was also very scary. Anyway, I guess it's obvious why I am terrified of another pregnancy. I do so hope that the medical community can get a handle on this so that others don't have to experience what I did. BTW, I was never diagnosed with preeclampsia. My ob/gyn never even told me I had pregnancy-induced hypertension. She told me that the reason I had the abruption was that the placenta was partly attached to a very large fibroid and the two detached during labor. Anyway, this ob/gyn has been fired by me. I haven't even gone to an ob/gyn since then, I have such an aversion to them. I think most of them know very little. Sorry for all my venting! I should be so happy that I am essentially well for now and that my daughter is healthy--and I am. Katherine