MomtoGiuliana

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

That's great news, AprilMarie. I'm glad things are going well. What medications are you on now, if you don't mind me asking? I am just curious b/c I know I probably couldn't handle another pregnancy well without medications, even tho I am off them now. Anyway, we are now starting to look into adoption and I am excited about it. I have friends in Botswana from my Peace Corps days, pretty high up in govt now, who have enthusiastically agreed to help us adopt one of the thousands of children made parentless by AIDS every year there now. I know it will be a long haul and might not even work out, but the effort is worth it.

Corina Nice talking with you too. I hope you find relief very soon. Katherine

Roy--I am so sorry for all you have been though, physically, mentally and financially. I think all of us have been affected financially by this illness in some way. I was out of work for a year. Fortunately, I have an able-bodied husband. And, my employer's disability insurance kicked in and I got an award of a whopping $3,600. Thankfully, we also had excellent health insurance, that is now very expensive b/c I am part-time and paying the entire premium, and I cannot get any other insurance due to POTS. Have you tried to get SS Disability? Our society is so focused on working and so many of us are literally working ourselves into poor health. We also don't take good care of our frail and ill in this country. It is a sign of a society in some level of break-down, I think. I hope things improve for you.

justme--For reasons not well understood, antidepressants (SSRIs anyway) help support proper function of the autonomic nervous system and therefore aid many POTS patients in recovery. Doesn't work for everyone though, unfortunately. Katherine

It sounds like your sister may be in denial about your condition as well as her own. It isn't really a normal response that she had to your fainting episode--who except a child might first assume someone is joking when they keel over? I'm sorry for your very difficult week, but it sounds like perhaps it has shed new light for you on the state your sister is in?! I think the state of denial of the seriousness of our conditions is common among our family members in general. It is so easy too when we look so normal,and have good days. And I agree with futurehope--being tired is different from being unable to function. Most people have never experienced the latter, so truly cannot understand. Anyway, I hope you feel like talking to your sister and letting her know how you felt in as gentle a way as you are able.

Any stress on me physically or mentally increases the frequency of PVCs for me. Sometimes they also increase in frequency for reasons that elude me!

Danelle How long have you been taking Zoloft? It took me 6-8 weeks to adjust to Prozac and during that time most of my POTS symptoms were markedly worse, including ectopic heart beats. I also had diarrhea, nausea, shakiness, bad anxiety, exhaustion. I stuck with it only b/c I really trusted my specialist and he kept re-assuring me that it was very likely to get better and the SSRI would start helping me to recover. He was right, but I still remember those first weeks as being awful. Katherine

Corina The difference between how childbirth is treated here and in Europe is so interesting. Here it is treated as a medical condition and doctors are so afraid of lawsuits that they will do a c-section all too frequently. In my case, it was clearly necessary, b/c I had placental abruptio and was losing a lot of blood. If I were ever to have another child, the medical wisdom here now is to schedule a c-section at 37 weeks. This seems really crazy and unecessary and perhaps unhealthy for the baby. Anyway, regarding POTS, yes deconditioning could also play a role, but it wouldn't cause POTS I don't think--although definitely could exaccerbate it. I was wondering more about the injury itself. I think there are some people on this forum who developed POTS following head or spinal injuries. Yes, I know that mental confusion you describe--I also felt at times like I wasn't completely present--very awful feeling. It sounds like you have a very positive attitude--which is so hard to have when you feel so terrible, but is so important to getting well. Keep asking questions and seeking help. Katherine

Hi Corina SSRI stands for Selective Serotonin Re-uptake Inhibitor. SSRIs are usually used for depression--e.g., Prozac, Zoloft. But, it has been found that they also help support the autonomic nervous system in ways that aren't well understood. I'm sorry that you have been through so many medication regimes and haven't found relief. Yes, the c-section is an interesting coincidence. C-section rates are pretty high here in the U.S.--like 25% of all deliveries. I think it might be lower than that in most European countries? Besides having such difficulty standing, what are your other prominent symptoms. I also had difficulty standing for months, prior to treatment with an SSRI and a beta blocker. Then I started to get better. Now I am off the medications and am doing ok so far, although I still am mildly symptomatic. I wonder if the injury itself that you had brought about your condition? Most people do get better from POTS, particularly once properly treated. I hope it happens for you too. Katherine

Corina Surgery didn't bring on my POTS, but after a c-section I was remarkably more ill and remained so for months. My specialist told me it is VERY common for POTS to surface or re-surface after a surgical procedure, even a minor one. Recently I had a biopsy on my neck that resulted in my POTS symptoms becoming bad again for about a week. Hope you see some recovery soon. Perhaps you need to find the right medications for you still that will aid in your recovery. My POTS doctor also told me that about 50% of women with POTS respond positively to a combination of low dose beta blocker and an SSRI. Have you and your doctor tried that combination? Best wishes. Katherine

morgan--when I saw "dry sick", I thought--wow, there's a medical term I don't know! You can edit a reply after you post it--just for future reference. There's an "edit" button you can select that is to the top right of your posted message. Katherine

I like geneva's "stand strong" very much--it is a short statement and carries a lot of meaning for us, as standing with no symptoms is a goal most of us have had or still have. I also love Nina's statement. How about "Stand Strong: Courage Perseverance Attitude" or some combination like that? Perhaps we need a poll to help decide on this? Katherine

Thanks everyone for your responses and ideas. calypso I like your new rule. I think it will be mine too I have also had the experience of complaining of a symptom to a doctor and having completely unnecessary tests done as a result. I still have the symptom, but it is tapering off, I think. Seems a bit less intense each day. I know that burning-hot symptom you are describing. I have also had that. It is disturbing along with being uncomfortable. Katherine

I know how hard it is, having been bed-ridden, as you are, by this. I'm glad you have a specialist who can help you. Do not give up hope that your life can return to a high degree of normalcy. For many of us, it has, following or because of continued, effective medications and lifestyle changes. You will probably have to try some different medications, dosages and combinations to see what works for you, and it can be a very long haul. One question I have is how your doctor knows that "it's not the kind that typically goes away." and that your "sympathetic ns is so heightened that I've most likely had a problem for quite some time." My POTS specialist said that it is very hard to predict who gets better (except that most people do get a lot better) or how long it would take someone to recover to a reasonably well state. I guess your physician is basing his assessment on his experience, but I am just very curious what made him come to those conclusions--if you know. "Does anyone else have specific problems with the sympathetic ns?" I would say that we all do as that is a defining feature of POTS. I truly think that the mind is a strong instrument for healing--based on my experience. I'm not saying that you shouldn't have times when you give in to feelings of despair regarding a chronic condition--it's natural to do so. But, I think it is also helpful to the healing process to work on cultivating a positive feeling about your future and your body's ability to heal. The body and mind can do amazing things. Read "Spontaneous Healing" by Andrew Weil if you feel up to reading. I found it helpful and hopeful. Katherine

That's wonderful that you are finding relief from the cranial osteopathy. I have often wondered about that treatment and if it would be helpful. How did you find a D.O. that actually does that? I've read that most D.O.'s these days don't actually get training in that anymore--that it's more of an old-school technique.

HI Jessica! Other than this symptom, I feel generally fine. Less tired I think b/c I am off the beta blocker. I didn't realize how that was contributing to my feeling tired until I discontinued it. I do have episodes of tachycardia, especially in the AM. Like on my days off from work, I go to the park, beach or playground with Giuliana. If I get active (by this I mean raising my arms alot, climbing, lifting repeatedly) or stand for a long time, I notice a pretty high heart rate--like 150-170 bpm. I also have a lot of forceful PVCs throughout the day--but it doesn't bother me much only b/c I know it isn't anything bad happening! I have had this prickly symptom off and on for years--and it was definitely the absolute worst when my POTS was at its worst, so I think there is a connection. Hope your move to Florida went well! Katherine

Who knows, there may be someone famous with POTS--just never diagnosed. Good luck. Katherine

I tried going on the pill in 1999 and felt terrible--didn't know at the time it was a POTS flareup. I know many POTS patients take BCPs to suppress symptoms, but I had the reverse experience. I also had a difficult pregnancy, with a significant POTS flare-up (finally diagnosed post partum). I have often wondered if my body responds to BCPs and pregnancy hormones in such a way that it causes POTS to flare up for me. I also feel worst right at ovulation, whereas many POTS patients feel best then. Katherine

Does anyone get this symptom? I think it is probably related to dysautonomia. I've had it before but not for awhile. Last month I weaned off all my POTS meds. Now I am getting this symptom and wondering if I should have weaned off everything. It is a feeling in my skin, all over my body, of little burning pin pricks mostly, but it also feels a bit itchy. There's no rash. If you get this symptom, anything you are able to do to control/manage it?

Although each of our stories is different, and we all don't have the same problems, one thing we do all consistently share, it seems, is that we all had trouble getting a proper diagnosis. Unfortunately, autonomic problems are hard to diagnose and often unknown of by doctors, even specialists in cardiology or neurology. If you suspect you have POTS and/or NMH or something related, it makes sense to talk to your doctor about getting a tilt table test. Then of course, the challenge is proper analysis of the results and then, proper medication and other lifestyle modifications to get better. I had a tilt table test that led to the diagnosis, ordered by my endocrinologist. I was diagnosed by a POTS specialist who is an electrophysiologist (a type of cardiologist). Most electrophysiologists are familiar with POTS and NMH to some degree. Prior to diagnosis, I was misdiagnosed with anxiety and postpartum depression. The key to proper diagnosis and treatment is generally to find a specialist in autonomic dysfunction.

There are organic brands with no added sugar. I think Stoneyfield Farms should have one plain type with no sugar. My favorite brand is Horizon, also Seven stars, and Brown Cow. Maybe I need to check the ingredients again since you say you found a plain org yogurt with 10g of sugar--maybe I was eating more sugar than I thought I was!

Paige I know how you feel. I also had that feeling that I wanted to give up. It was just too hard -- sickness and guilt was ever present day in and day out. I was sick in bed after my daughter was born for months. Everyone thought I was depressed (and I was, of course--but the depression was due to being so ill). I also had days and days of staring at the ceiling, heart racing, too weak to do anything but breastfeed and eat and crawl to the living room once or twice a day, crawl to the bathroom. Thank goodness my mother was with me all that time to care for my daughter and me. That feeling of tremendous guilt that I couldn't be everything I wanted to be for my baby daughter at what is supposed to be a wonderful time, was so painful. Also, I felt so guilty that I needed others so badly. My husband also had a hard time with it. Although he was and is deeply committed to me and our relationship, he got so angry with me for my "bad" attitude. It didn't help--it made me feel even more that something was intrinsically wrong with ME--not my body. Please, please consider counselling with someone with expertise in chronic illness and talk to your husband about joining you. We also did some counselling--it helped me A LOT. I think it helped my husband too, although he's never been really sick a day in his life, so can't fathom why someone could have a "bad" attitude. How long have you been sick? How long have you had bad days in which you are unable to do anything you enjoy? Do you have good days too? I know for many of us POTS seems to come and go in cycles of sorts. When we are in the downward spiral part of it, it is hard to believe we will come up again. I know it is the hardest thing! Breathe and believe that better days are ahead. Thinking of you. Katherine

calypso I think you are right that most likely this is related to POTS. However, a glucose tolerance test, or a fasting glucose test, is inexpensive and should not be at all risky, so you might want to ask your doctor to repeat it. If nothing else it would set your mind at ease. It is unlikely you are developing diabetes given your previous test results. Personally, I cut out ANY sugar--even in minimally processed foods like granola and yoghurt. This doesn't mean a "low carb" diet, however. It's just the refined sugar that I cut out--so there is yoghurt I could still eat--just sweetened with fruit not sugar. I ate tons of fruit still actually. Fructose breaks down more slowly than glucose. And I still ate whole grain bread and pasta. But, you'll probably have to figure out what your body's needs are. Hopefully your symptoms will recede with time. I have to say that I am glad I got into the habit of not eating refined sugar (although of course I do eat the occasional sweet dessert now and then ). Regardless of a person's health status, refined sugar cannot be healthy--our bodies have not evolved to process a lot of this kind of sugar. People who overdo it or who are susceptible, may be more prone to developing diabetes, for example. Good luck. Katherine

We understand what you are going through right now. You have come to the right place. Keep posting and asking questions and for support. When my POTS was at its worst, I could barely move and my resting heartrate was at around 100-110--sometimes higher. Standing would bring it up to 160. For the vast majority of patients, there is significant improvement over time. It does take awhile for most people to get better--months or more. Especially if it takes awhile to find the right treatment regime. Hopefully you are being treated by a knowledgeable physician. I agree that, hard as it is, try to stay hopeful and BELIEVE you will get better. That helps so much with recovery from any illness, and this one is no exception. Try reading (if you feel up to reading at all) Dr. Weil's *Spontaneous Healing*. It is a very hopeful book that shows how important the mind is to healing the body. It also includes breathing exercises that help improve autonomic function (so he claims, and I suspect there is truth to it!). You are in my thoughts! Katherne