shan1212

YES! My first POTS episode was after flying to Paris with my husband for our fifth anniversary. We arrived, I felt fine, we ate lunch, and then I spent the afternoon and evening on the bathroom floor while my husband got me Gatorade and a baguette. If I'd been at home I'd definitely have gone to the ER. Then three months later I flew to Miami to meet up with some girlfriends. We went out drinking, and the next morning I woke up feeling like death. I texted all my friends, "Need Immodium AD and gatorade, SOS" but they were all still asleep. Again, if I hadn't been in a strange place, I probably would have taken myself to the ER. I gradually recovered over the course of the day and only drank one glass of wine with dinner, but then the next morning when I woke up to catch my flight I felt horrible again. I could barely stand in line to board the plane. And they don't carry blankets on planes any more! I was so so cold and the woman next to me had to lend me her jacket while I shivered. Then a month later we flew across the country to visit family. I was fine while we were out there; I even went for a run. The third day we woke up to fly home and I could not get vertical. It was the worst feeling in the world. My husband's aunt lent me a blanket and my husband basically dragged me and our 18 month old onto each flight and I just lay there wishing for death. Again, if it hadn't been for the circumstances, I would have gone to the ER. Anyway, not that you really needed to know all the details , but these were my first POTS episodes so they are very vivid in my memory. I did fly one more time before getting pregnant last summer (haven't flown since), and again, this was before I knew I had POTS, but I at least had figured out that flying made me sick and made sure to stay super hydrated. I also found that for whatever reason, I couldn't stop moving. If I sat still on the plane, I would get ill, so I just pumped my arms and made my husband talk to me the whole time and I was OK. I think it makes sense that flying affects us what with the change in pressure and temperature and the dryness. The next time I fly, I plan to guzzle water with EFS (electrolyte powder) and to wear compression stockings. I'll also bring my own blanket.

I'm having a hard time accepting it too. Since I was diagnosed when I was pregnant, I kept thinking that after I had the baby, it would get better. But now I seem to be worse than I've ever been except for the horror that was the first trimester. And then I'll have a few good days and I'll think, "See, it is getting better . . . I don't really need to worry so much about my hydration or my sleeping etc." And then I wake up feeling crappy again.

I didn't start having episodes where I needed to go the ER, was incapable of functioning, or had GI trouble until after I weaned my first daughter, but I wonder if I have had POTS "forever," or at least since I was a teenager? Here are the facts: *When I was in 9th grade, I had bouts of unexplained tachycardia and was monitored by a cardiologist but no TTT was performed. As far as I know, no cause was found (they probably thought I had anxiety). *I've never been able to blow up a balloon or carry on a conversation while exercising. *When I began exercising regularly in my mid 20s, I couldn't run two blocks (I had a BMI of 23 at this time, which is overweight for my frame, but I wasn't extremely overweight or anything). I had to work up to power walking 6 miles over the course of 6 months before I could run a mile at a slow pace. *I've always found it difficult to lift my arms over my head. *I've always had trouble regulating my body temperature. *When I exercise, I get super overheated (I actually don't know if this is a side effect of POTS . . .???). When I go for a jog in the winter, I find that I need much less clothing than the other joggers, and in the summer, I need tons and tons and tons of water. *I've always needed constant access to water. My husband and I always bring water with us everywhere we go. *I've always needed 9+ hours of sleep a night. So what do you think? Have I always had POTS? I know you can't go back in time and diagnose me in 9th grade or anything, but I'm wondering if it sounds like this is a pre-existing condition I've always had or something that suddenly came on when I weaned my daughter.

My friend who also has POTS has recommended yoga to me. I have always been a home/solitary exerciser, plus my husband and I have enough difficulty finding time to do "our" things as it is with a toddler and a baby, so I'm hoping to find some yoga DVDs I can do at home. So my questions are: Has anyone done yoga and found it to be helpful? What DVDs or types of yoga are helpful for dysautonomia? (I believe there are different types of yoga, but I don't really know!)

Sometimes i feel like I have to keep moving or else I'll get dizzy. I lost four pounds in one week (but I have a lot to lose postpartum so that wasn't too crazy) this way. I have recently had a long bout of fatigue, but I wonder if it was the metoprolol I was taking. I don't really get how metoprolol will help my symptoms so I've stopped taking it with my cardiologist's blessing, and I do feel a bit better. And of course, having a three month old doesn't help the fatigue either! I feel kind of like I have two gears -- first and fifth. I'm either go/go/go, or I want to rest and be still. Having to do things slowly or to sit or stand still for a long period of time is the worst. But I can move around and get things done no problem.

Shannon, wow, we're totally twins. Now no one will ever remember which one of us is which! Except I'm older. My girls are 2.5 and almost 3 months. I know it hasn't been that long since I gave birth but I confess I thought post-pregnancy I would revert to how I was when I first started having POTS symptoms, which was ill (vomiting, diarrhea, chills, and/or unable to get upright) only once every couple of months (I got sick after weaning my first daughter, so I did experience a pregnancy with POTS with my second, which was one of the hardest things I've gone through). I figured I could deal with being sick every couple of months. I wasn't expecting to feel symptoms all the time. My husband keeps saying that this is still a dynamic time in terms of weight loss, hormones, etc. and I need to have hope that it will get better. I gained almost 50 pounds with both pregnancies, but unfortunately I don't lose it quickly. I still have about 25 pounds to get back to my pre-pregnancy weight with number two (and 12 more beyond that to get back to pre-pregnancy weight with number one, but I was super thin then so I've let that goal go). Have you watched the Dinets video about POTS on YouTube? I found it on this site and watched it with my husband. It was definitely eye opening for him and very affirming that this is a real and serious thing that I have. That was helpful. That doesn't mean he's not allowed to grieve what we're both losing if I'm sick a lot, or to feel stressed by the extra work that he has to do, but it definitely helps that he gets it. Well, most of the time. So how long do you imagine you'll be staying with your parents? That's got to be so hard. I hope you get some answers out there.

We are POTS twins! I'm new here too, and I also have two daughters and had an onset of symptoms after weaning my first daughter when she was a year old and getting my period back. I wonder how many people have had that be a trigger? I'm glad you have a best friend who can relate. I have a friend who has it as well. She is very helpful as people just don't know much about it. My mother-in-law's boyfriend decided I didn't have POTS after googling it. Oh, OK, I'm sure the cardiologist was wrong (eye roll) . . . I'm fairly early on in trying to figure out how to manage my POTS. I do think there's a mourning/acceptance process involved and I recognize intellectually that I need to go through that but emotionally I'm overwhelmed.

I was diagnosed with POTS during my second pregnancy, but I've always had some of the symptoms, and I started having POTSy episodes (without knowing what they were) when I weaned my older daughter in the fall of 2010 and got my period back. When I became pregnant last summer, I thought I had morning sickness (though I never threw up) because I felt awful all day long. Thankfully my OB had had a previous patient with neurocardiogenic syncope aggravated by pregnancy (who had had two or three babies). I had spent a couple of weeks calling the nurse in a panic about my "morning sickness" before this (she told me to try gingerale) so it was such a relief to have somebody say, "No, it's not all in your head." This was a Friday, and she got me on a home IV starting that day and in to see the cardiologist on Monday, where I was diagnosed with POTS. The IV helped (I was on it for a week) and then I just basically convalesced as much as a stay at home mother with a toddler can do. Thankfully I was able to line up help in the mornings, and my daughter napped most of the afternoon. It was still a really hard time, and I do remember that my worst fear was that I would have a miscarriage because I knew I wanted more than one child but I didn't think I could start the process from scratch again. If I wanted a third child would I do it again? Yes. I know it would be hard but I made it through and I could again. The second and third trimesters were much better - some fatigue (but hey, that could have been being pregnant with a toddler to take care of) and a couple of POTSy days but nothing too bad. My first child was a c-section for "failure to progress" (I was induced for no particular reason and I believe I got the epidural too early), so I started considering trying for a vaginal birth with my second child. My only concern was that the POTS would be an issue. I switched to a midwife practice at the large university medical center in hopes of increasing my chances of avoiding a second c-section, and I'm happy to say that my second child was a vaginal birth. I did have the epidural again (this time at 10cm instead of 4cm); the nurse anesthetist was briefed on my POTS and increased the strength of it gradually. I was more mobile than with the first epidural and my BP was fine. Although I believe that switching practices really helped me have a vaginal birth, I will say that the midwives were not as understanding of my POTS as my old OB was. After an internal exam at 38.5 weeks, I started having contractions and had a really bad POTSy day. I called the midwife on call in a panic, and she acted like I was having an anxiety attack. I would have appreciated a little more understanding, but on the other hand, I'm sure my old OB would have just said, OK, come in and we'll do a c-section. The POTS symptoms and the contractions subsided and I went into labor and had my baby on my due date. I did not feel POTSy at all during labor (that's not say it was easy, of course). So anyway, now my baby is almost 3 months old and my POTS symptoms, while not usually debilitating, are affecting me daily. I guess this is because my blood volume is still decreasing? I'm hopeful that I'll figure out the right combination of salt/fluid intake, rest, exercise, and meds, and things will improve.

Hello. I'm a 32 year old mother of two who was diagnosed with POTS last summer when I was in the first trimester with my second daughter. I had bothersome but manageable morning sickness with my first pregnancy, and I thought that's what i had, but then I realized, hmmmm, I'm not even throwing up, and other women throw up all day and can still function! I, on the other hand, couldn't even sit up. In hindsight, though, I think I've always had some symptoms -- in 9th grade I had a racing pulse and was monitored by a cardiologist, but they found nothing (didn't do a tilt table test). I've never been able to blow up a balloon, and when I exercise I cannot maintain a conversation. It's difficult to do exercises where I lift my arms over my head. I think the POTS became exacerbated when I weaned my first daughter and got my period back. I had several strange episodes where I'd throw up or have diarrhea, and I have always had a stomach of steel . . . would throw up once in 5 years, maybe. Since fall of 2010 I've thrown up numerous times. Anyway, these episodes seemed to be triggered by things like flying or getting my period. Once I even went to the ER because I couldn't get upright, but I couldn't really put my finger on what felt off. I just knew I felt awful and wanted help. They gave me IV fluids. But then I recovered and ran a 10k the next weekend and didn't think too much of it. When I became pregnant again the symptoms started up again, but this time coupled with morning sickness, and this time they didn't go away after a day. My OB was on the right track and said she thought I had neurocardiogenic syncope and got me on home IV treatment and in to see the cardiologist right away. I never had a tilt table test, but just going from lying to standing my pulse shot up 40 bpm immediately, so I guess I don't need one. I tried 50 mg of metoprolol but went down to 25mg per day because it would make me dizzy upon exertion. Around the same time that my morning sickness waned, my POTS symptoms improved and it became difficult for me to tell what was POTS and what was pregnancy. I got through the first trimester with a lot of help from friends and family and hoped that after I wasn't pregnant any more, I'd return to my pre-pregnancy state of being ill just every couple of months. It's been 11 weeks since I gave birth and things have been bad for about the last 8, so I'm worried that I'm wrong, that this is the new normal. Now I feel sick some of every day. Some days I feel mostly good, and some days I feel mostly bad. I wake up dizzy and with diarrhea a lot of days. Last week I had extreme fatigue. I went back in to see the cardiologist, and she tested my thyroid because I lost four pounds in one week (when the only thing that didn't make me feel dizzy was moving constantly, so I just never sat still all day), but it was fine. We don't really want to try florinef because I'm breastfeeding. I'm just kind of frustrated. I also got the Mirena IUD three weeks ago and I wonder if there's any connection with an increase in my symptoms. Has anyone found that? I know hormones play a big role, but since my period seems to aggravate things, I thought maybe hormonal BC would help. ??? Anyway, I'm really excited to be here (well, not to have POTS obviously, but to have found this community) and look forward to participating. I can tell this forum offers people a lot of support and I look forward to being on both ends of that.