shan1212

I hope you get some good answers at your appointment. Hugs. I'm very sorry to hear about your loss. I have a really hard time blowdrying my hair too. Any exercise or activity that requires that kind of arms above head movement is tough, even when I'm in fairly good shape. I think it's a POTS thing.

My daughter is preschool age as well. I think you need to remember that kids try to make sense of their worlds and that involves a lot of silly assumptions. Like my daughter sees me nursing her sister, so she says that when she grows up, she will nurse her sister too. Um, no! I know it's hard to be a stay at home dad, or a grandparent or nanny who cares for a child, when it seems like it's a mom's world. Many children don't have a parent with them at home, and I hope you can see that as a blessing and not something that you need to lie about (though I don't think there's any harm in claiming you are a consultant if it makes certain conversations easier . . . strangers don't need to know all your business). Have you looked into a SAHD's group in your area? Hanging out with other men who are at home with their children might help you feel not so isolated. Remember that in this economy, a lot of dads are home with the kids because the mom is the one with employment. A lot of things go into the decision of who will care for the children, so I wouldn't assume that anybody is judging you. I see SAHDs all the time, as well as gay parents, etc. Maybe I just live in a more progressive area, but that is really no big whoop here. The person I hang out the most with on my street is a SAHD whose wife is a tenured professor, and he's in his mid 50s with teenaged daughters, so it's nothing new. As for having POTS and small children, I get it. I'm not very good at suffering in silence, so I'm afraid I moan and complain a lot. Last month my preschooler said she was "too tired" to go to school. She wasn't sick, had slept her usual amount, etc. I called her bluff and said she couldn't go to a birthday party that night if she was too tired to go to school. She decided to go to school. She was fine the next day, but the day after that, when it was time for school again, she said she was too tired again. It hit me that she sees me say that I'm too tired to cook dinner or do things, and then I get to lie on the couch. So she sees it as an excuse to get out of things. Ouch. Sometimes she says she's dizzy, too. Our condition is real, and it does affect every aspect of our lives, but that's not the kiss of death. We manage, we cope, we persevere, and our children learn from that too. I chose to be a SAHM, but it does frustrate me that now that I have POTS, I couldn't work if I wanted to. I don't like having the option taken away from me, just like I don't like knowing that I couldn't (or really shouldn't) have a third child. But this is my life, and I am blessed in many ways. Sometimes I do tell people about POTS when they ask if I plan to go back to work, partly because I want to make sure people don't think I'm lazy, I guess, but also because I don't want people to think I'm a woman of leisure. Ha. So I get worrying about what other people think, but ultimately, what's important is your family. Your daughter is blessed to have two parents who love her, and it's special that she gets to spend all day with you. That is such a gift, and that will be what she remembers 30 years from now. And remember, it's 2013, and a working mom and a SAHD are very common these days. Hold your head high -- your job is just as important as your wife's!

My cardiologist said she could arrange IV fluids for me before traveling with a little notice at a center in the hospital.

I missed this when you first posted. I just watned to say that I'm so sorry you're going through this. I've been there. Last July (four months postpartum) I felt very much like you describe. I just felt like a caged wild animal, like it was taking all of my powers of concentration not to go completely bonkers. I had tried and stopped metoprolol. I didn't want to take Florinef because everyone was all, ooooh, steroids and breastfeeding, scary! (I'm now taking it and still breastfeeding). We went to the ER and they didn't do anything. Then I started Zoloft. My PCP had me take 50mg the first night! Horrible horrible night. Should have started much slower. So then we cut it back to 25 and increased slowly. Ever since then I've felt that it's helped me. I felt amazing for four days after I'd taken it for 11 days, but then that went away (boo). But I can tell that my lows are much more stable. I was regularly calling friends and family to help me with the girls when the POTS got bad (when it does I get the surges you're describing, dizziness, chills, hot flashes, nausea, vomiting, diarrhea). I haven't had to call anyone for help or go to the ER except for when I got the stomach flu. I've had some ick moments but I can manage them with some meds and getting in bed. So it's been helpful for me. I do feel like it kind of muted my emotions, though. Not that it made me numb, just like it turned down the volume. But oddly enough, now that I've been taking Florinef regularly for the last few weeks, I feel exuberant again, even when I had a so-so POTS day. Hmmm. If you're a vain mom like me, I'll tell you that I had been steadily losing weight until I started Zoloft. I haven't gained any, but I haven't lost any since I started it either, and I'm stuck about 15 pounds over my pre-pregnancy weight. Sigh. And I don't think the Florinef is going to help in that regard . . . But if I can feel OK and live my life fairly normally, I'll make that trade. My number one piece of advice is not to lose hope. For some reason I felt like there was no way out . . . I didn't believe any medications could help. Obviously that's not a rational thought, but I remember feeling that way. And don't forget that this is a dynamic time period. Your body will change for a year or more after having the baby. So don't worry that you'll always feel the way that you do now. I feel a lot better than I did in July. I'm functioning at about 85%, and hey, I was always an overachiever anyway. ETA: I have ativan for the bad surges, but I usually take phenergan instead. I feel like it's "ativan lite." It relaxes me without totally knocking me out, and treats the nausea I usually have at the same time too.

I fly with compression stockings. I bring a big empty water bottle (to get through security) and EFS powder, and then I fill it in the water fountain and also buy some water in the airport to refill mid-flight. I also bring Nuun tablets with me. I sit in the aisle so I can get up a lot (and go to the bathroom because of all the water + EFS I'm drinking). I layer heavily because I get very very cold when flying. This won't really apply flying to Europe, probably, because you usually return midday, but I've found that it's the kiss of death for me to fly somewhere, spend a few days, and then catch a 6 a.m. flight home. I absolutely cannot wake up early after a taxing trip, so I book my return flight for midday or later. I learned this after two 6 a.m. return flights when I nearly didn't make it on or off the plane. One thing to think about is that when you fly from the US to Europe on the red eye, you normally arrive at 9 a.m. or so, and that's too early to check into your hotel. If you're not feeling well after the flight, you might want somewhere to rest, so it might not hurt to contact the hotel and even be willing to pay for an extra day so you can get in the room right away when you arrive. I haven't flown to Europe since my diagnosis (though looking back on our 2010 trip to Paris, I had a POTS episode the afternoon that we arrived), but when I do, I may get IV fluids before I go just to give myself an edge. ETA: HAVE FUN!

I'm glad to hear the good update! And congratulations on your daughter's wedding! I haven't had to deal with anything quite like this, but I agree that planning ahead of time is key. Over the summer I very symptomatic and would frequently need to call friends or family to come over because I was too sick to take care of the girls myself. Obviously that was very stressful and I couldn't relax if I didn't know who I could call on any particular day. Then my husband wanted to drive 8 hours away to do a week-long mountain bike race. Each day he would be riding his bike for 6 hours, stuck on some mountain somewhere without cell phone reception. I was to be with the girls -- in the cabin, or at a park or something. I found this idea very stressful, especially with the concern that the change in altitude would affect me. So suddenly it dawned on me that if we were going to go on this vacation, we needed to get me a babysitter, and that just had to be part of the expense if we were going to do it. I found someone on Care.com, and she came over every day. We even had her come one night and got to go out on a date! It was such a relief to know that if I felt terrible, there would be another adult there taking care of the children until my husband got back, and I even got to enjoy the vacation a little bit because it was less work than my normal life. I'm sure that not having the babysitter would have added to my anxiety and fatigue which would have exacerbated my symptoms . . . it's all so connected. I'm glad you have your contingency plans -- best of luck with the rest of the events!

Now that I'm soon to wean my daughter, I'm wondering about the occasional glass of wine. We live in the city and often sit on the porch and drink wine with our neighbors. Has anyone found that they can tolerate the occasional alcoholic drink, or does it mess you up pretty quickly? I know it's a vasodilator and dehydrates you, so obviously heavy drinking is out, but I'm wondering if anyone has been able to tolerate a small amount (like a 5 oz. glass of wine on occasion). Thanks!

Thank you guys! I'm going to try to be more conscious of adding salt and to eat a banana every day.

Ugh, I'm so sorry. I'm glad you found a good lawyer. Hang in there and congrats on your impending bundle of joy!

I've had a script for florinef since the summer, but I've only rarely taken it. (I am breastfeeding, and while I was told it was fine by Dr. Hale's hotline, I was still wary because of the concern about steroids causing growth suppression in infants). So anyway, I've only taken it when I had to fly or felt especially symptomatic. But then over the last few weeks I've taken it more and more, and now I'm taking it every day, and I really see an improvement. I find upright posture much less fatiguing, and feel more like my old self. I'm not concerned about my daughter at this point because I'll be weaning her soon, she's much bigger than she was a newborn, etc. Plus, again, Dr. Hale said it was fine. However, I'm a little nervous reading about how other people use salt supplements and need to make up for lost potassium. Can people on Florinef tell me specifically what supplements they use? I take Nuun tablets, and I have salt pills that I can take. My cardiologist didn't really give me specific instructions so I'm wondering what other people do. Has anyone found it to be less effective over time? I felt awesome for four days about two weeks after I started Zoloft, but then that went away. I still feel like it raised my lows (I haven't needed emergency help caring for the girls since I started it, but I still occasionally feel too ill to do anything beyond the bare minimum), but those glorious four symptom-free days haven't returned. So I guess I just want to know if the rug is going to be pulled out from under me with Florinef too. In any case, I feel hopeful, knowing that the drugs I've tried have helped, and that if I need more help, there are still more things to try, right? And once I wean my daughter, I won't feel nervous trying new medications either, nor will I worry that a trip to the ER will be problematic with her nursing schedule. Anyway, your specific florinef supplements are much appreciated!

Trublukrav . . . well, pregnancy can hit anyone hard . . . just look at the Duchess of Wales. So I understand the thinking that you may as well try and see except for the concern about your medications. You do need medical advice on what you can and can't take while pregnant, and you need to know that you'll have a doctor to call when you need help. I was diagnosed while pregnant, and it was actually my OB who sent me to the cardiologist. Do you have an OB? She coordinated with the cardiologist about medications. As for medications, I am NOT a doctor, but my experience with pregnancy and breastfeeding has been that doctors want to cover their behinds so they just adopt a "better safe than sorry" approach when it comes to medications and breastfeeding. (With pregnancy they seem more willing to prescribe medications when truly needed - with breastfeeding it's just like, oh, well you don't HAVE to breastfeed so obviously your condition can go untreated . . . ) My POTS got really bad this summer, manifesting as anxiety, and two separate doctors refused to give me anything because I was breastfeeding . . . how did they know I wasn't experiencing extreme PPD? Thankfully my GP is awesome and with one phone call we had a script for Ativan and Zoloft. For specific medications, I've called Dr. Hale's hotline at Texas Tech and asked the nurse. http://www.infantrisk.com/ Abbyw, yes, 10-11 weeks was always the peak for me, and then by 14 weeks I was feeling much better (in pregnancy one it was just morning sickness; in pregnancy two it was morning sickness and POTS misery). I think it's pretty awesome that we have thought, "I can't do this another minute," and yet we did! Congrats on your pregnancy!

I've been thinking about this recently because as my younger daughter nears a year old and won't be a baby any more, I wonder if I want another. But I'm afraid that I'll be as sick or sicker as I was with her pregnancy. I remember when I was 7 weeks pregnant feeling soooooooo horrible and just counting down the days until I was out of the first trimester (50ish) because getting through a single day was so hard. I remember being terrified that I would have a miscarriage because I didn't think I could knowingly put myself in that situation again, but I knew I wanted another child. I also have to worry about taking care of the two girls that I do have -- we would have to get a nanny, probably, if I were going to be pregnant again. So we think that if we do want a third, we'll explore adoption. But honestly I don't know if I would have enough energy for three children, even if I got to skip the pregnancy part. It's frustrating to feel like POTS is making decisions about our family size for us, but I guess that's life. If it's not money, then it's career demands, or age, or fertility . . . very few people have perfect circumstances. So what would I do in your shoes? You say you are the primary breadwinner . . . could you afford to be on bedrest or leave from your work? I guess my advice to you depends on your answer to that. If you can afford not to work and would have the support and help that you need, then I'd consider it.

Another vote for Nuun tablets. I'm currently addicted to the Kona Kola flavor, and I switch to fruit flavors later in the day when I don't want the caffeine. I've also used EFS powder with success, but it's about 100 calories per dose so you can't have too much if you don't want to gain tons of weight. I reserve that for when I'm very symptomatic.

I just wanted to say hi, and I hope you find some relief. I'm taking Zoloft too and I'm upping it from 50mg to 75mg tomorrow to see if it improves my symptoms further. My experience with late pregnancy was a little different than yours (I felt horrible in the first trimester, relatively better in the second and third), but I did have a POTS crash three weeks postpartum that sent us to the ER with our newborn, and by 4 months PP (in the heat of the summer) I was at another low and after the ER and my wonderful GP's not so wonderful partner wouldn't help me, ("Oh, I could prescribe you Ativan . . . oh wait, you're breastfeeding. Never mind. Just stop breastfeeding."), we were ready to check me in to the mental ward when we got in touch with our regular GP and got some ativan, which helped me with the horrible edgy feeling I was having before the Zoloft took effect. Your body is still undergoing a lot of changes -- it's a dynamic time, as my husband reminds me. So you mustn't lose hope . . . there are a lot of medications to try, and experts to consult. BTW, I'm not sure if you're breastfeeding, but if you are, Dr. Hale's breastfeeding hotline at Texas Tech University is a wonderful resource if you're not sure about a medication's compatibility with breastfeeding. Most doctors are reticent to prescribe steroids or drugs with sedative effects to breastfeeding mothers, but that's just to cover themselves . . . Dr. Hale has all the latest studies and evidence, and you just call the hotline and ask them about the drug you're taking and the dosage and they'll tell you if it should be OK. For example, with ativan they just say to try to time it for when you won't be nursing for a while and watch for signs of drowsiness in the baby. With Florinef they told me its half life and that a dose of 0.1-0.4mg should be fine .

I'm so sorry. *Hugs* It was right around 5 weeks pregnant with my second child that I became very sick with POTS (and was diagnosed a few weeks later), so at least in my case, the hormones and other changes were affecting me a lot. It was like I got hit with a Mack truck. Plus you've lost a lot of blood, and we POTSies have such a tenuous balance with our blood volume as it is. So it makes a lot of sense to me that you are feeling particularly ill. I really hope you get some relief soon. I'm sorry your DH isn't understanding at the moment. Have you watched the POTS video on YouTube that this site produced with him? Mine found that very eye-opening. My parents had a great marriage, but my dad always referenced this time between having my sister and me when my mom had a m/c and he just didn't get it at all. He thought about it simply in medical terms and totally missed how my mom was dealing with it emotionally. I hope your DH will come around to realizing how you are affected.

I wish I was better educated about what all this stuff means, but I can say that my experience has been that running is the only exercise that really helps me. I do Firm DVDs too, so that's light weight lifting and cardio, but running is just so intense and makes my heart work so hard. I've been running for the last month (I am a regular runner but have an 8 month old and haven't done it much in the last year and a half) and I can tell such a huge difference in my ability to tolerate standing around, sitting still, all the things that are so difficult when the POTS is bad. But I confess I do not understand the physiology of it! The first two weeks when I started running again, I was definitely at my maximum capability (went one mile, then one and a half, etc.). But the last few times I've run, I can tell that my cardiovascular fitness has gone up several notches. When I stop running, it's because my muscles ache, not because I can't tolerate the exertion. I have better energy, etc. Does this fit into your theory? I need to get a HR monitor, but I've been worried that knowing how high it is might psych me out.

Congrats on the, um, undiagnosis? You know what I mean! I"m glad things are going well for and hope they continue that way.

Blergh, am lying here coming down from an adrenal surge. I've never noticed the horrible excess of saliva before. Since I was also nauseated and experiencing pretty bad heartburn, the constant swallowing was not pleasant. I don't feel anxious. I know it's not anxiety. But everything is so connected, you know? I've got a 3 year old and a baby, and my husband is out of town for business tonight, and I keep thinking, "Oh no! I don't feel well and I'm all alone and these babies need me!" But then if I don't think about it and play a game online or something, I don't feel anxious at all. I took a zantac and a phenergan and chewed some tums, and I think I'll be OK. Glad my DH comes home tomorrow. I could call the neighbors (a minute away), our best friends (10 minutes away), or my MIL (30 minutes away) if things get really bad. I just hate not being able to get through a single night caring for the children on my own without worrying that I can't do it, that I need someone to take care of me. BUT . . . I am feeling better now (or else I would still be playing Words with Friends and avoiding thinking these thoughts, hee hee). I can take a nap while my toddler is at preschool tomorrow (the baby naps then) and I should be fine until my husband gets home. I'm lucky to have so much help and support, I do know that. But it still stinks. OK, vent over. Thanks for listening!

Potluck, my HR is definitely high when I run, always has been. I don't check it because I don't know want to know if I'm above my max! Sue, yes, i think it was mostly the humidity that was bothering me. I felt like I couldn't breathe when it was thick too. But now I'm full on POTSy.

With the cooler fall weather, I'd been feeling a lot better recently. I'm training for an 8k in two weeks and have run for 45 minutes (though I suspect I'll have to run for about an hour to go 4.9 miles). But then when it got super humid before the storm this weekend, I started to feel very POTSy. For the last two days I've been falling asleep off and on, having stomach troubles, feeling jittery, prefering to be in a reclined position, etc. Boo. Has anyone else been affected by the change in barometric pressure brought on by Sandy?

I'm sorry it didn't work out. Hope you find some relief soon. I took florinef for 5 days a few weeks ago to beef up my blood volume for flying, a big trigger for me. My cardiologist said I could take florinef "as needed" and since I'm breastfeeding, I didn't want to take it just to take it. Anyway, by the fifth day I got a headache (on 0.1mg), but I felt fine the days leading up to that.

I was diagnosed with POTS when I was around 8 weeks pregnant last summer. I took 25 mg. of metoprolol throughout the rest of my pregnancy with no ill effects that I know of. I stopped taking it recently because I think it was causing me fatigue and tachycardia has never really bothered me. I was on a daily IV drip for a week when things got really bad in the first trimester. I felt better in the second and third trimesters when I had increased blood volume. Before I got sick we were probably 70% sure we were done with two children and 30% learning towards having number three. But now that I was so sick while pregnant we're done unless we decide to adopt. But if we had absolutely wanted a third (or if I had gotten sick during my first pregnancy instead of my second), I absolutely would have done it again. You get through each day and at the end you have something worth it all. Do you take anything for your anxiety? I'm taking Zoloft now for anxiety. I didn't take it while pregnant but I am taking it while breastfeeding. I've found it to be helpful with my POTS symptoms in general. I don't know what's considered safe during pregnancy, but I believe Zoloft is the first antidepressant recommended for breastfeeding mothers. And when things get really bad, I take an ativan, which some sources will tell you not to take, but I checked with Dr. Hale at Texas Tech and feel comfortable taking it very occasionally (I've taken 4 doses since having the baby) and watching for signs of sedation in the baby (haven't seen any).

Hmmm, I've got a Mirena too and no cycles since having my baby 6 months ago, but I'm breastfeeding and didn't resume my cycles until 11 months after having my first, so I don't know if I'll get them back when I wean her. Wouldn't mind if I didn't . . .

I was fine with swings as a child. I used to hook my legs around the chains, hang upside down, and then flip off. Oy. I cannot imagine doing that now! We have a porch swing now and I'm usually find but if I'm very symptomatic I hate the motion. Of course, if I'm very symptomatic I'm likely not outside on the porch swing . . . Relax86, I was the same in childhood. Couldn't run, red face, etc. My dad was a runner and was always bugging me to get into shape, but it was SO HARD. Finally as an adult I worked up to jogging super super slowly. I was speed walking 6 miles before I could run a mile. Even with breaks for pregnancy and POTSness I can still run a mile without any training. But can I talk while running? No. My sister and I ran a 10k last year and though I had trained better, she could chat while we were running and I couldn't. I'm sure my HR is through the roof but I've never worn a monitor. I've always found exercises/movements with my arms bearing weights over my head very difficult.

I'm six months postpartum, so I've had to work up to being able to exercise again. I was jogging 3 or 4 miles at a 12 minute mile (slower than before I had this baby, but I've never weighed this much while jogging before) with some heat/exercise intolerance until the summer hit. So over the summer I've just done Firm DVDs (I alternate cardio and weights, though all workouts have some of each) in my air-conditioned basement. But now I"m sick of it and the weather is cooling. I ran for 16 minutes the other day (ouch) and felt good. The last few days my symptoms have been aggravated so instead of a run today, I did a short cardio DVD. Better than nothing. On Sunday I walked the girls to the park (3/4 mile) in the stroller. They weigh about 50 pounds combined and then there's the stroller. When we got there was I shaky and overheated. I had to eat about 500 calories and drink 30 ounces of water with nuun tablets to recover. I was able to stay at the park for an hour then walk home. I find it's very important to always have lots of food and water handy. When I jog, I stick close to home and carry a 200 calorie Shot Blok with me in case I bonk, and I have a Camelbak backpack that holds 50 ounces of water. I drank almost all of it during my 16 minute run the other day! I would add electrolytes if I could figure out how to clean it well, but since I can't I just drink them before and after. My husband and I have made my exercise a priority because it's so hard for me to function without it. I have a babysitter come 2 afternoons per week and usually get in another two workouts during the week. Silver lining, I guess, because as a stay-at-home mother of two little ones, I probably wouldn't steal so much time to exercise if I didn't have to for my health (well, obviously everyone exercises for their health, but you know what I mean). What I think will help is if we can start incorporating family walks again. We live in an urban area and before being diagnosed with POTS, I would walk probably 10 miles a week just going to the grocery store, the library, etc on top of my exercise. Again, I always have my cell phone, electrolyte powder, snacks, and lots of fluids with me in the stroller. I can tell I've been feeling better recently because we've been able to walk more. I do get woozy but as long as it's more walking than standing I've been OK. Glad that fall will be here soon!