shan1212

I just wonder what could have triggered this. For me, it was weaning my first daughter, but I wasn't diagnosed until things got really bad when I got pregnant with my second. But she's late 30s, her youngest is almost 3 . . . she just ran a half marathon. She hasn't been sick or anything. ????

Wow, it really does seem like there's a genetic link. I have mitral valve prolapse so I wonder if that's a connection. I'm hoping my sister's symptoms go away, but at least we know for her to seek out a doctor with dysautonomia experience. She keeps saying, "Wow, I can't believe you feel like this and still function. How do you live like this?" and I'm like, yeah, I wish you didn't have to know what it's like, but it is validating to hear someone else say, wow, this really does suck.

My sister has suddenly had on onset of POTS-like symptoms. Basically she has all of the same symptoms as I do (fatigue, intolerance to upright posture, chills, stomach problems, brain fog) and had to go to the ER last night (they didn't have an answer for her). Does anyone have a sibling with POTS? I know there is some genetic component but I'm wondering how likely it is that this could be POTS.

Congratulations! Best wishes for a healthy and symptom free (or light) pregnancy! I didn't feel well during the first trimester this last time around, but things improved when my blood volume increased in the second trimester, and I felt pretty normal for the rest of the pregnancy with just a few POTSy days (in comparison to my first pregnancy, before I had POTS - I still felt huge and pregnant but not slowed down by POTS). I was basically on bed rest during the first trimester due to my inability to get upright and then resumed exercise for the second and the first part of the third trimester. I think I quit doing real workouts around 34 weeks but I still tried to go for 2 mile walks.

When mine first started, it was in episodes, which for me means suddenly getting really dizzy, unable to get upright, extreme chills, diarrhea and/or vomiting. So like getting the stomach flu. To me that's an "episode." But recently the POTS has been pretty constant, not like being incapacitated from stomach flu, but I'm always edgy or dizzy or nauseated and feel like the pull of gravity is too great to sit or stand for long periods. So I think I will probably still use "episode" to describe what happens to me when it gets really bad, but that doesn't mean I am symptom-free at other times, unfortunately.

I used it for morning sickness when I was pregnant - it helped with the nausea, but it caused pretty bad constipation for me with prolonged use. Definitely a great option, though - phenergan makes me so sleepy!

Yes, that happens to me too. I battle the chills more often than feeling hot, but it can go from one to the other quickly. It's always hard for me to dress my children appropriately for the weather because I imagine they feel like I do. I need to look at the thermostat and be like, OK, it's 77 degrees in here, they don't need jackets . . . Meanwhile I'm buried under blankets.

I'd been feeling that way a lot recently too. I hope you get some relief soon! Zoloft is working for me at the moment but I haven't been on it very long so time will tell . . .

I see that you took it for 3 years . . . how did you know to go off it? Did you suffer any setbacks then?

I did feel very bad the first night I started it. But I've asked around, and everyone I know who started Zoloft started on 25 mg, including my 200 lb. brother-in-law, and my doctor started me on 50 mg. I went to the ER the next day and they were like, "Stop the Zoloft!" when I complained of all my symptoms. But I gave it another try that night (at 25 mg) and have felt fine ever since. (It's the first SSRI on the list for breastfeeding mothers, so switching to another drug might have meant it was less safe for my baby -- otherwise I think I would have asked to switch.) The first week or so I had mild nausea, but only about 1/5 as bad as morning sickness so I was willing to put up with it to see if the Zoloft worked once it built up in my system. I'm glad I did! Literally on Monday I felt POTSy in the morning, felt like I had to exercise in the afternoon, and as soon as I did, I felt normal. Our neighbors came over for dinner and I was able to sit and stand at will and drink a glass of wine, all things that I would have avoided before. The normal feeling has only been since Monday but it's been constant - no faint POTS feelings or anything.

Thanks Shannon. I'm glad the Celexa is working for you! HappyChic, my symptoms were dizziness, GI problems, chills, fatigue, intolerance to upright posture, and then most recently, an anxious/edgy feeling, which is what I was prescribed the Zoloft for. I honestly didn't expect it to help all of my POTS symptoms.

I feel like if you can tolerate the exercise (even with dizziness and nausea) and know that you're personally not going to overdo it or make things worse, then you should keep going. I do Firm DVDs that mix cardio with weights segments. When I get dizzy while exercising, I can't tolerate the cardio sections, so I'll just march during those, or fast forward them. But I can usually make it through the weights parts OK.

Hi fellow POTSies . . . I had a baby 4.5 months ago, and for the last 3 months or so, the POTS has been a constant presence. I mean, obviously I always have POTS, but I have just felt like the pull of gravity is too heavy, sluggish, unable to stand, dizzy, nauseated, heartburn, etc. almost constantly (well, at least one symptom at all times). Two weeks ago it got really bad and manifested as extreme anxiety and I had to take a couple of Ativan. I think IV fluids would have helped but the ER said I wasn't dehydrated . . . So anyway, at the same time, my doctor prescribed me Zoloft. I took a 50 mg pill the first night but had a horrible reaction (dry mouth, diarrhea, flushed skin, etc.). So since then I've been taking 25 mg. I know this is a low dose so I don't know if it could be responsible for my sudden remission? I've now taken 11 doses, I believe, so it hasn't even been a full two weeks. But for the last two days, I've felt normal. Well, as normal as a mother whose formerly good sleeper has hit the 4 month wakeful period, a growth spurt, and teething all at the same time can feel . . . but I don't feel POTSy. No dizziness, no nausea. Bowel movements even seem healthier. I don't feel like gravity is extra heavy. I feel like I could take the girls to the zoo or stand up and talk to someone for ten minutes - all the types of things I've been avoiding for months. I've been exercising and don't feel dizzy. I also have felt a lot less thirsty. The only other difference is that we went north to the beach for the weekend, so I got out of our hot/humid city. But we returned Monday and it's been 100 degrees and humid since we've been back. And yet I feel unaffected. So could it be the Zoloft? Or is it just a freak thing and I"ll be back to feeling POTSy soon enough? Sigh. Hope springs eternal!

I had a very bad night and don't know if I should continue on the Zoloft or try something else. I'm feeling very anxious. Blergh. I've been the ER (blood levels fine so they did not give me IV fluids - I thought I was dehydrated because of the dry mouth Zoloft caused) and am emailing back and forth with my doctor.

Update: My husband spoke to our PCP and I've been prescribed Zoloft. Hope this helps!

Oh, and I also meant to ask if anyone had breastfed while on Florinef. If so, did you monitor the baby for growth suppression? My babies are 25th percentile for weight - they grow adequately but not quickly. I only make about 24 oz. of breast milk per 24 hours, which is apparently adequate, but in other words, I don't make tons, so I worry that this would instantly lead to the pediatrician saying she's not growing enough. Also, does anyone know why steroids cause growth suppression in infants? Do they affect the infants' growing mechanisms, or do they affect the mother's milk supply?

I'm 4 months postpartum and am experiencing a lot of anxiety. It feels like it's the POTS and not a postpartum hormonal thing, but I can't be sure of that of course. It just feels like some days my predominant symptom is queasiness, some days it's dizziness, and some days it's anxiety. I just went in to see my PCP (who is awesome and who instantly suspected dysautonomia the first time I went to the ER for dizziness), but he is on vacation and his partner was like, well, it sounds like you need to quit breastfeeding and start florinef. I can't give you anything for anxiety since your problem is POTS and not anxiety itself. But my thinking is that as a symptom, it can be managed, just like you can manage nausea with Zofran, etc. But I don't know a lot about anxiety medications. I just feel like I need something to stop the panic feeling, or at least take the edge off of it, because I've been talking myself out of panicking for weeks, and I can't do it forever. So anyway, I'm wondering about an SSRI. Can anyone tell me about their experiences on them, and which one you take? Also, what about compatibility with breastfeeding? And what about things to take for short-term relief of anxiety? I know you can't give me medical advice, but I'm just wondering which drugs are commonly used. My husband is friends with our PCP and is going to try to track him down on his vacation and ask for his advice. He is super attentive and I know he will help, but we'd like to know what to ask him.

Mytwogirlsrox/Shannon - thanks so much. I work out at home and I have a toddler who naps well, so that helps. I also have a sitter come 2 afternoons a week so if the baby is fussy, I can just hand her off and concentrate on working out (I was also going jogging when the weather was cooler, but I live in a very humid place that gets hot over the summer, so I'm not expecting to run much until the fall). When the fatigue was worse the babysitter was all that got me working out because I would think, "I can't pay her $25 for sitting here while I take a nap!" After my first child, I worked out a normal amount for a new mom, I think . . . maybe 3 times a week, 4 at most, for half an hour on average. Now that I know how important exercise is to my ability to function, I'm choosing longer workouts, and I work out 3 days in a row unless I'm POTSy. If I couldn't get in a workout during nap time, I call my husband and tell him I'll need to workout when he gets home. It's just higher on the priority list now. That's hard because sometimes I don't cook dinner or clean or go to the grocery store so I can get in a workout, and as a result the home stuff isn't where I want it to be. But if I'm sick from POTS I can't do any of those things either, so I know it's got to be the top priority. Plus I want to lose the baby weight so it's good in that regard too. Are you still living with your parents? Are they able to watch the girls while you work out? And hopefully they won't get sick any more at the gym - maybe their immunities will build up. Hope so! Wendy, interesting, I'd read about a magnesium deficiency being common and want to ask my cardiologist about that. You're right; I really didn't nap during my pregnancy. I'm not usually a napper in general, but I did nap some after the baby was born. I remember during the first trimester (when we didn't know what was wrong with me, just that i couldn't get off the couch), my brother-in-law was like, if you're so tired, why don't you just nap? And I realized that I wasn't lying down because I was tired, which was an odd connection to make. Now it makes sense, of course.

I also wonder if it could have been affecting me more strongly now that I"m three months postpartum. When I went on it, my blood volume was increasing as my pregnancy progressed, so I wonder if now with reduced blood volume it had a more potent effect?

Has anyone else found Metoprolol to cause extreme fatigue? Oddly, I'd been on it with the exception of one week for 9 months, so I don't know why the fatigue suddenly became so bad and wouldn't have thought it was the metoprolol, but two people (one my nurse friend who has POTS, and one my cousin who is a doctor who specializes in chronic illness) told me that it can cause extreme fatigue, at the same time that I was experiencing extreme fatigue, so I took that as a sign to go off of it. I didn't notice improvement in the fatigue right away; it took maybe two weeks. But now I feel like a whole new person, and I'm wondering how much of my recent crappiness was POTS, and how much was the Metoprolol. I'm fairly new to all of this and I'm guessing this is a common experience - just a ton of trial and error and guesswork. So anyway, I'm really really hoping I maintain how I'm feeling now. I had gotten so fatigued that I was getting in bed every night at 8 (but not falling asleep, of course). My husband would ask if I wanted to walk across the street to get dinner from the food truck, and I wouldn't even have the energy to do that. It was so awful. I wouldn't have guessed it could be the Metoprolol (I was on 25 mg. once a day) but my improvement is so marked that I have to think it was. So now I'm not on any prescriptions, I'm just guzzling water mixed with EFS and exercising 4-5 times a week. I was supposed to see my cardiologist this week but I had to reschedule, so we'll see how I do over the next six weeks.

I started taking metoprolol 25mg 2x per day. It made me dizzy upon exertion so I started taking only 25mg at night. I've stopped taking it now as I believe it was causing fatigue.

Thanks for all the replied . . . I'm glad to know I'm not alone! I'm sure the episodes are POTS and not food poisoning because I usually just vomit or have diarrhea once or twice. Enough to be a nuisance but not such a violent reaction that I suspect food poisoning. Plus, my stomach has always been so strong that bad foods don't affect me that way. One time my dad and I were both food poisoned, and I didn't even throw up on my own . . . I had to stick my toothbrush down my throat because my stomach just didn't react that way. Dizzysillyak ~ no, I haven't yet figured out if a certain food triggers a bad POTS day. I think it's more to do with my hydration, but I've been following my gut (no pun intended) which has been telling me to avoid super carbs like pasta. But I still eat toast and other whole grain foods on a lesser basis. I may try eliminating that entirely if things continue this way. I've taken Immodium AD if it's been really bad, and I take Zantac sometimes for heartburn, but otherwise I haven't tried any medications since I'm breastfeeding. Oh, and both times I went to the ER for POTS episodes, the ER doc told me all I had was some diarrhea that was going around. I was like, um, I don't think a single bout of diarrhea would cause dehydration severe enough to warrant an ER visit! But thanks for the "diagnosis" and the IV fluids!

This morning I woke up feeling OK, but I quickly felt dizzy and cold and had diarrhea. When they get really bad, I'll also throw up and feel so dizzy I ask to go to the ER because I can just tell I won't be able to drink enough to make it stop. Thankfully that didn't happen. I had to nurse my daughter lying in bed and flip over half way through, and that made things worse, but I managed to drink from a big 28 oz. cup with a straw (from the hospital with my first birth - love that cup!) filled with water and EFS solution. Has anyone else tried that? Supposedly it had 3x the electrolytes of Gatorade, and I like that it doesn't have artificial coloring or weird ingredients (I first got it at our local bike shop where my DH goes a lot). So anyway, I've recovered now (somewhat), but I wondered if anyone else's episodes are like having food poisoning or something? It was so weird when they started a few years ago because I've always had an iron stomach and never got sick to my stomach. But now if I have a really bad POTS day my GI tract goes to pieces.

Looking back on it, I'm thinking there's also a connection between what I do when I land somewhere . . . if my sleep or hydration is affected further beyond flying, then that's the kiss of death. So waking up early, jet lag, or heavy drinking can all tip the scale into a POTS episode. The one time I didn't get sick, it was the shortest flight flown at what I assume was the lowest altitude, there was no time change, etc. My husband and I have been to France five times together and I'm really sad thinking that maybe we can't do that any more. I'll have to try flying again at some point, but a transatlantic flight . . . that might be pushing it.

Thank you so much!!! I know it will be a lot easier for me to fit in a DVD in the basement during naps or after dinner than to make it to a class. Plus since with dysautonomia I am often "bad" at new exercises at first, I like to build up to doing the moves in private.