shan1212

I must be a fast metabolizer because I need Midodrine every two hours. I generally take 5mg at 8am, 10, 12, 2, 4, and sometimes 6. I will also take a second pill after 30 minutes if the first pill has not alleviated symptoms. I average 25mg a day. I also take 0.1mg Florifinef.

Oh Lissa, I can so relate. I'm 36 and have been sick for 5 years, though in retrospect I've had POTS since puberty. It was just ramped way up by my second pregnancy. It's hard to let go of who I was. Still to this day I give myself a hard time for not being able to be the person I was 5 years ago. I am working on acceptance.

This has also caused stress in my marriage. Thankfully we have grown a lot, but it was a big change in our dynamic. Before POTS I was very low maintenance and independent. It turns out that as a result, I married someone who is not that strong with empathy or care-taking, which was fine for my pre-POTS self. We have had to learn how to be a united front against this disease rather than letting it divide us. It's an acceptance process for my very active husband as well.

I'm still on the roller coaster, still trying new things (just recently started a low carb, high protein diet, and you're right, it's been helping). I was all excited this week because I upped my work-outs and was feeling exercise-highs again for the first time in forever. And then of course I overdid it and crashed. Ugh. 

I got through my pregnancy with POTS, though of course every case is different. I've heard people say their POTS was even better during pregnancy due to the increased blood volume. Personally I am not willing to go down that road again when I need to be healthy and present for the two children I do have. But my doctor assures me he could get me through a pregnancy if that's what I wanted. Knowledge is power, and if I ever do become pregnant again, I won't be so blind-sided by the difficulties. 

I know what you mean about never feeling good. I say that to my husband all the time. Just sometimes I feel "less bad." This week, though, with my longer but less intense workouts, I did feel high on endorphins a lot of the time. I still felt tired, of course, and at times standing was difficult. But it was a big improvement. Hope springs eternal, so I am hopeful that I can continue to tweak things to give me the best quality of life possible. I'm also addressing my allergies with shots and feeling a lot better off the sugar roller-coaster with my changes in diet. I'm having a lot fewer headaches too! 

We all understand. Hugs.

I did experience the kind of crash you're talking about when I was running longer distances (4-5 miles) a few years ago. Dr. Sica said I was probably pushing myself too much.

It's all so much trial and error. I continue trying to run, but these days I can only do a mile. Then I walk another mile or two. I do workout videos, and I can't really tolerate the ones that are too quick with high intensity interval training. I need longer, slower workouts. I've pulled my old Firm DVDs out and am trying to build muscle mass.

My goal has always been to do what I can. So when I've broken a foot or had a really bad POTS spell, I'll drag the bike trainer out to the basement and do that while I watch tv. I have easier workout DVDs, so on a bad day, I'll just try to do my easiest 25 minute workout with light weights. Another day I can try to do a harder workout that might actually build up endurance and muscle mass, but for the off days, at least I did something to keep me somewhat conditioned. 

Does anyone get allergy shots? Do you notice an improvement of POTS symptoms with your allergies under better control?

I've noticed an increase in allergy symptoms in the last year. They were always a seasonal nuisance, but during pregnancy I was able to go off anti-histamines and was fine. Now I have constant sinus pain, headaches, and feeling like my throat is closing up. I got sicker and sicker this December until I figured out it was the Christmas tree. It got to the point where I was taking Zyrtec and Claritin and popping Benadryl throughout the day. 

So I got tested recently, and am allergic to grass (which I've always known because my throat is on fire when people are mowing), all sorts of trees, dust mites, and pets. I've begun the shots, and it's too early to see relief, but I am hopeful that this time next year, I will have some relief. I don't know if it's the allergy meds or the allergies themselves, but I do think they contribute to my fatigue.

Does anyone have any insight on the connection between allergies and POTS? Any experience with shots?

I'm wondering about this too. I went to see a concierge endocrinologist last week . . . I went solely hoping for help with POTS, but I felt like he gave me the basic "weight loss" spiel. He recommended a low carb diet, with almost no carbs in the morning and more as the day progresses. Some of his advice was pure bunk (like when he pointed out that exercise does nothing for weight loss -- sure, but without exercise I will not be functional -- or his recommendation to eat as much sugar-free jello as I like). But I do feel much improved after 5 days of eating this way. No headaches, better energy. As a result, I have been exercising harder, and I think that is paying off too. Obviously it's too early to tell, but I am hopeful that addressing some reactive hypoglycemia I may have had will help keep me more stable, improve energy, and create a "virtuous cycle" that leads to POTS symptoms improving. 

Years ago, before my diagnosis, I read the book Eat, Drink, and Be Healthy by a Harvard med school doctor. It was nothing revolutionary, and did not recommend one diet over another (said that people tend to lose more on low-carb than low-fat diets, but did not push a low-carb approach), but it helped me eat less processed, more whole foods, more healthy proteins, more healthy fats, etc. With kids and fatigue and everything, I have a much harder time stopping bad habits and eating this way, but I am starting to think that diet is the one piece of this puzzle I have not given enough attention to. 

I used to drink them all day long, but then I started making my own drink. I have a 50 oz. pitcher that I fill with water, add a flavoring (usually Crystal Light Pure), 1/2 teaspoon of salt, and 1/2 teaspoon potassium. This saves money, and I wasn't sure about the sorbitol and acesulfame K in the Nuun tablets. I carry a little packet of salt/potassium in my purse if I have to mix something up on the go. At this point, I'm so used to salty water that I don't really need the flavoring. 

I've just now seen the survey circulating to tell the FDA to keep Midodrine on the market. It's my miracle drug so of course I immediately panicked. But then I did a little back-reading and saw that they originally threatened to pull the drug because the patent holder and original manufacturer, Shire, was refusing to go back and do more stringent trials. Shire wasn't motivated to do them because they had long since stopped making the drug, leaving it to generic companies to make. But anyway, then Shire agreed and spent millions of dollars and several years doing the studies, and now the studies are being reviewed. So what are the chances that the FDA would ask Shire to jump through those hoops only to turn around and pull it. There haven't been any deaths or anything like that, right?

Just wondering if my assessment that the FDA is unlikely to pull it, and that threatening to pull it back in 2010 was because Shire wasn't willing to do further trials, which have now been done, is correct. Fingers crossed! I can't count the number of times that Midodrine has saved me from a symptom-spiral.

I've worn compression tights, but I also find that being able to sit cross-legged helps the most. It is very draining to be sitting upright in a dehydrating environment, but it can be done with lots of hydration and compression. If you can sit with your mum and put the arm rest up and sit cross-legged, that might help. I used to get IV infusions before flying, but I've found that just doubling up my Florinef for a few days seems to help (or not help?) just as much and it doesn't cost me an extra medical bill.

I just flew last week and other than a POTS flare up on one leg of the flight (because we were rushed and unable to eat and hydrate properly as planned) and some fatigue, I've been just fine. During the flare-up I took an extra Midodrine and hydrated a lot. I was able to sit cross-legged because there was an empty seat beside me, thank goodness.

Good luck!

I got frequent adrenaline rushes before finding a better balance with my meds and exercise. Midodrine has been the biggest help in this regard, which is what tells me that it wasn't psychological in nature, though at the time when your body is sending out waves of adrenaline, it certainly feels like anxiety. I felt like a caged wild animal. I don't have any experience with paranoia, though.

Artluvr, for me an adrenaline rush actually feels like a surge of chemicals coursing through my body. Then I start getting shakey, very cold, have diarrhea, etc. It's usually the precursor to all my systems going haywire. It happens when my body is trying not to pass out. I can definitely feel the "surge." I had some last week when I was flying. I took an extra Midodrine and it settled down.

I recently decided not to be sick any more. That's what I told my doctor. I went to a naturopath and started taking a B Complex and fish oil (though the tincture and homeopathic medication she gave me didn't seem to do much). I started exercising 5 times a week. I played around with my diet. Mostly I think it was just that decision that "I'm not going to be sick any more" that made a difference for me. And no, I'm not miraculously cured, but I am thinking about myself differently. I'm no longer thinking that I can't do things, or assuming that I always have to stay home and rest. I'm pushing myself more, but still resting and trying not to overdo it (and, of course, sometimes still overdoing it). It's a balance.

All this is to say that while I don't consider myself to have experienced anything like "faith healing," I do think that our minds are incredibly powerful, and that believing that we are better, or can be better, can go a long way. It's all part of the puzzle. It helps you get the ball rolling to try new things. When you let yourself believe that it's possible to feel better than you do right this second, then you can take a risk on trying something new or expending a lot of energy in the hope that it'll energize you instead of depleting you. It becomes a virtuous cycle. It can be very hard to turn a vicious cycle into a virtuous one -- faith and hope that it's possible are definitely key. I'm not particularly interested in where others find or place their faith and hope; I just recognize that it's very easy to lose hope when you feel terrible day after day, and I hope that everyone here can find a way to reclaim that hope when they need it.

I was on Zoloft for a few years. It did provide some mild/moderate improvement to my POTS symptoms, but long-term I didn't see it adding enough value to continue on it. I wanted to feel like myself and have my libido and whole range of emotions back. I've been completely off it for a month and haven't seen any real increase in POTS symptoms (I weaned off slowly). Maybe some increase in fatigue but that could also be the weather. I'm glad to be done with it.

I take about 25mg per day. I generally take 5mg every couple of hours while symptomatic. When very dizzy or symptomatic, I'll take another 5mg immediately. Most days I take 5 pills.

I can relate to wondering if the meds you're taking actually help you. I'm currently weaning off of Zoloft, stopped taking Metoprolol, and am taking less Trazodone and Florinef. But Midodrine is the one drug that I know for sure helps me. The second pill has saved me many a time from what would have previously been a terrible battle to reboot my blood pressure. I will often be driving my kids to school and think, "Ugh, why am I so tired?" and then I remember that I haven't taken any Midodrine yet.

I've taken to keeping a few pills everywhere -- there's a bottle in my car, one in my basement, one in my kitchen, etc. I even have a couple of pills tucked in my wallet in case I forget my medicine purse. It's the one drug I really need to have on hand at all times.

Hi there and congratulations!

I have hyper-POTS; looking back, I've had it since I was 14, but I wasn't diagnosed until my second pregnancy. It wasn't until my first daughter was a year old and I weaned her and got my cycle back that I started having POTS flare-ups. Then when I got pregnant with #2, POTS had me flat on my back for much of the first trimester, and that's when I was diagnosed. I did begin to feel better during the second trimester, though I was still tired, but at least functional.

My first delivery was a c-section that I believe was avoidable. With my second I decided I wanted a vaginal delivery, partly to avoid the anesthesia issue, and also the recovery from surgery. I went into labor naturally on my due date (was not aware of the early stages of labor, so it felt like I was just suddenly in active labor, ouch!). I got to the hospital at 8 cm. The contractions made me have adrenaline surges, so I got an epidural at nearly 10 cm. The nurse anesthetist knew about my "heart thing." I had fluids beforehand. The epidural did the trick and after a long pushing stage, I had my daughter vaginally. The recovery was much easier than a c-section. I had some tenderness and swelling on the second day, but by day 3 was pretty much back to normal. With the c-section, it took a week or two to feel like I had full use of my lower body. And just personally, POTS or no POTS, the vaginal delivery was a better experience because I got to hold my daughter immediately. With the c-section, they took her to the nursery and I was barely with her for the first two hours (they've since changed their protocols at that hospital and don't separate newborns and mothers without reason any more). If it were me I would try for the vaginal delivery and take it from there.

Exercise is tricky to balance, for sure. Too much and I crash for a few weeks (tried too hard to train for a 10k earlier this year and totally tanked after running 5 miles). My POTS symptoms are better under control now, when I can't run more than 2.5 miles, than they were a year or two ago, when I could run 5. So maybe I've finally figured out the sweet spot. I alternate jogging (11 min/miles in the A/C, slower in the heat) or jogging/walking 2 miles with Firm workout DVDs. I exercise 4-5 days a week. The days when I exercise, I do much better in the evening. It really gives me a boost. But I've had to reduce the intensity. And I have to spend a lot of time lying down (thankfully I'm a stay at home mom, so I can do that). Now that my exercise goals are more modest, I find that exercise almost always helps, even if I feel terrible and only make it 3/4 of a mile before I go home and lie on the couch. I'll recover quickly and be fine by today's standards later.

For reference, my doctor pegged me as a 4.5 out of 10 on the POTS intensity scale. I know a lot of people deal with more crippling symptoms than I do. I also was a jogger/exerciser before, so I think that helped. I can't imagine getting into exercise if I hadn't had some residual cardiovascular training in me. And I'm definitely still a shell of my former self. I used to run 5 miles several times a week, do intense workouts, and walk another two miles a day just getting around town. And I rarely sat down or was still. Now my moderate exercise is usually the hardest thing I do all day. I often go to bed at 8 p.m. or take a nap mid-day. But I'm happy that I'm getting the hang of managing my symptoms so that I can do what I need to do each day and have a little in reserve too. And exercise is a huge part of that.

It was the first drug they tried with me other than a BB due to pregnancy and breastfeeding. The first night was AWFUL (doctor had me start at 50mg right away . . . way too much for me to handle), so I believe I dropped down to 25mg, then 37.5mg, etc. I remember that starting on Day 11, I had four amazing symptom-free days. I eventually worked up to 75mg. At that dosage it affected libido and my weight. I tried to wean off it last year when I felt really good over the winter, but that was a mistake! When I got down to 37.5mg, I had a big relapse. So now I'm just hanging out at 50mg. The side effects seem better at this dose. I still have trouble with weight loss, but that might be the Florinef too.

Good luck, hope it helps you!

Welcome! My story is very similar. Did your symptoms start one year after weaning your child, or immediately after weaning your child whom you nursed for a year? In my case it was the latter. As soon as I weaned her and got my period back, I started having weird episodes, which like yours, were mostly to due with "that time of the month" or after flying. When I became pregnant with my second, things got a lot worse, but at least now I know what I'm dealing with and have learned to manage it a lot better.

Yeah, sitting is the worst. I feel like I have first gear (lying down) and fifth gear (zipping around doing stuff), but the middle gears are just awful. This is why I am always so behind on the laundry -- too difficult to find a good position for the folding. Standing almost seems better, but sometimes that's just too much. But if I'm sitting, I can't reach all the piles, and I seem to get bogged down by gravity bit by bit.

Back when I was teaching (pre-diagnosis), I used to sit crossed-legged in my desk chair. I still sit that way whenever possible. Last night we had dinner guests while I was feeling POTSy, so I tucked one leg under me and propped the other on my husband's chair. I was better off when we were standing earlier in the evening, though by the end of the evening, standing was beyond me.

I believe I've had POTS since I was 14, but I avoided things that caused me problems and got into really good shape in my 20s, so it was a non-issue. First pregnancy was fine, but after I weaned her at 12 months, I started having POTS episodes (unknown to me) where I'd wind up vertiginous, vomiting, super low BP, etc. Just brushed it off. Second pregnancy, as early as 7 weeks I knew something was "wrong." I couldn't tolerate sitting upright at all and was immediately diagnosed based on a poor man's TTT. Things got better in the second trimester, but I still had to deal with being deconditioned from a few sedentary months and having to take care of my toddler. The only medication I took was 25mg Metoprolol, though I don't know that it helped much. I was given a week's worth of saline infusions in the first trimester, and have been told by my now POTS doctor that he would have done IV therapy throughout and not Metoprolol. He says he works with an OB and they could take good care of me in a future pregnancy.

I was fine with the delivery -- even managed to have a vaginal delivery despite a prior c-section, though I needed an epidural because I was having intense adrenaline surges -- and crashed about 3 weeks later, winding up in the stinky old ER. Again, I wasn't with my good doctor yet. I remember my husband putting a dirty cloth diaper back on the baby because he didn't realize it was a bag full of dirty diapers he was grabbing as we ran out the door (sad hospital doesn't have a L&D or diapers!), and I was like, "You should have asked me! There are two emergency disposables in the pocket!" as I lay there getting fluids. Random memory. Anyway . . .

I'm much better with my current doctor, so who knows how things would have gone if I'd had his help at the time. He told me that breastfeeding actually affects your bodily fluids more than pregnancy, so that's something to consider, and that's what caused the initial relapse I believe when my milk dried up with my first. I had trouble with anxiety while breastfeeding my second and had to use donor milk while I took Ativan on an emergency basis, though I later determined via Dr. Hale's Pregnancy hotline that I felt comfortable nursing through it and watching her for signs of drowsiness. Google Dr. Hale at Texas Tech -- they have a hotline you can call with the latest research on medication use during pregnancy and lactation. Most doctors are afraid to prescribe anything, which is a shame.

The biggest thing that has helped me now is Midodrine. What I thought was anxiety is just my body's response to not getting enough oxygen to my brain. I don't know if it's contraindicated for pregnancy and breastfeeding because I started taking it after, but it's been the biggest help in my symptom management, along with eating and sleeping well, exercise, knowing my limits, etc.

I don't know if this has helped or scared you. I have had many moments where I felt I couldn't handle the symptoms, but I always have, and now with the Midodrine I don't have those moments anymore, thank goodness. I remember in the first trimester counting down how many days I had left until the second trimester, and thinking, "Oh dear heavens, I have 50 more days of this to go," and feeling like if I had a miscarriage, I just couldn't bear to try to get pregnant again. But that was a fleeting feeling, and now I have two wonderful daughters that I wouldn't trade for the health and body of my 20s. If I got pregnant (accidentally -- have the Mirena now), I would just suck it up and persevere, knowing that it's a temporary thing. But I also have to worry about my ability to take care of the two children I already have, so it's not something we're planning on. We have adopting a third on the table, but I think we're leaning towards not. It's hard to think about going back to the sleepless nights once you have two bigger ones!

I had the same experience when I started Zoloft (wound up in the ER with the doc telling me not to keep taking it), but after discussing with my PCP I decided to keep going, and I do think it's helped. But yeah, first night I had horrible adrenaline surges, prickly skin, nausea. At the time I was in the throes of POTS-induced anxiety and was breastfeeding, so my options were limited. I also think I started on too high of a dose. I should have tapered up.

I tried Verapamil and kept having to lie with my feet up (including in a large pile of bird poop at the zoo!) due to sudden wooziness and the feeling that oxygen wasn't reaching my brain. My cardiologist who put me on it didn't tell me to monitor my BP or HR so I don't know how that was affected. I dropped both the Verapamil and the doctor shortly thereafter! I take 12.5mg of Metoprolol (beta blocker) daily and tolerate it OK.

Yes, I have felt that way. I started Zoloft with Ativan for bad moments during the worst of it, but I've found recently that Midodrine stops my attacks, so my suspicion that the anxiety was a symptom of not getting enough blood to the brain must be correct.

My spell was while I was breastfeeding and doctors were very reticent to help me. We were all set to check me into the mental wing of the hospital because I couldn't tolerate the feeling for such long periods, and that's when my GP prescribed me the Zoloft and Ativan.

I don't know if Midodrine would be appropriate for you but can't hurt to ask your doc.

I should update -- once I got down to 37.5 mg, I started feeling very agitated and edgy after the initial withdrawal symptoms wore off. So I bumped it back up to 50mg and am still taking Zoloft.

Gemma, I'm the same; I believe the POTS causes the edgy feeling. It comes and goes -- some days I have stomach problems, some days fatigue, and some days an edgy feeling like I'm not getting enough oxygen to my brain. I do think the Zoloft helps.

I've woken up with episodes like you describe before. Not fun. My tachycardia is more like 130bpm, though. I can feel the adrenaline surging through my body (have hyperPOTS). Often it's accompanied by extreme chills. I'll be under 6 blankets with a hoodie on over a warm hat and I'll still be cold.

Were you dehydrated? That's what usually triggers mine, either from not hydrating well enough, drinking alcohol, getting a stomach bug, etc. Then it begins the vicious cycle where I can't hydrate because my body is going bonkers and I feel like if I swallow anything I'll start vomiting. I just try to calm down (take an Ativan) and sip as much Nuun water as I can tolerate. I've been pretty successful with surviving (i.e. getting through them on my own) the episodes recently. My main goal is to avoid a trip to the ER, which always winds up costing $700 (and we're supposed to have good insurance . . . sigh). I can't tolerate watching tv or listening to music or anything, but I'll just try to distract myself with planning a future vacation or remembering a book I just read or something . . . just anything until the Ativan and water start helping me get back to normal.

Hope you are feeling better now!

Through a Facebook group I was able to find a local doctor (a nephrologist) who is the local POTS-guru. He said (nicely) that he didn't think my cardiologist liked treating POTS patients. I have to agree. She seemed to forget who I was, was never willing to prescribe me anything I had done research on (like midodrine), and was difficult to reach . . . call her nurse, wait for a call back, wait for the nurse to ask her . . . My new doctor sees me every 3-4 months and responds immediately to emails. He is a blessing. Now I worry about what I will do when he retires! Hopefully with the passage of time, more doctors will become acquainted with our condition, but I think being good at follow-ups and constant communication probably varies a lot with doctors.

Hopefully somebody here can help you find somebody local to you.

Before I found the specialist, I had good luck with my GP -- he was also one to respond to emails, think outside the box, etc. Unfortunately, he moved away this past spring, which was partly the impetus for me to "break up" with my cardiologist and find somebody else to treat my POTS. At least with my responsive GP, I could get a script for Phenergan or the like, as needed.

I have trouble with breathing during planks. I usually modify them to be on my knees. Pre-POTS I could do them without modifications. I just don't push it -- listen to your body.