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shan1212

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Everything posted by shan1212

  1. I did 23andMe before they had to stop providing the medical information. From my understanding, they no longer provide the medical information at all. They are hoping they will resolve their problems with the FDA, and I assume in that case they would release that information to you as soon as they are able (if ever). If I were you, I'd use a different service just to be safe, or wait for them to get FDA approval for the medical stuff before paying for it. I wouldn't pay $100 just for the ancestry stuff. There were a couple of other services listed in this article -- maybe try one of those: http://www.nytimes.com/2013/12/31/science/i-had-my-dna-picture-taken-with-varying-results.html?_r=0
  2. I'm now down to half my original dose; I've reduced the dose three times. Each time I felt icky for the first few days, and then went back to feeling really good. I know I never qualified as being depressed, and I believe the anxiety was/is just a POTS symptom that occurs when I'm not getting enough oxygen to the brain. I know SSRIs can help POTS but I'm optimistic that I'll continue to do well on my regimen of Florinef, Metoprolol, and Midodrine (plus lots of exercise). When I first prescribed the Zoloft, my POTS wasn't being well-treated at all. I won't lie, though, those first few days after dropping the dose are rough. I know I wouldn't have been able to do this before my POTS was well-managed. I had a bad reaction the first night I took it, though, and I can only tolerate very low doses of my other medications, so I think I am particularly sensitive. I've read a lot of reports of people finding the withdrawal difficult, but only a handful who couldn't do it at all. I'm nervous about when I stop altogether because that's when people report the worst symptoms, and just dropping my dose by 12.5mg at a time isn't easy. But my quick return to feeling good assures me that I should keep with it.
  3. Update -- it's been almost two weeks at a lower dose (went from 75mg to 60ish). The first few days I had an edgy feeling when I woke up and sometimes later in the day too, but it wasn't unbearable. I took a couple of phenergan because I find that to help me when I'm symptomatic. But after maybe day 4, I went back to feeling great. I'll be dropping down to 50mg in a couple of days and will see how that goes. Oh, and already my appetite is noticeably decreased. Could just a drop of 20% do that? Well, who cares, I'll take it! Glad to finally be losing some of this baby weight I've had for almost two years!
  4. I am not a doctor, obviously, but it would seem to me that if you have already had two pregnancies while symptomatic with POTS and everything went OK, then you could figure on things going just as well this time. Of course, anyone, POTS or not, can have a very different experience one pregnancy to the next. I was diagnosed during my first trimester with #2, and my OB had me on home IV fluids for a while and a low dose of metoprolol in coordination with my cardiologist. The birth went fine. Actually, I switched from my OB to a midwife practice at 37 weeks, and that probably saved me from having a repeat c-section because at 38 weeks I had a bad POTS/tachycardia episode and called the midwife in a panic. I'm positive my OB would have been like, "Just come in now for a c/s," but the midwife was like, um, take a benadryl and call me when you're really in labor. Not as sympathetic as she could have been, but hey, it worked out in the end. But anyway, now I'm seeing an internist who's our local POTS guru, and he seemed shocked that I hadn't been classified as high-risk and that the pregnancy went OK anyway. I shudder to think of something going wrong because I wasn't being given the correct care. When it comes to your baby's health, I'd say that it's better to be safe than sorry. You could still have a med-free birth at the hospital, maybe using one of your midwives as a doula? But this is all conjecture because we don't know what they'd say. I assume the high risk pregnancy stuff has more to do with how they monitor the baby and less to do with how you get the baby out, especially if you aren't planning to use anesthesia. Maybe your POTS doctor/s would only need to coordinate with your midwives and nothing else would have to change. This is probably one of those situations where the midwives will be learning about POTS and pregnancies at the same time that you do.
  5. Glad to hear you are feeling so well!!!! Hope everyone can get a little more relief these days!
  6. I'm going to go off of my Zoloft and was looking for insight and advice. When I was prescribed it originally, I was breastfeeding and wasn't having my POTS adequately treated. I would get very edgy when I wasn't getting enough oxygen to the brain, and it wasn't a feeling I could tolerate. They were unwilling to give me Ativan or the like as I was breastfeeding, and nobody suggested Midodrine. So fastforward 18 months, and I feel my POTS is much better under control. I'm seeing a doctor who actually listens and knows his stuff, I'm not breastfeeding any more so I don't have to worry about that, and I'm not happy with the side effects of Zoloft. I'm taking Florinef 0.05mg every other day and Metoprolol 25mg every day, plus I have Midodrine and Ativan as needed. But I'm a little nervous about going off it. Two nights ago I dropped from 75mg to 62.5mg. Is it too soon for me to feel the effects of it because both mornings I have felt edgy upon waking? When I first started it, my GP put me on 50mg the first night and I had terrible side effects and wound up in the ER, so I do think I'm very sensitive to medications. Does anyone have any advice? My greatest fear is a POTS flare. I have continued taking it all this time because I do believe it helped my POTS. When it first kicked in, I had a few symptom-free days. Likewise when I bumped it up again from 50 to 75. Has anyone else taken an SSRI exclusively for POTS, and gone off it when your overall symptoms were better managed? How slowly did you taper down?
  7. Yes, my husband and I did it a few months ago. Like others, I found it mostly reassuring. I have reduced risks of all the major things except a rare stomach cancer and the risk is still less than 1% for that, just increased versus the average. I have an increased risk of gout which my dad and brother have, so that wasn't surprising. My mother-in-law was always telling my husband he was at increased risk of heart disease because his grandfather had a heart attack, but the report said the opposite, and he was greatly relieved. I found out I'm 100% European -- thought maybe it would be more exciting than that. I was hoping for more of a breakdown by country but it only pinpointed 18% of my ancestry specifically by country.
  8. Hang in there. I'm a mother of two, too. I can totally relate to your frustration. But there really is reason to have hope -- I'm managing pretty well with medication and lifestyle changes and I am hopeful that I can improve even from here. Hugs.
  9. It makes me sad too. I think without POTS we would definitely have a third. But I just think of most people in the world can't have as many babies as they want for whatever reason . . . finances, no partner, age, etc. My reason is POTS, but I still have to be thankful for what I do have. I'm no hero either. I'm spending a fortune on a babysitter and a cleaning service so I can exercise and rest and save up my spoons for the stuff that has to get done. My husband wakes up with the girls every single day while I ease into being awake and fluid load. I stumble downstairs when he goes to work and we watch tv until I'm functional. Then I may or may not be up to doing housework during the day, cooking, taking the girls someplace, or doing anything when he comes home from work. I really wish I could carry more of my weight, but I try not to focus on that because it doesn't do me any good to focus on what I can't do. I have to focus on what I can do.
  10. Wow, didn't know this either! Maybe it explains his kind of breathy singing style?
  11. Had my TTT this week too, and same results! I really wasn't expecting to pass out. I'm still more winded and woozy than usual and needed to be completely flat for a period last night, which is unusual for me (though that's how I spent the entire first trimester with my last pregnancy, so I remember it well). Ah well, knowledge is power. I'm trying to ease back into my normal routine. I did manage a workout yesterday but it was pushing it. Today is supposed to be a running day but I just don't know. I might have to run around my block 20 times so I'm never too far from home. Anyway, glad you got some answers. Hope you are feeling a bit more "normal" today!
  12. Hugs! I don't smoke so I don't know what it's doing specifically to your body, but I would avoid it possible because you don't need any extra stimili to deal with right now. I know how you feel. I had my yearly checkup with the midwife this week, and I got perfect marks for working out 5x a week and having very small amounts of alcohol very occasionally. It sounds like I am some health nut but really it's because I can't function otherwise. I would work out a lot less and drink a lot more if I could. Sigh . . . Hang in there, and maybe throw those ciggies away before you get hooked again? Can you buy yourself something? That's what I do when I'm feeling sorry for myself. I hobbled out and bought a ridiculously expensive stroller that we don't need when I broke my foot a few months ago and knew I was going to get deconditioned. Oops.
  13. Hanice, cardiomyopathy has never been on my radar before, but from reading the description, no, I don't think I have that. I believe I've always had hypovolemia/POTS. I had periods of tachycardia in 9th grade and wore a heart monitor, but it was written off as "stress," of course. I have always had exercise intolerance that I was compensating for by avoiding sports. Always had trouble with my arms above my head. Couldn't run a block without gasping for air -- had to build up to slow jogging after six months of power walking. And this was all prior to pregnancy and diagnosis. After I weaned my first (which coincided with the return of my period), I had weird bouts of dizziness and vomiting brought on by my period or air travel or dehydration. Of course, I didn't know what it was or what to look for, so I thought it was food poisoning or the stomach flu or something (though I should have questioned more because I have a stomach of steel and hadn't vomited in six years before that). So GI issues were one of my first clues though in hindsight I know that was just from the adrenaline overdrive I was in. I believe that post-pregnancy my POTS got a lot worse because of the changes in blood volume from pregnancy and lactation. I am eternally grateful that I have my two healthy children but let me tell you . . . pregnancy is not something I plan to do again! We will look into adoption if we decide our family isn't complete and I have the energy for another.
  14. Misstraci, I know, it is such a mystery why you can be OK-ish sometimes, but totally wiped out by something small another time. I do feel like two-years into living with this, I'm learning to anticipate when things will go bad with a higher success rate. It's such a fine line because sometimes what I need to do is push myself a little harder, and sometimes I need to go easy on myself. It feels like it's a full time job just trying to stay on top of it. A few times recently I've thought I was doing OK and then carried my one year old upstairs to change her diaper, which brought on an attack. Now I've been more careful with easing into activity in the mornings and fluid loading, and that has seemed to help. So I think some of the "unexplained" episodes I had in the past were when I wasn't paying attention to my hydration like I should have been. Of course, as I told my doctor, it's annoying to have to do everything perfectly all the time. You let up on your vigilance for a minute and then pay the price for it. And yeah, I'm glad I flunked the TTT. I think I always try to put on a brave face for my doctor; I don't know why. I guess I want her to know that I'm doing all I can on my end? But I think that maybe I have given her the impression that my case is mild by focusing on what I can do instead of what I can't, if that makes sense.
  15. My OB was very good from the medical standpoint, but I actually left her at 9 months pregnant with #2 because I began to suspect I didn't have much chance of avoiding a second c-section with her. But yeah, I know I'm lucky that she had seen it once before and put it together. The nurse who answered phone calls had been so patronizing to me ("Drink some gingerale." "I can't write you a note to get out of work." Um, thanks, I don't work! I'm just calling because I feel like death and I don't know why.) so I was like, "See!!!!!" when the doctor ordered me IV fluids right away. Hanice, pumping for two months is hard work!!! You have to take the time to do it when your hands are baby-free, and then you still need to bottle feed the baby, plus store all the breastmilk and clean everything. It's exhausting. No matter how hard I tried I couldn't pump more than like 0.8oz per hour since I last pumped or breastfed. You should be proud that you were able to do that much with POTS and two kids to take care of. Last summer my one-year-old was about 5 months old, so she was still exclusively breastfed, and my POTS got really bad. It was a really hard time because doctors kept saying they couldn't give me any medication because I was BFing, but I was felt so edgy and anxious and terrible all the time, and on top of that I had to be a milk machine every few hours. We actually got some donor milk so I could take Ativan a few times. Once I started Zoloft things got a lot bit better. Anyway, so I absolutely knew I wanted to wean her before this summer so that I wouldn't have to worry about what medications I take and all that. A few months ago she started only wanting to nurse once a day in the mornings, and that wasn't enough to keep up my supply, so that was that. With my first I weaned her on a schedule so it was nice to have it just "happen" and not have to feel sad about it. Well, not TOO sad. A little.
  16. Mine are two years and four months apart. I breastfed my first for a year, and when I weaned her I started having weird episodes of what I know now is POTS, but they were few and far between so I thought I kept getting the stomach flu or something. It was when I got pregnant with #2 that I was laid low by dizziness. Actually, my OB took one look at me unable to sit up on the exam table and said, "Oh, I know what this . . . what's it called again? . . . neurocardiogenic syncope." It turns out she was right. I'm very glad she was familiar with it, to say the least.
  17. Thank you Hanice! It's odd to feel proud of getting a bad result on a test but I am -- I need to look at it as "glass half full" and be thankful that I'm able to do most of the things that I want to (though not too much in one day, of course). Yes, I was diagnosed with NCS based on this. I see you got POTS after a second pregnancy . . . me too (well, during).
  18. I was diagnosed with POTS two years ago when I was pregnant, but we didn't do a TTT because I didn't want to pass out while pregnant. Although, to be honest, I really didn't think a TTT would cause me to pass out because I never do . . . But I did! They put me at 60 degrees, and it was immediately difficult. Mind you, I jogged for 40 minutes yesterday, so I'm not deconditioned. My HR shot up from 70 to 130, and I got queasy and woozy. Then I got super flushed, felt the adrenaline firing, and passed out at ten minutes in. I was just relieved that it was over. Honestly, I really wasn't expecting to do so "poorly." I thought that after two years of learning how to manage, making lifestyle changes, etc., that I would probably have a HR increase of 40BPM or something, but that would be it. On one hand, I'm thinking, wow, I'm really sicker than I realized. This is me in an "improved" state. On the other hand, I'm thinking, well now I don't have to feel like I'm lazy when I scale back on activities because I don't have the energy. I'm doing pretty well considering. The cardiologist gave me a prescription for Verapamil because I didn't like Metoprolol, and I'll continue my Florinef and Zoloft (had stopped Florinef this week in anticipation of the test).
  19. I have to listen to my body too. I'm currently in a napping phase. Thankfully my one-year-old is taking a long afternoon nap and my three-year-old will play next to me while I sleep on the couch. I try so hard to stay awake but I just can't. In my case, I seem to rotate through my primary POTS symptom almost on a weekly basis. Fatigue which causes napping is one of my preferred symptoms, actually. I'll take that over nausea/motion sickness or tension headaches any day.
  20. I think I'm currently drinking at least 150 ounces of nuun water a day. I'm just so thirsty all the time! When I exercise inside, I'll drink 16-32 ounces during exercise. When I jog outside, I'll drink 50-75oz, or more! And then I fill my 32oz. mug up several times a day. I do worry that it's a little excessive but I think I really need it. I've always (even before POTS, or before I had it bad) needed to carry water with me everywhere I go. And now that I"m taking florinef, I seem to be even more thirsty.
  21. I drink nuun water all day. I think the flavor thing is just personal as I've seen people recommend ones that I don't really like, yet obviously I like others very much or else I couldn't drink it all day.
  22. I was on metoprolol last year but didn't notice any benefits and thought it was exacerbating my fatigue. A 10k is 6.2 miles, but who's counting? (Me, of course!) I will say, though, that in my case I wonder if it's more that without exercise, my POTS would be worse. I suspect I've always had a mild case of it. All my life I was extremely exercise intolerant, could barely lift a dumbell or hairdryer over my head. But I slowly worked my way up to being in very good shape. Then I had my first pregnancy, gained 48 pounds, nursed for a year, and then weaned my daughter (hormones, hormones, hormones). I imagine that if I hadn't gone into my pregnancy in very good shape, I would have had a rougher go of it. When I weaned my daughter and resumed my womanly stuff, I started having these horrific epsidoes that I thought were food poisoning or something (obviously POTS in retrospect). I even went to the ER the week before I ran the 10k, got IV fluids, but recovered. Then I got pregnant with number two and ka-BAM, I was unable to function and on an IV at home for a week. Despite all of this . . . two pregnancies, gaining 45+ pounds each time, losing some/most of it, breastfeeding, illness, twisting my ankle . . . I can still pick up and run a mile or two at any time. And when I was starting to get into shape, I couldn't run a block. So I don't know, I guess I'm saying that I seem to still be in very good cardiovascular health (for me, a person with POTS . . . I've never been able to carry on a conversation while jogging, and I'm sure I never will). I contacted Dr. Levine's exercise study and they were like, oh, you can run for 45 minutes already, hmmm . . . In my case, I'm still fairly conditioned, and while it's important to maintain that, I don't know how much benefit is left for me to milk out of it. Happily, though, I seem to be responding very well to Florinef and Zoloft. I still feel my POTS symptoms but it's like the volume is turned way down most of the time. An adrenaline surge or a dizzy wave is just this little nuisance, not something that precipates being in bed for a wild ride like it used to. Knock on wood, of course. It's all so dynamic and just when you think you'll never get better, or never feel bad again, of course it changes. Westernmass, an obstacle course, wow! I can't even run on an incline, ha. And yeah, I hear you. Finishing is all I care about. I love the winter! Why do I live somewhere with hot, humid summers? I had a great jog today in the cold misty rain. I did just about half of a 10k, and felt great.
  23. Thank you Katy!!!! I will need the encouragement! Meg, I didn't know there was a POTS awareness ribbon. Off to google it . . . . My race is in April too. We can be training buddies! Ramakentesh, yes, that is the kicker about this condition. I hate not knowing if I'll be well enough to do things. I just RSVPed to a baby shower that will require me driving 3-4 hours each way by myself, and I wanted to add the caveat, "If I feel well, that is," but I figured, oh well, I can always cancel last minute if I don't, but I don't need to say it ahead of time. Running has always been hard for me (makes sense in retrospect). I couldn't run a block when I first tried. 6 years ago when I started exercising regularly, I worked my way up to speed-walking 6 miles, and only then did I transition to slowly jogging 1.5 miles. But ever since I worked up to being able to do, I've retained the ability to run a mile or two, no problem, no matter what I've gone through . . . pregnancies, weight gain, illness, etc. I'm thankful for that, at least, because I imagine my POTS would be worse if I hadn't upped my cardiovascular abilities. But a 10k is beyond my ability to just phone it in . . . I'll need to train and work up to 6 or 7 miles (I like to run farther than the actual race beforehand because I don't want the actual race to be the absolute most I can handle . . . not smart IMO if you are already handicapped as we are). And right now 4 miles is a challenge. Gotta get to work!
  24. That's awesome! And how sweet that your daughter was there to cheer you on! It goes two blocks from our house, and I know my husband will have the girls out to cheer for me, which will be awesome. I just hope the weather will cooperate. Hot and sunny is bad for me. I recently got a Camelbak that holds 50 ounces, so hopefully that will keep me going, plus I can grab gatorade every mile. Or I might just carry a hand bottle with EFS powder too (I only put water in the Camelbak because I'm not sure how to clean the bladder very efficectively).
  25. Does anyone want to join me reaching an exercise goal? I did the local 10k in 2008 and 2011 (didn't do it when pregnant or last year when I had a one month old). While in retrospect I had my first POTS related ER visit a week before the 2011 race, I've never run it knowing I have POTS. I signed up for an 8k last fall and worked up to a 4 mile jog, but my sister and I felt like sleeping in so we skipped it. Oops. But I'm not skipping this one unless I'm sick because it cost $80 to sign up! I would like to slowly jog the whole thing, but if I just make it to the finish line, that's fine. My previous two 10ks I ran in an hour and 4 and a half minutes (ony deviated by four seconds!) but this year I weigh more, I've got POTS, and well, yeah. So I'm not setting a time goal but I'm expecting it to be about ten minutes slower, and that's if I'm able to jog the whole way. So anyway, I wanted to make it "official" and post here that I'm doing it so that I don't wimp out again. Wish me luck! Today I jogged for 30 minutes, which was probably about 2.5 miles. So I've got a ways to go, but I also know from experience that the hardest part is being able to jog the first 20-30 minutes, so I'm optimistic.
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