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Everything posted by Yhoun

  1. I am so glad that you got answers, bombsh3ll. Hoping for effective treatment and swift healing!
  2. I agree strongly with JaneEyre9 — your decision shouldn’t be made on POTS alone, but based on an assessment of your whole situation. I was diagnosed with POTS in 2015 and had a baby in 2018. My POTS is mild compared to some (i.e., have never fainted, I was able to keep working (I also have a very flexible job)). I was also afraid that pregnancy would make me worse, and that I would stay worse. Pregnancy did make me feel terrible — some of that was POTS, some of that was pregnancy, some of that was being pregnant in a city during the summer. And a couple of months after giving birth, I did flare. In fact, I posted on this forum several months ago, because I was not feeling well, and didn’t feel like I was being the best mother to my baby. That time sucked. As my baby got a little older and there was a little more time to spend on myself (6 months is way different from 3 months), I started to do more things to manage my condition. I found a new cardiologist and started a different beta blocker, and I started the CHOP exercise protocol. Several months after making those changes, I am actually feeling better than I did before I got pregnant, on most days. My next steps are to keep increasing my exercise intensity, and to address my diet, hoping for further improvement. I don’t know where you are in your journey, but if you haven’t yet tried everything, remember that you might yet feel better. (I hadn’t previously been able to keep up exercise, which is turning out to be really important, and I’m starting to understand that I basically need to organize my whole life around it.) I agree with the posters who emphasized the importance of a support system. ALL new parents need/deserve a lot of help. You will want a partner who is totally in it with you, and doctors you trust, as many friends/family as you can get to come around. Or if you don’t have one of those things, you’ll want money enough for take-out for months (!). Hope this helps. Happy to share more/answer any questions.
  3. Thanks for the replies, everyone. I’ve been progressively exercising more with the CHOP protocol, and I also stopped breastfeeding very recently, so I wonder whether is was my body responding weirdly to one/both of those changes. It’s a relief to have some company in these symptoms, at least. I’ll keep an eye on it and hope it goes away...
  4. Thank you for posting. I've been working my way through the CHOP protocol, and I'm interested to compare them.
  5. Does anyone recognize this sensation?: Within the past month, I've started to feel random buzzing sensations in different parts of my body, most often in my feet and legs, but sometimes in other places, too,. It doesn't feel exactly like the tingling I sometimes get in my feet and legs. It's more like someone is taking a tiny electric buzzer and holding it against my skin. It's very strange. I mentioned this to my PCP, but she had never heard of anything like it. (I haven't yet asked my cardiologist, who manages my POTS, as I wasn't sure it was POTS related.) When I try to google it, I get MS forums, but I've had two clear 2 MRIs over 6 years, so I thought that made MS pretty unlikely. I had a skin biopsy a couple of years ago that was normal, which I thought ruled out SFN. Any ideas? It's not debilitating, but it's annoying and sometimes a bit worrying, since I don't know what's causing it.
  6. Congratulations! I hope that you keep improving and collecting more achievements.
  7. Thank you for your replies! I am relieved to know this happens to others, too, and you don’t worry about it. I’ll try to “rest easy” as Delta says!
  8. I feel a little silly asking, but I’ve started to have more frequent episodes of waking up in the middle of the night (or in the middle of a nap) to find that my arm is numb and I can’t move my hand. Usually the left side. It feels like a trapped nerve, as within a minute or two, I get the feeling back in my hand/arm. But it’s pretty scary while it’s happening. Does anybody else get this? Is this connected to POTS at all? Is this just me sleeping on it funny, or something else?
  9. It sounds like I need to accept that I need to go as slow as I need to go. I won't give up! Thank you for the encouragement.
  10. @Pistol Gosh, it feels like I’m going so slow already! But you are probably right — I will decrease the exercise intensity. @yogini I will keep trying the protocol for now, but if I can’t handle it, I’ll find something less intense. It’s good to know that you found improvement (even recovery!) with non-cardio exercise.
  11. I just started the modified CHOP protocol — I’m on week 3. I feel terrible. I don’t have a lot more fatigue, which I expected — but I feel more dizziness, there’s a nearly-constant feeling of air in my ears, and I’ve been having GI issues worse than I’ve felt in years. I also feel a lot of agitation in my body, like I have to keep fidgeting. Last week, I took two days off of work. Yesterday, I tried to go to see a play and had to leave after 15 minutes because my body would not calm down. This morning, I had to bail out of brunch plans with visiting family. I’m so discouraged. For those of you who have tried this protocol or started an exercise program, is this normal? Will I feel better?
  12. Thank you for all your work in making this a valuable resource!
  13. Thank you for the good thoughts, potsiebarbie, I will try and remember to update as soon as I have updates re: the specialist appointment. Since I’ve been pregnant, I’ve been doing fluids, mostly, and trying to stay as active as possible. Funnily, I’ve never been recommended to salt-load or drink electrolytes, but I will ask about that. I have tried compression socks, but I can’t feel much difference — I don’t know if that means I don’t have much blood pooling? I would like to try an exercise protocol that I’ve heard about (Levine or Dallas, I believe), and I’d like to try modifying my diet, but I want to consult with the doctor first, and make changes in a systematic way. Like you, I really miss feeling “carefree”. I hope you can get that rowing machine, and that it helps!
  14. Thank you for the kind words! I did wear a 30-day monitor a couple of years ago, that's when I first got diagnosed. The cardiologist saw those results and did a "poor man's tilt table" in the office. i had to move shortly after that and never got a title table test, but I have an appointment with a new cardiologist, and I'll ask her for the TTT and to help me investigate whether anything else might be going on.
  15. Thank you for replying. I am sorry that your pregnancy and delivery were both so hard, and now POTS, too. How are you doing day-to-day? I am moderately functional, but definitely feed impaired. I am trying to keep hope alive, and keep trying things to help myself feel better. in fact, I just made an appointment with a new doctor, so hopefully she will have some advice/ideas.
  16. Thanks, stayathomemom, I love being a mom already, and I'm so excited to watch her grow. And thank you for sharing your advice. I would say that I have more constant lighteadedness these days, and when I feel worse, I feel more dizziness. I think you're right, and I can't take a beta blocker while breastfeeding. I will have to judge continuing breastfeeding against possible improvement in symptoms. Do you mind me asking: Do you know what caused your POTS? Do you feel symptoms every day, or does your medication work well enough so that you don't? bombsh3ll, thank you for understanding. Your advice is good -- I have to focus on what I can give her, not what I can't. And you gave me a lot of things to try -- I can easily start with the electrolytes and then work my way down the list. I am new to the area and don't have a strong support system (though I have a great husband), so I am working on making more friends in the area. But of course it's been hard to get out and make friends when I haven't been feeling well. I keep trying, though. I'm sorry that you have been feeling so unwell. It must have been so disappointing to find something that worked well (licorice root), and then it just stopped. Did you ever find a cause for your POTS? Mine seemed to come out of nowhere.
  17. Hi, everybody - I’ve been lurking on the forum since I was diagnosed with POTS about two years ago, after I had episodes of dizziness that wouldn’t do away. I have been living a fairly normal life, but I do feel off-balance/woozy a lot of the time, which has decreased my overall quality of life, and I also feel less effective at work. I had my first baby three months ago, and I would really like to feel better so I can do more with/for her. Like, last week I felt faint while we were out running an errand, and I’ve felt uncomfortable taking her out by myself since then — which is very limiting. If anyone has any relevant experience having POTS as a new mom, or success stories re: decreasing episodes of lightheadedness, please share! If relevant: I am not currently on any medications because of pregnancy/breastfeeding, though I will be switching doctors in January when my insurance changes, so I will be looking into that. I was on bisoprolol for a while, and midpdrine for a shorter period. I couldn’t tell how much they helped; neither was a miracle drug. I would love to find something that keeps me from feeling symptoms every day. :(
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