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Morrolan53

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About Morrolan53

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  • Gender
    Female
  • Location
    Canada
  • Interests
    Music, robotics, writing

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  1. I've managed to partially acclimate, to the point where I can stand low to mid 30s (90s F) for short amounts of time. Before, I could barely stand anything over 25 (75 F). It hasn't helped much though. The temperature swings pretty wildly here, sometimes 40 degrees Celcius in one day, and it quite warm too: not infrequently going into the 40s (100s F). Last year, I was more successful and could manage the 30s (90s F) ok. I always carry frozen water bottles, some sort of electrolyte drink, water and high-salt snacks. It helps, but for all that and the partial acclimatization, I'm still hopping from air conditioned building to air conditioned building for most of the summer. I also have issues with cold, but they're pretty mild in comparison. Even when the temperature goes to -40, enough layers make it manageable.
  2. I know what you mean. For the last year or so, I've been managing POTS pretty well with a bad flare once every couple of months. Last week, my symptoms flared up while I was performing at a concert (something I'd practiced for for months) I had to run off stage before I fainted. The things we do every day to accommodate our limitations become just a part of life and, in a way, we can forget that we're sick at all. It's the bad days, the little unexpected things, that remind us of what we've lost, that we are sick.
  3. Hi Emily, When I was first diagnosed, my cardiologist and neurologist also recommended exercise. At that point, I was having palpitations most the time, had very few spoons, and couldn't really stand which made exercise... interesting. I started with beginner's yoga (online follow along videos) where I would do a couple of things and ignore the standing up parts. I worked my way up until I could do all the non-standing parts, and eventually some of the standing ones. Once I was well enough to not worry about drowning, I found swimming really helped; the water acts kind of like whole-body pressure stockings and I would have almost no orthostatic intolerance.
  4. When my POTS was at its worst, I felt like I was suffocating. Now I still get it occasionally but it's always hard to tell if it's real asthma or POTS. I find drinking more water and lying down helps a lot.
  5. For me, yoga worked best. I had a lung infection right before getting POTS so I was very deconditioned. With yoga, I would follow online videos (search doyogawithme). I could do it at home do as little or as much as I felt up to and just ignore standing poses until I was conditioned enough. Now, on good days, I can even play squash. Swimming is also a good one if you can.
  6. I've had multiple EKGs but they never caught anything (no episodes) and wore a monitor for two weeks but had no episodes during that time. So I'm not sure what is physically happening to my heart during the attacks. It's against been over a year since visiting my cardiologist so I would have to go back through the referral system to see her. I'll talk to my (mostly unhelpful) GP about getting a referral. And the worry with the palpitations is not that they're dangerous, but that they happen suddenly without warning and I cannot focus during an attack.
  7. I've spoken with one of the doctors (Dr. Schondorf) involved in setting the 30bpm for determining if someone has POTS. He said it was a general guideline, that it was the usual difference he saw in people with POTS, but there are people with POTS who have much greater and much smaller variations. The important thing is that there is a noticeable and abnormal change in heart rate on standing.
  8. Mine tends to fluctuate as well (16yo female, average weight). And it varies hugely from day to day, some days I can stand for twenty minutes (moving around a lot) without any real symptoms, but others I feel shaky as soon as I stand and have to spend my day hopping form sitting to sitting. For you, it could be POTS, it could be something else; it varies so much person to person that it's hard to tell. Try to rule out other possibilities and get your doctor to set you up with a tilt table test. Good luck and keep us posted!
  9. Lying down/sitting: 60-80 Standing: 100-120 Active: 140-180 Attack: >180, shaking with skipped and extra beats I was on florinef 0.1mg for a while but am not currently taking any medication for POTS.
  10. Update: after talking with the surgeon, they've decided to do the surgery in hospital with an anesthesiologist. This is almost certainly overkill, but I'm glad and with the various health issues, everyone agreed it would be best. As a plus, with OHIP, it's cheaper this way. The only annoying part is that there's a much longer wait time (it'll probably be 9 months or so).
  11. Hi everyone! I recently started driving and yesterday I got my first heart palpitations episode while at the wheel (feels like my heart is shaking; lasts anywhere from 10 seconds to 30 minutes, sudden onset without need of trigger). It only lasted a few seconds and nothing went wrong (I just kept driving straight), but I'm worried it could happen again for longer and/or when I need my full attention. While the episodes are pretty infrequent (one every 3-6 months), there's often no warning. On off days, the stress of driving can be enough to make me feel ill (tachy, short of breath) while driving (those days, I just don't drive). When I got my license, I told them I have POTS and explained what it is, and they still gave me a license. Do you think I should talk to my doctor about my fitness to drive? Also, had anyone had similar issues with palpitations? If so, do you drive, and do you have any issues driving? Thank you!
  12. While I sometimes get these episodes, usually my core is too warm and my extremities are almost numb, so layers and thick gloves have been the way to go (for me at least). Are you too warm year round or do you get periods of being too cold too? Winter is also nice because you can just grab snow from outside or stick your hands in a snowbank.
  13. Lol headhunter. It's a lovely country to live in, even with POTS, and you get used to the weather (layers and an emergency parka help too ).
  14. Don't try Canada either... The temperature swings are crazy! 40 degree (72F) temperature changes in a day are not that unusual.
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