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Magalot

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Everything posted by Magalot

  1. Brilliantly put, thank you for expressing it so well! I really struggled after diagnosis, I thought I would feel better once I knew what was wrong with me, but instead the 'weight' of having a chronic illness was quite overwhelming. I am coming to terms with it and CBT is helping. I found that friends and family were super supportive at the beginning but now that I am coping pretty well, managing at work etc, they seldom check with me how I'm doing. It's like they've forgotten how unwell I can be at times and how much of a struggle simple things can be because I appear to be well .
  2. I have suffered with night time tachycardia, more so around the time of diagnosis earlier this year. I still get it a little bit now but not as much. I used to wake up with a racing heart quite soon after going asleep and then towards the morning I would continually wake up with a kind of adrenaline 'whoosh' feeling coming up through my body from my stomach to my head. It happens less now, maybe only once or twice a week. I've made tons of lifestyle changes so hard to know what helped but the thing I think gave the most benefit was exercising before bed time which I feel helps use up any extra adrenaline. Also ice-packs on my stomach during the night help too. If you look up Dr Sanjay Gupta on YouTube he has some good videos on poor sleep in POTS patients.
  3. I have always been a very anxious, but happy person but since I've developed POTS I definitely have a lot more anxiety, I think it's related to extra adrenaline in my case. And also the very nature of POTS symptoms can make you feel very anxious. I've got a lot of the physical symptoms under control through lifestyle changes but am still suffering with the increased anxiety so I've begun psychotherapy recently to see if it can help me get a handle on the anxiety aspect. I also take a low dose SSRI.
  4. When I was very unwell earlier on this year, I would have problems going asleep and staying asleep. I would wake up soon after I'd gone asleep with racing heart, feeling confused, panicking etc. And then near the morning I would continually wake up with a jolt, feeling like surges of adrenaline coming up through from my stomach to my head. I've made a ton of changes since then so it's hard to know what's helped but the thing I feel really improved this has been going for a run in the evening time. I'm lucky I can still exercise like this, I know a lot of people can't . I feel like it uses up all that extra adrenaline so it's not racing sound my body at night. I still have restless nights sometimes, but nothing like it was before.
  5. I get something similar to this too, my heart rate is much more controlled at the moment from exercise, compression etc. So I feel like the adrenaline surges don't affect my heart the way they used to but they still affect the rest of my systems including a churning stomach and heightened anxiety levels.
  6. Other things I've found that helps are to put an ice pack on my stomach or take a cold drink of water. Breathing exercises sometimes help settle my heart rate too.
  7. I have found that going for a short, quick run every evening has really helped with adrenaline rushes. It feels like I use up the extra adrenaline this way, so I get less rushes especially during the night. I know I am lucky to be able to exercise like this.
  8. I've had to give up going to the hairdresser but I've found someone who comes to the house. I can get my hair washed before she comes, she just cuts it and then I can dry it myself. So much easier. I used to wonder why I felt so strange in the hairdresser before I was diagnosed. I especially couldn't manage leaning back to get my hair washed. It's great to come on here and find out that my weirdest symptoms are normal for lots of other people!
  9. There are videos on YouTube of lying down workouts suitable for POTS. I found this one really good. .
  10. Diagnosed about a month ago (probably hyperPOTS) but have been symptomatic since the birth of my second child 3 years ago. In hindsight, have had mild symptoms for longer, but noticeably worse since then. On a sidenote, got whiplash in December (said child kicked me in the head, horseplay gone wrong!) and had a big flare after that!
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