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darcyjohnson

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About darcyjohnson

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  1. I did hear that recently. I’m afraid to go off them though without seeing a specialist - I had a bad sinus tachycardia episode before i got diagnosed that ended me in hospital and lead to my diagnosis - I got put on beta blockers in hospital. My primary care doctor doesn’t know anything about POTS but because I’m too sick to travel any further I have to see that doctor cause she’s round the corner. I’ve never had a sleep study no. I assume a specialist would refer me for that. My heartrate sits around 70-80 when I’m sleep deprived but sits around 60 normally. I don’t have a bp monitor but my blood pressure is always fine that doesn’t seem to be a part of my problems, in fact sometimes it goes up when I stand up.
  2. Thanks pistol - I exercise on days that I have the energy to but I find that if I try and exercise on not enough sleep I just get sicker and either end up with a migraine or am even worse the next day. I’ll do what I can though.
  3. I was on 30 - maybe I could try a lower dose. I’m gonna try exercising as well - it will make me so sick but I’m running out of ideas
  4. I did try mirtazapine - this was before I got diagnosed actually - it worked really well but for the month I was on it I gained 8kg with no diet changes so I’m hesitant to try again I don’t want to keep gaining so much weight!
  5. I can’t sleep during the the day - so after about 9.30am until about 8pm - when I try I get close and then start getting unbareble nausea and intense tremors 😔 again, no idea why
  6. I’ve got POTS pretty bad. Before this month I couldn’t walk more than about 600ms and I’ve been this sick for about 8 months - I’m pretty close to bedbound. I’m currently on metoprolol but nothing else’s and have had sleeping problems since I got sick - but they would usually effect me one in every 7 days or so. This month I think I have had about 3 days where I haven’t had bad sleeping problems. It’s not so much getting to sleep that’s the issues, I wake up at around 3am and cant get back to sleep after that. When I don’t sleep for at least 8.5hrs, the next day I can’t exercise because I’m too sick - so all month I have been getting progressively worse as exercise is the only thing that helps me improve. my sleep hygiene is immaculate- I wear an eye mask, don’t go on my phone after 6pm, go to bed at 9pm every night and have the lights off for an hour before hand, I practice breathing techniques, I focus heavily on only thinking positive thoughts before bed so as not to stimulate my anxiety. I have diazepam to take in an emergency, but it makes me quite sick and again, I can’t exercise the next day if I’ve taken it so it’s no long term solution. i can’t wear earplugs because I stop breathing just as im about to fall asleep for some reason when I wearing them (as a side note if anyone knows why that happens please let me know) I have tried all different kinds of antidepressants, melatonin and antihistamines, herbal teas and valerian. The herbal stuff doesn’t work and I’ve had really bad reactions to all the meds I’ve tried. I’m on a waitlist to see a specialist (there aren’t many here in Australia) please help - it makes me so sad to be loosing so much progress. any advice would be great I just want some sleep 😔
  7. Hey guys, i have been recently diagnosed with pots and all of my symptoms are pretty typical to a potsy except for my inability to look at my phone (or any screen - tv, computer etc) for more than about 5 minutes at a time. I am currently bedridden and in need of entertainment so it sucks. If I do look at my phone I get a migraine/ disassociated/ dizzy and sometimes adrenal surges. Some days when I am having a good day I won’t get these symptoms when focusing on a screen but find that that night it disrupts my sleep (I already don’t sleep well but it makes it so much worse) and then the following day I’ll have a terrible pots day. Does anyone else get this? Any theories on why? I haven’t been able to find information on this anywhere darcy
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