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 😔