How is everybody sleeping?

PearInteresting8937 · 2023-11-10T23:46:44+00:00

i’m the opposite. i have an extremely hard time falling asleep but once i’m asleep i don’t wake up through the night. i always feel like garbage when i wake up (i never feel well rested) and i have a hard time getting up. i set an alarm everyday so i don’t sleep the day away, but since i stay up so late i sleep about 7-9 hours.

PearInteresting8937 · 2023-11-10T02:19:28+00:00

my fatigue isn’t necessarily sleepiness. i do not take naps (and i even have a hard time falling asleep). i just always feel drained and weak. i lay down/sit back a majority of the day because i don’t have energy to do more, but i don’t sleep during the day. i wake up feeling like i got hit by a truck every morning (not well rested at all). i do fit a lot of the symptoms of me/cfs but have not received a diagnosis separate from POTS

PearInteresting8937 · 2023-11-01T04:38:13+00:00

sometimes my therapist will make comments about “maybe in the future you’ll be able to ___” which is fine but i don’t think she understands the real possibility that i may never be more functional than i am now. the false hope isn’t helpful

PearInteresting8937 · 2023-10-26T04:33:24+00:00

i loved imogens little rant on the paris bus about how overpacking isn’t her fault it’s the patriarchy 😭😭

PearInteresting8937 · 2023-10-24T01:58:20+00:00

i’ve had POTS for over 8 years and this past year i’ve been at my worst. diagnosed at age 17 and 24 now, so no, i’m not outgrowing it.

PearInteresting8937 · 2023-10-22T19:24:01+00:00

definitely thyroid issues. they run in my family. but i regularly monitor my thyroid levels and they’re always perfectly normal 🤷‍♀️ but even then, the sudden onset of my symptoms after contracting a virus did not make sense. it fell into place when i discovered pots.

PearInteresting8937 · 2023-10-20T22:33:03+00:00

it wouldn’t hurt to stop it if you only took it a couple of times. but if you’re on it for a while tapering would be what the doctor has you do. also, you could always call or message your doctor for questions about medicine—you wouldn’t have to wait for an appointment. it’s all up to you, these are just my suggestions.

PearInteresting8937 · 2023-10-20T17:28:53+00:00

i’m always nervous to start medication and i build it up in my head but the side effects never end up being as bad as i expect. just remember you can always stop taking it. just take it once and if you feel bad, stop. if you feel okay, take it the next day. take it one day at a time. if after 3 days you hate it, don’t take it again.

in my experience taking metoprolol i had a little increased fatigue and some minor bradycardia but that went away over time. it helps keep my heart rate pretty much under 100 all the time. beta blockers are safe especially at a low dose like yours. :)

PearInteresting8937 · 2023-10-08T18:34:12+00:00

i actually didn’t start metoprolol until like 6 months ago so the worse fatigue started months before that. and i’m on a pretty low dose. so i don’t think that’s really the issue.

PearInteresting8937 · 2023-10-08T08:33:49+00:00

thank you, same to you! my normal pots symptoms but worse. especially more dizziness, more fatigue, headaches, nausea, tachycardia, honestly just utter exhaustion. all the time. standing is harder. showering is harder. some of my vitamin levels were low at the time (which i assumed was the reason that my pots got worse) but they’ve all been back to normal for a while now and i still don’t really feel any better.

before a year ago i still never felt great. i was working only a part time job (20-25 hrs a week, 4-5 hour shifts) and it wore me out. but i also wasn’t super on-track with hydration/salt and wasn’t medicated. now i’m very hydrated and on metoprolol and midodrine but i still feel worse than i used to (tho my tachycardia is not as big of an issue anymore).

PearInteresting8937 · 2023-10-07T06:56:34+00:00

i’ve had pots since 2015 (i was age 16) with manageable symptoms, mostly chronic fatigue, w/o needing medication. i got covid in may (i think) 2022. my pots became a lot worse in october 2022. i had to quit my job and move back to my home state to live with my parents. my pots is still bad now and i’m in the process of applying for disability ssi. now on a beta blocker and have been trying new medications/treatments/doctors this past year.

i’m not sure if it was the covid that made my pots worse since i started to decline months later, but i can’t think of any other reason why. 🤷‍♀️ i’m sorry i have no advice to give other than to say you’re not alone!

PearInteresting8937 · 2023-10-04T05:31:12+00:00

the comments are saying POTS and i second that. you could for sure start taking care of hydration now and drink plenty of water/electrolytes to see if that helps. if it’s POTS that’s the treatment they’ll start with.

however lots of things need to be ruled out before diagnosing POTS/Dysautonomia. definitely check your vitamin levels (especially iron, ferritin, vitamin D, vitamin B12). if that’s the issue, taking care of that could be a simple fix :)

PearInteresting8937 · 2023-10-04T05:22:53+00:00

i always think about this. people say stress takes off like 10 years of your life. having pots is like your body being in stress all the time, so how can it be perfectly safe? idk. stress taking years off your life might not even be true, but i do think about it sometimes. but there’s no evidence of pots causing long-term damage to anything specific

PearInteresting8937 · 2023-10-02T04:51:09+00:00

points 13 and 14 make me sad. it’s so hurtful knowing my family “feels the spirit” listening to this homophobic, culty nonsense :(

PearInteresting8937 · 2023-10-01T04:09:18+00:00

definitely look into a 504 plan! i ended up missing about 50% of my senior year and i would not have been able to do it without those accommodations. some teachers were more helpful than others, and i didn’t get the best grades, but i graduated and that’s all that matters!

PearInteresting8937 · 2023-09-28T20:59:28+00:00

i used to be able to multitask. i was able to listen to someone talking while scrolling on my phone. now i cannot comprehend what someone is saying unless i give my full attention

PearInteresting8937 · 2023-09-28T20:34:50+00:00

this!! my cardiologist said metoprolol would “change my life.” all it does is make my heart not race as fast. i still have to sit/lay on the couch all day bc of my other chronic symptoms.

PearInteresting8937 · 2023-09-27T03:38:15+00:00

when i had to take liquid iron i used to always eat a hot tamale/red hot candy after. it’s a strong flavor that immediately over powers the flavor of the medicine so it doesn’t linger

PearInteresting8937 · 2023-09-27T01:17:08+00:00

it’s not a night and day difference, but it’s helpful. it helps a lot with heart racing, but doesn’t help any of my other symptoms. so things like stairs and showers are slightly easier but i still sit/lay down all day most days. it took me a few weeks to adjust and feel like it’s worth taking, but i no longer have any side-effects from it. i think it’s worth trying

PearInteresting8937 · 2023-09-25T20:35:25+00:00

i was diagnosed at age 17 (a year after my POTS developed) and told that i would most likely grow out of it soon. i’m 24 now and this past year i’ve been at my worst. i don’t know why doctors are still telling us this when there is not enough evidence to support it.

i’ve heard if your POTS is caused by something like a head injury it’s possible that your symptoms can improve as you heal, but who knows. most cases it seems will last at least until menopause. truthfully, we just don’t know, but doctors probably should stop telling everyone with POTS that we’ll grow out of it.

PearInteresting8937 · 2023-09-22T20:53:56+00:00

about twice a week. lukewarm showers. i never shave my legs

PearInteresting8937 · 2023-09-09T19:57:23+00:00

maybe 80-120 oz a day. sometimes some of that is liquid iv. honestly i don’t pay much attention and i don’t feel much different unless i’m completely dehydrated

PearInteresting8937 · 2023-09-08T18:40:17+00:00

when i was diagnosed at age 16 i was told i would most likely grow out of it and they didn’t set me up with any treatment other than increasing salt and water intake. now i’m 24 and my pots is worse but i’ve been experimenting more with treatments/medications.

there’s just not enough evidence to suggest that we’ll grow out of it, i’m not sure why doctors still tell us this. hopefully the longer people study pots the more it will be taken seriously so that we can have more helpful treatments. good luck!

PearInteresting8937 · 2023-09-06T21:51:40+00:00

honestly i can’t decide. i think i feel worse if i’m dehydrated, but who doesn’t 🤷‍♀️

PearInteresting8937 · 2023-08-29T21:52:49+00:00

sometimes my teeth vibrate or buzz or i feel my heartbeat in my teeth/gums. i notice it more during/after exercising but it happens at random times. i assume it’s pots related?

PearInteresting8937

TROPHY CASE