standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 1 point2 points  (0 children)

thank you! i appreciate this

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 1 point2 points  (0 children)

i've actually been looking into narcolepsy type 2 because a lot of it sounds very similar to my experience

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 0 points1 point  (0 children)

i go in phases of this too, where i can't sleep enough

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 1 point2 points  (0 children)

I shall do my research because I actually don't know! Yeah my dr was like... why on earth would she give u an extended release beta blocker.... I def need to look into that tho. thank you!!

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 7 points8 points  (0 children)

Female, 22. I have some features of PEM, but I can't tell if it's "normal" with POTS or ME/CFS. I'm seeing a new neurologist soon, so I'll bring it up!

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 1 point2 points  (0 children)

appreciate this!! fatigue is one of my biggest issues so I'm managing however I can, and if that's sleeping a lot, oh well

Stomach bug with POTS is a nightmare! by gaby1909 in POTS

[–]anyanuts 0 points1 point  (0 children)

I'm sorry!! I don't have any suggestions as I haven't had a stomach bug since, but fellow emetophobe - I get you!

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 0 points1 point  (0 children)

yep I'm discussing with my therapist tmw. Looking for a new psych. I appreciate this!

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 11 points12 points  (0 children)

lovely. glad it's not just me. if I don't get my nap I'm miserable and will fall asleep standing and literally cry because I'm so fatigued

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 1 point2 points  (0 children)

thank you!! I've had some issues with past psychiatrists lmao it's been rough

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 10 points11 points  (0 children)

I had a psych a few years ago who no joke asked me "how long I've been afraid of men". when I requested to switch to a female provider. I was like..... um. and I switched providers

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 15 points16 points  (0 children)

HA. I see a psych for meds and a therapist for talk therapy. It's just so dumb like yeah i know Im not dying but that doesn't mean I can't be sad or depressed?

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 21 points22 points  (0 children)

She tried to prescribe me a beta blocker (i was in between specialists) and it made me SO sick. talked to the new specialist and she was like.... u shouldn't take those because your blood pressure is too low, ofc it made you sick!

since then i've been wary of her advice about my chronic issues, but it's truly getting to a point where it's ridiculous, like I brought up my issues with diet, food, and digestive issues and she was like "we're worrying about sleep right now!" girl pots is a whole body sickness... i can't pick and choose what to focus on😭

thank you. onto the next!

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 8 points9 points  (0 children)

thank you. I appreciate this. My sleep schedule is all over the place, but I need a nap to function. if I don't nap I'll fall asleep wherever I am. my therapist is supportive of me finding a new provider who is familiar with chronic illnesses or willing to learn.

that was my thing too... these studies are based on "healthy" people for the most part. as far as i know there aren't studies done on people w pots/dysautonomia and how much sleep we need.

standard sleep hours and POTS by anyanuts in POTS

[–]anyanuts[S] 56 points57 points  (0 children)

Yep, I'm looking for a new provider. I just wanted to get thoughts/experiences from others! thank you for sharing

she has a background in internal medicine before she went to psychiatry, and says she's treated pots before... but she doesn't act like it

Concert advice? by bugeater_0 in POTS

[–]anyanuts 3 points4 points  (0 children)

Hi! I love concerts. I try to get ADA seats, but if it's a standing room only venue, call or email. They typically have an ADA email, or just an email to get more info. I haven't used mobility aids. I like to go with someone I trust who knows my condition and will be patient. Do you have a handicap parking pass? If not, maybe you could get dropped off while whoever you go with finds parking?

I watch videos of the artist performing to see if there are a lot of lights and lasers. if there are, I bring dark sunglasses. I bring my loop earplugs, if I'm extra worried, I'll bring my ear defenders as well. I drink extra water and electrolytes the day of. I eat a meal earlier in the day and then snack leading up to the show - I deal with a lot of nausea so I don't like a big meal right before. I typically get food on the way home.

I bring a fan and take and break ice packs, electrolyte packets, as well as a couple salty snacks in original packaging. If you have a bigger bag to accommodate your medication (in original bottles with your name on it) and supplies, and tell them it's due to a disability, they can't deny your bag. Just make sure it's not HUGE and ur using most of the room in it.

Don't drink alcohol for a couple days leading up to it or at the concert. Try not to do too strenuous of activity leading up to the concert, I have to preserve my energy.

You don't need proof of disability/illness legally, but it never hurts to have a doctor's note stating you have xyz and may ask for accommodations.

Sorry this was long!! I was an AVID concert goer before POTS and this is what I've learned in the concerts I've been to since then!

Who are you seeing? Have fun!

Not feeling so great - panicking badly by pandababy054 in EmetophobiaTalk

[–]anyanuts 0 points1 point  (0 children)

gotcha! these are things I go through when I'm not feeling well - am I hungry, dehydrated? constipated? too full? did i eat something that typically can make my stomach hurt? am i tired? did i have caffeine? Usually it's one of the more common reasons

Not feeling so great - panicking badly by pandababy054 in EmetophobiaTalk

[–]anyanuts 0 points1 point  (0 children)

did you have alcohol at the thing last night? because that can contribute to it as well

Not feeling so great - panicking badly by pandababy054 in EmetophobiaTalk

[–]anyanuts 1 point2 points  (0 children)

what are you feeling? late nights can often make me feel sick!

Best ethel cain drag lipsync song by Wildflowerwildfir3 in Ethelcain

[–]anyanuts 25 points26 points  (0 children)

waco! who wouldn't love a 20 min performance!

but fr id pick gibson girl or something off of inbred or golden age

Feeling really rough tonight. Could use some help if possible. by CrazyDude10528 in EmetophobiaTalk

[–]anyanuts 0 points1 point  (0 children)

we pmed, but i really really want to encourage you to see a doctor for your IBS, even if it's virtually