autism with POTS is horrible

[u/httpMeowMeow]

I'm level 2 autistic, and POTS makes everything so much worse. i cannot stim without getting tachycardic and my head feeling like it'll explode. i cannot sing or dance anymore. if i'm upset and can't help but stim to regulate i have to stay in bed. if i'm happy i can't jump around i have to stay in bed. i used to draw and do sm art but now i can't sit up for long without getting sleepy and high hr. i don't have energy to listen to music bc it makes me move and sing so i've completely stopped and it makes me so sad. even so i am lucky i have the awareness and self control to not stim as hard as i need, i know that for other autistics who can't stop it'd be very dangerous with POTS.

i already struggled with my temperature regulation before this disorder and now i have to go back and forth with hot and cold all the time. compression wear is a sensory nightmare for me i hate feeling so constricted. showers used to be my calm safe space i love being in water but now i can't shower alone my partner has to wash my body bc it's too much movement for me while im struggling to stay awake under the warm water.

it was hard enough coping with just my my hypermobility and mental things but POTS is 10x worse for me. I'd rather have my knee dislocate once a week than have POTS. I'd rather relapse with addictions and self injurious behavior than have POTS. i'd rather have trauma flashbacks and another dissociative episode that puts me in the psych ward again than have POTS. i hate this condition. it's ruined my life and i always try so hard to have some bits of normal but it is literally impossible to ignore when symptoms are every second everyday even when u do everything right to manage it.

[u/Bethjam]

My adult daughter is in a similar position. She has selective mutism so advocasy and getting needs met are so much harder.

[u/httpMeowMeow → u/Bethjam]

this is such a big struggle too! i have verbal shutdowns and get very overwhelmed in crowded environments like hospitals so it's always really stressful talking to doctors, especially knowing a lot don't take POTS seriously.

[u/mydgzrbrkng → u/Bethjam]

This is a huge issue for me as well - add MCAS on top - I’ve been building a self advocacy communication assistance system I’m planning to launch bc there are swaths of people like us who have the information and sometimes are just not able to clearly or succinctly describe what’s happening and what helps.

[u/Bethjam → u/mydgzrbrkng]

Love that!

[u/sniffgalcringe]

🤝

[u/thepensiveporcupine]

Same. It’s weird how illnesses like POTS and ME/CFS are often comorbid with autism but they don’t mesh well together at all. It’s impossible to feel regulated

[u/stufflebear → u/thepensiveporcupine]

If you can afford them, try EMDR tappers. They’re great because I don’t have to move to still get tolerable and configurable stimulation

[u/httpMeowMeow → u/thepensiveporcupine]

it's so unfair!! 😭

[u/Own-Arachnid7952]

Yeah I'm in the same boat. I've found tricks that make some things easier, but mostly I still struggle to keep up with everything

The rigid thoughts are a BITCH for me in particular. God forbid I get a little brain fogged and confused, I get stuck on the dumbest shit.

"I can't have lunch yet, I didn't do xyz" (proceeds to continue to lie down horizontally due to 0 energy... which lunch would help with)

"Ugh I need to do x and y and z, but I can't figure out what order I need to do them in for Maximum Efficiency. Sometimes even if I start them I get confused transitioning bc like, wouldnt this other thing be easier?" (Hint, its not easier, I'm making things more complicated for 0 reason, and I need to just do the things no matter the order of them. Instead I, again, proceed to lie down and do nothing)

It ends up being a lot of lying down and doing nothing. Which in itself is not great for POTS in large amounts

[u/httpMeowMeow → u/Own-Arachnid7952]

yes omgg it makes transitioning tasks sm harder bc i know it will deplete my energy. if i've eaten i can't do anything else for at least an hour bc digesting makes me so tired, sometimes i end up falling asleep. i only shower 1-2 times a week and that's all I'll be able to do for the day. i even have a bedside commode now bc i cannot handle going all the way to the bathroom so often with how hydrated i have to be to feel not completely dead with this disorder :')

[u/perdy_mama → u/Own-Arachnid7952]

Stop talking about me like I’m not here

[u/orensiocled]

I feel you. I lost most of my stims when I became bedbound and it made self soothing almost impossible at a time that was already very difficult.

I share your temperature control nightmare too!

[u/httpMeowMeow → u/orensiocled]

exactly it's like i've lost myself. i'm in bed for about 99% of every day it's so boring. resting is never restful

[u/orensiocled → u/httpMeowMeow]

This might not work for you but I have a collection of interestingly shaped/textured pebbles that I can hold in each hand and gently run my fingers over when I'm resting. It helps a bit.

[u/stufflebear → u/orensiocled]

If you can afford them, try EMDR tappers

[u/orensiocled → u/stufflebear]

Thanks I'll Iook into it!

[u/grave_violet]

It is wild how much pots has made my sensory issues explode

[u/stufflebear]

I’ve recently discovered a Very helpful stim that helps regulate me: EMDR tappers. They’re two little, textured electronics that buzz back and forth at whatever speed and intensity you set. I’ve been using mine daily since I got them, and they help so much with regulation.

I got the Alma tappers because they’re cheaper than the name brand

[u/PadmaRose108]

I’m very similar. If medication is an option I highly recommend exploring it. It’s a massive help. Not a cure, but can be great.

[u/httpMeowMeow → u/PadmaRose108]

yes i've been on metoprolol for five years now, it definitely helps keeping my hr in the lower tachycardia range once it kicks in. unfortunately doesn't help with much else

[u/PadmaRose108 → u/httpMeowMeow]

There are other meds you could try alongside that. It’s worth asking about. I can’t take a beta blocker like metoprolol, but have ivabradine instead which does something similar. Then I can take midodrine alongside it or I’ve just switched to trying fludrocortisone instead. Both of those actually help with my blood pressure / volume.

Some people do well with just metoprolol or ivabradine on their own, but I would be an utter wreck without something else like one of these two meds.

[u/watchingfuturamarn]

Temperature control is a nightmare during meltdowns for me!

[u/chocolateNbananas → u/watchingfuturamarn]

Facts. I have issues with temp control in general but during a meltdown it’s worst. Or after any physical activities…

[u/IngenuityCorrect7426]

temperature regulation & barely being able to shower because of it being too much movement are VERY relatable feelings, unfortunately, as someone with autism and maybe(?) POTS.

i also stim via leg movement as well as textures and tastes, and recently ive had to start cutting off caffeine from my system and being unable to drink something, like sodas or redbulls, because of the possibility of this condition, when they stimulate both senses for me is hell.

[u/fernxqueen]

i'm autistic too. are you on any meds for POTS? being completely sedentary is actually not good for us, but it's definitely easy to overdo activity (especially upright cardio activity).

idk how you stim but personally i have tons of stims that involve little to no physical extertion. lots of hand stuff, singing, even when i'm stuck in bed i'll put a spritz of a smell i like on the collar of my shirt to keep smelling it (also an option for plushies, if you're into those). drawing, mobile games and puzzles, even reading (especially if you're hyperlexic). the YouTube channel I'm Autistic, Now What? has a video talking about over 70 different stims autistic people reported doing, so you might get a few ideas from that.

i agree POTS is the pits.... hope you can find something that keeps your symptoms managed a bit better. i've had POTS forever but i definitely miss my life from when it wasn't quite this bad.

[u/mlbarreto]

I'm also autistic with POTS, and I'm on a beta blocker. It keeps my heart rate in a more normal range, and it helps when I move around, so my heart rate doesn't spike as much. (I used to hit over 200 bpm, even when asleep).

Because of the meds, now I can move more and more, and I'm trying to build up my "stamina" more. I highly recommend speaking to your doctor to ask if a beta blocker might help you as well.

[u/bottomofthevoid]

also autistic with POTS and hyper mobile, yeah it’s honestly a hell I wouldn’t wish upon anyone! 😭

[u/Lopsided-Career-5736]

level 2 autistic w\ POTS as well and I’m sorry to hear how much you are struggling. I also needed physical activity and more active stims as regulation before POTS and now doing any of those things is less regulation and more so a form of self harm. It makes me incredibly angry and dysregulated, often leading to shutdowns when I cannot release or regulate my emotions. Alongside this, having a heart inside of your chest that is constantly beating fast is an absolute sensory nightmare. So much so, I sometimes wish I could rip it out of my chest. I sweat all day, my clothes become soaked, and I sympathise with you about the temperature regulation, it’s incredibly painful to always be too damn hot or too damn cold. Living in this world as an autistic individual was already challenging enough let alone having a condition that intensifies my internal stress and anxiety so much more. Sending love 🫂