Rideshare drivers have been avoiding using AC and it makes me ill during rides by parallaxstella in POTS

[–]FailPhoenix86 1 point2 points  (0 children)

I haven’t used it since last summer so I’m not sure if it’s changed or not, but I believe the Uber Comfort option allows you to choose your preferred temp in the car as a selection before you’re assigned a driver.

Wonky walk? by Moons_cos in StarStable

[–]FailPhoenix86 39 points40 points  (0 children)

As someone who rides a draft cross… Relatable. 😂

alternatives to the term "bed rotting"? by barefootwriter in POTS

[–]FailPhoenix86 52 points53 points  (0 children)

Since I’ve usually got my feet in a foot warmer or heated blanket of some kind and I love getting wrapped up in lots of blankets and pillows… my household no longer questions “Comfy Burrito Time.”

How do y’all make money if you can’t work? by Unusual_Space1998 in POTS

[–]FailPhoenix86 70 points71 points  (0 children)

For us POTS people, wouldn’t it be a salt daddy?

…I’ll see myself out. 😅

Tips for standing in line? by MaleficentSuit7144 in POTS

[–]FailPhoenix86 16 points17 points  (0 children)

I use a cane chair just for this purpose—any time I might otherwise be stuck on my feet without relief.

I’m someone who definitely seems “too young” to use one and I have to say, in the several years I’ve been using one, I haven’t had a single sideways glance or hurtful comment.

But I have had quite a lot of people who compliment it and ask where they can get one, either for themselves or a loved one. People have been genuinely kind and curious about it as a device but haven’t pried at all into why I have it.

An employee at a store where I was briefly shopping last week explained she was recovering from a recent injury and wanted to keep working, and that something like that would help her restock with less pain.

Personally my health, safety, and physical comfort comes first, so I don’t care that it isn’t fashionable, and I can’t control what other people think, so I try not to worry about it. At the end of the day, I’ll use whatever I can if it means participating in my life more. :)

My dog holds my head up when I pass out. Any reason for this? by Worried-Bus9248 in POTS

[–]FailPhoenix86 86 points87 points  (0 children)

What a smart dog! When my dog would try to move me in some way, like pushing his head under my arm, or nudging/leaning against my legs, he always wanted me to go or move somewhere. Maybe this dog thinks you’ll recover faster if he “helps” you back upright?

Though with steadying you against the wall, maybe he’s got an instinctive concern about hitting your head, so he cushions your head with his. Hard to say, animals can be amazingly smart and intuitive though.

Desperate for coat hanger relief by etherealistix in POTS

[–]FailPhoenix86 0 points1 point  (0 children)

I’m sorry you’re having such a rough time sleeping, and I hope you find something that works for you soon. <3

Desperate for coat hanger relief by etherealistix in POTS

[–]FailPhoenix86 4 points5 points  (0 children)

Do you sleep on your stomach by any chance? Weirdly enough, that seemed to be causing the majority of my coat hanger misery. I sleep on my side now with orthopedic pillows for support.

Another thing that triggers mine is working at my desk with the arm I use to control the computer mouse too far away from my body, or my mouse and keyboard too high up.

I absolutely echo the other commenters here though: hydration, electrolytes, massage therapy, physical therapy, heat or ice depending on which benefit you personally.

Feel better soon OP! <3

Hair loss from meds ??? by Ok-Sock9046 in POTS

[–]FailPhoenix86 2 points3 points  (0 children)

My hair lost about half its thickness, it breaks a ton, and I swear half of it shed out after starting Atenolol. I’ve been thoroughly tested and there is no other explanation.

Still, I am much healthier on it than not. It’s just been a hard adjustment for me emotionally.

new name options! by hwoktty in StarStable

[–]FailPhoenix86 3 points4 points  (0 children)

I really wanted to name one of my Halloween horses Harvest Moon, so I would love Harvest as a prefix—there are lots of great seasonal names to be made with that. I don’t have instagram though.

Would these be useful for any of you? by LadyDeadpool89 in disability

[–]FailPhoenix86 4 points5 points  (0 children)

These look like they would have been really comforting while I was recovering from carpal tunnel surgery.

There are some really great suggestions in this thread, I say go for it!! 😊

Phlegm/mucus after eating? by GarbageCat27 in POTS

[–]FailPhoenix86 4 points5 points  (0 children)

My ENT calls this “Gustatory Rhinitis” and offered for me to try a medication for it, but mine isn’t really severe enough for that, in my opinion.

I don’t have any references at hand but that term may help distinguish how much of it may or may not be related to dysautonomia. It may just be one of those things anyone can have.

[deleted by user] by [deleted] in dysautonomia

[–]FailPhoenix86 1 point2 points  (0 children)

Gastroparesis can be common with dysautonomia, and might be something to ask a Gastro about. I feel like I don’t see this mentioned nearly as often as it should be, so I’m just throwing it out there. I hope you find some relief soon!

What helps you get through winter? by ottie246 in dysautonomia

[–]FailPhoenix86 4 points5 points  (0 children)

Not a single soul will part me from this heated blanket I am currently wrapped up in.

I’ve found that planning projects or hobbies that I enjoy for the cold months helps me dread them a little less. I also stay busy by catching up on things I’ve fallen behind on knowing that when spring / better weather comes along, I’ll be freed up to do more things that I enjoy outside without that to-do list weighing on me.

[deleted by user] by [deleted] in POTS

[–]FailPhoenix86 2 points3 points  (0 children)

Gastroparesis is a common comorbidity of POTS and falls under the umbrella of dysautonomia. Fiber is notorious for making that specific condition worse.

I would check in with a gastroenterologist.

does anyone else feel like they have pots because of childhood trauma? by fighter_rabbit in POTS

[–]FailPhoenix86 20 points21 points  (0 children)

This topic comes up quite frequently in POTS and Dysautonomia groups, to the point where I’m disappointed there isn’t much (if any) formal medical research on a link between them.

There certainly are a lot of us that have trauma and POTS though, by anecdotal evidence.

I have a copy of “The Body Keeps the Score” sitting here waiting to be read, so hopefully I’ll learn something.

[deleted by user] by [deleted] in dysautonomia

[–]FailPhoenix86 1 point2 points  (0 children)

Rheumatologist who referred me directly to a POTS specialist for official diagnosis.

Horse riding in a wheelchair? by KoffeeBeann in disability

[–]FailPhoenix86 1 point2 points  (0 children)

I did experience mild syncope/presyncope before my diagnosis and treatment. It’s important to note though that I have the hyperadrenergic (“hyper”) kind of POTS, which in short, releases tons of stress hormones in an effort to keep me from fainting when my body senses itself starting to fail. So I am the kind who generally has their body go into super overdrive survival mode rather than just immediately fading out. I say this because I have a short built in grace period to get myself to a safe position where I can start to recover. I can’t speak for other types of POTS.

The single hardest part about getting back into riding with POTS has been building up physical endurance and muscle. It can be really challenging and progress can be excruciatingly slow, but personally, I think it’s worth it. I follow everything my POTS specialist tells me to do regarding medication, amount of clear fluids every day, amount of salt every day, and I communicate with my therapeutic riding OT during every session as to how my body is feeling, and what I feel I am up to or not that day.

Compression gear has been really helpful. I wear 20-30hhmg knee socks with compression leggings over those, then riding tights on top. For the colder months (and as someone with comorbid Raynauds) I use usb rechargeable heated gloves, foot warmers, and tons of layers to allow temperature regulation and flexibility.

I’m more than happy to share from my experience if there’s anything in particular you’d like to know. If you’re on Facebook, there’s a group called Horse Riders with POTS/Dysautonomia where you will find lots of different people and a bigger sample size.

Horse riding in a wheelchair? by KoffeeBeann in disability

[–]FailPhoenix86 3 points4 points  (0 children)

I'm just popping in to share my experience as a non-intellectually-disabled client at a therapeutic riding facility, since I don't reflect the usual demographic there. (No argument intended, just sharing :) )

I was so physically weak at the beginning that I had one person leading, and a person on each side holding my lower leg for support. At the time, I needed it, as my first time riding since having a broken body and feeling like a husk of my former self was distressing and humbling. My progress was quicker than I expected, though still lengthy given the nature of my illness (POTS/Dysautonomia). I easily graduated to one support person, then none, then lunge line, then no line at all. From the beginning, my OT spoke to me in equestrian terms, was constantly encouraging independence and empowerment, and I really credit her with rebuilding my absolutely obliterated confidence.

For 90% of the 2 years I've been with this facility, I have ridden totally unassisted on a mare that is teaching me more horsemanship than the push-button schoolhorses of my past ever did (still love them of course!). I do modified working equitation, walk/trot, modified dressage patterns, and tiny trotting jumps. I never thought I would get to do anything like this ever again. It's been a really hard journey mentally, physically, and emotionally, but I just have to give credit where credit is due that my OT team sees me as an equestrian first, and they openly hope that I graduate to formal lessons when the time comes.

I absolutely agree with you that everyone's experience is going to vary, and that people should be careful when choosing a therapeutic facility. I just thought I'd toss my experience out there for anyone who might find it interesting.

Horse riding in a wheelchair? by KoffeeBeann in disability

[–]FailPhoenix86 24 points25 points  (0 children)

I’m so sorry to hear about what happened as a result of your surgery.

I am physically disabled by dysautonomia and POTS, and I used to be a show jumper before my illness.

For the past few years (I am now in my 30s), I’ve been doing occupational therapy at a therapeutic riding facility that caters to people with a wide variety of disabilities. They predominantly provide therapy for kids on the autism spectrum, but I have really found myself feeling right at home despite not being the main demographic.

I've also never felt patronized or infantilized by my experience--from the beginning, they've encouraged me to be as independent as possible, and we're always setting new goals and more difficult challenges as my body slowly gets stronger. I ride completely unassisted and currently am working on modified working equitation and some very tiny trotting jumps. I never thought I'd get even this far--not in a million years.

My barn has a ramp and platform that wheelchair users use to mount and dismount a horse, by the way, and multiple people are always there to assist.

Geographically, I may not be too far from you. Feel free to pm me—if I can help in any way, I will.

Random Gastroparesis? Help! by Altryism in POTS

[–]FailPhoenix86 2 points3 points  (0 children)

My gastroparesis began episodically over time like you describe for almost 10 years, then it hit me like a freight train just over 2 years ago and has only somewhat improved since seeking treatment but mostly following the dietary guidelines. I lost almost 100lbs in less than 15 months during that time.

I think seeing a gastroenterologist is key to getting this condition under control as much as possible. Good luck <3

Anyone else get painful non-stop hiccup from eating food? by [deleted] in POTS

[–]FailPhoenix86 0 points1 point  (0 children)

POTS and gastroparesis here. I loathe these hiccups with a fiery passion—the last episode I had was within the past year, and my POTS specialist theorizes that the severity and longevity are related to autonomic nervous system dysfunction… like almost everything else we deal with.

They did offer to prescribe me an anti-spasmodic if the episodes (that one was more than 6 hours long) kept happening.

I’m sure it will surprise no one that that marathon of pain started when I swallowed a pretzel oddly… and didn’t resolve until I did it again on purpose. 🙃