u/sololloro

so I've been doing the exercises for just over a week and honestly, the biggest improvement I've noticed is something I didn't even realize could be a symptom.

I don't know how long it had been going on for, but I was having this thing where, when I would drive, look at a computer screen, etc. it would feel like one of my eyes would kinda get tired, drift off, and cause my vision to go blurry. it didn't super bother me, it didn't get me into trouble, and I could re-focus it if I needed to.

but after about a week of vestibular therapy ... that stopped?! now when I'm driving, my eyes are focused the whole time and it was trippy at first, like I would get overstimulated and be seeing TOO many details. and now I'm just used to it.

I didn't even really think about it, or know it was a symptom, until it improved! crazy.

anyone else have that symptom?

man what a long road it's been. I first started having symptoms literally a year ago, not to the date but some time in September.

the VNG test I had in February showed 41% left inner ear balance organ weakness.

during my initial vestibular therapy visit on Wednesday, she ran a similar test which showed nystagmus and tracking issues while moving my eyes side to side and while moving my eyes and my head side to side.

the vestibular therapist I'm working with was the first person I described my symptoms to who didn't just say, "oh, that's weird!" lmao. I could've cried.

because really my only issue is being in wide open spaces. I can't just lie in the grass and look up at the sky without feeling like I'm gonna get sucked into it. recently, I was in a sports field watching a performance and had to wear a baseball cap or else I would start to feel like gravity was no longer holding me down. I get that same feeling on the beach, and anywhere where there just aren't enough trees to visually anchor myself.

and I don't know anyone else whose symptoms manifest exactly the same way, so I kind of have impostor syndrome about it? luckily, I've never had true vertigo. I can pretty much ignore my symptoms unless I'm under a wide open sky. but also, I feel like my condition is causing me to avoid that scenario, which really does suck. I miss the beach.

I'm really hoping vestibular therapy will help me recalibrate my brain. I've only been doing it for a few days, and it's for sure made me dizzier / more unstable in the hours after doing it. but that means it's working, right?

hope y'all are having a great and balanced day 💕

it seems there are only 2 contests to enter. is it ending or something?

I've been going by my current name since 2015, finally got it legally changed in 2023, and it's rare - but it does happen - that people ask me what my name was before.

honestly, my deadname is even a stronger source of dysphoria than getting misgendered, so I kind of freeze in conversation.

sometimes I just tell people "it was one of the most common names in the 90s" and let them guess. nobody has guessed it, surprisingly!

but I'm trying to think of other things to say. I understand the curiosity, but I don't want that name to be contained within the folder they have about me in their minds.

if someone is really persistent, should I just lie?

should I lie differently every time?

should I let them guess and then pick a random one like, "that's it!" just to fuck with people?

or should I tell them it was something awful like McZayleigh so that they'll just say "ohh, I see why you changed it"

(people's normal response to my deadname is "oh but that's so pretty! why did you change it???" and that becomes a whole obnoxious thing)

what are y'all doing about this?

I don't want to be too serious, but I do wish people would stop, yanno

I've had POTS symptoms since my teenage years: unable to tolerate heat, occasionally feeling like I was going to pass out, heart palpitations (which everyone told me were from "anxiety"), and more I can't think of.

I'm now 36. was finally diagnosed at 34, partly because I had the resources (most importantly, a doctor who took me seriousl!), but partly because it was getting to the point where I couldn't ignore it anymore.

yesterday, I had 2 different social events and apparently today I'm crashing from that. exhausted, unmotivated, lost my appetite, had to lie down in a booth at lunch because I was getting lightheaded and clammy.

I'm already looking forward to a 2-day festival that happens in my city in October and reminiscing about how I used to go for both days, which included marching both days, and I was relatively fine afterwards. now, especially this weekend, I can't fathom being able to pull that off.

in some ways, I feel like my health has gotten way better since being properly medicated and adjusting my lifestyle. but in a lot of ways I think it's gotten worse in my 30s than ever before.

is that a common experience?

hello fellow POTSheads!

I recently celebrated one year on ivabradine. that stuff has changed my life!

I noticed something interesting and I'm not sure if this is a "side effect" or not. I live in the south and mosquitos are rampant this time of year. I used to get absolutely chewed up, like if there was one mosquito it would seek me out, specifically.

but last night I was outside with friends. one of my friends was like "hey, can we go inside? the mosquitoes are eating me alive."

and then I realized: that doesn't really happen to me anymore.

could it be from the lower heart rate? from ivabradine itself? I'm really curious if anyone else has noticed this

diagnosed since October 2024, symptoms since my teenage years. I think my case of POTS is relatively mild, but some days are better than others.

today, there was a meeting at work. the meeting room only has like 10 spots to sit and there are like 30 or 40 employees, so I usually rush to get there and get a seat, but today, all of the comfy seats were taken, so I decided to do an experiment.

(note: if you have a more severe version, don't do this. shit, maybe even I shouldn't have done this. I'm not recommending or condoning my actions and don't plan to do it again)

I stood there, leaning against a column, and tried to really focus on my symptoms. usually when I'm standing, all I can think is, "I feel like shit and want to sit down," but I wanted to really pinpoint *in what ways* I felt like shit, so I made a note of all the individual shitty things I felt. that list is:

- feeling hot. it was hot in the room but I felt cooler when I sat down

• I could see my pulse
• towards the end, the room started to look brighter. it was already uncomfortably bright, which I think was part of the problem
• I generally felt like gravity was weighing heavily on me
• my hands and knees started to swell
• I kind of felt like I was melting, like it was getting harder and harder to hold myself up to stand up straight
• I just kept thinking "I need to sit down"
• I lost my brain power. I was incapable of trying to keep up with the meeting
• when I spoke, it came out even quieter than usual
• finally, the thought came to me "I'm gonna pass out," at which case (edit: i meant point wtf brain fog) I relented and went and sat on basically a shelf, lol. I lasted about half an hour

(I've never actually fainted, just come close, and I managed to sit down before it was gonna get close.)

I'm on ivabradine and because of that, my heart rate maxed out at like 82, but it *felt* faster / stronger.

does anyone else experience this the same way?

P.S. oddly, I love going to concerts. my favorite venues have chairs but in ones that don't, I'm able to walk around enough that it still doesn't feel *great* but it's better than just. Standing There. also I do better in dimmer lighting.

also standing during or right after walking is way easier than just going cold from sitting to standing. warm up, I guess?

I'm nonbinary, but afab, so I suppose this is typically seen as a "women's health" issue and I have no idea where else to turn.

I was taking Yaz for birth control for years and generally liked it, but due to regular dysphoria and PMDD I was taking it continuously to avoid bleeding. it would work really well for about 2 months and then, like clockwork, my body would start turning the gears and I'd get a migraine, cramping, everything to suggest that despite my best efforts my body really wanted to bleed.

late May, I started to have that feeling along with spotting, just enough blood to see when I wipe but not enough to stain my underwear. it's now the end of July and I'm still having that spotting every. fucking. day. it's usually brownish. sometimes it's barely anything. sometimes it's bright ass red. and sometimes it does indeed stain my underwear now. the intermittent nature of it is what's confusing to me. I'll think I'm doing better and then, bam! red blood.

my doctor ordered an ultrasound and I got it July 19th. still haven't gotten the results. I emailed my doctor and he said that, although radiology is dragging their asses, he had a chance to look at it and said he "couldn't find the cause of the bleeding" and wants me to get a sonohysterogram in case it's polyps.

this is kind of a plot twist because I've had ovarian cysts before, and this feels like that: pain in my lower abdomen (both sides, tender to the touch), the spotting, all of it.

I'm terrified of getting surgery but fully prepared to if this requires it. I just want it to be over. every day I feel like my body is mocking me. like, "oh, you thought it was over? think again!"

I'm crashing out. has anyone *ever* experienced this before and does it *ever* get better?!

thank you 💕

hello everyone! I know a lot of us are taking corlanor/ivabradine and I leaned today that a specific brand, Amgen, has been recalled. you can find out more here:

https://www.eatingwell.com/heart-kidney-medication-recalled-nationwide-12007424

hello everyone!

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ever since I was diagnosed with POTS in 2024, I've been aware that some days are worse than others. not sleeping enough will give me a flare-up most of the time, as will not eating early enough and being dehydrated. but the strangest pattern I've noticed is that I usually have a flare-up on Fridays. I'll wake up, my head will feel weird, my heart will feel jumpy, and I'll be a little dizzy and - sure enough, when I check my HR while sitting and then standing, it goes up 30bpm or more.

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it's just so interesting to me that it's that consistent. I had my tilt table test on a Friday and now I feel super lucky that it coincided with the day of the week I tend to be most symptomatic, lol.

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anyone else tend to flare up on certain days of the week?

hello, fellow people with vestibular issues! I finally know for a fact that I'm one of you!

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basically last year my allergies were majorly set off, which caused sinus inflammation and eustachian tube dysfunction. I got sick every other week or so, a cycle which I finally broke by religiously using sinus rinses. but my weird vestibular symptoms continued.

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my most specific symptom is that, if I'm in a wide open space - like lying down in a field, or an empty beach - my brain seems to think I'm floating into the sky. it's terrifying. I also drift quite a bit when I walk, apparently :')

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and today I had my VNG test. I wasn't sure what to expect or what would come out of it. I actually postponed it and wasn't sure if I was going to go through with it, but I'm so glad I did. I finally have answers!

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apparently the balance organs in my left inner ear are 41% weak. that explains so much!

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I'm gonna start vestibular therapy soon. in the meantime, I'm just reeling at finally, FINALLY having a name for what's been plaguing me this whole time

hello, TOMTers! I've had this song stuck in my head for days but I don't remember the name of it. it's old; it was one of the songs programmed into a kids' keyboard I had in the 90s. maybe a folk song or something? I've attached a vocaroo of me na-na-naing it, lol. please help me identify

https://voca.ro/163lI7MvrXuB

hello fellow bendy folk!

so one of my first symptoms was, as a kid, my kneecaps would snap out of place. I'd just be doing regular kid stuff: running, walking, playing - and suddenly I would be on the ground, in pain. turns out my kneecaps were popping all the way over to the side of my leg and then back into place.

luckily, it stopped being as violent at some point in my late 20s and lately, the worst knee thing I get is that sometimes my knees aren't quite tracking right, which I'll notice when walking down the stairs. I'm relieved, don't get me wrong; but also, I haven't been working those muscles out so idk why the change happened. I'm 36, so maybe age?

what I'm wondering is:

- is what I experienced more accurately described as a subluxation or a dislocation? the orthopedist I saw as a kid called them "subluxations," but now I'm not so sure.

- why would it get better spontaneously? I'm still in pain every day but at least my kneecaps aren't fucking off anymore

- anyone else experience this?

thank you all 💕

I've been learning Spanish for a huge chunk of my life. for years, I thought I was rolling my r's correctly because nobody stopped or corrected me, but I realized recently that I'm making the "rolling" sound from the back of my throat, not with my tongue.

I can do a single flap r correctly, but my tongue refuses to drag it out and I'm so annoyed with myself, lol. I wish I'd caught this earlier and maybe I could've learned the proper way to do it.

or also ... maybe it's not as bad as I'm imagining? can native Spanish speakers tell when someone is rolling their r's wrong, does it sound super weird and not understandable?

gracias 🙏🏻