Signs You Grew Up With Dysautonomia

The Mighty community shares signs that they grew up with dysautonomia.

@TheMightySite

[elsagrace]

Severe dysautonomia is obvious but there are those of us that suffer with a lesser degree and so are told it’s all in our heads. I think that’s worse.

[Hannah]

'Thinking I'd counted my heart rate wrong' brought back memories in high school! :O I forgot about that.

[cochiefemeralds]

For me it was the following:

- I would asked to be carried because my legs and feet felt too heavy and they would hurt if I did walk and stand for any length of time when I was very little

- standing and walking for long periods of time still affect me even though I’m 28 years old

- I would sleep and sleep and sleep constantly only to now realized I’ve been experiencing syncope

- dad always said that I always had a very high resting heart rate growing up

- I overheat easily and I could turn red sometimes

- my feet and knees get swollen but the new fluid is the part that swells inside so the outside is not noticeable.

- even when I was skinny and never been chubby in my childhood and never had weight issues at the time, I was always short of breath and constantly fatiguing and I was always thirsty

- doing chores especially very simple things like putting something in the washer was a challenge and still is

- and I depressants and antipsychotics would always make it worse because everybody kept saying I was depressed and have anxiety or going through something and that I would outgrow it by the time I hit 18 years old or reached my 20s

- PE teachers pushed me way too hard especially during the fitness gram pacer test and sit ups and push-ups which are a complete nightmare and just setting me up for failure

- I was just told that I had to pick up the pace and not to be too lazy and that I needed to lose weight and go on a diet and hard exercise

- I now require a wheelchair because I will get too dizzy in public and I don’t even own a walker. I would use the drivable shopping carts in the stores whenever I feel very bad

[crofregernish]

I totally relate, but this is specifically POTS and not dysautonomia in general.

[quinn]

My mom used to get mad at me for pouring salt over tortilla chips and then I would eat the excess salt out of the bottom of the bowl lol. I also loved hanging upside down off the couch bed monkey bars whatever. But the kicker was how my docs thought it was totally normal I would get super dizzy every time after using the restroom or stand up. Just dehydrated. Yup. Mhm. Tell that to the ten empty bottles of Gatorade

[hollycokkinias]

Great video! While there are a couple things in the video that weren't really me, most of it definitely was/is. Sadly, it took me countless Dr's and 35 years to figure out what was really going on. This is not an easy condition. I truly wish there were more research and that it would be taken more seriously. Though it may not be lethal....it can be debilitating.

[foursevnnn]

I have had severe dysautonomia my whole life and a lot of the things mentioned in the video I didn’t deal with. I guess some symptoms are more prominent in others.

[celestialss]

I'm 12 years old and I have P.O.T.S., dysautonomia, and mast cell activation. I've been in bed, in and out of hospitals for months. I can't recall the last time I went to school. My cousin went through all of the things I went through. Which I was lucky about because my mom and I knew what was going on. I'm starting the medication that helps my cousin a lot and it's helping. Basically, if I stand up and walk more than 3 feet I feel dizzy. I also have horrible stomach symptoms. I'm always nauseous, have horrible pain in my stomach, and vomit a ton. With the mast cell activation if there's a smell in the room I might vomit, become red and itchy all over, or feel extremely nauseous. If I ever went to bath and body works I would literally stop breathing. I have horrible headaches too. On a daily basis my heartrate goes from 30 to 180. It's horrible. This is not at all what dysautonomia is. This video is beyond stupid.

[fujoshipeanut]

I relate to quite a few of these but the thermal one... 🤣🤣🤣 Omg that is just me personified. I've been in situations where I'm wearing a fluffy coat and the people opposite me on the train are wearing t-shirts. It sometimes makes me feel awkward but I'd rather be warm than no embarrassed.
Sucks when you overdo it and get too hot though 😅

[alexachronister]

We are forever loving your videos! Thank you for all you do!

[code_blue]

I haven't got a clue what this is and I'm 85% sure I have it.

[Endtherinbetween]

i relate to most of these, although the only one i really had when I was younger was the salt cravings but since i was about 8 it started with the feeling of blood pooling if i held my arms wrong/stood too long

then my blood pressure started dropping when i stand up too fast and/or my heart goes silly

I’ve basically always had chronic fatigue though, that probably started when i was about 5/6 because that’s the last time i remember not being tired all the time lol

and here I am now, I’ve been getting vertigo on and off for weeks/months, I lost count and a few weeks ago my heart decided to do a big eff you and beat extremely fast then suddenly skip a few beats every few minutes for 5 days straight, I also struggle to stay awake after 10pm/before 9am, although it is currently 20 minutes past midnight but I’ve been sitting around all day and am currently struggling to stay awake lol

I’m still trying to figure out how to talk to my parents about this because it’s starting to become a progressively bigger problem

[alucardfreak]

About 95% of this video... I used to have problems with potassium and sodium so much. And the dizzy spells.. Ugh!

[loonathe_waffle]

I got diagnosed with POTS and CFS six months ago and I relate to so many of these

[FlyingBirdSs]

How many people here can no longer cycle because of their Dysautonomia. I haven't cycled in years. My brain can't handle the moving images.

[lzhero]

I think I might have some form of dysautonomia. I struggled a lot to clean my room when I was younger because moving around to pick things off the floor would make me super dizzy and fatigued. I didn’t understand how my siblings were so good at it. It wasn’t that I just didn’t want to clean my room and moreso that it just made me super tired every time I did barely anything.

[Chronically.ServiceDogJones]

the one about the heart being higher than anyone elses got me, i have POTS and i failed a heart rate assignment because my heart rate when i was laying down and when i was running was like 4 times higher than anyone elses.
other people: 80-90 range when running or laying down
me: 90-120 when running or laying down
my teacher: gave me an F on that lab because my heart was at 115 when i was standing and when i was sitting it was at 95 and when i was running it got to almost 120

[r.c.whitaker]

Feeling like I'm on a swaying, heaving boat ⛵
Even though I grew up on the South Plains 🏜️

[eatveggies]

I think I might have this- I get really dizzy when I stand up from bending down and if I stand for too long my legs start really hurting so bad that I need to sit down, and my resting heart rate is usually in the 115-120’s range. Is this normal or should I get checked for POTs??

[cochiefemeralds]

I have always had a very fast resting heart rate which my dad just told me months ago but I’ve been diagnosed with POTS/dysautonomia last month