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21 Signs You Grew Up With Dysautonomia

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Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health or diagnoses, please consult a doctor or medical professional.

If you’ve been diagnosed with a form of dysautonomia, it can be helpful and even reassuring to have a name and explanation for the symptoms you experience. But for some, a diagnosis not only sheds light on their current health situation, but the years (and sometimes decades) before diagnosis as well.

If you grew up experiencing certain symptoms that felt “normal” for you, it may have taken many years and doctor appointments before you realized they were actually early signs of a chronic illness. So, we asked our Mighty community to share some of the signs they grew up with dysautonomia, which they now recognize in retrospect. Maybe some of the following will remind you of your own childhood experiences.

Here’s what the community shared with us:

1. “I thought everyone fainted when they stood up too fast or were on their feet for long. I thought that was completely normal.” – Susan F.

2. “I was diagnosed with ‘exercise intolerance’ as a kid and they tried to give me an inhaler that didn’t work. I was always the last kid to cross the finish line for the weekly grueling marathon known as ‘The Mile’ and I’d be out of breath, about to pass out. I legit thought standing up and having your vision black out was normal, that it happened to everyone. Spiking a 150 heart rate from standing, same. Being short of breath at 15 climbing stairs, same. Even as far back as I can remember, I didn’t like playing outside or running around. I always preferred to draw or play with Barbies – quiet, calm, indoor, sitting activities.” – Courtney S.

3. “My first sentence was, ‘I’m dizzy.’ My mom thought I was saying, ‘I am busy.’ Never could do rides that spin or rollercoasters.” – Stacie J.

4. “I have always struggled with temperature regulation and always found myself being cold. I would wear thermals under everything and still be freezing although others were walking around in T-shirts and shorts.” – Lily T.

5. “When I was younger I was always picked on for the amount of salt I craved. So many horrible jokes about how I would have high blood pressure and heart problems, and my BP is still low and the heart is fine minus the tachycardia. Guess the joke is on them now that I know why I needed it so much.” – Heather G.

6. “I have always been told I was ‘part monkey’ since I adapted at a very early age to be able to pick things up with my toes when I’m standing so I don’t have to bend down or when I’m sitting so I don’t have to get up, since bending down and standing up both cause dizziness and can result in me passing out.” – Em M.

7. “I was always afraid I’d fall off the back of the bleachers during music recitals in elementary school. Now I know it’s because I would get dizzy and lightheaded from POTS, but back then I didn’t know how to describe the feeling, just that I was scared of falling.” – Lindsay P.

8. “I used to do my homework sitting on the floor with my legs up. I’d always be crumpling up to get my heart lower. My mum would always find me asleep in bed with my legs in the air up against the wall!” – Lisa K.

9. “The way my fingers and hands used to turn purple and red and even occasionally swell in normal fall weather. I also used to think that nearly blacking out upon standing up was normal for everyone!” – Leah B.

10. “I would have what I called ‘dizzy spells’ where I would get extremely lightheaded and dizzy. I would lose hearing, get black covering my vision and sometimes lose consciousness. It happened many times in high school and was extremely embarrassing.” – Jemma F.

11. “My friends always made jokes that I was not a ‘real woman’ because I didn’t like to go shopping. Turned out that any kind of shopping or walking around looking up and down made me feel dizzy and it was due to my low blood pressure. At 30 I was finally diagnosed and advised to avoid activities like going shopping.” – MariaElena V.

12. “I remember being in high school and not being able to stay awake. Almost every day I would fall asleep at the same time every day – no matter what I just couldn’t stay awake. Also missing school because I fell back to sleep on the couch after getting ready. My mom would freak out once she realized I was asleep when I should be at school. It wasn’t until I was almost 30 when finally knew why I was the way I am.” – Ashley C.

13. “I had (and still have) a ‘party trick’ where I can drink an entire 20 oz. bottle of water, Gatorade, Powerade, etc. in about 30 seconds. I have always needed more fluids than anyone else around me, and always had something to drink on hand.” – Kourteney K.

14. “No matter how conditioned I was for sports my heart was always pounding out of my chest. My chest would just hurt so bad after a workout.” – Marissa H.

15. “I started fainting in my teens, I always craved salt and never understood how people could stand in the shower. I always sat whenever I could and sat cross-legged even on chairs because my legs would ache and turn red if they dangled. My resting heart rate was 130 to 140 bpm and I was told that was just ‘my normal.’” – Samm D.

16. “When I was 5, I started smelling rubbing alcohol every time I stood up and would get ‘black spots’ covering my vision and a pounding headache. I felt like the only kid who couldn’t run and play; my legs were always sore and achy. Didn’t get diagnosed until I was 15 after passing out on the tilt table test. I had no idea that what I was experiencing all those years was syncope and near fainting episodes. I tried to explain what I was feeling when I was 5 and no one believed me until I was diagnosed 10 years later.” – Skyelan R. S.

17. “As long as I can remember my legs always turned purple if I stood for any length of time. Honestly it didn’t ‘click’ that it was dysautonomia until I joined support groups and saw others had the same issue. I always assumed it was because I was unusually pale.” – Bai J.

18. “During P.E. we had to manually check our own heart rates a lot. Mine was always so much higher than everybody else’s that I thought I was counting wrong. I started skipping every other beat when I counted just so I could match what the teacher thought I should be at.” – Lindsay P.

19. “I was always sitting upside-down on the couch, which confused my family, but was likely because I got lightheaded when upright. I’ve never been able to run, which was due to tachycardia, but I never knew that. In high school, I had problems standing for the duration of choir, walking across the entire building within five minutes, using the stairs and getting up on time, all of which are likely due to POTS and other tachycardias.” – Kat E.

20. “I was always (and still am always) cold. Unless I was exercising, then I’d get so hot sometimes I’d get sick. I was always embarrassed in gym because even light exercise had me looking like I jumped into a pool fully clothed. I stopped giving it a second thought until my electrophysiologist told me that temperature intolerance was part of it.” – Katie M.

21. “Almost passing out upon standing from squatting. I used to think that happened to everyone.” – Christi S.

Originally published: September 5, 2017
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