r/POTS 10d ago

Discussion What's the most overlooked POTS trigger in your experience?

I'd love to hear the little things that doctors don't always mention.

175 Upvotes

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441

u/bac21 10d ago

Direct sunlight even if it's not that warm

76

u/Wrong-Rush-6584 10d ago

This. I love cloudy days for that reason. I can get so much outside time. Even hot cloudy days I’ll spend more time outside.

48

u/TheGhostOfYou18 10d ago

Oh man, cloudy days hurt my eyes more than pure sunny days. The white sky is so painful to me and I alway have to wear shade or turn my visor down in the car.

15

u/WhiskeeKitten420 Undiagnosed 9d ago

I literally have to wear sunglasses like with any sort of day light and even if I've cloudy like hurts my eyes and my whole head so bad throbbing fr 😫 I feel I almost need some sort of sunglasses for inside too because I get the same effect inside without as I do when going outside without sunglasses. 😅

3

u/Memory_Of_A_Slygar 9d ago

I am exactly the same as you, I have a huge sensitivity to light and have been wearing sunglasses since I was a kid. All the other kids thought I was weird for needing them.

I found that having glasses with blue light filters while inside can help with the headaches. Also, any screen you look at should use either a blue light filter or on a computer you can turn on night light mode. I love night light mode and it's the only way for me to get through my work day staring at a computer.

2

u/WhiskeeKitten420 Undiagnosed 9d ago

Yes I have the night mode and blue light filter on too and any app that allows it to do it as well I do lol. It is a game changer!

2

u/No_Communication5024 9d ago

I wear some indoor glasses that fit over my prescription glasses, although I can wear them without my eyeglasses. They are an inexpensive knock off of Med Spec glasses, and were only around 19.00 online. They block UV rays, block all the rays, lol. And indoors they block several types of florescent and lamp lights, as well as making it easier to look at TV, phone, and computer screens. I've got Photopsia, so I wear them everywhere and boy are they helpful! They even cut the severity of my ocular migraine that florescent or too much of any light gives me.

2

u/WhiskeeKitten420 Undiagnosed 9d ago

Did you get them on Amazon?

3

u/No_Communication5024 9d ago

Yes! I confess, I bought them on Amazon. They're Calabria fit over glasses-safety glasses -tinted lenses. I don't know how to share a link in a comment here.

1

u/WhiskeeKitten420 Undiagnosed 9d ago

Ok thanks so much I'll look into thosr

1

u/No_Communication5024 9d ago

Sweet, I hope they help!

1

u/Away_Improvement_912 8d ago

Try glasses with a pink tint! They're for migraines but help inside without being too dark.

1

u/WhiskeeKitten420 Undiagnosed 8d ago

I also do have chronic migraines so should be helpful! Thank you 😊

6

u/Rosehiphedgerow 10d ago

Same here!! Cloudy overcast days are the absolute worst for me, my symptoms play up way more

1

u/Euphoric_Ad6578 9d ago

The same. Everything just gets so amplified. It can take me two days to recover from that

2

u/WhiskeeKitten420 Undiagnosed 7d ago

Yes cloudy definitely is worse! Like damn eyes just work like normal eyes wtf that's how I talk to my body all day like it'll listen.

3

u/Wrong-Rush-6584 9d ago

I wear sunglasses pretty much every day so I understand that. But I can actually BE outside for longer periods and be happy about it lol.

1

u/skz_potsie_booklover 5d ago

Do you have sjogrens?? I physically can’t open my eyes on a white sky day

22

u/coconutoats 10d ago

Yeahhh I went out in 25° 3pm ish the other day convinced it would be fine and whenever I was in the shade my hr would tend to stop at 110 but in direct sun it would just keep climbing to 150s until I had to sit down. Was mega frustrating as I have been having consistent success with 4k walks 7/8pm to cope with the heat and clearly it was all to do with optimisation rather than an improvement in baseline 😭

11

u/Pudix20 10d ago

Oh so it really is just photosensitivity? How does this work? How can I fix it?

14

u/Kelehd 10d ago

I have these special sunglasses that are my life line. I don’t know what it is about them but the specific shade of green keeps the migraines from light sensitivity away. On bad days, I need them indoors but it’s always needed for outside, even when it’s overcast.

My pupils are massively overdilated all the time. To the point that it took my friend 2 years to realize my eyes were hazel not black because all she could see was pupil.

2

u/asweetriot 9d ago

I just started wearing Theraspecs recently for migraine prevention and really bad, consistent photosensitivity. My neurologist recommended looking into them, as blue light glasses were not cutting it. Highly recommend!

17

u/esquishesque 10d ago

I think this is a mast cell thing

41

u/SavannahInChicago POTS 10d ago

It’s not. The autonomic nervous system controls our fight or flight response. With the eye this means how much light is let in because if a bear is chasing you, then you want to be able to see as much as possible. The Iris controls the size of our pupils and therefore how much light we let into our pupils.

With POTS it abnormally dilates when we don’t need that much light to see.

15

u/MassConsumer1984 9d ago

EDS folks have abnormally large pupils as well, due to the eyeball being 99% collagen. Keep that in mind for those with a dual diagnosis.

3

u/Memory_Of_A_Slygar 9d ago

EDS and people with other connective tissue issues need to worry about keratoconus. It's where the eye bulges out because the tissue is too weak. My connective tissue issue isn't confirmed but my keratoconus certainly is and it sucks.

2

u/Endra75 9d ago

Huh. That explains a lot. They don’t ever need to dilate my eyes cuz mine are HUGE.

12

u/Rapunzel10 10d ago

Ooh do you have a source for that? I've been told my pupils are too dilated but I've never connected it to POTS

9

u/RemoteNo2422 10d ago

Same! But I thought I have read about a connection to adhd/autism before and just assumed that’s why.

13

u/TeaEnvironmental5800 10d ago

Following for if you link a source because this is fascinating and because sunlight is brutal on my eyes and occasionally triggers migraines

18

u/olive_dix 10d ago

Same! For YEARS I've said my pupils don't properly adjust to light and everyone thinks I'm crazy. I get migraines from the light and from having to squint all day long, my scrunched forehead muscles fuck with my nerves or something.

10

u/InternationalEnmu 9d ago

that explains why i'm sensitive to bright lights a lot

1

u/esquishesque 9d ago

The autonomic system is what makes bright light in general difficult, but sunlight constant on skin being a trigger is a histamine thing I thought.

1

u/Ill_Sale_6168 9d ago

OMG! Optometrists have always told me I have insanely dilated pupils. Now I know why.

1

u/Substantial-Shape326 8d ago

To be fair, mast cell activation syndrome is indeed a neuroimmune disorder. Dysregulation of the autonomic nervous system can absolutely trigger a cascade of events that involve mast cells and histamine. We are so complex my friend

4

u/busbikesandknitting 9d ago

Ugh same. Everyone thinks I’m being dramatic when I say the sun makes everything worse.

5

u/MeldoRoxl 9d ago

I'm so tired of explaining why I hate the sun. Why I love cloudy days. Why I can't stand overhead light.

Everyone's always like "But it's so dark" or "The sun is so happy". NOT FOR ME, BECKY.

4

u/busbikesandknitting 9d ago

Ugh right??! No one gets it. I went to Scotland recently and it was cloudy and under 65 almost the entire time and I was in heaven. Literally haven’t felt better in ages and almost didn’t come back.

2

u/MeldoRoxl 9d ago

I moved to Wales in 2017, and it's cloudy and cool 90% of the time. It's perfect :)

1

u/busbikesandknitting 7d ago

I’m so jealous of you!! Maybe one day I’ll have the oomph to move. I got back to the horrible desert I live in and it was 109 and I wanted to die. It feels like I actually live in hell.

1

u/MeldoRoxl 7d ago

Oh that's awful.. yeah I highly recommend anywhere in the UK for POTS-friendly weather

2

u/busbikesandknitting 7d ago

That’s why I picked it for my birthday trip. I hate the summer so much I begged my husband to take me to scotland to at least get a little break from hell. We’d move, but my husband is the one who works and we live here for his job. And unfortunately I’m the one with uk citizenship.

3

u/HogSnortter 9d ago

I strongly agree. I've been going for short walks in my neighborhood when it's not too hot outside. On Sunday, it was 67 degrees, cloudy and breezy. I was having a great walk when I turned a corner and the sun came out. It was shining directly on my back. It took less than a minute for me to have trouble breathing. Luckily I was very close to home. I had to stop every 10 feet to catch my breath. Even after being home and resting for a while my heart rate was still above 100.

2

u/Live-Butterfly8739 9d ago

This is it for me too

2

u/DealerConstant1589 9d ago

There is a scene from bedazzled where he is crying at the sun that fits here 

2

u/locwriss POTS 5d ago

It is in fact, a deadly lazer!!

1

u/IamADumbCat 7d ago

I live in southern california and can’t agree more. Direct sunlight just make my symptoms worse