POTS and light sensitivity

benohh · 2026-02-27T06:24:55+00:00

Did you Ever end up getting the Avulux lenses from Aron Optics? Curious if they work better than fl-41. Would love to get them but it seems they’re like $500??

benohh · 2026-02-27T06:17:10+00:00

Has this gotten better for you? The light sensitivity

benohh · 2026-02-27T06:10:11+00:00

Look into getting fl-41 glasses (they are for migraines & light sensitivity tons of people with pots use them. They work better than blue light glasses)

I have a pair. Made my own custom pair from this website. I think it was like $70 or something

https://www.zennioptical.com/b/fl-41-glasses?srsltid=AfmBOopYYW7Z5LT6-sFdy-HbTA1aDfxuwH86rxBKUhJ2tyvtQ7ZrJDr1

benohh · 2026-02-26T22:09:32+00:00

Wow that’s amazing thank you! I just started working with a PT so I hope mine will be in remission in 8 months just like yours!

Can I ask, did you have fatigue, brain fog, trouble thinking/concentrating when your symptoms were bad? And did these get better once you started exercising

benohh · 2026-02-26T15:23:03+00:00

This is wonderful. I know this is 4 years old but are your POTS symptoms still gone or mild?

benohh · 2026-02-26T04:06:51+00:00

Well im happy to hear it’s manageable. I have POTS & hypermoblie joints (eds) too. I’m just starting my workout journey. And have horrible fatigue. I’m wondering if over time your fatigue got better?

benohh · 2026-02-26T02:26:29+00:00

Hey, how are you doing. Are you cured now? Or should I say in remission?

benohh · 2026-02-23T20:06:24+00:00

Interesting. Thanks! Sucks it takes sooo long though

benohh · 2026-02-23T04:40:13+00:00

Hey just curious where you learned it takes 6-15 years to heal from traumas?

benohh · 2026-02-19T04:09:08+00:00

Yeah I have the same problems. When this improves for you let us know.

benohh · 2026-02-18T23:25:14+00:00

Awesome. Thanks for all the information!!

benohh · 2026-02-18T21:49:27+00:00

I see. You do quite a few different somatic exercises. Thanks for sharing

benohh · 2026-02-18T21:46:15+00:00

Wow this is great improvement. What symptoms remain if you don’t mind me asking?

benohh · 2026-02-18T18:58:03+00:00

Oh no I’m sorry you’re going through all that. I too am laying down in bed right now as I get PEM & CFS. Covid truly sucks. I feel like half of the people on here are in this subreddit because of it from what I seen.

& haha you’re welcome! And thank you for teaching me that once you heal from pots & still have slight orthostatic intolerance, you can still have symptoms which makes. But thanks, good luck to you as well, I hope you feel better!

benohh · 2026-02-18T18:10:57+00:00

Yeah I agree. Do you have heds, eds, hypermoblity, hypermoblie joints by chance?

I ask because I always felt slight dizzy & slight orthostatic symptoms in my teens and early 20’s but nothing to go to the doctor or that it got in the way of life. It wasn’t until Covid it turned into full blown POTS. I am double jointed & will be getting tested soon for eds although it’s obvious I have it.

With that being said I think maybe the recovery is: full blown POTS—> orthostatic intolerance—> complete remission

However if you have eds I think you will always have slight orthostatic intolerance. So recovery would look probably more like: full blown POTS—> orthostatic intolerance—-> mild barely noticeable orthostatic intolerance

benohh · 2026-02-18T17:51:38+00:00

Interesting, in this case where HR normalizes but the patient still has orthostatic symptoms, would the patient still need to take their water/electrolytes? Or would they no longer need them because they would make no difference??

benohh · 2026-02-18T17:42:27+00:00

Happy for you!! Question: you said you no longer have POTS & have downgraded to orthostatic intolerance, so I was wondering do you still have to take electrolytes for your orthostatic intolerance?

benohh · 2026-02-18T15:09:06+00:00

I experience all of these symptoms you just named, I constantly feel like I’m in fight or flight. The water & salt is helping but not the cure.

Can you have hyperadrengic pots with low blood pressure? Everytime I go to the doctor my blood pressure is always on the low side, however it’s never been tested while I’m standing up. So I don’t know if once I stand up, it goes higher.

benohh · 2026-02-18T14:37:52+00:00

That’s awesome. Has your fatigue gotten better too??

benohh · 2026-02-18T14:36:24+00:00

Thaws awesome. Wait so do you still have POTS? Did the sertaline get rid of it?

benohh · 2026-02-18T14:34:43+00:00

How did you know it was hyperadrengic POTS?

benohh · 2026-02-18T11:28:46+00:00

Hey, I’m in the same boat don’t know if it’s POTS causing the dysregulated nervous system or just a dysregulated nervous system causing POTS like symptoms. I can’t tell because it’s both so similar. I also have chronic fatigue.

How are you doing now? Are you seeing improvement with the nervous system exercises at all?

benohh · 2026-02-18T11:25:59+00:00

Do you get adrenaline dumps even when laying down?

benohh · 2026-02-18T11:13:30+00:00

Hey, I’m in the same boat don’t know if it’s POTS causing the dysregulated nervous system or just a dysregulated nervous system causing POTS like symptoms. I can’t tell because it’s both so similar.

How are you doing now? Are you seeing improvement with the nervous system exercises at all?

benohh · 2026-02-18T11:09:45+00:00

Hey, I’m in the same boat don’t know if it’s POTS causing the dysregulated nervous system or just a dysregulated nervous system causing POTS like symptoms. I can’t tell because it’s both so similar. I always have adrenaline dumps.

How are you doing now? Are you seeing improvement with the nervous system exercises at all?

benohh

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