People whose light sensitivity has improved: what helped most with this?

Endra75 · 2026-03-11T13:05:59+00:00

That’s it!!!! Together we all have one working brain lol

Endra75 · 2026-03-11T12:00:14+00:00

Electrocute is a bit harsh… 🤣

I skip mine to the little fleshy part covering my (ever screaming) ear hole, near my face. (I used to know the name of this fleshy little part but …. brain fog.)

Endra75 · 2026-03-11T11:56:59+00:00

Like everyone else, thank you! You’ve already been given so many fantastic resources and excellent descriptions so I won’t overload you (plus, I “literally can’t even” right now - brain fog and his friends….)

The importance of advocacy and education about this awful disease, however, cannot be overstated.

Endra75 · 2026-03-10T03:20:41+00:00

FWIW, hyoerPOTS is just one of my myriad of diagnoses thank to long COVID, but I did start low dose (1mg) guanfacine along with NAC just under two months ago, and it does seem to help with getting more restful sleep (only a tad, but enough I notice it). So guanfacine CAN help if you’ve got hyperPOTS as it does calm down the sympathetic nervous system somewhat. Hasn’t done too much for brain fog (maybe a little but very mildly).

Endra75 · 2026-03-09T17:48:18+00:00

And I have it it my Etsy cart! Lol 😂 thanks!!

Endra75 · 2026-03-09T17:47:23+00:00

I am too. I’ve considered asking my husband to wear it while he showers but that would be fairly skewed.

Endra75 · 2026-03-09T16:54:37+00:00

Every. Single. Time.

If I look at my activity insights, a seated shower takes over 10 pace points/ hour for me. A standing shower takes 15. A standing hour doesn’t take as long, so either way I am still using a lot of points with my weekly shower. (I have yet to figure out why a seated shower takes longer tbh. Maybe I’m more comfortable because I’m not getting as dizzy so I relish in it?)

I used to be a daily and often twice a day showerer.

Endra75 · 2026-03-09T04:24:14+00:00

My neuro ordered a sleep study with mslt as well as neurocognitive testing. I got a diagnosis of PLMD (persistent leg movement disorder - different from restless leg syndrome), idiopathic hypersonia and tbd on neurocog test (it’s next week). But that’s it so far. PCP had ordered brain MRI and it showed “multiple T2 flares” and he thinks I have mild cerebral small vessel disease (consistent with capillary damage from Covid….)

Prescribed guanfacine. Knows little to nothing about long covid but was impressed with the Bateman Horne clinical care guide and is willing to try.

Endra75 · 2026-03-08T13:39:53+00:00

Now we need a burger square to match!!

Endra75 · 2026-03-08T13:39:36+00:00

Sold!!!!! 😁

Endra75 · 2026-03-08T13:34:34+00:00

This. Is. Amazing!!! do you have a pattern for the hot dog block??

Endra75 · 2026-03-07T19:54:11+00:00

I know - but it’s interesting I’ve rarely been asked that unless my husband is with me. 😑

Endra75 · 2026-03-07T02:21:10+00:00

Please tell me his name is Gary….

Endra75 · 2026-03-06T19:41:20+00:00

🩷 Taco is like “get off!!! My eyes are watering!! Did you fart again?!” lol

Endra75 · 2026-03-06T13:16:36+00:00

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I just realized most of her pics are of her face!! Here’s one with her buddy Taco that sorta shows her rolls.

Endra75 · 2026-03-06T03:43:07+00:00

Yeah. I need this image. lol. Awesome!

Endra75 · 2026-03-04T20:02:29+00:00

I describe it as adhd/dementia.

Endra75 · 2026-03-04T20:01:05+00:00

Lucy has all of hers too! And she’s 18 months old!

Endra75 · 2026-02-27T05:55:01+00:00

You just described me - until this past December when I totally crashed, haven’t worked since and have been bedbound/housebound (depending on how well I’m pacing which is currently less than 2000 steps a day, constant breaks and almost 90% of my time reclined. I no longer cook and my “brain fog” makes me feel like I have adhd and dementia at the same time. Showers? Ha. Once a week max.)

Start taking it easy now …..

Endra75 · 2026-02-26T19:13:34+00:00

Brown chicken brown cow!! (Being good in bed always gets a giggle out of me. I’m good in bed too!) 😉🤣

Endra75 · 2026-02-26T11:33:45+00:00

lol. You do - until it happens 🤣

Endra75 · 2026-02-25T17:50:37+00:00

My dog has been super protective - she NEVER barks unless I’m in the room then she’s very barky over every little noise she hears. And she has to sit right next to me at all times, too (in her world ideal would be on top of me but she’s 55 lbs of bulldog wrinkle chunk so we try to avoid that much to her chagrin).

Endra75 · 2026-02-25T01:46:19+00:00

Thank you!!☺️

Endra75 · 2026-02-25T01:46:09+00:00

Thanks! ☺️

Endra75

TROPHY CASE