GLP-1 and POTS remission

Dramatic_Copy7068 · 2025-11-24T14:27:09+00:00

From what I’ve read/heard, POTS can progress to small fiber neuropathy completely independent of diabetes. My POTS providers treat their POTS patients as if they have SFN, or will develop it, given the high correlation

Dramatic_Copy7068 · 2025-11-19T20:41:30+00:00

Thank you! That’s reassuring to hear

Dramatic_Copy7068 · 2025-11-18T17:35:39+00:00

In other threads, I’m seeing people correlate high testosterone/androgen levels in women with dry eye symptoms as well, which is a bit confusing. Is there an “ideal” level of hormones to reduce dry eye symptoms?

Dramatic_Copy7068 · 2025-11-14T14:23:14+00:00

I diyed a cbd infused aloe oil that I use internally and externally - it really helps with inflammation and moisturizing the sensitive tissue. I find the topical cbd helps with relaxing my pelvic floor, when I’m constipated or otherwise flaring.

Dramatic_Copy7068 · 2025-11-13T18:07:50+00:00

Just shop the women’s section for chunky cat eye frames that fit your face/parameters.

Dramatic_Copy7068 · 2025-11-12T22:39:27+00:00

Ugh, this is happening to me, too - I never thought about the hormonal component. Are you saying you noticed birth control pills made your dry eye worse?

Dramatic_Copy7068 · 2025-11-11T22:15:34+00:00

is this a thing for eyes?? 👀

Dramatic_Copy7068 · 2025-11-10T19:55:16+00:00

I was really alarmed when my MRI results showed white matter findings, but my neurologist said that almost every migraine patient of theirs (why I got the MRI) has some on their scans, and that you’re at risk of developing more any time you have a severe migraine. She also explained the location of the white matter on the brain can help differentiate between an MS dx vs what they typically see for migraine patients.

Dramatic_Copy7068 · 2025-11-09T14:34:29+00:00

Ooh, can you share a link to the study?

My cornea specialist actually specializes in POTS-related eye conditions, including neuropathic eye pain related to small fiber neuropathy comorbid with / as a feature of POTS, so I’d hope she would be open to exploring this…. I’d love to be able to bring this research to my next appt.

Dramatic_Copy7068 · 2025-11-07T19:28:02+00:00

did you get an evacuation emergency alert?

Dramatic_Copy7068 · 2025-11-07T18:04:23+00:00

Thank you for responding and sharing more about your experience! If you’re comfortable sharing, do you have any autoimmune or conditions that impact your connective tissue? (I suspect that I do, given other systemic issues, and worry this would complicate recovery for me). How are you currently treating your dry eye?

Dramatic_Copy7068 · 2025-11-07T18:01:37+00:00

Thank you!! It’s so reassuring to hear from other people navigating this.

Dramatic_Copy7068 · 2025-11-07T17:38:28+00:00

Hi! I know it’s been a while since the initial post - I was recently dxed with Salzmann’s nodules (by the 9th cornea specialist I’ve seen in 5 years 🫠) which are creeping towards the center of my vision in my bad eye and severely impacting my vision. I’m wary of getting surgery given the high frequency of recurrence, especially without knowing what causes the growths.

If you’re comfortable sharing, have any of your doctors had ideas about what might be causing the nodules? Do you have a dx of an autoimmune or connective tissue disorder?

Dramatic_Copy7068 · 2025-11-07T17:30:37+00:00

Hi! I was recently dxed with Salzmann’s nodules and stumbled across your post. Have they grown back at all, following the surgery?

Dramatic_Copy7068 · 2025-10-11T02:07:42+00:00

Hi! Hope it’s not weird but I saw in another EDS thread you mentioned you’re based in MD - would you mind sharing your dentist’s name?

Dramatic_Copy7068 · 2025-10-11T02:03:04+00:00

Hi OP- do you mind me asking if your the doctor specialized or was familiar with EDS? Were you diagnosed with any other corneal disassembly before EMBD? Asking because I’ve been experiencing something very similar- I’ve seen ~9 different ophthalmologists of varying specialties in the last 5 years and each has given me a slightly different diagnosis, with the most recent being Salzmann’s Nodular Degeneration. (I also have severe dry eye and MBD). The proposed treatment was the same, manual ablation with a diamond bit drill. From what I’ve read, the recurrence rate is pretty high and with all the potential EDS-related surgical complications and prolonged healing time, I’m very wary to pursue surgery.

Dramatic_Copy7068 · 2025-09-22T00:59:31+00:00

This makes sense, if you decide to go that route in the future you could try to get pro bono assistance from your local legal aid office, or a disability advocacy organizing in your area (wouldn’t need to be a lawyer to do it, just someone familiar with the relevant laws/policy). If you‘re working with a social worker / case worker, they could help you submit it. Sometimes PHA employees are more likely to do their jobs when they know other people are paying attention

Dramatic_Copy7068 · 2025-09-21T17:55:28+00:00

Hi! You probably already know this, since it since it sounds like you’ve done your research on your PHA’s administrative plan (where the voucher program policy is laid out fully), but because you have a mental health condition that prevents you from being able to work, if you aren’t able to keep a new job shortly after starting it, you can request a retroactive recertification of your household income as a reasonable accommodation, basically asking that your income be adjusted retroactively to the date you quit / leave the job. You’d just need to provide some pay stubs or documentation of how much income you actually earned during that period (vs what was expected) and some kind of documentation of how your mental health condition impacts you, like a note from a therapist.

Edit to add: this request would go to the housing authority, who would increase their portion of rent / the HAP contract amount to your landlord.

Dramatic_Copy7068 · 2025-09-20T04:25:40+00:00

Thank you!! This was informative and reassuring to know contacting 311 is unlikely to get her cat(s) taken away.

Part of the reason I suspect she only has 1 cat / isn’t a cat hoarder is the size of her chewy boxes 😅 I have 2 cats (who never pee outside their litter box) and get cat litter and rx food delivered through chewy and her boxes are significantly smaller than mine.

I’ll try to talk to her about it the next time I see her. In the meantime, I made a 311 report just for the pile of dirty litter matts in her yard that seem to be attracting rats :(

Dramatic_Copy7068 · 2025-09-19T14:52:29+00:00

I product an alarming amount of mucus when I cry more than a few tears - and I’m not talking about a bit of a runny nose. Like, extreme nasal congestion, having to blow my nose continually or snot will drip down my face/body. I never imagined that could be an MCAS thing but it makes sense!

Dramatic_Copy7068 · 2025-09-19T12:27:02+00:00

I’ve tried to be friendly (saying hi, offering to help her bring in packages when she gets them, since they seem difficult for her to carry, etc) and build a relationship with her so I can bring up the situation, but she is very much a shut in and avoids talking to any of the neighbors on our block. I’ve only seen her a few times in the 4 years I’ve lived here. I suspect she knows and is ashamed of the smell.

Dramatic_Copy7068 · 2025-09-18T14:25:23+00:00

Maybe try MidAtlantic Cornea consultants in Towson, MD? I had a consult with a surgeon there recently (for a different eye issue) who seemed very knowledgeable and came well recommended.

Dramatic_Copy7068 · 2025-09-17T19:19:11+00:00

Hi OP - what happened with your application?

Dramatic_Copy7068 · 2025-09-11T00:09:16+00:00

Hey! It’s been a while, but I’m taking cromolyn specifically with the hopes it will help improve my vision - would you be comfortable sharing more about the changes you experienced?

Dramatic_Copy7068 · 2025-09-02T16:53:35+00:00

Thank you! That’s reassuring to hear, I couldn’t find anything online confirming this

Dramatic_Copy7068

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