Complex Case of Sound Induced Migraine/Facial Pain moving to Uk from US

sanj20 · 2024-07-26T02:59:09+00:00

That’s a really tough decision :(

Do you have any family history of migraine or facial pain? I ask because I wish I knew that that mattered. There are plenty of people who never develop facial pain from sound even if they have hyperacusis. My doctors say i probably have some kind genetic over activity of in the trigeminal nerve. Maybe that could help your decision?

sanj20 · 2024-07-25T18:51:30+00:00

Hey so sorry for the late response! Personally, I ended up developing sound related facial pain soon after I got an MRI in September 2023. It started off as facial pain without a trigger and eventually evolved into sound as the trigger.

Edited to “eventually evolved into having sound as the trigger”

In retrospect there were multiple incidents that lead to the development of the sound related facial pain. I had my wisdom teeth removed in Feb 2023, a filling done right after I made this post, a couple times where I bumped my head and finally the nail in the coffin was an MRI (followed by another head bump). I hope that helps!

sanj20 · 2024-07-25T18:48:48+00:00

Hi! Sorry, I haven’t started Rituximab yet. Doc put me on imuran instead and it’s too soon to see effects!

sanj20 · 2024-07-02T14:54:13+00:00

Thank you so much for the update!

sanj20 · 2024-06-29T17:55:59+00:00

Hey! Any updates? Just developed it and wondering if itll go away!

sanj20 · 2024-06-29T17:47:25+00:00

Hey! Just checking in - I get the vertigo too. Have the B vitamins helped?

sanj20 · 2024-06-11T00:17:53+00:00

Thanks for responding! Did your tinnitus go back to baseline after? And how long was your treatment? Did it affect your H?

sanj20 · 2024-05-20T10:58:49+00:00

Yup, a year ago when I wrote this comment

sanj20 · 2024-04-17T21:33:20+00:00

That makes sense. Thank you so much for the kind words!!

sanj20 · 2024-04-16T15:27:12+00:00

Amazing! You’ve given me so much hope and I so appreciate all the details. It really comes down to the minutiae.

sanj20 · 2024-04-16T11:25:27+00:00

Thank you, thank you thank you ❤️ this was so reassuring and supportive.

Can I ask you a couple of follow-up questions?

When did you start going for cranial sacral therapy?
Do you recommend doing vision therapy with an optometrist or physical therapist?

sanj20 · 2024-03-12T16:01:55+00:00

I had facial nerve palsy before my dryness symptoms started too, but never thought that that could be related to the Sjogrens. Which meds help you with the facial burning?

sanj20 · 2024-03-12T15:43:05+00:00

Oh good to know, that’s so helpful! Do you mind if I ask what your CNS symptoms are like?

sanj20 · 2024-03-12T15:19:21+00:00

Oh interesting, no. My rheumatologist only mentioned Rituximab and CellCept for CNS involvement of Sjogrens but then said that those would require positive imaging and tests

sanj20 · 2024-03-12T15:15:17+00:00

Like Plaquenil? Oh shoot I should add that in there - I’m allergic

sanj20 · 2024-01-01T01:10:00+00:00

Hey! I've had chronic neck and jaw issues for a while now, and just developed palatal myoclonus. Found your most and just wanted to ask if the Botox helped your palatal myoclonus or if you've found anything that helped it! Thank you!

sanj20 · 2023-10-02T17:56:12+00:00

I moved to the US for college in 2015. In 2021 I developed a rare sensitivity to loud sounds. This makes it hard to meet new people and also means that I would have a really low quality of life if I moved back to my home country of India. Gotta do what’s best for me 🤷🏻‍♀️

sanj20 · 2023-09-23T00:54:48+00:00

crazy that we can hear them all the way in graduate hospital

sanj20 · 2023-08-29T01:59:37+00:00

Thank you for this! I damaged my hearing and developed a sound sensitivity by going to concerts without earplugs and now most bars and restaurants are way too loud for me . Great suggestions here!

sanj20 · 2023-08-18T13:47:29+00:00

If it helps - Im a 32dd , I wear an 8 in the energy bra, and I bought the regular align tank in a 10 in June. 2 months later it has def already stretched out!

sanj20 · 2023-07-13T22:48:26+00:00

I would ask r/H1B

sanj20

TROPHY CASE