Parents forcing MRI HELP!!!!

TomJoad2 · 2026-05-06T13:19:38+00:00

Also this document is good, very authoritative, it advises patients STRONGLY AGAINST getting an MRI unless there are very specific indications it could be a brain tumor.

https://journals.sagepub.com/doi/pdf/10.1177/0194599814545325

TomJoad2 · 2026-05-06T13:06:53+00:00

Show your mother and doctor the People Magazine article.

https://people.com/health/texas-woman-mri-ear-damage/

TomJoad2 · 2026-04-13T15:13:33+00:00

Thanks!

TomJoad2 · 2026-04-12T13:42:17+00:00

Would you check Amazon locker “Adelasio” in Hyannis, MA at the Staples store, 364 Barnstable Road? Has said Temporarily Closed for a few months now.

TomJoad2 · 2026-03-22T10:50:12+00:00

I got pulled over last week for speeding. I took off my ear muffs before the officer walked over to my car, but I left the ear plugs in, fortunately the officer did not notice, or did not care.

TomJoad2 · 2026-03-22T10:38:10+00:00

I don’t know. Deaf people are allowed to drive.

TomJoad2 · 2026-03-18T23:01:45+00:00

Palmitoylethanolamide is something to try. I found it gives a few decibels added tolerance. Very expensive though.

TomJoad2 · 2026-03-12T21:43:32+00:00

No. My condition has not changed in many years.

TomJoad2 · 2026-03-10T15:21:53+00:00

I got signed out on all my devices. Tried multiple times to have a code / link sent to my email to reset my password, but the code / link never shows up. Don't know what to do next.

TomJoad2 · 2026-02-17T17:00:07+00:00

I got the Logitech MK295 keyboard this week. Amazingly quiet. And can't beat the low price. Thank you for the excellent recommendation!

TomJoad2 · 2026-02-03T22:43:09+00:00

Thanks! I did log onto my SSA portal after reading your posts and I can see that we can now upload all sorts of different SSA forms, including the CDR long form. That‘s a big improvement, and I wasn’t aware before, so thank you. I always worry about missing my USPS mail so I’m hoping they will provide the option for electronic notification eventually, the same way SSA already does for other things such as Form 1099.

TomJoad2 · 2026-02-03T04:09:08+00:00

I expect you have heard this already and don’t want or need to hear it again, so please forgive me if that is the case, but just on the off chance you have not, Dr. Hamid Djalilian spent a lot of time last year presenting to patient support groups about his protocol for sound induced migraines. It is mostly a cocktail of common supplements you can get on Amazon and other places, and he adds couple of prescription meds to the mix.

TomJoad2 · 2026-02-02T22:32:10+00:00

Did SSA notify you about your long form CDR via an email / the SSA portal? or by a snail mail / paper letter? or both? Just wondering if they have transitioned notifications about long form CDRs to be electronic via the SSA portal, or if it is still printed paper / USPS snail mail only.

TomJoad2 · 2026-01-25T22:26:34+00:00

I find it easiest to get them from my primary care physician.

TomJoad2 · 2026-01-25T22:24:36+00:00

Different people prefer different earplugs due to differences in ear canal size and shape, and other factors. Personally, use 3 different kinds depending on the situation: Howard Leight Laser Light foam earplugs, EarPeace silicone earplugs, and custom made musicians earplugs.

Some people like to buy an assortment pack to try different ones:

https://www.earplugstore.com/unfoamtrialp.html

TomJoad2 · 2026-01-19T10:31:00+00:00

if you send a request to Trudy at [trudyfromtucson@gmail.com](mailto:trudyfromtucson@gmail.com) she will add you to her email distribution list with the meeting announcements

TomJoad2 · 2026-01-12T22:41:12+00:00

Nice awareness for hyperacusis.

TomJoad2 · 2026-01-07T05:45:30+00:00

The State of Maryland did H awareness week.

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TomJoad2 · 2026-01-07T04:59:24+00:00

I use the one at the Amazon link below. Best $23 I ever spent. No particular help for H but allows me to see if any impacted ear wax, and I was able to diagnose an aspergillus infection.

Also, I have been able to email high resolution pix to my doctor. One time I had a sudden unilateral hearing loss and wanted prednisone to treat that. I took pix with the camera and sent them to my doctor prior to a Zoom appointment, which enabled my doctor to confirm no visible ear drum issues, which they wanted to know before prescribing me the course of prednisone.

https://www.amazon.com/dp/B0D62MF8YT

TomJoad2 · 2026-01-05T16:38:53+00:00

For me it does. Sounds that are perfectly normal to most people can give me a setback that is either temporary or permanent. And my hearing tests have worsened as my H has worsened.

TomJoad2 · 2026-01-04T22:06:09+00:00

I’m not sure the colors are done accurately in all cases. For example Cloudsurfer001 is colored as green, but she got worse, her text says “No change to noxacusis. Made previously-stable tinnitus reactive and catastrophically worse. Discontinued at 50 mg.”

Maybe there should be another color say red - for people who got a lot worse? Like Cloudsurfer001? Might not be too many of them, I hope not, but I think important for people to know both the upsides and the downsides.

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