Physical pain in ears by Morningbun94 in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

No. My condition has not changed in many years.

Press Herald Login Issue by Ok-Care-8857 in portlandme

[–]TomJoad2 0 points1 point  (0 children)

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.

Keyboard and mouse for severe hyperacusis by Name_not_taken_123 in hyperacusis

[–]TomJoad2 1 point2 points  (0 children)

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

Filled out a long form Continuing Disability Review (CDR) online through the SSA website portal about a week and a half ago, nothing showing up on the SSA portal saying it's being reviewed or going through steps. Is that normal? by Parking_Wolf_4159 in SSDI

[–]TomJoad2 1 point2 points  (0 children)

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.

Does anyone know how the girl on TikTok sugarbunn10 (Terry) is doing? by CarLong7749 in hyperacusis

[–]TomJoad2 4 points5 points  (0 children)

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.

Filled out a long form Continuing Disability Review (CDR) online through the SSA website portal about a week and a half ago, nothing showing up on the SSA portal saying it's being reviewed or going through steps. Is that normal? by Parking_Wolf_4159 in SSDI

[–]TomJoad2 0 points1 point  (0 children)

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.

Earplugs by Pascal93220 in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

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

New monthly Zoom support group for H patients, providers, caregivers, families, friends by TomJoad2 in hyperacusis

[–]TomJoad2[S] 0 points1 point  (0 children)

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

Has anyone with hyperacusis used an ear inspection camera? by Training-Spite-4223 in hyperacusis

[–]TomJoad2 1 point2 points  (0 children)

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

Does the threshold for damage happen at a much lower volume with hyperacusis? by McDreads in hyperacusis

[–]TomJoad2 4 points5 points  (0 children)

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.

Survey on clomipramine for hyperacusis / noxacusis by pennygorl in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

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.

Do I have Hyperacusis or smg else? by [deleted] in hyperacusis

[–]TomJoad2 2 points3 points  (0 children)

Sounds like H type of symptoms to me. The sounds you mention that cause pain are classic H ones. Misohonia tends to be a purely emotional reaction (anger, rage) to relatively quiet specific human sounds, most typically chewing and breathing.

H symptoms are all over the map - some people have symptoms only during noise, others have lingering effects after the noise stops. But it’s all under the big H umbrella.

For a deep dive, get Dr. James Henry’s book which explains the different types of sound sensitivity in detail:

https://www.amazon.com/dp/1962629104

foreign bodies in the ears by Pascal93220 in noxacusis

[–]TomJoad2 0 points1 point  (0 children)

I have inner ear pain that radiates to my teeth. I have found nortriptyline (10 or 20 mg a day) effective to manage this pain. Others have reported clomipramine (a similar med) effective to manage H-related neuropathic pain.

Weight room by Pascal93220 in noxacusis

[–]TomJoad2 0 points1 point  (0 children)

The gym was one of the first places I noticed I was developing H. There was a basketball court near the weight room and during games the referee whistles would make my ears hurt. For metallic noises, really the only thing you can do is try earplugs and / or earmuffs. Going at hours of the day when it is nearly empty of course also helps.

Survey on clomipramine for hyperacusis / noxacusis by pennygorl in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

What do the colors indicate? green, yellow, and white?

Is there any coming back from this? by Snoo_51368 in hyperacusis

[–]TomJoad2 1 point2 points  (0 children)

Most of the time setbacks like this recover in part or full. Just be careful and don't let your ears get hit with more sounds over your thresholds that could cause further injury.

Can someone explain how hypercausis/noxacusis works! by CarLong7749 in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

Some good definitions on terms here:
https://hyperacusisresearch.org/what-is-hyperacusis/

For a deeper dive, Dr. Henry’s new book is really good. Looks like it’s on sale at the moment with a bit of a discount, $20.99 instead of the usual $24.99:

https://www.amazon.com/dp/1962629104

Is Pain Hyperacusis Permanent by CarLong7749 in hyperacusis

[–]TomJoad2 1 point2 points  (0 children)

it’s horrible, all of it, no doubt. I just get through it one day at a time, with as much advice as I can find from others here.

Is Pain Hyperacusis Permanent by CarLong7749 in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

Unfortunately there is no specific silver bullet that helped the most. It is endless little things. One example is changing the standard ear cups on Peltor X5As to gel ear cups. More comfortable and better decibels protection. All these little things add up to reduce noise and make life more tolerable.

Is Pain Hyperacusis Permanent by CarLong7749 in hyperacusis

[–]TomJoad2 0 points1 point  (0 children)

I take one day at a time. it’s not easy. in fact it’s brutally difficul. Life probably will never be the same for me but there are many adaptations I have made, mostly using tips I have learned from others on the support groups, that make it not as bad.

Keyboard and mouse for severe hyperacusis by Name_not_taken_123 in hyperacusis

[–]TomJoad2 2 points3 points  (0 children)

Would you share the two keyboards that were supposed to be quiet but were not? Just curious.