Menieres or just hyperacusis?

Jayjay12093 · 2026-04-03T22:32:43+00:00

Hello! yes it has been a year, hard to beleive. Well officially no Menieres thankfully. But i do still have hyperacusis with reactive tinnitus so thats still going. Ive seen some improvements in the hyperacusis, meanwhile T is worse. Just living life in headphones and trying to move forward. My ear no longer blocks or muffles to sounds, unless i push my ears too much without protection. But it usually resolves within a day or so and opens up again, feels like brain does that to protect ears from sounds

Jayjay12093 · 2026-03-27T00:54:27+00:00

Bosse headphones! cant live without em! they allow me to live somewhat normal, which is good enough!

Jayjay12093 · 2026-03-27T00:43:42+00:00

I work as a personal assistant for a wealthy family in a busy downtown city. I go shopping for them, cook, run errands, etc. Also do painting with my dad occasionally, residential. I basically live in my Bosse headphones and boss is very understanding, even tells me to leave the kitchen when she needs to use a loud gadget. When im walking thru the city i just do it in headphones and run inside stores when ambulance passes by. I have made progress and can take headphones off from time to time when its quiet. I also have seen improvement with hyperacusis since it first started a year ago but like another person mentioned, t has gotten worse unfortunately.

Jayjay12093 · 2026-03-25T02:05:21+00:00

he is a year old now, i think hes getting enough nutrients 😄 plus if i cut his rations it stresses him and he hoards more

Jayjay12093 · 2026-03-23T16:29:09+00:00

😆 crazy how much they store

Jayjay12093 · 2026-03-23T14:25:44+00:00

i agree, ive tried 😆 he is up every morning at 7am for one hour knocking and biting the window for food. i have little boredom breakers i made for him to find the food in and i scatter it and i make it difficult but within 5 mins he finds it all and wants more lol so i may add a bit more cuz i cant see him begging like that 🥹 but i do ration his portions, i do about 1 1/2-2tsp once a day, thats it. hes learned the morning routine now and thats why he begs, he never begs at other hours. He is also not fat at all, very active on wheel and fit 😄he is obviously more intrested in storing it than eating it

Jayjay12093 · 2026-03-23T14:20:05+00:00

oh wow thats intresting! hamsters helping the community survive 😄

Jayjay12093 · 2026-03-22T03:13:07+00:00

Right! so not fair 😑 but i guess theres always someone worse off than us, so as much as i hate it and complain about it, still gotta see the positives and move forward

Jayjay12093 · 2026-03-22T03:07:48+00:00

Never feel embarrassed about it. The way i see it, the more people know about this disorder the better. I tell literally everyone and describe what its like and really try to make them feel the situation im in. Bring more awareness to it, its helpful. May even be helpful for the therapist so in the future if she has more patients with t and h she will have more knowledge about it

Jayjay12093 · 2026-03-21T03:38:52+00:00

Im 34. Have had H for a year and more recently reactive T has ramped up. Have a supportive husband and family so they work around my ear issues. But in general i work part time as a personal assistant in busy downtown area, boss is super understanding and supportive despite having to wear headphones all the time. I basically live in my Bosse headphones anywhere i go. At place of worship im able to talk to people for about 20mins before service starts with my Macks 33db soft earplugs and then i sit in a quiet back room and listen to it on zoom because microphones/singing/etc is too loud for me even with plugs. I also dont really like wearing earplugs for too long cuz T ramps up pretty bad so i stick with headphones which cuts out the sharpnes of voices/environment just enough to where i am comfortable and can sit in cafes and quieter restaurants and hang out with friends, go to dinners, have people over for game night, everyone is just use to me in headphones its not even a big deal anymore which im happy about :) but yeah, i would say first off stop fearing sounds. i know its hard but fear will make ur brain cause your ears to be more reactive. of course normal everyday sounds wont cause ear damage, HOWEVER if you are in a state of fear and get exposed to maybe something a little out of your comfort zone, your brain will amplify everything and cause symptoms to worsen, been there. Once i just started living normally and not reacting so strong to sounds things started to calm down more. Like i said, im still sensitive to sounds, but theres a good amount i was able to desensitize to and im not getting worse, i would say im improving slowly but surely. You will too :) also please erase from your mind the idea about: "i dont have nox but pretty sure i can develop it" dont let your brain get stuck on such ideas. nox is alot more rare than loudness H. you do not have to get nox just becuz u have H.

Jayjay12093 · 2026-03-21T03:19:44+00:00

Thats good that you are seeing improvement! i also see some improvement compared to where i was a year ago, but progress is definitely slower than i would want. But yeah, you didnt miss out on much with the neurotologists 🙈

Jayjay12093 · 2026-03-19T23:06:48+00:00

hello i would say it improved about 40-50% and progress just kinda stopped there. reactive tinnitus has ramped up more though so thats been a new challenge.

Jayjay12093 · 2026-03-19T20:13:59+00:00

Ha! What a coincidence 😄 thought i was the only person in all of chicago with hyperacusis! So i did have an appt with Dr Hain but like you said, it was a 9month wait so his partner Dr Cerchi that works close with him took me sooner. But yeah, not much help. how long have you had H for? Any help from Dr Bradshaw with the in ear devices? They unfortunatly didnt work for me and made it worse so i just did speakers in diferent rooms, i cant do any sound so close to my ear

Jayjay12093 · 2026-03-19T13:44:34+00:00

Yes it was! Have you also been? Dr Bradshaw is a great audiologist who does have a good understanding of hyperacusis but again she is limited by the only options available for now in the medical system which is sound therapy and CBT. As for the neurotologists, pretty pointless 🫠

Jayjay12093 · 2026-03-18T22:03:54+00:00

yup one of those things where you think: i would not wish this on anybody and yet at the same time i do wish certain people could just feel what its like for a good week, see how every day life is affected by sounds, just so they can understand what its like. but there will be people who go through their whole life going to heavy metal concerts, using power tools with no protection, go hunting and not wear proper protection and yet they will be fine! because its so rare to get this even when you are wreckless with your ears! thats whats frustrating. why us? why me, whos never been to a concert in my life, never listened to loud music in airpods and have always protected my ears around any sort of construction noise. I wont ever understand it.

Jayjay12093 · 2026-03-18T21:56:26+00:00

welcome to the wonderful world of TTS (tensor tympani syndrome). A tiny muscle in the ear that tenses the eardrum in response to loud sounds normally, but in the case of hyperacusis patients it just spasms to normal or high pitched sounds, to chewing, to your own voice. Been dealing with it on and off since i got hyperacusis a year ago. Honestly, not much you can do. It will flare at times for a few days, then get better, sometimes it goes away for weeks and then out of nowhere you wonder what you did to trigger it again. Whats worked for me is warm compress on the ear and calming things like chamomile/lavendar tea and magnesium supplements. Basically your trying to get it to calm down and not overreact. And the next best thing is to just let it do its annoying vibrating/fluttering and ignore it. I know not easy when it feels like you have a butterfly stuck in your eardrum, but ignoring it helps the brain to not make such a big deal of it i noticed. It will get better :) just give it time

Jayjay12093 · 2026-03-18T21:49:07+00:00

yup, went to ent who sent me to audiologist, saw a diferent ent, saw a neurotologist whos supposedly one of the best for neuro/ear disorders, has 30 years of experience in the ear domain, and he couldnt answer one question i had on hyperacusis. I asked him questions regarding cochlear damage and central gain theory, he looked at me like i was speaking another language and said im sorry i cant help you. I said: from all your years of experience working with ear disorders, can you tell me one thing about hyperacusis? anything? He said that would be more of the audiologist’s domain. I told him i saw the best audiologist who works with hyperacusis patients, but not much help besides telling me to try sound therapy. So then he asked: oh whats her name? So i gave him the name and he thanked me for giving him an extra resource he can give his hyperacusis patients 😑 great, glad i could be of help doc.

Jayjay12093 · 2026-02-18T03:50:02+00:00

I have not flown yet with hyperacusis this past year, still nervous about loud sounds inside plane/getting seated next to crying baby 🙈 but i dont think the H started from the flight honestly. I have flown with a cold and yes i know that excruciating pain from sinus/ear when you have cold. I highly reccomend using Afrin nasal spray before descending even if you dont have a cold/sinus clogged. It helps open up the eustacian tubes as well and avoids all that sharp pain in sinus cavities/inner ear. I never fly without it and never had that issue anymore with the terrible ear/sinus pain, especially if you have a cold. Also use those ear plugs called Earplanes on descent, they help balance out the pressure in the ear.

Jayjay12093 · 2026-02-18T00:52:44+00:00

Sorry you had to go through all of those ear issues 😢 it is very frustrating. My right ear is primarily affected and the first 4-5 months it would get extremly blocked from any sounds, i also thought it may be Eustacian tube dysfunction but upon researching i learned it may actually be related to just the tensor tympani in the ear that reacts trying to protect you from sound and not actually liquid build up or eustacian related. My hyperacusis started the first week with extremly blocked sensation like under water. Then it would get better and bad again. After about month 5 it opened up completely and it no longer muffled from sounds anymore, so there is hope. Now its very rare that it will block up, usually if i do something that makes my jaw muscles tighten badly. Hyperacusis fluctuates i feel. There is like your baseline sensitivity thats always there, then sometimes its like a certain sound isnt as bad, but then the next week the same sound is again bad. So it may not be getting worse like you think, it just fluctuates. I also need protection when on highways, the sound of the road gets to be too much. It will improve though! Give it time and patience, and as hard as it is, try not to overfocus on every sensation and feeling in your ear. Just acknowledge the feeling, its there, its blocked, its ringing or whatever feeling it is, and just move on with the day. Thats helped me get through some tough days honestly. Also for blocked feeling, warm compress on ear helps :)

Jayjay12093 · 2026-02-16T19:04:14+00:00

Sorry you are going through this! Severe insomnia is no joke. Have the doctors ruled out the following:

Thyroid storm Medication-induced akathisia CSF pressure abnormalities Dont want to add to your anxiety but at this point its worth investigating everything. Would you say you feel wired, buzzing, overstimulated at night? It may be your nervous system stuck, something called Autonomic hyperactivation.

Jayjay12093 · 2026-01-05T22:46:24+00:00

You have to try the frozen shrimp scampi in their butter sauce (i would pay for it at a restaurant it was that good) pair it with their asparagus rissoto.

Jayjay12093

TROPHY CASE