How I'm Dealing with Pain Hyperacusis — Documenting My Journey

Hi there! I'm 22, and I've been diagnosed with hyperacusis for almost a week.

I have a history of problems with my ears, my Eustachian tubes were trash, and I constantly got middle ear infections. I had ear tubes at a young age and that seemed to fix the job almost permanently. I had a few infections and swelling if it was allergy season but that was manageable. I had further problems if I was in a car driving down hills or if I was flying my ears wouldn't equalize on the descent. I also had a history of listening to loud music through earbuds.

A few months ago I was noticing I was having some itching and slight pain if I was listening too loudly or for long periods of time, I scaled back for a couple days and went straight back to it. One day, I was listening at a lower volume without earbuds and I got the worst pain ever. I thought it was an infection at first but I thought otherwise afterwards because my ear usually pops. My hearing in my bad ear (the one I got infections in a lot) has still got the fullness feeling.

Of course I couldn't get an appointment with my ENT right away, so I had more setbacks until my tinnitus increased. Now it's a constant quiet tone and only increases with pain or anxiety.

When I had a visit with him, he diagnosed me with hyperacusis and gave me useless advice, which felt great at the moment, but I realize probably set me back further. Basically he said sounds can't hurt you so don't overprotect.

I wasn't protecting as much as I should've until today, which the lead up was a worsening of my symptoms (all the time tinnitus, stabbing pain, extremely hypersensitive to noises, throbbing in my head and ear, middle ear tensing a lot, sensitive to earplugs). So today I felt like I actually improved with 24/7 double protection! I was really careful about exposing myself to practically any noise, especially my own voice and my partner's. And I seemed to last without pain until right now!

I'm trying to find a quiet room, but I don't have access to one because I live in a basement apartment and our landlord is upstairs. So that definitely makes sleeping situations a bit harder. I'm going to sleep with earplugs and earmuffs tonight and see what that does.

Does anyone have any suggestions on what I should do to protect more? I'm trying to learn my triggers which is hard because I have delayed pain most of the time. I'm trying to listen to my middle ear more when it twitches. Thank you!

EDIT: forgot to mention this, I'm going to see Sabrina DeToma in Vaughan, Ontario, Canada in a month. Has anyone had any positive experience with her?

 

Update:

So I'm doing a few things that I notice are helping.

For one, about 3 months now, I've been staying at home and protecting 24/7 with double protection. I probably would've seen more improvements if my living situation was a bit quieter but we all do the best we can with the cards we're dealt. I avoid situations at home that make my symptoms worse, like the computer fan, artificial audio, and loud sounds.

The second thing I've been trying is a very strict diet. For about a week now, I've been implementing the low histamine diet. I've only been eating rice, chicken, brussel sprouts, corn, and potatoes. I also practice all the storage requirements for the meat and leftovers. I plan on adding a DAO supplement as well to combat histamine.

The final thing I've been practicing is DNRS with the Curable app. I don't know if I've been seeing any improvements yet with my symptoms, but it's made my constant anxiety attacks soooo much better. I've also been trying to stay consistent with 8+ hours of sleep per night and my water intake.

With all these changes, I've seen a miraculous improvement in my symptoms. Not for my LDLs, but for my noise exposures and setbacks. I've had multiple noise exposures this week, from using clippers on my hair and giving myself barotrauma from earplugs, to my partner dropping a bunch of ceramic plates and breaking some of them by accident. I haven't felt a worsening yet.

Instead of needing a week to recover from setbacks, I now need a day or two. It's honestly incredible in my eyes, as I didn't think I would start seeing improvements so soon.

So I'll be keeping up with these treatments. I'll let everyone know how things are going in a few months, hopefully with even more improvements. Take care.

 

Yay! So happy for you & that you've found a system that you feel works. Just a wee piece of friendly advice, if I may: Since you're on a diet, I would do some research to make sure you're getting all of the necessary vitamins & minerals from the foods you're eating. Supplements &/or a multivitamin can be helpful as well.

Congrats again on the improvements; I just know they will keep coming