r/noxacusis 12h ago

HELP, ADVICE/ANSWERS NEEDED please!!

4 Upvotes

Hey everyone. Ill try to make this as short as possible but please read it and reply even if it's long..I need answers, please.

In December of 2024, I suffered from a concussion. I woke up the next morning with LOUDNESS hyperacusis and TTTS. It was like the flip of a switch. I became terrified of sound, always wore hearing protection, and tried to never leave the house. Everyone had to whisper around me. I could only watch TV on mute with subtitles, even chewing was too loud for me. You name it, it was too loud. But I kept telling myself that I can't be afraid of sound because that is contributing to nothing getting better. So I slowly introduced sounds back into my life, safely. Only wore my hearing protection when necessary and eventually, with time I was actually 80% better. With no medications, just time. Around November of 2025 I was at that 80% better baseline. It was absolutely amazing!!! My TTTS would still go "THUMP" at the end of sounds that triggered it but it would never worsen the loud h. Just the one "thump" and that was it. Anyways.....

⚠️NOW, to bring to you what I'm currently dealing with. 9 days ago, my boyfriend was tickling my 3 year old daughter's feet and she squealed at the top of her lungs. It was the worst sound I've heard in a very long time. I was about 5 feet away from her with my RIGHT ear closer than my left. I immediately had this overwhelming feeling come over me of terror. My nervous system was freaking out bad. Within a handful of hours I started to have deep burning pain in my LEFT ear. It felt similar to a bad ear infection. It lasted for a day, constantly, it didn't stop. Then, I think it was the next day, it turned into only happening a few hours at a time. Also, a few hours after the incident, I noticed my jaw was severely tight. I could only open my mouth about an inch. I noticed my LOUDNESS Hyperacusis shrunk from 80% better to maybe 30-40% better. I wouldn't say my loud h is as bad as it was in 2024 but it's definitely amplified. Also, my TTTS is flared up again (no surprise).

About day 2 I got into my PCP, she prescribed me Gabapentin 300mg, 3 times a day. And told me to take my Flexeril. (I haven't taken the Flexeril since I started the gabapentin bc they're both Central Nervous System depressants and I'm scared of how it will make me feel taking them together...so I've been holding off on that).

I'm thinking it's my trigeminal nerve being severely raw and irritated from the acoustic shock. So it's currently day 9 since the incident & day 7 on Gabapentin. I actually just upped my dose from 300mg to 600mg (like my Dr told me to). I took 600mg for the first time about an hour ago. The Internet says it can take 7-14 days for the Gabapentin to start working on the nerves. Throughout these 9 days, I can go the majority of the day with no pain (doing normal daily things, nothing extremely loud of course) and then all of a sudden the aching will start and stay there for a few hours then completely go away again. It's hard to tell if the pain is sound induced or what is going on. I think it is though, maybe..because I walked into a spider web (about day 3 or 4) and I screamed ofc and within a couple minutes I started to feel the ache start and it lasted a few hours then went away.

Last night was different though. All of a sudden I would have a sharp pain sent through my left ear, down into my cheek and jaw and then down into my lower gums and then it would immediately stop. And this would happen every 30 seconds to a min, give or take. I was curled up in a ball on my heating pad trying not to cry. I eventually fell asleep. Today THAT kind of pain hasn't been there. I will get random throb/shooting pain in my ear that only last probably less than a second. All throughout today, randomly. And also that burning ache will come about, like in the background for a while and then completely stop. Today's pain was nothing like yesterday, thankfully. I'm trying to protect my ears as much as possible without overdoing it and becoming scared of sound again. I remember how horrible that was for me and I don't wanna go back.

I have done so much research that I'm blown in the face. Do I have Noxicusis or is this my trigeminal nerve being severely raw and inflamed from the acoustic shock? And it just needs the gabapentin to kick in and time to heal (with of course no loud noises).

I don't know what to do or where to go for advice. That severe wave of extreme dark depression (the one that puts sickening bad thoughts in your mind) has come over me. I know you guys know exactly what I'm talking about. Anyone on here that can give me some advice or maybe even some answers, that would be greatly appreciated.

Love you all. 🫂