My Long Journey: Tinnitus from Perilymph Fistula — Recent Worsening Associated with Gabapentin?

So here I am - after three years of struggling with tinnitus, now navigating the tremendously unpleasant waters of hyperacusis as well...

A bit of [fairly complicated] background: I am currently located in Japan, being stationed here for work. (Note: I do not work in a noisy environment - in fact, quite the contrary!) Back in 2019, a perilymph fistula during a free diving incident resulting in high-frequency unilateral SSNL hearing loss in >6000 Hz and corresponding tinnitus. Fortunately, the problem resolved itself, at least perceptively; whether from healing or habituation over the course of several months, my tinnitus appears to resolve.

Flash forward to 2022, and whew, it's been a heck of a year...

In early July, I became suddenly afflicted with extreme nerve pain, located in the region of my pudendal nerve (i.e. the "packet" of nerves running from my tailbone through my groin). This pain became unbearable, and after roughly two weeks, resulted in loss of muscle control in the area. I was put on Gabapentin for the pain, which was EXTREMELY successful, and examined about 20 different ways. One of those ways happened to be a colonoscopy, and wouldn't you know it: lo & behold, there's a precancerous mass. Whoo!! Doctor thinks they're related, so we schedule surgery in Hawaii, since no facilities here can handle the delicacy of the requisite operation.

In any case, I'm feeling rather comfortable on the Gabapentin, so my partner and I schedule a local snorkeling trip. Although I no longer do any deep diving, at the end of the first day, I notice some mild hearing loss, more so than I typically notice from day to day, which is almost none given the very high frequency of my existing loss. I am of course worried that perhaps I pushed it even with shallow swimming, so I opt to tell my doctor when I arrive in Hawaii. He schedules intratympanic injections, which do very little except perhaps help the tinnitus. Which, of course, I will take.

Surgery in Haaii was a complete success, and I find myself with no feelings of nerve pain and a complete regain of my muscle control. As such, I decide to taper off the Gabapentin, since the purpose for which it was prescribed no longer exists. But the tinnitus flares. When I returned to Japan, I spoke with my ENT, who despite admittedly having no actual idea, believes the Gabapentin is helping my tinnitus (at the time, I'm on 150 mg x 3). Great, I say! Let's bump the dosage back up, and see how it goes (300 mg x 3). It went quite well, I think - at least for a little while. I would have good days and bad; some days with no sound, some days with the traditional WHOOSHing and/or occasional broken-fan tinkling.

Shortly thereafter, I caught COVID-19 (hooray 2022!), but it resolved somewhat swiftly, with only the usual cough etc. as far as symptoms were concerned at that time. I continued on the Gabapentin as prescribed, but at some point, however, I noticed the tinnitus getting worse. In fact, I'm also noticing some very unpleasant new things, including very high-pitched "warbling," but the very worst of which is indescribably high-pitched, "brain frying" hyperacusis. As uncomfortable as tinnitus is, the hyperacusis is considerably more awful; with every sound, whether it's music or the sound of traffic or anything else, up goes the "SSSSSSSSSSS" until the music goes off or I close the door of my apartment. So what do I do at that time? I bump up the Gabapentin dose to 600 mg x 3. This appears to help for about a week and a half, after which the hyperacusis REALLY takes off, seemingly without any sort of prompt or trauma. It became so constant, so reactive to every noise, that my life has been significantly impacted. It's also deeply affected some of my relationships, which has added to the stress and anxiety that naturally comes with these nightmarish disorders.

That's a lot of backstory, I know... but it's for a purpose, I promise! It leads me to where I am as I type this introductory post:

My partner is wholly convinced that Gabapentin has made my symptoms worse. And I admit, there IS some question in my mind about that. Gabapentin is the one constant in my life since my symptoms have worsened, from before my weekend swimming trip to the recent worsening of symptoms; while I do believe it probably did help in the short-term (i.e. reduction in perceived loudness and impact upon first taking), my concern is that it is negatively affecting my brain's ability to adapt to the problems it's facing. It remains unknown how Gabapentin actually works, so who's to say that while I might experience short-term relief, the longer-term effect might not be deleterious? Particularly as my dosage has gone up and up? My provider is as in the dark as I am, so we're sort of in this together, equally uncertain...

I should note, I've been on Gabapentin for six months, and reiterate that getting off has been very difficult - my anxiety has been through the roof, exacerbated tenfold by the newfound reactivity of my tinnitus.

I have struggled for days with wanting to go back on the medication, if only for a few days of relief, but I don't want to lose all the work I've put into getting off. The worst is not actually knowing whether this will help... it's a wing and a prayer for now.

What I've decided to do, over the holidays and I am not working that much (a timing decision I somewhat regret, in hindsight), is taper off Gabapentin. In fact, today is my first day completely free of the drug. Now, please keep in mind, I am absolutely NOT one of these anti-medication-types; I do believe there is a role for pharmacological management when it works and doesn't cause harm! I'm simply trying to get to the bottom of what I'm experiencing, and this is the brightest idea we're come up with.

So far, the only thing I have noticed in a VERY slight drop in the volume of my tinnitus this morning, which I do appreciate since I'm one of those folks with "morning roaring." The hyperacusis is still loud & proud, but since it's been like 24 hours since my last dose, I'm at as early a stage as it gets. Tapering off Gabapentin has been a truly unpleasant experience - as many here have attested to, in fact - but I am determined to see this experiment through to the end.

In the meantime, I have been beyond heartened to read so many stories of success with hyperacusis and reactivity. Unquestionably, that has been the worst of my experience thus far, particularly because not even music can drown out the brain-frying. As I walk down the street, my ear fills with... how do I even describe it? A sound that one almost feels more than he/she hears, and while my tinnitus does spike, it's this new "SSSSSSSSSS" above all other sounds that's truly wearing on me.

As exhausted as it's made me, I will continue to try to allow my brain to adapt to this challenge, without medication this time - after all, that's what I did the first time, and it worked! - and I will report here as things progress. I will also continue to read all of the other stories of overcoming hyperacusis and reactivity, reminding myself that it can be done, and that keeping hold to that attitude is half the battle.

 

I'm on Gabapentin just now for (what I suspect) is a similar issue caused by IUD removal. The pain is unbearable, Gabapentin helps but not massively. I find my Diazepam more helpful tbh. Do you mind me asking how your pain is just now? I've had this 3 months and it's completely ruining my life.

On the tinnitus side, I'm sad to say that you'll never really know what the increase. Cumulative noise damage, Gabapentin, snorkelling, COVID-19, stress from having nerve pain. The list goes on...

These conditions are shit, particularly in combination with each other. I feel for you and hope it improves for you soon.

Hyperacusis usually improves, but in my case, I will never be able to tolerate certain sounds again without earplugs. But the good news is that it doesn't impact my day much anymore.