Tinnitus from Antidepressant (Fluoxetine) — Seeking Advice

[andronici]

Hello all,

I'm new to tinnitus and am seeking advice on how to manage it. In short, I had a severe adverse reaction to the antidepressant Fluoxetine, which caused me nerve pain as well as a ton of other side effects. I developed tinnitus a week or so after I stopped the medication, so it seems to be more of a withdrawal symptom rather than an adverse effect. 4-5 months later, I am still dealing with serious, disabling neurological issues, as well as tinnitus.

In addition to intermittent nerve pain in my head, neck, and occasionally other parts of my body, I also seem to have ear pain and ear pressure that fluctuates. I might have some mild sensitivity to loud sounds, though I'm not 100% sure. I have tinnitus 24/7 -- more constant in the right ear, in the left ear it comes in and out, and sometimes it feels more centered in my head. It's generally a high-pitched ringing or static sound, sometimes it's more like crickets. It fluctuates in volume, quality, and pitch. While it can change even when I'm sitting in silence, it seems exposure to sound causes my ear pressure and the tinnitus to fluctuate even more. Unfortunately, the tinnitus has gotten worse over the months -- it used to be quieter and less "reactive" - it was completely masked when watching tv, while now I hear it and its fluctuations frequently when watching tv. I did see two ENTs and they said I had no hearing loss or any issues with my ears.

Sometimes I will occasionally get a quiet "click" sound in my ears. It's most noticeable if I have my ear resting on a pillow. Also sometimes swallowing will change the tinnitus pitch, but not always.

I don't know a lot about tinnitus and I'm not sure how I should proceed. Since it's quite unstable, I'm also not sure what is making it better or worse. Do I need to avoid sound as much as possible? I'm already avoiding loud sounds, but maybe I need to reduce tv volume as well. Should I try listening to masking sound, or will that make it worse? Is there anything else I should do, other than give it time?

Any suggestions would be appreciated.

 

[Joe Cuber]

Hi there @andronici, I won't be able to answer all of your questions, but wanted to say that the general advice I've gotten from audiologists and also advice I see on this forum is to be in a sound-rich environment to give your ears something to listen to, otherwise, in silence, your brain tends to focus and amplify the tinnitus noise.

Some things to try to listen to are music you find pleasing, or white noise you find pleasing, or nature sounds you find pleasing. Try to have the sounds playing ambiently the background at a volume level that you find comfortable but not louder than your tinnitus, so that your mind can habituate to your tinnitus (people tend to call this "sound therapy"). This may also treat the reactivity nature of your tinnitus.

Regarding your TV volume, I'd say have the volume loud enough to excite your reactivity a bit, but not so loud that your reactivity goes haywire. This is to give your mind a chance to desensitize to your reactivity and also build resilience. Same idea goes for the sound therapy volume.

Hope that helps and welcome to the forum.

 

[andronici]

Hi @Joe Cuber, thanks for the reply! What you are saying makes sense, re: sound therapy. The thing I'm confused about a bit is that I don't have a straightforward case of tinnitus, it seems, since I'm also getting ear pain and weird ear
"pressure changes" / fullness changes (especially when the tinnitus changes pitch).

I also sometimes will get a quiet clicking noise in one ear or another. This seems to happen randomly, but I'm thinking that sound exposure might be making it worse, and that I might have some hyperacusis / noxacusis?

I'm not sure though because it's not a clear case where normal noises feel super loud to me, or hearing a sound immediately causes pain. It just seems like my ears are sensitive and malfunctioning because the medication completely fried my nerves. Which makes me wonder if I should actually be avoiding sound. I guess I can keep a tinnitus journal and try to track my symptoms to see if I can see any patterns.

 

[Joe Cuber]

Sure things @andronici -

I also sometimes will get a quiet clicking noise in one ear or another. This seems to happen randomly, but I'm thinking that sound exposure might be making it worse, and that I might have some hyperacusis / noxacusis?

I see, I can understand your concern about trying sound therapy at this point. Given what you're describing, I would opt to avoid sound therapy too--you know your situation best. It's interesting to me that your ENTs didn't find anything with your ears. The way you're describing your symptoms, I would have guessed that you had some fluid build up or Eustachian tube dysfunction. Did they put a tube in your nose to look at your Eustachian tubes?

I've heard of at least one person say that they had delayed hyperacusis/noxacusis response to noise (I believe it was @LilCC talking about his dogs barking). A journal might be a good idea to spot patterns.

By the way, there are a few threads on this forum about reactions to Fluoxetine. You might want to search for them if you haven't done so already.

 

[andronici]

The way you're describing your symptoms, I would have guessed that you had some fluid build up or Eustachian tube dysfunction. Did they put a tube in your nose to look at your Eustachian tubes?

No, they did not. I did standard hearing tests and they looked in my ears and that was it. I'm not sure if the examination or the tests they performed would be able to show fluid build up or ETD.

 

[Joe Cuber]

I see, one thing an ENT may do is stick a tube into your nose to check whether your Eustachian tubes openings are okay. It's a relatively painless and fast procedure. I'm surprised they didn't do that given your symptoms. For fluid build up, sometimes they're able to spot it based on how your eardrums look like.

Did they prescribe any steroids?

 

[andronici]

Did they prescribe any steroids?

No, they did not. Tbh I don't think I would be able to handle the steroids in my current state because my nervous system is highly sensitive. :/

For questions about my specific situation, do I ask them on this thread, or should I ask on the support forum?

I'm going to try to follow up with an ENT to rule out other causes, but since this all started with the antidepressant, my sense is that it's a nerve issue. Is fluctuating ear pain and pressure changes / fullness something that can happen with new on-set tinnitus? Mine I guess is caused by something like ototoxicity rather than sound exposure.

 

[andronici]

I feel like I'm not doing a great job of describing my symptoms, but I just wanted to post an observation: I've been reading a little more on this forum, and I'd say I relate most to the descriptions of acoustic shock. But it seems like the nervous system shock was caused by a chemical rather than a sound in my case.

 

[Joe Cuber]

For questions about my specific situation, do I ask them on this thread, or should I ask on the support forum?

You'll probably get more visibility if you post in the Support forum. The moderators will expect that you first search for the topic you'd like to post about in case there's already a thread for it. They prefer you add to an existing thread rather than starting a new thread on the same topic.

Is fluctuating ear pain and pressure changes / fullness something that can happen with new on-set tinnitus?

I have heard of that happening. If you post about it, hopefully someone who has that experience will reply.

I've been reading a little more on this forum, and I'd say I relate most to the descriptions of acoustic shock. But it seems like the nervous system shock was caused by a chemical rather than a sound in my case.

That's interesting, acoustic shock is noise induced, but you're saying you're getting the same symptoms from Fluoxetine? I wonder if the Fluoxetine threads describe the same symptoms you're experiencing.

 

[andronici]

I'm experiencing a worsening due to stupidly agreeing to watch a movie with my family two days ago. They turned the volume up too loud part way through -- I should have left then. Honestly feeling suicidal.

Is there anything I can do other than be very vigilant about avoiding noise going forward? What about things like shower noise?

 

[Joe Cuber]

Hey I've been there, it often gets better in time. I hope you can give yourself time and kindness and try not to blame yourself. How's your sleep been going?

 

[andronici]

How's your sleep been going?

Sleep is not great, unfortunately. It was getting better, though. I'm hoping it doesn't worsen because of this.

Tinnitus is on average a bit louder now and my ears are going pretty haywire. I also now have an annoying but faint morse code tone.

I'm still confused about how much sound I should be avoiding. I'm not sure how to tell what sound is going to make things worse. I guess I need to air on the side of caution and if I have any doubts about something seeming "too loud," avoid it.

 

[Joe Cuber]

I'm still confused about how much sound I should be avoiding. I'm not sure how to tell what sound is going to make things worse. I guess I need to air on the side of caution and if I have any doubts about something seeming "too loud," avoid it.

For myself, what I learned is that there are 3 aspects of a sound that I'm mindful of: quality/characteristic, loudness, and exposure duration.

Certain sounds have a quality/charactertistic that I've learned triggers my tinnitus. Like, fan noises, road noises, these with cause my reactivity to elevate. But the sound is low enough I can withstand it for much longer than if it's loud. For instance, I can hear a low fan the whole night with just mild elevation, but I can only hear road noise for a couple of hours before it spikes my tinnitus for the rest of the day.

So it's not an all-or-nothing. You might learn that you can withstand any sound for a long duration of it's quiet enough or even a short duration if it's loud.

For me it took a lot of trial and error to know my boundaries. And I'm still learning.

 

[TLion]

I can in so many ways relate (nerve pain, ear pressure, clicking, highly sensitive nervous system, not feeling like normal tinnitus/hyperacusis). As you know, my symptoms came from tapering Paxil and reinstating it.

How are you now? Did some symptoms subside?

 

[andronici]

How are you now? Did some symptoms subside?

My nerve pain, ear pressure and burning ear pain are pretty much gone. I still have clicking / popping, but not as much. My nervous system is still highly sensitive and I still have tinnitus and hyperacusis. I think my hyperacusis and tinnitus are gradually getting a little better, but it can be hard to tell because progress is so so slow.

Instead of having burning in my ears, I have chronic TMJD / muscle tension issues in my face and jaw, which is exasperated by sound and stressors. Sometimes it's just uncomfortable tightness, like my jaw muscles are permanently contracted, but if it gets bad enough, it does become painful. This seems to be getting better very slowly.

I do at times consider trying to reinstate a small dose of Fluoxetine or try a small dose of another med when the symptoms get really bad. It can be hard to tell if I'm actually getting better, since things are so up and down, getting better, then getting worse, and "improvements" are very gradual. I think going back to meds though in my condition is somewhat high risk because of how sensitive / destabilized I am, so I'm trying for now to stay the course. We shall see.