Three Routes to Winning Tinnitus: Healing, Habituation and Hushing?

[Jupiterman]

In the past few months I have noticed a pattern day-to-day.

I have good (4/10), bad (8/10) and OK (6/10) days. This represents a change from months ago where it was always bad days.

The pattern for the past 20 days has been: B, G, OK, B, B, G, G, G, B, B, G, OK, B, B, G, G, OK, B, G, G.

When I wake up in the morning, listening to my tinnitus, I can determine what type of day it will be. I'm also getting fairly good at predicting the day before what the next day will be like.

The day never changes its type during the day. It's only sleep that can change the day's designation (for the following day).

If you look at the pattern you'll notice that there is never an OK day between a subsequent bad and good day. It only goes straight from bad to good days.

I have a theory why this happens?

I think my (subconscious) brain is realising that my tinnitus noises are superfluous. I think that during the day my brain is monitoring the tinnitus noises, then at night, during sleep, it takes remedial action to try and quash the tinnitus noise ONLY if my brain deems it to be necessary.

So when I have a couple of bad days in a row, I believe my brain has reasoned "enough is enough" so it reduces the tinnitus signal during sleep that night; hence the immediate jump from bad to good day the following morning.

When a good day occurs, my brain doesn't make as much of an effort (if any) the following night as it doesn't perceive the relatively calmer noise as a threat, so leaves it.

This of course gives the tinnitus the edge so it gradually gets louder over the next few days; going from Good, to OK and then finally to Bad again. At which point my brain realises "Oh there's that noise getting too big for its boots again. I will deal with that tonight" and this process continually repeats itself.

It's a cyclic process over every 4-5 days.

I do not think this is healing or habituation. I believe it's my brain slowly-but-surely trying to hush the tinnitus.

So Healing, Habituation and Hushing. Perhaps these are the three possible routes to winning this?

 

[Utdmad89]

But wouldn't your brain trying to hush the tinnitus mean healing or habituation?

 

[DeanD]

Whether it helps to have a different data set, I have also been monitoring something similar including food intake, weather, noise intake for the day, hours sleep, type of tinnitus. I too have similar tinnitus where sleep changes it pretty much every night.

Here are the results of my last 20 days, in case there are repeating patterns across more than one person going through this.

Key: G = 4-5, OK = 6-7 and B = 8+ (by my standards of course as I can't compare to you - unfortunately good days are very seldom as you can see):

G, G, OK, B, B, OK, OK, OK, OK, B, OK, OK, OK, OK, B, B, B, OK, B, B

FWIW - below are the primary noises each day for the past 20 days. Key: B = Buzzing, T = Tonal and H = Hissing:

T, H, H, H, T, B, H, B, B, T, B, H, H, B, H, B, B, H, T, T

It can change during the day depending on what noise I am subjected to. Lawnmowers, work calls, microwave, and ambient noise outside without earplugs, all increase the pitch.

Sleep though plays a massive part in my tinnitus too.

The amount of sleep, food, alcohol, caffeine etc. seems to play no part - the only pattern I can see which differentiates whether the tinnitus will get worse the next day is through noise exposure, even when trying to protect.

If I could find the pattern that simply unlocked a day of a 4-5 out of 10, I'd be 75% cured, if I could unlock a pattern that gave me more hissing days, despite being a 7-8 in loudness, I'd be 75% cured - take away reactivity and I'm 90% of the way there!

I think many of us, although looking for a cure, would take certain controls to be able to get the majority of the life back.

 

[GG_Ear]

@Jupiterman, this is an interesting observation. I hope the changing nature of your tinnitus means it's improving in the long-term.

I never try to 'judge' or purposefully 'observe' my baseline tinnitus anymore, I just sometmies notice it's there, but it doesn't bother me for long and I easily get distracted by something else more interesting. Guess I'm lucky in that it's quite moderate.

It's just the high-pitched reactive whistle tone in my right ear that is bothersome. And the intermittent pain of course...

 

[Joe Cuber]

Hey @Jupiterman, thanks for posting this. I can relate with your -- and @DeanD's -- experience. In my case, my tinnitus is highly cyclical and rather predictable. Like you, I can pretty much tell what kind of day I'm having the moment I wake up. With notable exceptions, what I wake up to is what I get for the day. The notable exceptions have to do with my ability to calm a bad or okay day down to a good day when I first wake up. I've written about it before, so I hesitate to repeat unless you'd like me to.

Below is a graph of my days. In my case, my bad days are always preceded by a good day, and my okay days typically follows a bad day. My cycle these days is roughly like this: B, OK, OK, OK, G, B, OK, OK, OK, G, etc.

I have a different hypothesis as to why mine gets loud. I feel like mine has something to do with my breathing. I have sleep apnea (I believe @DeanD does too, incidentally), and I think that I hold my breath a lot in my sleep (my wife has noticed that I do). I think I hold my breath a lot in my sleep because, during the day, I often find myself holding my breath a lot, especially when I'm concentrating on something. As to why holding my breath results in tinnitus eludes me, but I do notice that I tend to have tenderness around my scalp and neck that comes and goes on the same cycle as my tinnitus. So, my pet theory is that holding my breath causes fluid to build up (like cerebrospinal fluid).

I also wanted to mention that my cycles are increasing in length. Back in February, I used to get a bad day every 3 days. Now, it's more like every 5-6 days.

 

[DeanD]

I often find myself holding my breath a lot, especially when I'm concentrating on something.

I do this too.

 

[Jupiterman]

But wouldn't your brain trying to hush the tinnitus mean healing or habituation?

I think healing, habituation and hushing (this one I made up of course) could be three distinct and separate processes to 'reduce' tinnitus.

If I may address each in turn.

Healing would be the physical repair of biological damage within the auditory apparatus. There are some people who report their tinnitus disappearing within a few days, a few weeks or even a few months and sometimes longer. These are the lucky ones who get complete resolution of their tinnitus; effectively they heal to the point they were pre-tinnitus.

Habituation is the process by which the person hears the tinnitus for so long that the person/brain eventually gets accustomed to it and is no longer bothered by it. The person, although still hearing the tinnitus as loud as it ever was; it has no emotional impact on the person whatsoever. In attitude, it's as if they don't have tinnitus.

Hushing is the process by which the brain, after hearing the tinnitus for so many months, attempts a phased reduction in the loudness of the tinnitus. Be clear; this is an actual reduction in loudness of the tinnitus, not a 'putting to the back of mind' or perceived reduction.

I do not think I am experiencing healing as that wouldn't explain the good and bad days? If I had healed, then surely the tinnitus wouldn't go back to being bad?

I do not think I am experiencing habituation because I am still very much bothered by my tinnitus.

I wonder if 'hushing' is a natural process that occurs when healing and habituation fail?

Perhaps everyone's brain, just like everyone's personality, is different and not everyone is capable of all three of these remedy processes? For example; perhaps you are capable of habituation but not hushing or you are capable of healing but not habituation?

For the record; I believe my tinnitus is severe. I have multiple reactive noises that are loud and rather intrusive. In the past two months or so though, I have noticed these patterned reductions and increases in its loudness.

 

[Cmspgran]

Very interesting and logical theory @Jupiterman. How's your reactivity been, would you include that in a part of your improvement/increased better days?

 

[Jupiterman]

Very interesting and logical theory @Jupiterman. How's your reactivity been, would you include that in a part of your improvement/increased better days?

Thanks for your opinion. It is interesting to hear other people's thoughts on this. It could be something or it could be nothing.

Like everything with tinnitus, time will tell.

During the good days, my 4/10 days, the reactivity is less reactive. It takes louder sound to vamp up my tinnitus and even then will only go up to 5/10 and will come down sooner.

However on 'OK' and 'bad' days, the reactivity is as horrendous as it was 6 months ago.

 

[Joe Cuber]

Perhaps this hushing phenomenon is a form of healing, like the brain rerouting or forming new pathways (a la placticity).

If I had healed, then surely the tinnitus wouldn't go back to being bad?

I did get the opportunity to speak with a doctor who conducts neurological tinnitus research. I asked him if he knows why my tinnitus is cyclical -- why do I have days when I don't hear it and days when it's loud. He didn't have a solid explanation, but he did say that there's research to indicate that our brain can keep track of cycles longer than the usual daily circadian cycle. For instance, there are aspects of our brain that can keep track of 7-day cycles.

So perhaps sleep causes the brain to switch to the next index of a multi-day cycle, and each index is a separate pathway of neurons.

I, of course, don't know what the hell I'm talking about.

I do know that my cycles' periods are increasing. They used have a period of 3 days (B, OK, G, B, OK, G, ...) and now they have a period of 5-6 days. Also, my okay days have become noticeably quieter (my bad days still suck though). The analogy I imagine is an oscillation with decaying amplitude and frequency:

If you look at the pattern you'll notice that there is never an OK day between a subsequent bad and good day. It only goes straight from bad to good days.

One of the things that's strikingly different from your experience and mine is that you go straight from Bad to Good, whereas I go straight from Good to Bad. So whatever theory there is about these cycles, it ought to account for this difference, I would think.

 

[Jupiterman]

I just noticed @Joe Cuber that we both started our tinnitus journey within one month of each other.

You absolutely appear to be the person who is having the most similar tinnitus experience with myself, albeit I envy your silent days.

You have been experiencing this cyclic phenomenon since March? So you are certainly ahead of me.

I like your analysis and photo of the dampening wave, with continually decaying frequency and reducing amplitude (energy). I sincerely hope I will experience this gradual 'hushing' as well.

What we all know for certain is that any improvements with tinnitus tend to be incredibly slow, almost barely detectable. This is why I keep an accurate record, it helps notice any improvements.

I think what you say about an entirely different set of neuron activity makes sense. Yesterday and the day before were TERRIBLE days, pure 8/10 hell. I absolutely knew I was due to wake up this morning with much gentler noise and I did! If my tinnitus could stay the way it is on these good days, I'd consider myself 80% cured. My good and bad days are as stark different as night and day.

If I may ask you another question. Do you engage, or take more risks with sound on your good days? And if so, how does it subsequently affect your tinnitus?

 

[Joe Cuber]

You absolutely appear to be the person who is having the most similar tinnitus experience with myself, albeit I envy your silent days.

Hey @Jupiterman - I have to agree, it seems like we have similar experiences, and @DeanD also seems to experience daily fluctuation.

You have been experiencing this cyclic phenomenon since March?

Mine did start at the end of March 2022, and it was immediately daily intermittent. It was far more chaotic in the beginning, probably because my sleep was a complete mess. My tinnitus would erupt and pause randomly during the day back then. But, even from the beginning, I'd get whole days of silence. It confused the hell out of me for sure. I thought I was causing it to go silent somehow, so I was on a wild goose chase trying to figure out what things I could possibly be doing to trigger it and to stop it. Turns out, it was just daily intermittent, and it was just doing its thing, switching during my sleep.

I sincerely hope I will experience this gradual 'hushing' as well.

I really hope so too. If we track carefully and are each able to detect a dampening over time, that would be incredible evidence.

I absolutely knew I was due to wake up this morning with much gentler noise and I did!

So glad to hear you get breaks from the bad days.

My good and bad days are as stark different as night and day.

I totally agree. It's mind blowing how different the days are. Like, why does it have to keep switching between these states? My Good, Bad, and Okay days are quite distinct, as I'm sure yours are. They each have their specific characteristics. It's easy to tell them apart, and I can tell what day I'm having as I'm waking up.

What we all know for certain is that any improvements with tinnitus tend to be incredibly slow, almost barely detectable. This is why I keep an accurate record, it helps notice any improvements.

Totally agree, same reason I also keep an accurate record. I only started recording in February this year, which is how I finally was able to determine mine has a cycle. Prior to that, it seemed random (or else was random enough that I hadn't noticed a pattern), but I wish I had data since the beginning.

If I may ask you another question. Do you engage, or take more risks with sound on your good days? And if so, how does it subsequently affect your tinnitus?

When my tinnitus started, I developed some rather severe reactivity. On good days, it would readily spike and I would hear it for the rest of the day, and it would reset by the next day. I followed my audiologist's advice to do occasional sound exposure, and to live in a sound rich environment, including during sleep. I'll have to review my notes, but I believe at around 9 months since onset, my reactivity started to heal.

I still have reactivity today, but it's rather minimal, just a sliver of what it used to be. I have to really listen for it to hear it, it sounds like a tiny whistle. So, these days, I don't do anything too special -- good or bad days -- to protect against sound other than avoiding obviously noisy things, which I would have done normally anyway. So TL;DR, these days, sound doesn't affect my tinnitus much, just a small bit of reactivity that typically settles within the day.

 

[Forever hopeful]

Whether it helps to have a different data set, I have also been monitoring something similar including food intake, weather, noise intake for the day, hours sleep, type of tinnitus. I too have similar tinnitus where sleep changes it pretty much every night.

Here are the results of my last 20 days, in case there are repeating patterns across more than one person going through this.

Key: G = 4-5, OK = 6-7 and B = 8+ (by my standards of course as I can't compare to you - unfortunately good days are very seldom as you can see):

G, G, OK, B, B, OK, OK, OK, OK, B, OK, OK, OK, OK, B, B, B, OK, B, B

FWIW - below are the primary noises each day for the past 20 days. Key: B = Buzzing, T = Tonal and H = Hissing:

T, H, H, H, T, B, H, B, B, T, B, H, H, B, H, B, B, H, T, T

It can change during the day depending on what noise I am subjected to. Lawnmowers, work calls, microwave, and ambient noise outside without earplugs, all increase the pitch.

Sleep though plays a massive part in my tinnitus too.

The amount of sleep, food, alcohol, caffeine etc. seems to play no part - the only pattern I can see which differentiates whether the tinnitus will get worse the next day is through noise exposure, even when trying to protect.

If I could find the pattern that simply unlocked a day of a 4-5 out of 10, I'd be 75% cured, if I could unlock a pattern that gave me more hissing days, despite being a 7-8 in loudness, I'd be 75% cured - take away reactivity and I'm 90% of the way there!

I think many of us, although looking for a cure, would take certain controls to be able to get the majority of the life back.

I am so with you. At this point I would just be happy with improvement. Forget the cure. My tinnitus has just changed exponentially in the last weeks. It is so high-pitched that it almost makes me sick to my stomach. Thank God I found a cicada sound because it's the only thing keeping me alive right now. Oh and I now have chronic headaches. The anxiety is off the charts. I was in a very loud restaurant but I did have good custom ear protection on. My tinnitus counselor who is also an audiologist w/ tinnitus does not think that I damaged my hearing. I could've aggravated the tinnitus though. But I also just had to put my mother in hospice and spent two horrible weeks dealing with caregivers and trying to coordinate care.

I know stress can cause an increase in volume but can it also change the nature of your tinnitus? Ergo make it higher pitched?

 

[Joe Cuber]

I know stress can cause an increase in volume but can it also change the nature of your tinnitus? Ergo make it higher pitched?

Mine gets more pitchy and shrill when I stress out.

 

[DeanD]

I am so with you. At this point I would just be happy with improvement. Forget the cure. My tinnitus has just changed exponentially in the last weeks. It is so high-pitched that it almost makes me sick to my stomach. Thank God I found a cicada sound because it's the only thing keeping me alive right now. Oh and I now have chronic headaches. The anxiety is off the charts. I was in a very loud restaurant but I did have good custom ear protection on. My tinnitus counselor who is also an audiologist w/ tinnitus does not think that I damaged my hearing. I could've aggravated the tinnitus though. But I also just had to put my mother in hospice and spent two horrible weeks dealing with caregivers and trying to coordinate care.

I know stress can cause an increase in volume but can it also change the nature of your tinnitus? Ergo make it higher pitched?

I am right there with you as my tinnitus has just done the same thing in the past couple of weeks! It has become so incredibly high pitched and intense. Just for context my last 14 days in comparison to my last post is:

Previously: G, G, OK, B, B, OK, OK, OK, OK, B, OK, OK, OK, OK, B, B, B, OK, B, B
Past 2 Weeks: OK, OK, OK, B, B, B, B, B, B, OK, B, B, B, B

Good days are long gone, and nothing really but bad days now.

It's good you have at least found something to give you some control. It helps more than people realise. Maybe stress can change the tone, it is thought to bring on tinnitus, so there is a logic there - but it sounds like you've had so much to deal with anyway which would have meant more noise, maybe phone calls or other loud environments.

I did for the first time in a year go to a restaurant 5 days before it got worse, but it was relatively quiet and I was wearing custom molded earplugs - I think the cause was a combination of loud heavy rain due to a couple of storms, and an increase in work calls for that week (5 hours instead of the usual 2.5 hours).

It's crazy how this would be something ENTs would swear could possible do no ear damage yet it does incur tinnitus damage - and this is such a missing ingredient that audiologists and ENTs do not know or understand, and why their advice can be damaging at times for some.

My tinnitus spikes during to car journeys, work calls or anything with a low monotonous white noise type of tone (kettle boiling, oven going, microwave on - even opening the door and letting very quiet ambient noise in) - rather than once-off loud noises - so I don't think things like sound therapy would work for me as it just always makes me worse.

As a last ditch effort I am thinking of trying it though.

I can't rely on anyone to give me the answer, or to help, it's something we have to try and figure out for ourselves - and sharing stories and anecdotes on places like this.

 

[Forever hopeful]

I am right there with you as my tinnitus has just done the same thing in the past couple of weeks! It has become so incredibly high pitched and intense. Just for context my last 14 days in comparison to my last post is:

Previously: G, G, OK, B, B, OK, OK, OK, OK, B, OK, OK, OK, OK, B, B, B, OK, B, B
Past 2 Weeks: OK, OK, OK, B, B, B, B, B, B, OK, B, B, B, B

Good days are long gone, and nothing really but bad days now.

It's good you have at least found something to give you some control. It helps more than people realise. Maybe stress can change the tone, it is thought to bring on tinnitus, so there is a logic there - but it sounds like you've had so much to deal with anyway which would have meant more noise, maybe phone calls or other loud environments.

I did for the first time in a year go to a restaurant 5 days before it got worse, but it was relatively quiet and I was wearing custom molded earplugs - I think the cause was a combination of loud heavy rain due to a couple of storms, and an increase in work calls for that week (5 hours instead of the usual 2.5 hours).

It's crazy how this would be something ENTs would swear could possible do no ear damage yet it does incur tinnitus damage - and this is such a missing ingredient that audiologists and ENTs do not know or understand, and why their advice can be damaging at times for some.

My tinnitus spikes during to car journeys, work calls or anything with a low monotonous white noise type of tone (kettle boiling, oven going, microwave on - even opening the door and letting very quiet ambient noise in) - rather than once-off loud noises - so I don't think things like sound therapy would work for me as it just always makes me worse.

As a last ditch effort I am thinking of trying it though.

I can't rely on anyone to give me the answer, or to help, it's something we have to try and figure out for ourselves - and sharing stories and anecdotes on places like this.

Sorry to hear that. I do not share the majority of your symptoms. Everyday sounds do not bother me or spike my tinnitus.

Do you have hearing loss? I don't know your story but it sounds like you have hyperacusis, given your reactivity.

 

[DeanD]

Sorry to hear that. I do not share the majority of your symptoms. Everyday sounds do not bother me or spike my tinnitus.

Do you have hearing loss? I don't know your story but it sounds like you have hyperacusis, given your reactivity.

I do have hearing loss, quite bad hearing loss, but I have had this since quite a young age. It wasn't bad enough to need hearing aids, although I did struggle to hear most people.

I did a before and after tinnitus audiogram and the hearing loss was the same.

I've always been a little skeptical as to whether reactivity is in fact hyperacusis for a few reasons. I certainly had loudness hyperacusis in the first week of onset over a year ago but this went away, leaving just the reactivity.

 

[Forever hopeful]

I do have hearing loss, quite bad hearing loss, but I have had this since quite a young age. It wasn't bad enough to need hearing aids, although I did struggle to hear most people.

I did a before and after tinnitus audiogram and the hearing loss was the same.

I've always been a little skeptical as to whether reactivity is in fact hyperacusis for a few reasons. I certainly had loudness hyperacusis in the first week of onset over a year ago but this went away, leaving just the reactivity.

Yeah, I didn't even know that reactivity was considered a type of hyperacusis until I read it on Tinnitus Talk. I have an audiologist who has tinnitus himself and he said it is considered a sound sensitivity where the tinnitus becomes more pronounced and excitable with certain sounds, so that's why it sometimes gets lumped in with hyperacusis.

 

[RunningMan]

I've always been a little skeptical as to whether reactivity is in fact hyperacusis for a few reasons. I certainly had loudness hyperacusis in the first week of onset over a year ago but this went away, leaving just the reactivity.

I also see them differently. I have had noticeable loudness hyperacusis going back a few months now, but I have never noticed any reactivity effect to masking sounds, TV, fans, etc. recently or going back 21 months when my tinnitus intensity increased.

My TTTS (to both sound stimulus and spontaneously) also started in recent months. That might be more associated with the hyperacusis.

 

[Cmspgran]

I can't rely on anyone to give me the answer, or to help, it's something we have to try and figure out for ourselves - and sharing stories and anecdotes on places like this.

Is your reactive tinnitus in real time as in you get sounds/sensations based on the sound or is it more that it raises it permanently for the rest of the day or a bit of both? Do you get any distortions like morse code sound over certain white noise?

As you know, I'm trying Gabapentin and will give it a fair shot before reporting on the Gabapentin thread. I've been looking into potassium channel moderators of which Gabapentin is one. Quercetin is another which I recently started taking again and noticed it seemed to have a pronounced effect in that a few days after taking it my reactivity went from the left ear to the right.

This naturally freaked me out and I didn't know if this was a positive or negative so I immediately stopped. The reactivity has subsequently returned to the left ear.

Just throwing this out there as, like you said, it is important to share anecdotes.

 

[DeanD]

Is your reactive tinnitus in real time as in you get sounds/sensations based on the sound or is it more that it raises it permanently for the rest of the day or a bit of both? Do you get any distortions like morse code sound over certain white noise?

As you know, I'm trying Gabapentin and will give it a fair shot before reporting on the Gabapentin thread. I've been looking into potassium channel moderators of which Gabapentin is one. Quercetin is another which I recently started taking again and noticed it seemed to have a pronounced effect in that a few days after taking it my reactivity went from the left ear to the right.

This naturally freaked me out and I didn't know if this was a positive or negative so I immediately stopped. The reactivity has subsequently returned to the left ear.

Just throwing this out there as, like you said, it is important to share anecdotes.

It's a bit of both. Loud one off noises don't do much, but kettle boiling, car drive etc. will increase the tinnitus volume and intensity after a short time (perhaps from 30 seconds onwards). It will often stay that way for the rest of the day - or sometimes it settles down a little after an hour or two.

It also increases and mounts in intensity in silence but this I know a lot of people experience.

I used to get sound distortions for a short period of time but this didn't last long and I haven't had any for months now.

My reactivity is across all tones - and some days the tinnitus is more in my ears and others it's more in my head. No pattern. Every day is variable tinnitus - it could be deep low buzzing one day and the next day ultra high-pitched screeching. Sleep, and the process of going to sleep, is the only thing that changes my tinnitus - aside from noise that causes reactivity but this just intensifies and increases the volume of what I already have for the day - it doesn't change the pitch like sleep can.

The reactivity hasn't improved at all in 13 months. I have been housebound in silence for over a month (in January), and I have been driving, grocery shopping, I have moved home twice, been to bars and even nightclubs after a few beers (not recommended!) for the rest of the year - so I feel I have tried it all, and the reactivity hasn't improved and if anything the tinnitus has got worse.

Microsuction has also triggered a functional neurological condition which means I can't swallow normally (and haven't in 6 months) and breathing can be an issue at times - this seems to play in a part in the tinnitus as on good ear days I have bad throat days and vice versa - I have found one single case study online where someone got tinnitus through a tooth being pulled (which I can see can cause similar issues to microsuction with facial nerve damage) and then went on to get FND shortly after, and they also made the same remark that when one is better, the other is worse.

So, when I contemplate medication, I have to think of both the FND and the tinnitus - of which CBT and talking therapy is the 'treatment' for both!

 

[Cmspgran]

It's a bit of both. Loud one off noises don't do much, but kettle boiling, car drive etc. will increase the tinnitus volume and intensity after a short time (perhaps from 30 seconds onwards). It will often stay that way for the rest of the day - or sometimes it settles down a little after an hour or two.

It also increases and mounts in intensity in silence but this I know a lot of people experience.

I used to get sound distortions for a short period of time but this didn't last long and I haven't had any for months now.

My reactivity is across all tones - and some days the tinnitus is more in my ears and others it's more in my head. No pattern. Every day is variable tinnitus - it could be deep low buzzing one day and the next day ultra high-pitched screeching. Sleep, and the process of going to sleep, is the only thing that changes my tinnitus - aside from noise that causes reactivity but this just intensifies and increases the volume of what I already have for the day - it doesn't change the pitch like sleep can.

The reactivity hasn't improved at all in 13 months. I have been housebound in silence for over a month (in January), and I have been driving, grocery shopping, I have moved home twice, been to bars and even nightclubs after a few beers (not recommended!) for the rest of the year - so I feel I have tried it all, and the reactivity hasn't improved and if anything the tinnitus has got worse.

Microsuction has also triggered a functional neurological condition which means I can't swallow normally (and haven't in 6 months) and breathing can be an issue at times - this seems to play in a part in the tinnitus as on good ear days I have bad throat days and vice versa - I have found one single case study online where someone got tinnitus through a tooth being pulled (which I can see can cause similar issues to microsuction with facial nerve damage) and then went on to get FND shortly after, and they also made the same remark that when one is better, the other is worse.

So, when I contemplate medication, I have to think of both the FND and the tinnitus - of which CBT and talking therapy is the 'treatment' for both!

What a nightmare mate, the tinnitus problem alone is more than enough for anyone, nevermind the FND. I think I can relate as I had a terrible time in my 20s and early 30s with balance issues and leg weakness. I had numerous scans, no test could find anything, it was put down to an FND type issue.

Reactive tinnitus though, it's a gift from the devil himself. I think you're a similar age to me (40s) and I don't want to put up with this for 30 years, that seems unimaginable.

I will keep you posted on the Gabapentin trial. I'm willing to turn over every stone to try and positively impact this. If nothing helps, I hope time eventually settles it down, even if it takes 2-3 years.

 

[DeanD]

What a nightmare mate, the tinnitus problem alone is more than enough for anyone, nevermind the FND. I think I can relate as I had a terrible time in my 20s and early 30s with balance issues and leg weakness. I had numerous scans, no test could find anything, it was put down to an FND type issue.

Reactive tinnitus though, it's a gift from the devil himself. I think you're a similar age to me (40s) and I don't want to put up with this for 30 years, that seems unimaginable.

I will keep you posted on the Gabapentin trial. I'm willing to turn over every stone to try and positively impact this. If nothing helps, I hope time eventually settles it down, even if it takes 2-3 years.

It has been a bit of a shitshow to be fair. Did your FND symptoms continue or did they just go away on their own eventually?

The reactivity element is so hard. Just opening a door and boom, tinnitus ramps up. When you know things you are going to do are going to either increase the pitch, volume and/or intensity of your tinnitus, it's no wonder people with this want to start avoiding doing basic things. It's natural. So many people in my life tell me that 'I have to get on with life' and need to 'push through things', and 'you need to try' (which is the worst one I get told, as if I am not trying already just by being here) - but yeah I agree, it's a nightmare.

Yes, I'm in my 40s now, so of a similar age. I'm glad I didn't get it like this in my 20s - that must be so rough - but equally it could have held off for another 10-20 years or so - and would have done if I hadn't made the decision to remove the earwax. The earwax was the best ear protection I ever had!

I am very risk adverse and have been avoiding most things like medication etc... but I had my final call with my speech and language therapist, who has been amazing and given me more of my life back than any doctor ever has, and she bluntly (and rightly) told me I either have to accept this as I am now and carry on as is - or take those risks I have avoided, and look to try things that I may not know the outcome of that may give me more of my life back.

It was hard to hear, but I needed to hear it.

I wish you every success with the Gabapentin, I truly do, and look forward to hearing how it goes - and you never know, my risk adverse side my diminish somewhat and I may be trialing this with you in the near future!

 

[Cmspgran]

It has been a bit of a shitshow to be fair. Did your FND symptoms continue or did they just go away on their own eventually?

The reactivity element is so hard. Just opening a door and boom, tinnitus ramps up. When you know things you are going to do are going to either increase the pitch, volume and/or intensity of your tinnitus, it's no wonder people with this want to start avoiding doing basic things. It's natural. So many people in my life tell me that 'I have to get on with life' and need to 'push through things', and 'you need to try' (which is the worst one I get told, as if I am not trying already just by being here) - but yeah I agree, it's a nightmare.

Yes, I'm in my 40s now, so of a similar age. I'm glad I didn't get it like this in my 20s - that must be so rough - but equally it could have held off for another 10-20 years or so - and would have done if I hadn't made the decision to remove the earwax. The earwax was the best ear protection I ever had!

I am very risk adverse and have been avoiding most things like medication etc... but I had my final call with my speech and language therapist, who has been amazing and given me more of my life back than any doctor ever has, and she bluntly (and rightly) told me I either have to accept this as I am now and carry on as is - or take those risks I have avoided, and look to try things that I may not know the outcome of that may give me more of my life back.

It was hard to hear, but I needed to hear it.

I wish you every success with the Gabapentin, I truly do, and look forward to hearing how it goes - and you never know, my risk adverse side my diminish somewhat and I may be trialing this with you in the near future!

Hi Dean,

My reactivity sounds different to yours in that it's more of an electrical buzz that reacts in real time to sounds. On the days it lessens, a morse code tinnitus comes to the forefront that I hear over/within everyday sounds, such as the car tires, the toilet flushing, certain music, so I'm guessing I have a horrific combo of reactive tinnitus and dysacusis. I'm not sure which is worse to be honest. It seems a 40-minute MRI scan has utterly destroyed my auditory system.

It's easy to just say get on with it, we do that every day, but I'd say my quality of life right now is near enough existing. The standard of care has been non-existent. I'm still waiting for an ENT appointment (I've paid private since). I had my hearing ruined, no plan of care, no plan to treat. You're just left to rot. I feel violated by the whole experience, to be honest.

Regarding my functional neurological problem, the cynic in me thinks it's something they throw at you when they can't find a diagnosis. I suffered from balance issues and leg weakness for years, the only positive I can offer is that it petered out and now is nowhere near as bad as the chronic phase in my mid to late twenties when it was like walking drunk. I think I have some form of mild MS or demyelinating issues as I have flareups of different things every few years, I wouldn't be surprised if the ear issues are related to it, it's like I almost have a hyper sensitive nervous system and/or hypersensitive nerves. So, have hope your FND issue should improve with time.

I get where your therapist is coming from, I always try to be pragmatic with problems and this is one of the hardest conditions to try and be pragmatic about as the information isn't there, the support in the UK is non-existent and as said, there is no plan of action.

The way I see it is one of four things will happen:

1. The Gabapentin works - great!
2. The Carbamazepine works - great!
3. The passage of time works and it fades away (I'm at the 6 month mark) - great!
4. None of the above work and I have to find a way of getting on with my life through some hardcore acceptance commitment/CBT therapy ideas - this is a tough scenario for me as I'm a problem solver and the thought of just sucking up reactive tinnitus and morse code beeps over so many sounds for another 30-40 years sounds horrific but then what choice do I have? I don't want to end it.

There consensus for reactive tinnitus and dysacusis seems to be it gets better with time, although there are folk here 2-3 years later still struggling with sound distortions and that concerns me. I hope that with the passage of time, their brain just tunes it out.

Acceptance of our condition(s) may be the hardest thing we ever do but I don't want to sit rotting away in the house for another 4-5 years just hoping and praying it goes away, but getting up and facing the day each morning is a tough ask.

Wishing you the best @DeanD. I will report on the Gabapentin.

Best wishes,
Mike

 

[ellees]

I'm trying Gabapentin and will give it a fair shot before reporting on the Gabapentin thread.

Is there any update on the Gabapentin? Did it make your tinnitus worse?

 

[beefling]

I second @ellees's question and would love to hear an update from you @Cmspgran. Your story resonates with me, especially given how sharp a decline my own situation has taken. Reactivity is a whole 'nother hell. Have you found any success with time or medications?

I wish all of us a brighter future.

 

[Cmspgran]

Hi @beefling and @ellees. I apologize for the delay in my reply. First of all, in answer to your question @ellees, I've tried Gabapentin several times with no benefit to my reactive tinnitus or distortions; the only benefit I found for Gabapentin is that it gave me better night sleep. Literally, the only drug I've tried that does anything is Clonazepam, and obviously, that comes with its own lovely list of caveats and side effects.

Sorry to hear you are suffering so much @beefling. It's been over a year for me now, and I'm still struggling with variable severity on a daily basis; distortions are still there and much worse some days compared to others, and reactivity is still there. I sometimes have better days and think I'm on the road to improvement, only to have several bad days again, I wish I had something better to report. I'm still holding out hope for Dr. Shore's device. Have you just worsened out of the blue?

 

[beefling]

Sorry to hear you are suffering so much @beefling. It's been over a year for me now, and I'm still struggling with variable severity on a daily basis; distortions are still there and much worse some days compared to others, and reactivity is still there. I sometimes have better days and think I'm on the road to improvement, only to have several bad days again, I wish I had something better to report. I'm still holding out hope for Dr. Shore's device. Have you just worsened out of the blue?

I'm in a similar situation to you. The variability now seems to be more on an hourly basis rather than daily. I'm sorry to hear about your situation as well. Since you joined, you've been a great support and have provided valuable insight and perspective on research topics. My condition worsened suddenly, without a clear cause. I try not to dwell on it. I'm also looking forward to Shore's work. While a decrease in baseline tinnitus would be welcome, I truly hope it helps with reactivity. That's the real game-changer.

Edit: Hey, whichever mod 'cleaned up' my original message, please don't lol. There was nothing wrong with it. It's intended to be more colloquial than formal.

 

[ellees]

Gabapentin several times with no benefit to my reactive tinnitus or distortions; the only benefit I found for Gabapentin is that it gave me better night sleep.

Thanks for the reply. If you don't mind, what was the dose and how long were you on it for?

 

[IYIiKe]

I honestly think part of habituation is the natural progression that you will invariably eventually encounter other ailments. Tinnitus started a huge panic/health anxiety for me. Some of those fears subconsciously pushed tinnitus further back in my mind, though it hasn't really changed in volume. It's still the same fluctuating, high-pitched tinnitus. Good days are a 4, normal days a 6, bad days 8 on a scale of 1 to 10.