Medication to Mitigate Suicidal Ideation from Severe Tinnitus?

[Johan001]

Hi all,

I am 4 months into severe tinnitus (hissing/whistle + clock ticking sound). I have been on Mirtazapine 30 mg for sleep for the past 2 months. Also was using 0.5 Clonazepam for 1.5 months but tapered off and got off it as of now.

I am struggling to sleep despite Mirtazapine (frequent breaks and panic attacks when waking up).

During the day and when waking up I have severe suicidal ideation, which resulted in a few attempts.

I am now extremely restless and suicidal. As I'm a real threat to myself, I want to mitigate this before I'm going to off myself. I have a private psychiatrist, which I can ask about this.

What are treatments you can suggest I discuss with him?

I am also taking a bunch of supplements, such as L-Theanine.

Thank you!

 

[Jack V]

Nortriptyline.

 

[GoatSheep]

If you are taking a bunch of supplements it's possible they could be having an interaction of some kind that is making your issues worse. I don't know what the mechanism that caused the clash was, but I was taking ALCAR and combining it with Astaxanthin (along with a few other things). My ears would feel better (less inflammatory feeling), but after a few days the combo would make my tinnitus go up a couple notches and be much shriller in pitch. So I stopped the Astaxanthin as it was the last thing I had added.

I ran out of ALCAR and in the interim started taking the Astaxanthin again just to give it a shot. This time no change in tinnitus and since I'm on all the other supplements I was on they had to be the ones clashing to cause the worsening tinnitus.

Also, previously this summer was drinking a drink called NeuroSleep that had 5-HTP And some other stuff in it, but I foolishly didn't read the ingredients. Just drank some on recommendation of my ex-wife that it helped her. Had miserable tinnitus for weeks and couldn't figure out why the sudden worsening. Just randomly stopped drinking that drink and tinnitus was back to baseline in a few days.

 

[Chadilac]

I can relate because I am 4 months into severe tinnitus as well. I can hear mine over everything and have had to buy in-ear maskers to get through my days.

I have also had suicidal ideation as well and am also struggling with medications and sleep. I was on Mirtazapine for awhile but found that I was extremely tired during the day while on it so I had to come off it.

Now I'm taking Wellbutrin for anxiety and Olanzapine for sleep. However I am still struggling to get more than 4-5 hours of sleep a night. Olanzapine worked great for me before getting tinnitus but now it's only doing a mediocre job. I think my brain has to adapt and accept the tinnitus first before I'll be able to get my sleep back. I think it's just going to take time.

 

[Chinmoku]

Hi all,

I am 4 months into severe tinnitus (hissing/whistle + clock ticking sound). I have been on Mirtazapine 30 mg for sleep for the past 2 months. Also was using 0.5 Clonazepam for 1.5 months but tapered off and got off it as of now.

I am struggling to sleep despite Mirtazapine (frequent breaks and panic attacks when waking up).

During the day and when waking up I have severe suicidal ideation, which resulted in a few attempts.

I am now extremely restless and suicidal. As I'm a real threat to myself, I want to mitigate this before I'm going to off myself. I have a private psychiatrist, which I can ask about this.

What are treatments you can suggest I discuss with him?

I am also taking a bunch of supplements, such as L-Theanine.

Thank you!

I'm very sorry to see you are suffering like this. I'm in a similar boat and I may share some things I learned along the way.

I found L-theanine would worsen my tinnitus. It's supposed to be gaba-enhancing but it can be glutamate-enhancing. Not necessarily your case but be careful. Perhaps taurine could be another choice to help gaba.

From: https://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

Another popular choice for increasing GABA is l-theanine. L-theanine is a glutamate analog. Which means if you fall in the category of people who is having problems converting your glutamate to GABA, this could lead to excess glutamate rather than GABA. Additionally, l-theanine is derived from tea or mushrooms, it is an artificial means of supplementing glutamate, not natural. Furthermore, it could have traces of caffeine or fungi from its original source, which could be problematic as well. Therefore, l-theanine may work for some but have the opposite effect for others. I prefer to avoid it unless I am working with someone who is detoxing from drugs and alcohol, in which case the need may outweigh the risks, but glutamine or lithium may be better choices.

If you check that article, it presents a very nuanced analysis of how one can try to increase gaba in the brain (and hence calm down, fight anxiety and possibly quieten tinnitus). It is long but perhaps worth reading if you wish to go the supplements route.

For the private psychiatrist, I hesitate to suggest drugs to investigate with him as these are all double edged swords. There is a famous protocol by Shulman et al based on brain imaging, this is clonazepam plus gabapentin and it seems to work for some with severe cases BUT both drugs are very addictive, may have bad side effects and you would take a very big risk of dependence, and they may also turn on you after a while, @Star64 is an expert on how these drugs can go wrong and she is great. Of course if you are about to jump off a bridge the cost/benefit analysis is rather stringent. @linearb is an authority on taking these drugs here as he has done a lot of research and is using them. It's a cost/benefit analysis you might discuss with your psychiatrist but keep in mind a non-negligible amount of people get tinnitus when they discontinue these drugs. It's really desperate measures and if possible at all they should be avoided. Keep also in mind that psychiatrist constantly under-estimate the impact of psychopharmaceuticals on tinnitus and might tell you that some are safe when they are not.

Other drugs that have been shown to work in some studies but failed to replicate success in others and have only limited support or anecdotal evidence (as in failed trials etc) are:

1) acamprosate,
2) neramexane,
3) sulpiride and melatonin, 4) pramipexole,
5) Caroverine, 6) Flupirtine, 7) Memantine.

There are also potassium channel openers, but retigabine has been removed from the market.

In terms of antidepressants, be careful as there is research showing that serotonin may increase tinnitus, so serotonergic antidepressants are risky. People get tinnitus from SSRI withdrawal or even while under SSRI. Despite this, there is a study showing that Sertraline works for tinnitus but again it's risky. Also, if you would like to go serotonergic perhaps natural supplements like 5HTP, tryptophan or St John's Wort are worth considering but never take them together with serotonergic antidepressants to avoid serotonin syndrome.

What else... some people have luck with tryciclic anti-depressants like Amitriptyline (but again serotonin...) or Noritriptyline but you hear all sorts with these two.

A modern antidepressant some will propose is Vortioxetine, it is serotonergic partly as a modulator if I understand correctly. It does not seem to help much with tinnitus from what I heard.

Agomelatine is another antidepressant that acts on melatonine, it's considered to be safe and might help with sleep. I was suggested this in the past but it had bad side effects with me.

For sleep they might also prescribe you antipsychotics like Quetiapine. Be careful again about side effects and discontinuation, it can be quite tough with these drugs.

I would like to give you an easy answer but it's not there, it's a jungle. Perhaps the easy thing is to ask you psychiatrist to make suggestions but making him aware of the risks with tinnitus. Perhaps show him the research piece where they show that serotonin may increase tinnitus.

 

[Star64]

I'm very sorry to see you are suffering like this. I'm in a similar boat and I may share some things I learned along the way.

I found L-theanine would worsen my tinnitus. It's supposed to be gaba-enhancing but it can be glutamate-enhancing. Not necessarily your case but be careful. Perhaps taurine could be another choice to help gaba.

From: https://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

If you check that article, it presents a very nuanced analysis of how one can try to increase gaba in the brain (and hence calm down, fight anxiety and possibly quieten tinnitus). It is long but perhaps worth reading if you wish to go the supplements route.

For the private psychiatrist, I hesitate to suggest drugs to investigate with him as these are all double edged swords. There is a famous protocol by Shulman et al based on brain imaging, this is clonazepam plus gabapentin and it seems to work for some with severe cases BUT both drugs are very addictive, may have bad side effects and you would take a very big risk of dependence, and they may also turn on you after a while, @Star64 is an expert on how these drugs can go wrong and she is great. Of course if you are about to jump off a bridge the cost/benefit analysis is rather stringent. @linearb is an authority on taking these drugs here as he has done a lot of research and is using them. It's a cost/benefit analysis you might discuss with your psychiatrist but keep in mind a non-negligible amount of people get tinnitus when they discontinue these drugs. It's really desperate measures and if possible at all they should be avoided. Keep also in mind that psychiatrist constantly under-estimate the impact of psychopharmaceuticals on tinnitus and might tell you that some are safe when they are not.

Other drugs that have been shown to work in some studies but failed to replicate success in others and have only limited support or anecdotal evidence (as in failed trials etc) are:

1) acamprosate,
2) neramexane,
3) sulpiride and melatonin, 4) pramipexole,
5) Caroverine, 6) Flupirtine, 7) Memantine.

There are also potassium channel openers, but retigabine has been removed from the market.

In terms of antidepressants, be careful as there is research showing that serotonin may increase tinnitus, so serotonergic antidepressants are risky. People get tinnitus from SSRI withdrawal or even while under SSRI. Despite this, there is a study showing that Sertraline works for tinnitus but again it's risky. Also, if you would like to go serotonergic perhaps natural supplements like 5HTP, tryptophan or St John's Wort are worth considering but never take them together with serotonergic antidepressants to avoid serotonin syndrome.

What else... some people have luck with tryciclic anti-depressants like Amitriptyline (but again serotonin...) or Noritriptyline but you hear all sorts with these two.

A modern antidepressant some will propose is Vortioxetine, it is serotonergic partly as a modulator if I understand correctly. It does not seem to help much with tinnitus from what I heard.

Agomelatine is another antidepressant that acts on melatonine, it's considered to be safe and might help with sleep. I was suggested this in the past but it had bad side effects with me.

For sleep they might also prescribe you antipsychotics like Quetiapine. Be careful again about side effects and discontinuation, it can be quite tough with these drugs.

I would like to give you an easy answer but it's not there, it's a jungle. Perhaps the easy thing is to ask you psychiatrist to make suggestions but making him aware of the risks with tinnitus. Perhaps show him the research piece where they show that serotonin may increase tinnitus.

You are absolutely correct, it is a jungle Unfortunately many medications, vitamins and other treatments on the market for tinnitus all have the ability to actually make tinnitus worse.

I noticed you listed Acamprosate, I actually tried this years ago but it had no effect on my tinnitus at all, I had to convince a Doctor to prescribe it for me as they were not keen on prescribing the drug for off label use.

So I told the Doctor to write in my notes I had a drinking problem I was actually working as a Drug and Alcohol counselor at the time and they knew this, so they agreed it was close enough.

Tinnitus makes you do desperate things at times, but everyone should do their research before trying or swallowing anything.

 

[Bill Arsenault]

What a brutal mess we are in.

I can barely stand just reading about it sometimes.

We need to hang in there and fight on.

 

[Ken219]

I think my brain has to adapt and accept the tinnitus first before I'll be able to get my sleep back. I think it's just going to take time.

Chadilac you are right. As a 30 year sufferer and having had many spikes, time has been my ally. I am also aided with a variety of medications. Example Xanax, Prozac, Ambien (sleep). It usually takes 12-18 months to rehabituate. I pray for better treatments or cure. G-d bless and please hang in there!

 

[Bill Arsenault]

Thanks for the hugs guys.

The comment I originally came to make before getting caught up and emotional reading some posts was:

I took medication to cover-up my depression and anxiety-

I got tinnitus instead.

Now I have depression, anxiety and tinnitus-
and can't take anything without trial and error and risking making everything worse.

But I seem to be especially vulnerable to Ototoxicity-
Ibuprofen destroys me.

But many, many with tinnitus seem to have no issues taking all sorts of meds.

So please don't let me worry you into not taking something you need.

I appreciate all the great info that could save me some grief.

Best wishes

 

[Zaccq]

Use masking noises when you go to sleep, it reduces the panic attacks at night.

The best level is to put the volume just below the tinnitus.

 

[Bill Arsenault]

This post is not about medication.
But my whole life has been changed by Ototoxicity and yet I know I need to be on meds for major Depression.

So this is a thread that I hope will always exist in some form or another and this is where I choose to post.

I often come to this forum before the sun is even up.
I know better than to make comments at that time because I'm at least half insane from agony.

I just read through posts until I find something that says what I need to hear.
Maybe just something to remind me that I'm not alone in this living nightmare.
Something positive that will calm the panic or keep me hanging on for another day.

Of course I have nothing whatsoever against those who post about being at their wits' end and on the verge of suicide.
That just might be one of the most important reasons for a forum.
Who am I to say it isn't.

If I know I'm not really capable of support at that time-
Then I move along until I find what I need to hear for myself at that moment.

Due to tinnitus-
I have yet to find an indoor work environment that I can function in.
And because my tinnitus continues to become more intrusive in outdoor work situations where it was once tolerable-I have been dwelling in negativity lately.

I think that is the reason I seem to be paying more attention
to people on the forum arguing and debating about things that I really wouldn't think were up for debate.

But what really makes me lose my mind with white-hot rage lately are those that seem to intentionally and consistently want to give others a hard time.

I mean-
Isn't life hard enough already without someone trying to make it even more difficult.

I honestly never thought there could be that much to argue with each other about on a tinnitus forum.

I will make some impulsive comments and agree to disagree with someone occasionally.
Or not know what the hell I'm talking about at least half of the time.

But I will never intentionally try to hurt someone's feelings or make their life difficult-
Unless I see them consistently trying to do just that to someone else that does not deserve it.
Then all bets are off.

I will try my very best to ignore it from now on-
Because I do realize it will inevitably set off a chain reaction of negativity.

But some of the people I see getting a hard time just simply makes me snap.

I sincerely just hope I will start seeing less accusations and arguing about who must have mild tinnitus and who must be lying about having severe tinnitus and who is just looking for attention and who is a zealot, etc.

And god forbid someone admits that they are somehow coping and dealing with it at least temporarily on a day to day basis-oh the hate they get.

Some actually get accused of condemning us all by saying such things-because the general public won't take tinnitus seriously unless we all cry suicide non-stop.

I feel like the vast majority of those without tinnitus will probably never care-
It just seems to be one of those things.

And Christ-
My definition of habituation is only that I was able to get through a work day without openly weeping.
I usually try to get that out of my system first thing in the morning if I need too.

Habituation to me is simply the ability to tell myself that if tinnitus didn't completely debilitate me yesterday-
Then there's a reasonable chance that I can get through today.

And no-
It does not always work successfully.
But it definitely does most of the time for now at least.

If you don't like that word I apologize and I actually kinda understand-
but I need something to cling on to and some hope besides FX-322.

Anyway-
It does not make sense for people to be logging off the forum in worse shape then when they came.

So now that I got all that off my chest I will attempt to do my part at keeping things as positive as possible for as long as possible.

Best wishes,
Luv and respect to all.

 

[Ctw]

Thank you. Beautifully written.

 

[dan]

@Bill Arsenault sorry you have to go through this. I've had this since 2011.
Could you describe your tinnitus? Uni/bilateral?

 

[Bill Arsenault]

@Bill Arsenault sorry you have to go through this. I've had this since 2011.
Could you describe your tinnitus? Uni/bilateral?

Yes, I can describe the whole nightmare from mild to excruciating-
In pretty good detail because my permanent spikes are now the milestones in my life.

And I think it would help or be interesting to quite a few people.

Or more importantly-
Save some new people a ton of grief hopefully.

Working now-

Hope everyone is hanging in there.
Enjoy your day.

 

[Bill Arsenault]

@Bill Arsenault sorry you have to go through this. I've had this since 2011.
Could you describe your tinnitus? Uni/bilateral?

My tinnitus was bilateral from the start.

Or at least it was by the time I noticed it.


In the left center of my head I have a church bell type of sound.

Like after it's struck and beginning to die away -
but never does.

Seems like around 13 kHz -
But difficult to tell with everything else going on and I don't try measuring anymore.

In my extreme left ear I have a sound that is something like the tone produced by those little push button bells that they keep on hotel desks in the movies.

But at 12 kHz and sustained obviously.


My right ear is thoroughly trashed.

I have what I call
"The tea kettle from hell"

Complete with the modulating whistling at 14 kHz and the hissing.

The hissing can be somewhat soothed by loud Cicadas (the real ones).

I also get frequent very intense reactive spikes in my right ear that last from about 10 seconds to several minutes and make me significantly unable to hear while it's happening.

I am still very fearful of these because they prove to me how unbelievably loud tinnitus can get.

I don't often get reactive or random temporary spikes in my left ear and usually my right ear is so bad that it often makes me forget about the left.

Except first thing in the morning -
When everything is very noticeable for a while.


I can currently hear it clearly outside under most normal circumstances and it's unbearable if it's quiet outdoors like after a deep snowstorm that blankets everything in silence or early morn/ Late nite with no wind.

At that point I have no choice but to use some earbuds (waterfall sounds) on very low volume that I modified so I don't have to stick them far in at all and they stay put.

And indoors I need all kinds of sound enrichment constantly and in every room or I'll go insane.


If you have ever been in the front row for a super loud concert and got ringing...

Well - that's roughly how loud my tinnitus is now-
But without the muffled hearing effect.

I can still hear most normal frequencies pretty good and the hyperacusis gradually disappeared after about 6-9 months.

It's all my upper frequencies that have been fried by medication.

When I first noticed my tinnitus several years ago I could hear up to 14 kHz.

Now I can hear 9 kHz and struggle to hear 10 kHz.

So I'm losing my upper frequencies at about 1 kHz a year.

Well - hopefully that ratio will taper off now that I'm being much more careful.

At some point I could elaborate further about some of the mistakes I made that contributed to it being this loud and also the times it got louder even though I thought I had it under control.

And also what I think initially set it in motion and things that now make it worse or seem to have no effect.

Stuff like that.

Have a good night.

Best wishes.

 

[dan]

At some point I could elaborate further about some of the mistakes I made that contributed to it being this loud and also the times it got louder even though I thought I had it under control.

Thanks, make sure you tag me when you do, so I won't miss it.

The hissing can be somewhat soothed by loud Cicadas (the real ones).

I used to do that before my latest worsening along with hyperacusis. After my second major noise trauma now every louder than ordinary noise can potentially give me a new tone, ear pain, fullness, permanent increase, etc.
I already gained several new noises during the past year post trauma.
If you let a normal person hear what I hear, he would jump in front of a moving truck within 24 hours...
Hard to believe such a disorder exists... I mean we have treatment for severe epilepsy and that's related to tinnitus, but nothing touches tinnitus. We have treatments to control schizophrenia, that's also a form of hyperactivity in the brain... yet nothing touches tinnitus.

Hopefully when we cure hearing loss, that would reset the brain back to normal... but damn it is a hard wait and the years are going by and life too...

 

[Bill Arsenault]

Thanks, make sure you tag me when you do, so I won't miss it.

I used to do that before my latest worsening along with hyperacusis. After my second major noise trauma now every louder than ordinary noise can potentially give me a new tone, ear pain, fullness, permanent increase, etc.
I already gained several new noises during the past year post trauma.
If you let a normal person hear what I hear, he would jump in front of a moving truck within 24 hours...
Hard to believe such a disorder exists... I mean we have treatment for severe epilepsy and that's related to tinnitus, but nothing touches tinnitus. We have treatments to control schizophrenia, that's also a form of hyperactivity in the brain... yet nothing touches tinnitus.

Hopefully when we cure hearing loss, that would reset the brain back to normal... but damn it is a hard wait and the years are going by and life too...

Thanks Dan - for the support and for listening
Very much appreciated.

Hope you are getting by.
Talk later.

 

[Bill Arsenault]

I'm very sorry to see you are suffering like this. I'm in a similar boat and I may share some things I learned along the way.

I found L-theanine would worsen my tinnitus. It's supposed to be gaba-enhancing but it can be glutamate-enhancing. Not necessarily your case but be careful. Perhaps taurine could be another choice to help gaba.

From: https://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/

If you check that article, it presents a very nuanced analysis of how one can try to increase gaba in the brain (and hence calm down, fight anxiety and possibly quieten tinnitus). It is long but perhaps worth reading if you wish to go the supplements route.

For the private psychiatrist, I hesitate to suggest drugs to investigate with him as these are all double edged swords. There is a famous protocol by Shulman et al based on brain imaging, this is clonazepam plus gabapentin and it seems to work for some with severe cases BUT both drugs are very addictive, may have bad side effects and you would take a very big risk of dependence, and they may also turn on you after a while, @Star64 is an expert on how these drugs can go wrong and she is great. Of course if you are about to jump off a bridge the cost/benefit analysis is rather stringent. @linearb is an authority on taking these drugs here as he has done a lot of research and is using them. It's a cost/benefit analysis you might discuss with your psychiatrist but keep in mind a non-negligible amount of people get tinnitus when they discontinue these drugs. It's really desperate measures and if possible at all they should be avoided. Keep also in mind that psychiatrist constantly under-estimate the impact of psychopharmaceuticals on tinnitus and might tell you that some are safe when they are not.

Other drugs that have been shown to work in some studies but failed to replicate success in others and have only limited support or anecdotal evidence (as in failed trials etc) are:

1) acamprosate,
2) neramexane,
3) sulpiride and melatonin, 4) pramipexole,
5) Caroverine, 6) Flupirtine, 7) Memantine.

There are also potassium channel openers, but retigabine has been removed from the market.

In terms of antidepressants, be careful as there is research showing that serotonin may increase tinnitus, so serotonergic antidepressants are risky. People get tinnitus from SSRI withdrawal or even while under SSRI. Despite this, there is a study showing that Sertraline works for tinnitus but again it's risky. Also, if you would like to go serotonergic perhaps natural supplements like 5HTP, tryptophan or St John's Wort are worth considering but never take them together with serotonergic antidepressants to avoid serotonin syndrome.

What else... some people have luck with tryciclic anti-depressants like Amitriptyline (but again serotonin...) or Noritriptyline but you hear all sorts with these two.

A modern antidepressant some will propose is Vortioxetine, it is serotonergic partly as a modulator if I understand correctly. It does not seem to help much with tinnitus from what I heard.

Agomelatine is another antidepressant that acts on melatonine, it's considered to be safe and might help with sleep. I was suggested this in the past but it had bad side effects with me.

For sleep they might also prescribe you antipsychotics like Quetiapine. Be careful again about side effects and discontinuation, it can be quite tough with these drugs.

I would like to give you an easy answer but it's not there, it's a jungle. Perhaps the easy thing is to ask you psychiatrist to make suggestions but making him aware of the risks with tinnitus. Perhaps show him the research piece where they show that serotonin may increase tinnitus.

This post was and is still great.
I've had to re-read or reference several times already.

I hope more people do things like this.
I consider this easy reading for a suicide thread.

I also hope nobody ever has to think twice about posting how miserable they are.

I don't want to have to when that day comes for me.

It is priceless what being reminded I'm not alone can usually do for me.

And it seems to help more and more as time goes on.

My biggest fear for a while was that I was going to figure out that my ears are ruined a lot worse than average.

And then right on cue-
Have a vicious panic attack.

Only because I feel like - well I know-that a lot of the damage was likely unnecessary.
And also -
I don't know what my threshold for holding it together is with this.

But whatever - those days of wondering are gone.
I know what's up now -
I got a horrendous case of this.

I read posts from people now and can just tell they are going out of their minds.

Sometimes during the day I amuse myself by thinking like maybe I'm already insane and I'm the only one who hasn't figured it out yet.

Everyone around me is just rolling with it for now but eventually they are gonna have to break the bad news to me.

But I'm slowly allowing myself to fully acknowledge how very seriously everyone is else feeling also.

That's the thing -
I know for sure that for a long time I really didn't want to acknowledge how bad it all is.

I know I'm not the first to point out how twisted it is that knowing others are hurting too can really save the day sometimes.

And yes my ears are screaming bloody murder at me right now
- time to go.

Have a goodnight and Sunday.

Later.

 

[GaryTH]

My tinnitus was bilateral from the start.

Or at least it was by the time I noticed it.


In the left center of my head I have a church bell type of sound.

Like after it's struck and beginning to die away -
but never does.

Seems like around 13 kHz -
But difficult to tell with everything else going on and I don't try measuring anymore.

In my extreme left ear I have a sound that is something like the tone produced by those little push button bells that they keep on hotel desks in the movies.

But at 12 kHz and sustained obviously.


My right ear is thoroughly trashed.

I have what I call
"The tea kettle from hell"

Complete with the modulating whistling at 14 kHz and the hissing.

The hissing can be somewhat soothed by loud Cicadas (the real ones).

I also get frequent very intense reactive spikes in my right ear that last from about 10 seconds to several minutes and make me significantly unable to hear while it's happening.

I am still very fearful of these because they prove to me how unbelievably loud tinnitus can get.

I don't often get reactive or random temporary spikes in my left ear and usually my right ear is so bad that it often makes me forget about the left.

Except first thing in the morning -
When everything is very noticeable for a while.


I can currently hear it clearly outside under most normal circumstances and it's unbearable if it's quiet outdoors like after a deep snowstorm that blankets everything in silence or early morn/ Late nite with no wind.

At that point I have no choice but to use some earbuds (waterfall sounds) on very low volume that I modified so I don't have to stick them far in at all and they stay put.

And indoors I need all kinds of sound enrichment constantly and in every room or I'll go insane.


If you have ever been in the front row for a super loud concert and got ringing...

Well - that's roughly how loud my tinnitus is now-
But without the muffled hearing effect.

I can still hear most normal frequencies pretty good and the hyperacusis gradually disappeared after about 6-9 months.

It's all my upper frequencies that have been fried by medication.

When I first noticed my tinnitus several years ago I could hear up to 14 kHz.

Now I can hear 9 kHz and struggle to hear 10 kHz.

So I'm losing my upper frequencies at about 1 kHz a year.

Well - hopefully that ratio will taper off now that I'm being much more careful.

At some point I could elaborate further about some of the mistakes I made that contributed to it being this loud and also the times it got louder even though I thought I had it under control.

And also what I think initially set it in motion and things that now make it worse or seem to have no effect.

Stuff like that.

Have a good night.

Best wishes.

I agree, many medications make tinnitus worse in the long run. In my quest to get 8 hours of sleep, I got caught in the benzodiazepine trap for months, and now coming off of them my tinnitus is worse than before. I used to wake up with a soft hiss, but now all I get is eeeeeee all the time at about 9,000 Hz. I thought the insomnia was damaging my brain, but the withdrawal from the meds probably did much worse.

 

[Matchbox]

I feel like I'm a bit in your position right now. Things went from mild to extreme in a matter of weeks due to impulsive fear driven decisions and a support network that gave up on my well being (very likely made it worse).

I have the same issues, right ear is a mess of beeps, bloops, bell tolls, and wavering low frequency sounds (the high pitched stuff I can mask is a joke, I would love if it had stayed as that, and yet weeks ago I was so afraid of it, now I'd welcome it being the only issue).

Can you please elaborate on how things went for you? Your story?

 

[GaryTH]

I feel like I'm a bit in your position right now. Things went from mild to extreme in a matter of weeks due to impulsive fear driven decisions and a support network that gave up on my well being (very likely made it worse).

I have the same issues, right ear is a mess of beeps, bloops, bell tolls, and wavering low frequency sounds (the high pitched stuff I can mask is a joke, I would love if it had stayed as that, and yet weeks ago I was so afraid of it, now I'd welcome it being the only issue).

Can you please elaborate on how things went for you? Your story?

I made the mistake of thinking a psychiatrist could help me with insomnia caused by tinnitus. When she told me she had never treated a tinnitus patient, that should have been the red flag to walk away. Instead, I allowed her to convince me that Lorazepam was safe and that 1mg was a small dose (it is not, it is 10 Valiums). A few months later I started having really strange symptoms of depersonalization/derealization, mood swings, crying for no reason, dark thoughts, morning panic attacks all of which she attributed to depression and a worsening of anxiety. I told her I wanted to stop taking it and she switched me to other non-addictive sleep aids without tapering me off first. I thought I was losing my mind and developed new symptoms, night sweats and hand tremors, until I posted my symptoms in a Facebook group and some knowledgeable person correctly diagnosed it as benzodiazepine withdrawals. By then I was already a month cold turkey and didn't want to risk kindling to reinstate and do a proper taper.

The withdrawal has taken me to some very dark places I wish I had never visited. I'm recovering, but some of the cognitive effects and memory loss remain. Not knowing how long it will take for the withdrawals to end creates anguishing anxiety. My tinnitus and hyperacusis was nothing compared to benzo withdrawals. I wouldn't wish them on anyone.

 

[BrOKeN_1]

Now I'm taking Wellbutrin for anxiety and Olanzapine for sleep. However I am still struggling to get more than 4-5 hours of sleep a night. Olanzapine worked great for me before getting tinnitus but now it's only doing a mediocre job. I think my brain has to adapt and accept the tinnitus first before I'll be able to get my sleep back. I think it's just going to take time.

Same boat, different drugs my friend. Prozac seems to be helping me cope. And Lorazepam is only keeping me down for about 4 hours. I have backed off suicidal ideation thank God. But it seems like habituation is very elusive.

 

[Johan001]

Thank you very much all who responded and apologies for not getting back to you earlier, I was really far out.

I thought I'd give a little update. On the positive side, I seem to be past the suicidal stage, which was surreal. What eventually helped me was Tibetan medicine, mainly agar 35, which seemed to work well for sleep (in combination with Mirtazapine). I was initially skeptical about it, but it was probably the only notable thing that did actually help.

I'm still in a highly anxious stage, filled with extreme grief and self blame, but I have more moments throughout the day when I kind of doing ok.

I've had a whole pile of personal problems, such as breakup from toxic abusive relationship, being unable to see my family during lockdown and my previous company going bust, having not paid me since July.

Despite that, I managed to restore my sleep a bit (from 2 hours per night to 8 on average ), albeit with breaks and huge grief upon awakening. Another milestone was starting a new job, which gives me a good distraction. I had no idea how I'd even sustain a job with tinnitus but I've pulled through.

I'm still nowhere near habituation, still suffering mightily, but at the same time notably better than when I was writing the original post. I guess that's my first small victory.

 

[Brian P]

I made the mistake of thinking a psychiatrist could help me with insomnia caused by tinnitus. When she told me she had never treated a tinnitus patient, that should have been the red flag to walk away. Instead, I allowed her to convince me that Lorazepam was safe and that 1mg was a small dose (it is not, it is 10 Valiums). A few months later I started having really strange symptoms of depersonalization/derealization, mood swings, crying for no reason, dark thoughts, morning panic attacks all of which she attributed to depression and a worsening of anxiety. I told her I wanted to stop taking it and she switched me to other non-addictive sleep aids without tapering me off first. I thought I was losing my mind and developed new symptoms, night sweats and hand tremors, until I posted my symptoms in a Facebook group and some knowledgeable person correctly diagnosed it as benzodiazepine withdrawals. By then I was already a month cold turkey and didn't want to risk kindling to reinstate and do a proper taper.

The withdrawal has taken me to some very dark places I wish I had never visited. I'm recovering, but some of the cognitive effects and memory loss remain. Not knowing how long it will take for the withdrawals to end creates anguishing anxiety. My tinnitus and hyperacusis was nothing compared to benzo withdrawals. I wouldn't wish them on anyone.

Did your benzodiazepines tinnitus ever go away?

 

[Gary Pitts]

Clonazepam helps keep my volume down to a more reasonable level. My doctor prescribed it after I had 2 months of hell unrelated to tinnitus. Finding that it helped my tinnitus was an added bonus. It also fixed the many physical symptoms I had been experiencing. It was a miracle drug!

I've been on them almost 34 years now. I have tried to taper down 3 times and in every case it makes my tinnitus louder and puts my psyche in a bad place. I guess I'm addicted, but I also think I was trying to taper too fast, about 25% at a time. I'd be fine for 3 or 4 days then get in a bad place and go back to my full dose, 1 mg at night and 1 mg in the morning. I'd like to try tapering again, but at a 5-10% rate and may talk to my doctor about this on my next visit.

 

[Johan001]

Clonazepam helps keep my volume down to a more reasonable level. My doctor prescribed it after I had 2 months of hell unrelated to tinnitus. Finding that it helped my tinnitus was an added bonus. It also fixed the many physical symptoms I had been experiencing. It was a miracle drug!

I've been on them almost 34 years now. I have tried to taper down 3 times and in every case it makes my tinnitus louder and puts my psyche in a bad place. I guess I'm addicted, but I also think I was trying to taper too fast, about 25% at a time. I'd be fine for 3 or 4 days then get in a bad place and go back to my full dose, 1 mg at night and 1 mg in the morning. I'd like to try tapering again, but at a 5-10% rate and may talk to my doctor about this on my next visit.

You may want to join a support group dedicated to benzo withdrawal. 25% is very fast indeed. Most doctors would not be very helpful unfortunately, they could encourage you to actually taper very fast, which can be detrimental. Some even advised cold turkey! Check Ashton protocol, it's a good starting point.

I recently came off Mirtazapine and they advised to go 5 percent per month, which sounds extremely slow, but if you go too fast you may not even be able to get back to normal after reinstating the original dosage - many folks struggled with that - they went fast, got severe withdrawals, got back to the original dosage and they are still suffering. Whereas those who taper slowly, it takes them much longer and you need to maintain hard discipline (the feeling of wanting to be clean is very strong), but that's how you minimise all risks in the long run.

So the bottom line is, never listen to a doctor when it comes to tapering drugs but rather to first hand experiences of educated fellow sufferers (not those who gamble with going cold turkey).