Suicidal Tinnitus — Fact or Fiction?

[dan]

I think all us very severe sufferers should get together and approach researchers who study tinnitus using the latest technology such as fMRI and qEEEG, because obviously our tinnitus is different from the rest.
This is important because many research papers have concluded somehow that the loudness of tinnitus has very little bearing on the level of distress one experiences.
Personally I think their research is flawed....perhaps they did not have a patient with truly loud tinnitus like ours....So if 10 "loudies" offer to study their brains, perhaps they can pin point the problem more quickly, than if studying 100 mild/moderate sufferers.....I would imagine that a truly severe loud T sufferer does not have the willpower to participate in research studies.

 

[Danny Boy]

I think all us very severe sufferers should get together and approach researchers who study tinnitus using the latest technology such as fMRI and qEEEG, because obviously our tinnitus is different from the rest.
This is important because many research papers have concluded somehow that the loudness of tinnitus has very little bearing on the level of distress one experiences.
Personally I think their research is flawed....perhaps they did not have a patient with truly loud tinnitus like ours....So if 10 "loudies" offer to study their brains, perhaps they can pin point the problem more quickly, than if studying 100 mild/moderate sufferers.....I would imagine that a truly severe loud T sufferer does not have the willpower to participate in research studies.

It doesn't matter how loud the tinnitus is? I beg to differ. I mean, hearing it outside over everything is totally distressing...Not being able to sleep due to the loudness is horrific. I know this because I had severe tinnitus and now I have mild tinnitus, so I know the difference.

 

[sakrt]

"... and I now have this random Morse code T spasms that are impossible to habituate to..."

I totally sympathise with you as I am in the same boat. 24 hr continuous extremely loud low base-whirring, vibrating non-fluctuating T in my WHOLE head- not ears. My mind wants to ignore it so badly by trying to focus on trivial things, but how can one do so, when it impacts our focus or cognition? It's like something eating away at the brain & eyes. I've had this "knock knock" morse code like twice a month (out of the blue) on TOP of the whirring for a few seconds then it goes away. More often it's unexpected low base thumps, glomps like a hose releasing blocked water that causes uncontrollable head spasms-jerks. Do you have this?
I think the worse issue for me at this time - is the lack of support from so-called TOP "Specialists" in ENT unwilling to help. We pay high insurance/Drs. so much money, to be told "there's nothing we can do" after 12 wks appt. wait, without ANY assessments- is low standard of care. Why charge patients/insurance $700 for 1/2 hr. if they won't do anything, except write this in a report? Why avoid trying any strategy to evaluate that may help provide a true diagnosis, than state an "opinion" based on nothing? T & H is VERY broad, occurs from various factors.

 

[Danny Boy]

I totally sympathise with you as I am in the same boat. 24 hr continuous extremely loud low base-whirring, vibrating non-fluctuating T in my WHOLE head- not ears. My mind wants to ignore it so badly by trying to focus on trivial things, but how can one do so, when it impacts our focus or cognition? It's like something eating away at the brain & eyes. I've had this "knock knock" morse code like twice a month (out of the blue) on TOP of the whirring for a few seconds then it goes away. More often it's unexpected low base thumps, glomps like a hose releasing blocked water that causes uncontrollable head spasms-jerks. Do you have this?
I think the worse issue for me at this time - is the lack of support from so-called TOP "Specialists" in ENT unwilling to help. We pay high insurance/Drs. so much money, to be told "there's nothing we can do" after 12 wks appt. wait, without ANY assessments- is low standard of care. Why charge patients/insurance $700 for 1/2 hr. if they won't do anything, except write this in a report? Why avoid trying any strategy to evaluate that may help provide a true diagnosis, than state an "opinion" based on nothing? T & H is VERY broad, occurs from various factors.

Fortunately in the UK it's all free on the NHS, so we don't waste money needlessly. The USA health care sounds dreadful...How can you lot survive on private insurance?

 

[Street Spirit]

I don't have a wife or kids so I contemplate suicide every day nowadays. Especially since my T increased 3 months ago and I now have this random Morse code T spasms that are impossible to habituate to. All my previous tones were more or less constant so even if they were loud I could somehow live through it. But now T is on my mind 90% of the day every day. Nothing that I do brings me any joy anymore. So do I really gain anything by continuing to suffer?

My morse code was my first T..it doesn't bother me anymore..maybe that will.offer you some hope?

((((hugs))))

 

[dan]

It doesn't matter how loud the tinnitus is? I beg to differ. I mean, hearing it outside over everything is totally distressing...Not being able to sleep due to the loudness is horrific. I know this because I had severe tinnitus and now I have mild tinnitus, so I know the difference.

Tell that to tinnitus researchers!!!!!

 

[Danny Boy]

Tell that to tinnitus researchers!!!!!

Well, they obviously don't have tinnitus lol

 

[dan]

Well, they obviously don't have tinnitus lol

obviously lol

 

[dan]

"Consistent with previous studies, tinnitus loudness was not related to tinnitus-related distress and depressive state........"

source:
http://www.ncbi.nlm.nih.gov/pubmed/23825684

 

[sakrt]

"Consistent with previous studies, tinnitus loudness was not related to tinnitus-related distress and depressive state........"source: http://www.ncbi.nlm.nih.gov/pubmed/23825684

That's total B.S. Their "hypothesis" using a MRI, based on how many subjects and what form of T? Does not say.
Does not state if the subjects had any depression before they got T, does it?

If there was a way to make it contagious - I'd be so willing to share mine with these happy labcoats.
I'd be SO HAPPY to reverse the situation to see how they react with it. They'd be jumping for joy.

 

[dan]

I think what they are saying is that tinnitus loudness network and tinnitus distress network are 2 different entities- according to their MRI's, so 2 people with the same loudness could have different distress levels.
I agree it sounds bullshit - I think after a certain loudness you will be distressed badly no matter how good your brain is at ignoring sounds. I dont think they have had very loud tinnitus subjects such as we have here on the forum - I mean people with disabling tinnitus dont have the luxury to participate in fancy tinnitus studies, as they are busy just trying to get thru the next day....

Edit : however I do believe this is part of the reason that severe Tinnitus isnt taken as seriously as it should be - because they think its all in our REACTION and its our fault that we cant habituate our tinnitus.

 

[Max_fcktr]

I don't have a wife or kids so I contemplate suicide every day nowadays. Especially since my T increased 3 months ago and I now have this random Morse code T spasms that are impossible to habituate to. All my previous tones were more or less constant so even if they were loud I could somehow live through it. But now T is on my mind 90% of the day every day. Nothing that I do brings me any joy anymore. So do I really gain anything by continuing to suffer?

maybe try get girl for love, or going with friends on camping. Also drinkin some alcohol, You can take some strongest from it, if else udont belivin n it now

 

[LeQuack]

maybe try get girl for love, or going with friends on camping. Also drinkin some alcohol, You can take some strongest from it, if else udont belivin n it now

I would if I didn't have tinnitus.

 

[Nucleo]

That's total B.S. Their "hypothesis" using a MRI, based on how many subjects and what form of T? Does not say.
Does not state if the subjects had any depression before they got T, does it?

If there was a way to make it contagious - I'd be so willing to share mine with these happy labcoats.
I'd be SO HAPPY to reverse the situation to see how they react with it. They'd be jumping for joy.

I think the problem lies with measuring loudness in an audiological booth. It's obviously not the same. They are comparing sound pressure levels with brain MRI images. Great.

When measuring tinnitus loudness with headphones, the patient is presented with their tinnitus matched frequency and increased until they are equal. So it's kind of a Schrodinger's Cat thing. When stimulating the auditory cortex at the tinnitus frequency you could be partially masking the tinnitus.

 

[LadyDi]

I understand the skepticism. But as the headline says: Numerous studies have shown that loudness and tinnitus distress do not necessarily go hand in hand. Not sure why this statement bothers some people, since it doesn't really matter. If you are distressed, that is the only thing that's important. Your loudness match is irrelevant. You still are suffering.

 

[Danny Boy]

I understand the skepticism. But as the headline says: Numerous studies have shown that loudness and tinnitus distress do not necessarily go hand in hand. Not sure why this statement bothers some people, since it doesn't really matter. If you are distressed, that is the only thing that's important. Your loudness match is irrelevant. You still are suffering.

I've had mild and really bad tinnitus and there's a massive difference that's for sure.

 

[Geo]

I've had mild and really bad tinnitus and there's a massive difference that's for sure.

Big difference!!! i would jump for joy if i can have mild t back...."biG Difference"

 

[Geo]

Its the ones with mild t making these assumptions when they never suffered from it ...

 

[Danny Boy]

Its the ones with mild t making these assumptions when they never suffered from it ...

I know, does annoy me...I know I have mid t now, but I can say that living with super bad tinnitus can kill you and I did nearly kill me. I'm just thankful I managed to get treatments to help me. Tinnitustalk and the people on here saved me and I am most grateful and thankful.

 

[Danny Boy]

Its the ones with mild t making these assumptions when they never suffered from it ...

By the way are you still on keppra? I'd like to know how it's progressing.

 

[sakrt]

I think the problem lies with measuring loudness in an audiological booth. It's obviously not the same. They are comparing sound pressure levels with brain MRI images. Great.....

I have never read or heard any valid publications (not hypotheses) of audiologists, otologists or oto-neurologists using brain MRIs and/or Catscan imaging to measure or capture "sound pressure levels".

It's easier for Drs. to prescribe people anti-depressants, tranquilizers or anti-seizure meds, as there's nothing else. I bet everyone on this forum has been redirected by their Drs. in being labelled to have depression/anxiety/OCD etc., instead of seriously assisting their T & H. Easier said then done.

Irony is many of those meds worsen T & H, have warning labels of "increases thoughts of suicide"... especially when trying to wean off them.

 

[Nucleo]

I have never read or heard any valid publications (not hypotheses) of audiologists, otologists or oto-neurologists using brain MRIs and/or Catscan imaging to measure or capture "sound pressure levels".

No. They are trying to find correlation between rGC (MRI data) and tinnitus matched loudness measured audiologically. They find that there is a correlation between MRI and tinnitus loudness but since tinnitus loudness does not correlate with the levels of distress determined with questionnaire scores, they conclude that loudness is not related to distress. A hasty conclusion I think.

 

[DavetheAce]

How can we find out what the suicide rate is for T vs the general population when we know information is not accurately reported. When my mother died from lung cancer, I did an obit that included why she died and that was conveniently edited out (from something I was willing to pay for) from the newspaper by the paper.

It may be difficult but ought to be possible to determine a suicide rate where T is a factor. Simply, in the UK on the death certificate the actual cause of death is recorded, but so should any "underlying cause of death". This of course presupposes that the doctor concerned would know about the T condition. There are also complications whereby the T sufferer may also be diagnosed as suffering from 'depression'. It would be reasonable to assume that most civilized Countries record similar detail.
A quick search identified a retrospective study being carried out on T suicides. Though no comparison was carried out with 'ordinary suicide rates', it did identify that the specific victims were characterized by being male, elderly and socially isolated.
Perhaps the difficulty may be how far back you need to analyse.
Cause of death was (method)
Cause of (method) was depression
Cause of depression was tinnitus
Cause of tinnitus was .... etc.

Edit: just to demonstrate the difficulty to which I was alluding, I followed another link which indicates that in France (GB and USA similar), the psychiatric diagnosis of suicides shows 64% suffering from depression. http://www.ncbi.nlm.nih.gov/pubmed/7828512

 

[Danny Boy]

I have never read or heard any valid publications (not hypotheses) of audiologists, otologists or oto-neurologists using brain MRIs and/or Catscan imaging to measure or capture "sound pressure levels".

It's easier for Drs. to prescribe people anti-depressants, tranquilizers or anti-seizure meds, as there's nothing else. I bet everyone on this forum has been redirected by their Drs. in being labelled to have depression/anxiety/OCD etc., instead of seriously assisting their T & H. Easier said then done.

Irony is many of those meds worsen T & H, have warning labels of "increases thoughts of suicide"... especially when trying to wean off them.

Agreed..When I first got tinnitus, they gave me valium and amitriptyline. That's their solutions more benzo=worsen of tinnitus. No wonder people with tinnitus kill themselves. Horrible, just horrible.

 

[Brianna]

It may be difficult but ought to be possible to determine a suicide rate where T is a factor. Simply, in the UK on the death certificate the actual cause of death is recorded, but so should any "underlying cause of death". This of course presupposes that the doctor concerned would know about the T condition. There are also complications whereby the T sufferer may also be diagnosed as suffering from 'depression'. It would be reasonable to assume that most civilized Countries record similar detail.
A quick search identified a retrospective study being carried out on T suicides. Though no comparison was carried out with 'ordinary suicide rates', it did identify that the specific victims were characterized by being male, elderly and socially isolated.
Perhaps the difficulty may be how far back you need to analyse.
Cause of death was (method)
Cause of (method) was depression
Cause of depression was tinnitus
Cause of tinnitus was .... etc.

Edit: just to demonstrate the difficulty to which I was alluding, I followed another link which indicates that in France (GB and USA similar), the psychiatric diagnosis of suicides shows 64% suffering from depression. http://www.ncbi.nlm.nih.gov/pubmed/7828512

I looked at the link and the problem is glaring (I always check this and succeed or fail).

Encephale. 1994 Sep-Oct;20(5):495-503.

There's other code behind-the-scenes with other dates but I can't tell which is related to the study. If it's 1994, it's totally obsolete.

Most civilized countries (as you write) should be recording details of this but it's still difficult to determine its accuracy. And, the U.S. is far from forthcoming about cause of death. Cause of tinnitus was _______ I don't think we'll ever see that and if we do, I'd question the accuracy of it .

 

[Street Spirit]

Agreed..When I first got tinnitus, they gave me valium and amitriptyline. That's their solutions more benzo=worsen of tinnitus. No wonder people with tinnitus kill themselves. Horrible, just horrible.

Are there actual studies to show that benzos worsen tinnitus?? or just the withdrawl can worsen tinnitus? and if so what percentage?

 

[Brianna]

Are there actual studies to show that benzos worsen tinnitus?? or just the withdrawl can worsen tinnitus? and if so what percentage?

Simple two cents here. I've looked at various "study results" on the internet. Some website adamantly state benzos do not cause tinnitus. Some websites warn they do. It's a "to be expected" result. (I'm focused on US websites.) But I think we can logically dissect this.
1. Enough of us know you can't trust websites results and we read them anyway and often
take them seriously. But how much is true?
2. When benzos are titrated off, don't your stress levels begin to go up and may cause tinnitus.
2a. I know for sure with my body that higher stress levels cause T to be louder. This is really obvious.

I give up looking for reports because of the mixed messages I see from the web.

 

[jeannie]

I hate to say this but maybe the ones researching and making these assumptions came down with tinnitus for a month or 2 to where it effects there every day life like it does ours and they cant sleep and feel like they are going crazy, and have there whole life change, and start having panic/ anxiety which in itself creates other problems then they would be changing there words, its easy to sit back and not have tinnitus and tell someone I feel so bad for you or whatever they say and go about your normal living, no one has a clue!!! until they experience it. I SAY FUT!!!!

 

[Street Spirit]

Simple two cents here. I've looked at various "study results" on the internet. Some website adamantly state benzos do not cause tinnitus. Some websites warn they do. It's a "to be expected" result. (I'm focused on US websites.) But I think we can logically dissect this.
1. Enough of us know you can't trust websites results and we read them anyway and often
take them seriously. But how much is true?
2. When benzos are titrated off, don't your stress levels begin to go up and may cause tinnitus.
2a. I know for sure with my body that higher stress levels cause T to be louder. This is really obvious.

I give up looking for reports because of the mixed messages I see from the web.

Yes...I agree. I am just going to taper and what will be, will be. I'm sick of worrying about it and it's becoming more and more useless for my ears leaving me no reason to be on it anymore. My psychiatrist agreed to not taper me off until I am "stable" and we can cross taper to Valium.

Off topic but I was in hospital again the other night for a severe migraine that gave me awful neurological symptoms. Was scary. Anyways, the meds they gave me doubled my T and have been in a crazy spike (or permanent worsening) since..You just never know!

 

[DavetheAce]

Just a couple of comments. I don't think we will ever truly get an accurate suicide rate where the root cause is T. Also, I know many commenters report that their T has been worsened by increased stress levels. I am adamant that my stress levels are increased by a T spike and NOT the other way round. That is why I have focussed on my intake and other factors that may have produced the spike. I do take a pill to alleviate the stress, but this is to help me remain calmer during the spike which I believe reduces 'naturally'. Street Spirit, we all do or have worried about a permanent worsening, I sincerely hope that this is not the case for you and that those meds wear off quickly.