Suicidal

[Kriszti]

@LongWait
3yrs...? I'm 3rd week and the same. There's no cure, no chance of recovery! This has stripped everything from me - I'm 45, broke, live with my parents and unable to function.. Grappling with this hand I've been dealt but can't see me being here in 6mths..
How remains the ultimate question..

You are at 3 weeks, it's premature ending it all after 3 weeks. There is no doubt that tinnitus is horrible. People without it can't even fathom how fckng awful it truly is. Something this terrible, debilitating shouldn't exist at all. I can absolutely relate that you can't see living with it, because it sucks the will to live out of you.

I don't want to give you false hope, BUT!

You are in the acute stage, the 24/7 flight or fight phase, there is a chance that you won't end up with the same sounds that you are hearing right now. There is also a chance (slim, but there is), that it can go away. Many people see improvement months/years after onset. Wait a little longer.

I don't want to sound preachy, I don't have any right for it, because I'm not doing so well myself either, but it did improve compared to how it started.

Try to hold on!

 

[Johan001]

Hi all,

Just an update from me. I've gone on 15 mg mirtazapine for sleep and councelling. It's been a horrible month but I managed to get myself from 0% to 30% of my old self. Living day by day really, but fighting.

I do not have such strong suicidal ideations as when I was writing the above post. I definitely still think about it, but then realise that's not the solution. I'm blessed to be surrounded by understanding people, so it makes it a bit easier to deal with.

I read a lot of inspirational stories such as Christoper Reeve's one. I can only imagine what he went through accepting his condition. He is a true hero and inspiration. So I always think, I can do that with tinnitus. I rediscovered faith and saw progress with it too.

I'm still struggling a lot, but I believe in our brains' capacity to adapt. I read Dr Nagler's story and tips and they are inspirational as well.

I think, one can always pull the plug, but what if there is hope?

I also saw interviews with celebrities who had it, such as Shatner or Letterman. I'm sure they struggled in the beginning too.

I read success stories in this forum and it gives hope too. I'm certain we can adapt to this, how hard it may not be. I'm very skeptical about the cure (especially now as everyone is obsessed with coronavirus), so we are just left to deal with this the best we can. Relying on our inner strength and agility of our mind.

 

[Chinmoku]

@LongWait
3yrs...? I'm 3rd week and the same. There's no cure, no chance of recovery! This has stripped everything from me - I'm 45, broke, live with my parents and unable to function.. Grappling with this hand I've been dealt but can't see me being here in 6mths..
How remains the ultimate question..

Approaching 2 years and I feel the same. At this level of 24/7 intrusive torture there is no habituating to it. And it keeps getting worse.
I'm hanging on and agonizing through each day for my kids. I'm still desperately searching for relief and trying to revert this trend but nothing seems to work and honestly I don't know how much longer I can take it. So I'm with you.
Having said that, @LongWait , there are people who habituated after 3-4 years

and @Drewski , you are very early, statistics is on your side and it could fade in time.

 

[Drewski]

@Chinmoku
I already suffer chronic almost unmanageable pain from a back condition so this is now piled on top of that.. The future looked grim before this..as I'm basically bed ridden!

 

[serendipity1996]

@Contrast I saw that you also experienced facial numbness from sound. How long did this last and did it eventually go away? I haven't had any ear pain or burning since late March/ early April and don't really have loudness hyperacusis but I still have lingering facial tightness. It's fairly mild at this point and on many days I can almost 'ignore' it but amps up from lack of sleep and stimulants. Just worried it's never going to go away.

 

[JohnDoe8776059]

People trying to prevent suicide seem to be in favour of resilience propaganda. Anti suicide groups don't advocate for biomedical research, nor do they talk much about physical health problems.

They only focus on depression and mental health problems which are very important for some, but they don't cover our niche of physical suffering.

Suicide is an inevitable consequence in this modern world. We need to treat it similarly as an environmental killer rather than saying it is a personal choice. The truth is that humans are impulsive animals who cannot completely control their emotions and choices.

You look both ways on the road to avoid being hit. You avoid cliffs from falling off. You avoid dark alleys to not get stabbed or robbed. You live a happy lifestyle to avoid dying from suicide.

Some say that suicide is a cowardly way out, but I believe that every person has their limits. Some just so happen to be born more resilient than others. And just like a muscle, resilience can be trained to become stronger but it cannot lift everything.

Nobody truly wants to cope and struggle. Everybody wants a solution instead. I think only reason we endure suffering is because there is hope and purpose that is stronger than our suffering.

 

[PeteJ]

Suicide is an inevitable consequence in this modern world. We need to treat it similarly as an environmental killer rather than saying it is a personal choice. The truth is that humans are impulsive animals who cannot completely control their emotions and choices.

You look both ways on the road to avoid being hit. You avoid cliffs from falling off. You avoid dark alleys to not get stabbed or robbed. You live a happy lifestyle to avoid dying from suicide.

Some say that suicide is a cowardly way out, but I believe that every person has their limits. Some just so happen to be born more resilient than others. And just like a muscle, resilience can be trained to become stronger but it cannot lift everything.

Nobody truly wants to cope and struggle. Everybody wants a solution instead. I think only reason we endure suffering is because there is hope and purpose that is stronger than our suffering.

Some people go through stress and other anxiety-causing experiences but tinnitus is unique in that it's not normal to have loud ringing in your head or ears 24/7 and there is no treatment for it. I am talking about severe tinnitus too, obviously.

I think suicide or wanting suicide is a rational response or desire when you have persistent loud ringing, multiple high pitched tones 24/7. That shouldn't be happening and is a f***ed up state for the brain and/or ears. Then there's hyperacusis and ear pain on top of that for many people.

I think there's other serious conditions that aren't as bad relatively speaking and most of those have some sort of treatment. I would do anything to stop this ringing. I don't even read the treatment section anymore because it seems hopeless and a waste of time.

If there is no hope for improvement or a so-called "cure", this torture is not worth enduring.

 

[DaveFromChicago]

Frequently I completely understand PeteJ's comment about no longer even bothering to read the treatment section.

Check out this article posted on line in June 2020: "I Was Suicidal: Huey Lewis Opens Up About His Hearing Loss Nightmare."

The reporter said that "Lewis has consulted several ear specialists including experts from the House Ear Institute, and the Mayo Clinic. "I've talked to Dr. Steven Rauch, the big daddy of them all, at Mass General Eye and Ear. Tried chiropractic, acupuncture, low-salt, all organic, no chocolate, no caffeine, essential oils, all the holistic stuff. None of it works."

If someone with his notoriety and influence cannot find an effectual treatment, then we are compelled to conclude that none yet exists.

 

[FGG]

Frequently I completely understand PeteJ's comment about no longer even bothering to read the treatment section.

Check out this article posted on line in June 2020: "I Was Suicidal: Huey Lewis Opens Up About His Hearing Loss Nightmare."

The reporter said that "Lewis has consulted several ear specialists including experts from the House Ear Institute, and the Mayo Clinic. "I've talked to Dr. Steven Rauch, the big daddy of them all, at Mass General Eye and Ear. Tried chiropractic, acupuncture, low-salt, all organic, no chocolate, no caffeine, essential oils, all the holistic stuff. None of it works."

If someone with his notoriety and influence cannot find an effectual treatment, then we are compelled to conclude that none yet exists.

Huey Lewis has Meniere's which is a very specific etiology. If you also have Meniere's, Otonomy has a Meniere's drug in phase 3 with very promising results which is looking to be released next year.

Huey's is too early to be "end-stage" Meniere's, so it might really help him.

This is from the phase 1 results from OTO-104 (they are on phase 3 now):

"Otonomy Inc has announced positive new results from a Phase 1b study of OTO-104 intratympanic (IT) injection in patients with Ménière's disease. The data showed that patients treated with OTO-104 experienced clinically meaningful reductions in vertigo frequency and improvements in tinnitus as compared to placebo."

One of the co-founders of Otonomy has Meniere's himself, in fact.

 

[Johan001]

Hi all,

Now I have to write in this section again.

My 6 weeks journey has been with severe ups and downs so far. Mainly downs. Deep downs.

As my multitonal tinnitus is raging in my right ear, I am feeling extremely restless all the time. It's a constant state of panic, I'm afraid of everything, afraid of going to sleep, afraid of staying indoors. I have an extreme anxiety and trying Mirtazapine 30 mg. But each day is a torture for me. I have decided that I cannot live like this, every day is full of severe unbearable pain.

Not only I cannot imagine living like this, I cannot live like this now at all.

I attempted suicide yesterday. I do not want to die, but the suffering is too much for me to handle. I'm mentally broken and severely traumatised. I want to get out of this, so it looks like the suicide is the only way. I am coming to terms accepting the pain I will endure when doing it and pain it will cause others, but I just can't bear it. I know many of you guys get used to it and carry on, but I'm the worst person to accept this.

 

[Christiaan]

Ey @Johan001, I am sad to hear your story. It's very difficult to get through this. Maybe there's something in store for you to help alleviate your symptoms. Do you happen to live in the Netherlands/Belgium? Chances are Astellas will start their trial with FX-322 in Western Europe end of year or next year, which could help alleviate tinnitus. There's also a trial at the academic hospital on Antwerp with tDCS, and lots of people had mentioned a lowering in their symptoms. I hope you consider other options and that you can get through it all.

 

[Daniel Lion]

Approaching 2 years and I feel the same. At this level of 24/7 intrusive torture there is no habituating to it. And it keeps getting worse.
I'm hanging on and agonizing through each day for my kids. I'm still desperately searching for relief and trying to revert this trend but nothing seems to work and honestly I don't know how much longer I can take it. So I'm with you.
Having said that, @LongWait , there are people who habituated after 3-4 years

and @Drewski , you are very early, statistics is on your side and it could fade in time.

Hi Chinmoku,

I would be grateful to my core and then more if my brain could make the neuro plastic changes that this man did.

 

[ASilverLight]

I had a phone call appointment with an ENT today and mentioned I've been suicidal because of the severity of my tinnitus and all I was told was to find distractions so it becomes less, which is what I've been doing for MONTHS without any positive result.

I haven't been taken seriously whatsoever despite my many other symptoms and I'm not improving, I don't see myself improving, I'm so fucking tired because my life has been so full of pain and this is just the latest edition and I don't want to go on like this. I'm only in my mid 20s and it's already so bad.

I'm so tired and no one seems to realise how badly I am doing at all. When even mentioning you're suicidal doesn't make you heard, what gives?

I'm tired. I just want out.

 

[Johan001]

Hi @Christiaan, Thank you. I am from Holland indeed, currently in the UK because of the lockdown. Thank you for the update. I really hope there is a hope in these treatments, but I'm so skeptical about it. Feel like I have to live with these noticed my whole life. Everything is just falling apart, my whole life. I am so panicked, like there's no point suffering like this, it's too much for me.

 

[FGG]

Ey @Johan001, I am sad to hear your story. It's very difficult to get through this. Maybe there's something in store for you to help alleviate your symptoms. Do you happen to live in the Netherlands/Belgium? Chances are Astellas will start their trial with FX-322 in Western Europe end of year or next year, which could help alleviate tinnitus. There's also a trial at the academic hospital on Antwerp with tDCS, and lots of people had mentioned a lowering in their symptoms. I hope you consider other options and that you can get through it all.

Hell, if it's life or death and you need a US address to be part of a clinical trial sooner than that, message me, @Johan001.

 

[PeteJ]

I had a phone call appointment with an ENT today and mentioned I've been suicidal because of the severity of my tinnitus and all I was told was to find distractions so it becomes less, which is what I've been doing for MONTHS without any positive result.

I haven't been taken seriously whatsoever despite my many other symptoms and I'm not improving, I don't see myself improving, I'm so fucking tired because my life has been so full of pain and this is just the latest edition and I don't want to go on like this. I'm only in my mid 20s and it's already so bad.

I'm so tired and no one seems to realise how badly I am doing at all. When even mentioning you're suicidal doesn't make you heard, what gives?

I'm tired. I just want out.

No one cares. I've known that for a while. The condition is invisible and that is what separates it from other conditions. When tinnitus is loud enough, nothing works. Distractions can only be so long. That's temporary. Loud multi-toned tinnitus is ongoing.

The treatments like FX-322 are pipe dreams like Neuromod.

 

[Chinmoku]

Hi Chinmoku,

I would be grateful to my core and then more if my brain could make the neuro plastic changes that this man did.

Me too, Daniel. I am trying to kick medication because it inhibits plasticity.

 

[Chinmoku]

No one cares. I've known that for a while. The condition is invisible and that is what separates it from other conditions. When tinnitus is loud enough, nothing works. Distractions can only be so long. That's temporary. Loud multi-toned tinnitus is ongoing.

The treatments like FX-322 are pipe dreams like Neuromod.

To be honest in my ordeal I have found at least two medical doctors who really cared (out of ten) but they were powerless to help me. It's not always the case that they don't care, the problem is that even if they cared the science is not there. What they could all do, however, is being more aware of the dangers with some medications in connection with tinnitus. Many medical doctors are negligent there.
Edit FX322 is not a pipe dream. It worked in an explanted cochlea. It improved word scores at low doses. We have never seen anything like this. We have to resist losing objectivity due to pain and bitterness

 

[Zugzug]

I had a phone call appointment with an ENT today and mentioned I've been suicidal because of the severity of my tinnitus and all I was told was to find distractions so it becomes less, which is what I've been doing for MONTHS without any positive result.

I haven't been taken seriously whatsoever despite my many other symptoms and I'm not improving, I don't see myself improving, I'm so fucking tired because my life has been so full of pain and this is just the latest edition and I don't want to go on like this. I'm only in my mid 20s and it's already so bad.

I'm so tired and no one seems to realise how badly I am doing at all. When even mentioning you're suicidal doesn't make you heard, what gives?

I'm tired. I just want out.

Feel very similarly. Suicidal, 20's, not taken seriously. I don't think ENTs have anything to offer. The best thing ENTs could do is collectively push for the current regeneration drugs to be expedited as fast as possible.

 

[Zugzug]

The treatments like FX-322 are pipe dreams like Neuromod.

You may be right that FX-322 doesn't work for us (at least some). But I think it's unfair to say that this method of science is the same as Neuromod. At the very least, FX-322 gets us much closer than Neuromod, no?

 

[Johan001]

When I came to see the private ENT at a prominent hospital in London, and was severely distressed, he said: "do you have breast cancer? No? Well, my wife has it, so that's more serious than your little ringing". This was in the first week of my onset and I nearly broke in tears there. Well, I suppose I'm not "tough enough" then.

Tinnitus comes in various shapes and it looks like the majority of people associate it with a slight monotone beep. If I had that, I wouldn't be on this thread. So, the outside world needs more awareness of the severity of this condition.

 

[just1morething]

When I came to see the private ENT at a prominent hospital in London, and was severely distressed, he said: "do you have breast cancer? No? Well, my wife has it, so that's more serious than your little ringing". This was in the first week of my onset and I nearly broke in tears there. Well, I suppose I'm not "tough enough" then.

Tinnitus comes in various shapes and it looks like the majority of people associate it with a slight monotone beep. If I had that, I wouldn't be on this thread. So, the outside world needs more awareness of the severity of this condition.

Some ENTs are jerks and have no tact. They should have screaming noise in their ears/head and see how they like it.

 

[FGG]

When I came to see the private ENT at a prominent hospital in London, and was severely distressed, he said: "do you have breast cancer? No? Well, my wife has it, so that's more serious than your little ringing". This was in the first week of my onset and I nearly broke in tears there. Well, I suppose I'm not "tough enough" then.

Tinnitus comes in various shapes and it looks like the majority of people associate it with a slight monotone beep. If I had that, I wouldn't be on this thread. So, the outside world needs more awareness of the severity of this condition.

I'm angry at your ENT on your behalf. It is totally inappropriate to try to pull some sort of suffering olympics on you when you are clearly hurting.

 

[Chinmoku]

When I came to see the private ENT at a prominent hospital in London, and was severely distressed, he said: "do you have breast cancer? No? Well, my wife has it, so that's more serious than your little ringing". This was in the first week of my onset and I nearly broke in tears there. Well, I suppose I'm not "tough enough" then.

Tinnitus comes in various shapes and it looks like the majority of people associate it with a slight monotone beep. If I had that, I wouldn't be on this thread. So, the outside world needs more awareness of the severity of this condition.

This ENT is an @#$^$% and you should ask to be referred to a different one. Wait you said private? This must be a total ##%$$#. I saw three private ones in London but none of them said anything like that. Maybe even write to the registrar reporting the episode and explaining you are suicidal. Not that others would be able to help you much more, probably, but this attitude is inexcusable.

 

[Zugzug]

When I came to see the private ENT at a prominent hospital in London, and was severely distressed, he said: "do you have breast cancer? No? Well, my wife has it, so that's more serious than your little ringing". This was in the first week of my onset and I nearly broke in tears there. Well, I suppose I'm not "tough enough" then.

Tinnitus comes in various shapes and it looks like the majority of people associate it with a slight monotone beep. If I had that, I wouldn't be on this thread. So, the outside world needs more awareness of the severity of this condition.

I've experienced some cruel treatment over the years, but not like that. Damn. That's beyond ignorance -- really, it's sadistic.

 

[Johan001]

Yeah, I went to another one, who was more sympathetic. But that doesn't really help. Only someone with a tinnitus can understand us.

I wasn't suicidal back then, but over the course of these 6 weeks I became it. I even thought, yeah maybe I'm overreacting. But then after sleepless nights and constant anxiety I'm on the edge.

Just thinking how long I will last. I'm taking it day by day. Kind of giving myself a promise not to kill myself today. Then the same thing the next day etc.

 

[Kriszti]

When I came to see the private ENT at a prominent hospital in London, and was severely distressed, he said: "do you have breast cancer? No? Well, my wife has it, so that's more serious than your little ringing". This was in the first week of my onset and I nearly broke in tears there. Well, I suppose I'm not "tough enough" then.

Tinnitus comes in various shapes and it looks like the majority of people associate it with a slight monotone beep. If I had that, I wouldn't be on this thread. So, the outside world needs more awareness of the severity of this condition.

I'm furious at your ENT. I'm not saying that cancer is not horrible, I'm not saying that tinnitus is worse than cancer, because it's not a competition. But belittling your troubles which makes you suicidal is clearly just an inhumane, immoral thing to do. I give him that he is suffering on behalf of his wife, but this is inexcusable. "Little ringing"? Ok, nice, he should try not sleeping for months, not even with meds, experiencing life falling apart in every part, try the 'mind over body" idea with 24/7 sounds screaming at him, and the constant fckg fear of what can go even more wrong. I may be a bit harsh on him, because he clearly has problems in his life as well, but if he can't emphatize with his patients' "little" problems, he shouldn't be practicing medicine.

What can we expect from regular people, laymen if this is what medical professionals think about the issue. This makes me so sad.

I'm really, really sorry that you had to go through this.

 

[Johan001]

Thank you @Kriszti. It's very sad. I also hate this whole comparing business. Like, comparing it to paralysed people. It's so totally different. That's what many people, including my family told me, like a paralysed person would happily swap places with you. Well, maybe, but that's not the point.

I have never been afraid of physical pain and went trough lots of it in my life, laying in hospitals from the age of 3. But that's so different. I never cried daily and was thinking about ending my life non stop.

 

[Jazzer]

Yeah, I went to another one, who was more sympathetic. But that doesn't really help. Only someone with a tinnitus can understand us.

I wasn't suicidal back then, but over the course of these 6 weeks I became it. I even thought, yeah maybe I'm overreacting. But then after sleepless nights and constant anxiety I'm on the edge.

Just thinking how long I will last. I'm taking it day by day. Kind of giving myself a promise not to kill myself today. Then the same thing the next day etc.

'I know - I know - I know........x'

Nobody but us knows............x

 

[TheDanishGirl]

I'm losing this fight. There's no getting around it. I have nothing left. No friends, no love, no passion/interests... everything has been taken from me. I can kick and scream and despair all I want over it...

My situation: Severe hyperacusis (that's getting worse), tinnitus (also showing signs of getting worse), no social life, no interests, bad floaters (again... getting worse), relentless anxiety...

Let's face it. Its not survivable. Just hoping I'll come to terms with my approaching death.