Suicidal

[TrevorSanders]

I'm sorry to hear you're in such a bad place. Unfortunately, this is a common theme for people suffering from this terrible affliction. I see you also have CFS and the hopelessness and depression is crushing you. I know somewhat how you feel and its certainly more heartbreaking that you are willing to leave your family behind because the pain is unmanageable.

I would like to give you some hope and a few suggestions.

Firstly, there may be some treatments coming in the near future (2-3 years). We don't know how effective they are and if they'll treat every type of tinnitus, but there is strong evidence that some treatment will come to market soon.

Secondly, there is a massive influx of funding for ME/CFS due to Long COVID-19. On top of that, some of the greatest minds in medical research are working on treatment for CFS. Ron Davis has narrowed down some treatments that do work and help many CFS sufferers (Abilify, etc.). They are now working on the Metabolic Trap Theory and testing every possible medication and herb to see if it can help with the metabolic trap and faulty IDO1 receptor. I believe that we have never been closer to a cure.

I don't always want to go back to this, because I don't believe its a cure all or miracle drug, but have you tried LDN? There are many success stories of people with CFS, POTS and even tinnitus. Also, please have a look at this article I found:

Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment

The article specifically mentions resolution of tinnitus for patient (along with remission of the rest of their symptoms). I will likely start a separate thread to discuss the article because I find it amazing that even the patient's tinnitus was cured (understandably the tinnitus was caused by these other conditions).

Lastly, these diseases (tinnitus and CFS) are mentally straining and seem to either cause more harm to or target people with mental instability. Many people with CFS and/or tinnitus are depressed and anxious and that is understandable; so many times I read posts that someone is depressed because of these issues and I'm sure its true a lot of the time, but I would guess that for many people, if their symptoms resolved, we would still see an underlying mental health issue. Have you considered Ketamine therapy? I mention this because it is used to treat suicidal ideology and ironically seems to have a positive effect on tinnitus. If you woke up tomorrow, still had CFS and tinnitus and yet felt pretty great all round and could cope with your issues, do you still think that you would consider ending it in September? I feel like for many people, we don't need to cure the ringing, we just need to help them get past the ringing mentally. I understand this is all easier said than done but please consider all avenues first, especially for your family. I think some of the treatments I have posted might help you greatly.

Would we be telling people with chronic pain or any other disease to just get past it mentally?

 

[Lukee]

Would we be telling people with chronic pain or any other disease to just get past it mentally?

I'm not suggesting that we do that. What I am saying is, if you are content and the ringing doesn't bother you or affect your QoL, does it matter? Obviously a cure is the end game but if people can move past the ringing and still enjoy their life is that not worth it? So anyone with a chronic condition we just let them die because we can't help them? No, we try to alleviate the symptoms... to me the ringing is the chronic condition, the depression and poor QoL are the symptoms with this condition.

This is a terrible thing and I don't wish it on anyone but let's try to be realistic and supportive before we decide on final decisions.

There is a documentary on cancer patients and chronic sufferers using Psilocybin to treat their depression. They still feel pain, have limited mobility, have had their lives changed drastically; however, these people use the mushrooms to give them a new lease on life. Practically all of them live a proper, fulfilling life or for some, whatever they have left of it. So the argument is, just because we cannot cure their disease should we not give them a chance to live happily?

 

[OptimusPrimed]

Thank you @GBB. I will have a read, currently reading the Clonazepam post. I've been prescribed it before but was too scared back then.

Yes @Sayeed, I've got nothing left to lose, I also suffer with CFS so find each day such a battle, it's all quite heart breaking to get to this point.

I understand you're suffering. You have to understand though, that most if not all of us are also suffering. There are people on the street suffering from this condition, and other conditions that are worse. Life isn't always rosey and care free and pain free. Some of us are lucky and live into old age with no pain while others are not so lucky.

Please keep pushing forward for your children. Use maskers, mask before you go to bed, take Melatonin, work on improving your diet, exercise, work on ways to reduce stress in your life and to cope with it. If you could regret committing suicide, you likely would. You'll miss all those moments with your children and they will surely miss you. Push forward for them. I know it is not easy. But you have to understand when you take your own life you give away your suffering to others and they suffer the rest of their lives. Plus, there are treatments coming. Although I personally am not too optimistic, things could change any time. Your tinnitus could get better with improved lifestyle choices or improving health. Or they could bring out a drug or treatment that may help.

Take care of yourself, hope not rope.

 

[Dana]

I've also asked the doctor (2 weeks ago) to try Clonazepam. Please can anyone say, bearing in mind I don't plan on being around forever, if Clonazepam will help ease my suffering long enough to enjoy one last summer with my kids.

Clonazepam, to be sure of its effect I am referring ONLY to Roche brand and not others (I have tried Clonotril and Klonazepamum and they were terrible, hard to say which was worse out of the two of them), will SAVE your life, not only enable a last summer with your kids.

You can taper up, using 0.5 mg per evening up to 2 mg per evening, to not have a sudden big effect.

I used it for years, and am still alive.

Have to be honest, I still have tinnitus. Clonazepam (Rivotril) may not cure your type of tinnitus, but I believe strongly that it will take "suicide" out of the "to do" list.

You will live as long as the other organs will allow you to, just like in every normal life.

It may affect your liver somewhat, but you can watch it, and you do not have to take it for the rest of your days.

If you consider suicide, you must try Rivotril. You must try everything, for you and for your kids.

I was suicidal, Rivotril enabled life.

You will have your life back, still with tinnitus in your ears, but boy, does it help habituation, or what.

If you have a spike after you have taken it for a while and stopped, you can take a pill again.

I do not keep an exact log, but in the past year I have taken a pill or two.
In the past 6 months I have taken 1 pill.

 

[Dana]

Personally, Clonazepam reduces my tinnitus to basically nothing for around 4-5 hours. It's quite addictive but, when taken moderately (once or twice a week), shouldn't have you develop an addiction.

Same here, I used to take 2 mg in the evening, it diminished tinnitus down to negligible and has, at 2 mg, a big enough sedative effect to prepare me for sleep, sleeping a number of hours enough to get charged with enough energy to live that day, strength to go through that day, and in the evening I was taking another pill.

So on and so forth.

In time I was able to reduce the dose more and more.

 

[Chinmoku]

Same here, I used to take 2 mg in the evening, it diminished tinnitus down to negligible and has, at 2 mg, a big enough sedative effect to prepare me for sleep, sleeping a number of hours enough to get charged with enough energy to live that day, strength to go through that day, and in the evening I was taking another pill.

So on and so forth.

In time I was able to reduce the dose more and more.

This is interesting, Dana, may I ask you more? From a lot of anecdotal reports also on BenzoBuddies, it looks like the effective dose for severe tinnitus is 2 mg. I was given 0.5 mg to start with but the effect lasted 2 weeks and then the tinnitus started a pattern of continued worsening and now it is practically unbearable. I never increased the dosage but what bothers me is the worsening at a constant dosage. I often considered asking my doctor to increase to 2 mg but I'm always scared that the worsening continues even at a higher dose, or even intensifies, and then I'm done. Not that I have much to lose at this point, it's continued torture, but the uncertainty is difficult to beat. My instinct would be to taper to 0 mg but I'm finding it impossible in these conditions. A taper should be done when one is stable, I'm not stable at all.

Did you experience worsening at a constant lower dosage? 2 mg is a lot compared to what my doctors recommended.

 

[AfroSnowman]

Would we be telling people with chronic pain or any other disease to just get past it mentally?

I think that is exactly what they tell people with chronic pain to do. I was just looking up chronic pain (because isn't that what tinnitus is?) and the webpages that came up were all CBT and habituation type of guidance.

 

[BrOKeN_1]

I point to mostly shit genes and youth ignorance.

Shit genes or not, no amount of warning prepares you for tinnitus. Until you have it yourself 24/7, you just don't comprehend. Problem is we kinda think we are bulletproof until we get shot. Just my opinion anyways...

 

[Zugzug]

I think that is exactly what they tell people with chronic pain to do. I was just looking up chronic pain (because isn't that what tinnitus is?) and the webpages that came up were all CBT and habituation type of guidance.

I've habituated to torture. That's for sure...

 

[Dana]

@jeremy06, do not despair. I wrote for somebody else in your thread, but you should try Clonazepam too, and you may see things differently.

This stem cells treatment may be possible too in your future, in the meantime just take heart and maybe some Rivotril (which is cheap and made in a foreign country to me and totally unrelated to me except for that it saved my life, I don't have business interests in it).

 

[roy1159]

I often wonder what my life would be like without all of this, just living like a normal human being. Human life is about overcoming obstacles, not enduring unbearable suffering with zero quality of life and 100% dysfunction, there is only so much dysfunction that I can accept at 21 - severe hearing loss and severe tinnitus (plus mild-moderate hyperacusis) is too much and doesn't allow to live a normal life.

I only need to make peace with the fact that I'm going to die like a savage by offing myself but it is what it is... at this stage I'm not left with any other choice. I can't wait to be set free from this never ending nightmare.

It's stupid how life can deteriorate that much and so much from what seems like petty choices. I'm cursed I guess.

 

[tpj]

Taking your own life is actually really, really difficult. I mean the will to go through with it. We're all being tortured, yet here we are. I wish I had cancer. I simply wouldn't get treatment and that would be the end of it.

 

[Sironketchup]

@roy1159 I know your pain...

21 is actually really young, maybe think about pumping yourself full of drugs to survive the next 20 years.

Just imagine what medicine will be able to fix in 20 years, I bet it's tinnitus.

You can still off yourself in 20 years man.

 

[Simon85]

21 is actually really young

I'll second this. Whole life ahead of you. Best to wait it out. Things will get easier either through an improvement of symptoms or eventual habituation. That's not to say it'll be easy, but I believe everyone in this thread can have a worthwhile life. I've been thinking of my granddad lately. He worked 30 years on the production line at Ford around loud machines. As a young kid I'd ask him about his hearing aids and what he hears - he'd just say 'EEEEEEEE' and then laugh. I had no idea what he was talking about at the time but totally get it now. Grandmaster habituation level.

 

[AliasM]

Taking your own life is actually really, really difficult. I mean the will to go through with it. We're all being tortured, yet here we are. I wish I had cancer. I simply wouldn't get treatment and that would be the end of it.

I hope every day for cancer.

I had chest pain the other night. Didn't go to hospital and I figured it was finally my time yet here I am.

 

[roy1159]

@roy1159 I know your pain...

21 is actually really young, maybe think about pumping yourself full of drugs to survive the next 20 years.

Just imagine what medicine will be able to fix in 20 years, I bet it's tinnitus.

You can still off yourself in 20 years man.

It's living like a normal person that I seek, not surviving as I have had enough of this - almost a year of merely surviving, nothing got better during that period. I also have severe hearing problems that are unexplained, imagine all you hear is consonants suddenly for no reason and audiologic measures can't explain it. People with strokes and TBI don't end up like this. I don't have much more to suffer, only until my legs can allow me to walk. But boy does every minute feel like an eternity with this amount of suffering.

 

[Zugzug]

God fucking dammit...

 

[Contrast]

God fucking dammit...

Hey ZugZug, You shouldn't use the Lord's name in vain.

 

[kingsfan]

Considering my own situation, I point to mostly shit genes and youth ignorance. Once my family learned I had tinnitus, it was only then my parents revealed they both did, and most of their siblings had hearing loss. As for ignorance, I lived a loud loud 20s, and didn't think much about hearing protection all the time, in particular for the hundreds live shows I attended.

Same with me, I was just purely ignorant through my teens and 20's. Went to shows constantly. Played multiple shows a week. several tours where we played nearly every night. hours long practices in tiny practice studios. Many times I'd lose hearing for days after and didn't think anything about it. Hated wearing earplugs. could never really hear myself during gigs with them and just felt disconnected from the music.

gave up playing live music to focus on family around 28 years old, but still continued to blast music in my car and through headphones.

My ears lasted a long long time through tons of punishment. Now they are just deteriorating every couple of months no matter how hard I try to protect them.

 

[Tezcatlipoca]

Having a bad week. Do you guys think there will be at least 1 good treatment by the end of the decade?

The fucking expectation or anticipation or lack of "sure things" is what's killing me. If there was a timer counting down to a good treatment I'd feel so much better. I know there's now a lot of people working on tinnitus and hearing loss and even one is bound to be successful, but still.

 

[Brian Newman]

Tinnitus sucks, especially if it's horribly loud, but having bad dysacusis and hyperacusis is a whole new hell. I had everything. Now I lost it. I had to give up the family business because it's too loud for my ears. I lost 20 pounds of muscle, used to be jacked 7 months ago, now a shriveled up stick.

My dysacusis is so damn hard to habituate to. I have a wine glass hum to everything, and a fluttering sound. If I try to workout I develop a new tone of dysacusis on top of the other ones. Last week I almost had silence. I was walking down the street at 1 am, no ringing, no hissing, no fluttering, no terrible distortion. The feeling of silence was absolutely amazing. I can't even explain how happy I felt, I never wanted the moment to end. At least I get silence sometimes, I feel horrible for you guys my age with bad hearing loss and unmaskable tinnitus. My only upside is that I have better hearing than most people on this planet. My ringing sometimes gets very quiet or very loud. It's been 6 months since my distortions and bad hyperacusis started.

Please, anybody help, I have been to so many doctors and ENTs. I don't know what to do. I got the distortions and hyperacusis right after deadlifting 455 at the gym with ear plugs in. Whenever I strain too much my ears get horrible full again and the next day I'm left with a new distortion. I tried a month off the gym, Prednisone, diuretics, Zinc, Magnesium, Lipoflavonoid.

I even ruled out a fistula, got a CT scan, which showed nothing. I'm going to the chiropractor to treat C1 and C2 .They ordered an MRI but I cancelled because of the noise it makes. I can't keep living like this, I'm honestly ready to die. I just wish the worst damage could be done so I could begin to habituate. It just keeps changing. I want my life back so bad. My family thinks I'm lying about my ear problems, they think I'm over exaggerating. I hate them for it.

Any thoughts from anybody? I have gone through every single page on the internet searching for an answer. I still cannot even get a hint from anything.

 

[Tymon Douglas]

I feel like I'm on my limit too, It's been months since I've last had a decent night of sleep. I get ringing on both ears if I rest them on a pillow. Nothing masks it. I'm going insane. It's 3:19 AM and I don't know what to do.

 

[GBB]

I feel like I'm on my limit too, It's been months since I've last had a decent night of sleep. I get ringing on both ears if I rest them on a pillow. Nothing masks it. I'm going insane. It's 3:19 AM and I don't know what to do.

Have you tried low dose Mirtazapine for sleep?

 

[Tymon Douglas]

Have you tried low dose Mirtazapine for sleep?

I'm taking Trazodone 50 mg as anti-depressant, ENT said it would help with sleep. I was taking Cyclobenzaprine 10 mg but I wasn't feeling anything different.

 

[Matchbox]

Tinnitus sucks, especially if it's horribly loud, but having bad dysacusis and hyperacusis is a whole new hell. I had everything. Now I lost it. I had to give up the family business because it's too loud for my ears. I lost 20 pounds of muscle, used to be jacked 7 months ago, now a shriveled up stick.

My dysacusis is so damn hard to habituate to. I have a wine glass hum to everything, and a fluttering sound. If I try to workout I develop a new tone of dysacusis on top of the other ones. Last week I almost had silence. I was walking down the street at 1 am, no ringing, no hissing, no fluttering, no terrible distortion. The feeling of silence was absolutely amazing. I can't even explain how happy I felt, I never wanted the moment to end. At least I get silence sometimes, I feel horrible for you guys my age with bad hearing loss and unmaskable tinnitus. My only upside is that I have better hearing than most people on this planet. My ringing sometimes gets very quiet or very loud. It's been 6 months since my distortions and bad hyperacusis started.

Please, anybody help, I have been to so many doctors and ENTs. I don't know what to do. I got the distortions and hyperacusis right after deadlifting 455 at the gym with ear plugs in. Whenever I strain too much my ears get horrible full again and the next day I'm left with a new distortion. I tried a month off the gym, Prednisone, diuretics, Zinc, Magnesium, Lipoflavonoid.

I even ruled out a fistula, got a CT scan, which showed nothing. I'm going to the chiropractor to treat C1 and C2 .They ordered an MRI but I cancelled because of the noise it makes. I can't keep living like this, I'm honestly ready to die. I just wish the worst damage could be done so I could begin to habituate. It just keeps changing. I want my life back so bad. My family thinks I'm lying about my ear problems, they think I'm over exaggerating. I hate them for it.

Any thoughts from anybody? I have gone through every single page on the internet searching for an answer. I still cannot even get a hint from anything.

Unless you got a blood patch trial, I'm amazed as to how you ruled out a fistulae when they are notoriously difficult to diagnose. There is usually hearing loss but it need not be permanent nor you unable to walk dizzy. Those are clear cut cases that won't get better. If all it took was a minimal risk blood patch, wouldn't we all feel profanely silly?

 

[Steph1710]

I had no idea what he was talking about at the time but totally get it now. Grandmaster habituation level.

I was having a bad day, but this quote alone is enough to keep me going. Ha!

 

[Robster]

I feel like I'm on my limit too, It's been months since I've last had a decent night of sleep. I get ringing on both ears if I rest them on a pillow. Nothing masks it. I'm going insane. It's 3:19 AM and I don't know what to do.

I know that feeling. I've had quite a few nights of little sleep since the onset of tinnitus, but now I've experienced my first night of absolutely zero sleep because of my tinnitus.

 

[GBB]

I'm taking Trazodone 50 mg as anti-depressant, ENT said it would help with sleep. I was taking Cyclobenzaprine 10 mg but I wasn't feeling anything different.

Okay, well I can only give you my experience, but Mirtazapine + Melatonin is like horse tranquilizer.

 

[Chinmoku]

Have you tried low dose Mirtazapine for sleep?

Mirtazapine is very effective for sleep I found, especially at tiny doses, but it would leave me very depressed in the morning.

Does it have any impact on your mood?

I'm sleeping very poorly and too little and I am thinking whether I could try it again. It has the reputation of not being ototoxic for some reason, although there are testimonies here on the forum of people getting tinnitus even from Mirtazapine. The fact that it is serotonergic worries me, but at very low doses it seems to be still effective for sleep and the serotonergic component should be minimal/non-existent.

 

[GBB]

Mirtazapine is very effective for sleep I found, especially at tiny doses, but it would leave me very depressed in the morning.

Does it have any impact on your mood?

I'm sleeping very poorly and too little and I am thinking whether I could try it again. It has the reputation of not being ototoxic for some reason, although there are testimonies here on the forum of people getting tinnitus even from Mirtazapine. The fact that it is serotonergic worries me, but at very low doses it seems to be still effective for sleep and the serotonergic component should be minimal/non-existent.

It hasn't really impacted my mood - if anything it stabilized me by restoring sleep/appetite. That being said, I've lowered my dose from 30 mg to 7.5 mg as I prefer to take as little as possible. As long as it keeps sedating me I'll likely stay at that dose.