Suicidal

I understand your grief and yes tinnitus via noise damage does degrade over time. I’m not new to tinnitus. I’ve had it since I was a kid. Life is what you make of it though, many of us have degrading conditions on top of tinnitus. Believe me, I get it. I get 1-4 hours of sleep a night. I understand the distressing nature of it. Like you said, we can’t do anything about it so letting go of that hope was the hardest thing for me to do.

You don’t care how newcomers feel? Well this is a support forum and that’s what I want to do, support. You can call it gaslighting but I just want people to know there are others suffering and they can see it’s possible to live with this. Many have taken their lives because of it, and if me telling them they will get used to it prevents that then in my eyes it’s worth it. Many do get used to it. It still sucks but life still has moments you can enjoy.

We do need a treatment but guess what, money talks. It’s all about money and always will be. Nothing you nor anyone here can say or not say that will change that. We either have treatments that work in a couple of years or we don’t. If the treatments all fail then that’s pretty much game over for some of us. Depressing reality.

 

So Doogie's (AKA Treble Health) TRT system is working for you?

It's a tricky balance. I was told early on that my brain would adapt to this no matter what.

I can tell you, at 5 years plus, that I do not fall into that category. I did try all the traditional options to no avail.

I can see @Damocles's POV as well. That being honest, even though frightening, about how some will never habituate and many cases get worse. That is simply a fact that has been proven by many posters.

I truly understand both sides of the debate even though I suffer.

How many have posted to have resolved this issue only to return wanting to off themselves.

My wife goes through the same thing with a type of facial nerve pain condition. She has had scans & MRIs but no cause found.

 

Excellent analogy regarding the Russian Roulette.

After 8.5 years, I think of being 500 feet above the ground on a platform with a wooden floor.

1) The first plank to be pulled away is the expectation that it will go away by itself.

2) The second plank to be removed is the expectation that some supplement, treatment, etc. will eliminate or reduce this (and believe me, removed with harsh, sudden force after I paid over $6,000.00 for that worthless Desyncra).

3) The third plank removal consists of an inability to utilize many of, for example, Michael Leigh's or Julian Cowan Hill's empirically disprovable, just-common-sense-wrong, infantile wish-fulfilling advice regarding habituation.

4) The fourth plank removal consists in recognizing that no matter what CBT techniques I employ with the best will in the World, the stress nonetheless is often like a muscular, covering wave that renders me very depressed, maniacally angry, and cognitively impaired.

(Incidentally, regarding this last: A few weeks ago when I had a spike I was so distracted that I parked in a downtown lot and did not notice that it was for these store's customer's cars only; after 10 minutes, when I got back my car had been towed. I had to ask a huge favor from a relative to come get me and drive to Hell and Gone in our Western Suburbs to retrieve the car at a cost of $218.00. This only scratches the surface about how cognitively crippling this can be).

5) The final and most devastating plank removal is (because of 4) my wife's increasingly downgraded opinion of me as a fully functioning husband.

Can tinnitus finally deprive you of everything?

But you pose a thorny moral question: Given how stressed new posters are, is it better to flatly describe the abovementioned or "lead them down the primrose path" with assurances, bromides, etc. that from my own experiences (but perhaps not for everyone) are so demonstrably false?

(Interestingly, this "primrose path" quote reminds me of a similar situation when I was an Insurance Adjuster; Our supervisors used this phrase when we were warned not to give the Policyholder the impression that Coverage existed when it did not).

 

Sorry to hear of your struggles. I had some periods where my reactivity was waning but COVID-19 seemed to bring it back to where I started. I can’t do sound therapy long enough since the reactivity gets irritated so fast. Before COVID-19 I was having better periods. Now it’s haywire mixed in with some relief moments.

I think some of us may never fully habituate, so now I’m moving on to “habituating” to not being able to habituate, if that makes sense lol.

Unfortunately we get worse because of external factors out of our control, or we become too relaxed and make the same mistakes. Having distress all over again after recovering or doing better is soul crushing.

 

I don't have the ability to take my stress down. I wake up wanting to vomit from stress. I am in this all alone - I don't have outside real life support of any family and friends. I only had my ex to plead to come and stay with me while I tried to calm down and start to recover and they refused. Utterly crushed and terrified. I understand you keep saying it'll get better but with the crazy stress and isolation it's only getting worse! I was in no way prepared for this and cannot keep up this awful life much longer. Suicide hotlines are a dead end and with my head ringing I'm totally home bound. Last month I was a different person - I'm being destroyed with no one to be around to get relief. Sorry, I'm in a shit place and feeling like there's no way out but to end life. That's a horrible thought but it's where my thoughts go daily.

 

Hang in there. You’re still in the very early phase. Things can get better.

 

It's probably a rare thing, but whenever my neighbours' cat is unhappy it cries like a baby. When I first moved to where I live, I thought somebody was abusing their child. So make sure your cat isn't like that if you're serious about getting a cat for a pet.

 

If you have the ability to get pure CBD with no THC in it out in LA, go get it. Take 5 mg and do an activity that requires immense focus. Count the pores on the back of your hand with a white noise generator. Anything to keep your mind off of it.

LIVE in the success stories threads and get out of anything scary like this very thread. Notice how it's all measured in weeks and months? Ceasing to live when this was all a 6 month rouse would be worse than the onset of tinnitus.

Can you make it clear to friends/family/coworkers as to what's going on and talk to them every other night on the phone? (Volume on low, speaker phone away from ear works for me just fine). Having someone you need to call every night or every other night gives you the ability to focus on your task that night and the next night etc.

 

Again, you are only 1 month into tinnitus. You have absolutely no reason to think it won't get better, but like I said, it takes time. Tinnitus improvement is measured in months and even years. You have every right to express all the shit you're going through, that's what this forum is all about.

However, do not talk about offing yourself at ONE month into tinnitus, ok? Do me a favor luv, get a Netflix subscription, get Instacart food delivery going and dig in cuz this is war.

 

This world is so goddamn cruel. It’s either I’m stuck with debilitating depression and anxiety or physical pain, sometimes both. Today I’m having a mild pain day, however my anxiety and depression decided that today would be a perfect day to come full-force. I’m not sure what’s worse, physical pain or emotional and mental pain. Natural remedies for anxiety are out of the picture. Soccer, lifting, running, even walking in the park or listening to music, I can’t do any of those due to my severe hyperacusis. Fuckkkk!

 

@Travis Henry, I'd be lying if I said I know.

In @danielthor's case I'm recommending it because he has a neurodegenerative disorder, and he's pretty much exhausted every other form of treatment he can find.

Simply put, if you're all out of options, then why not?

In your case however (which is purely a matter of being disabled by severe tinnitus), my only advice would be giving it time (hopefully) to stabilise, in the same way that mine did over the course of the first 2 (or so) years.

 

I do still give them 3-5 years for a cure/treatment in terms of invasive things (I really would undergo surgery e.g., Deep Brain Stimulation). If not, I'll throw in the rope, I will not continue with tinnitus for decades, I'd rather undergo euthanasia instead of this. I just asked for a normal life, if that's not possible within 3-5 years (my timeline), it's over. As simple as that.

 

How long have you had tinnitus? There’s still hope for it to calm some and for the brain to get used to it.

 

I’m afraid to die by my own hand or by euthanasia because of spiritual beliefs. I fear god. I want to improve and have my symptoms reduce to a reasonable level. I often wish I was 100 years old, though. I envy elderly people now. They're so lucky that they’ve made it through life and are almost done.

This world can be beautiful, of course, but when things go wrong — as we all know — it can be equally ugly. When you find yourself on the receiving end of its ugly side, when you’ve seen true darkness and absolute despair, you come to realize just how fragile life is. I wouldn’t wanna bring children into this world now, for example. I wouldn’t want anyone to ever feel the emotions I’ve felt. People haven’t seen true darkness until they’re faced with suicidal thoughts or genuinely want to die. I thought I knew what darkness was prior to all this. I was so wrong.

 

Many years... Long enough to know that nothing is going to be changing if there won't be a treatment/cure in a few years.

 

I fear life.

Yeah and for the majority of people it is, not for me apparently, so I'll have to go then... I still have not given up all hope, honestly, but I kinda know that there is no significant treatment or even a cure around the corner. 3 years is unrealistic, 5 years is a maybe, 10 years for sure, at least a good treatment, I just can't wait that long, I want to live now, experience peace/silence now, not in 10 or 20 years from now. I hate my fucking life.

 

It's funny, this is exactly how I feel.

I'm starting to get a little sick of people who try to show me empathy by comparing their little problem to mine. I couldn't care less about their skin disease or splintered nails. People seem to think this is just a little bad some of the time. It's fucking awful all the time. I'm one month from 4 years now. When I got it, I promised myself I would give it 5 years. I have 1 year to live or get this under control. I've begun to separate my life into a before and after, I've begun to remember the past as something I would take hands down, no matter how bad it was before. Because compared to this, it's nothing. It's a delight.

 

Yeah I keep seeing old threads “just 2-5 more years”.

 

I would gladly accept stable non-reactive tinnitus, I don't give a shit about silence.

When it gets to the level of literally r*ping your brain with 20 different noises at 65-70 decibels, silence is a joke. I would jizz my pants non-stop and live life to the fullest if I was able to go outside or do anything of moderate loudness without permanently spiking.

Silence isn't necessary for happiness.

 

Yup, stable tinnitus was a breeze.

 

Do you have faith in XEN1101?

 

I'm looking forward to it, yes, but honestly I would prefer DBS if I'd had the choice, not because of its risks, but because of its efficacy, and believe me, I'd rather get my brain wired with electrodes than ending up going mad and appeal for euthanasia (god I don't want that it gets that far) I'm afraid.

Good read here:

Surgical Neuromodulation of Tinnitus: A Review of Current Therapies and Future Applications

"DBS shows much promise as a therapeutic option for tinnitus. Stimulation of the auditory pathway, particularly the medial geniculate body, could counteract thalamocortical dysrhythmias and reduce gamma activity implicated in the tinnitus percept. Stimulation of the limbic pathway could decrease attention to and perception of tinnitus. Additional studies, focusing on the involvement of thalamic and limbic structures in the pathophysiology of tinnitus, are needed to support the use of DBS."

 

I have faith some of us will find benefit, and others it will make us worse off, or induce dependence or tolerance and other fun shit if it happens to work for a few months.

I wish it permanently changed the receptors, but if benzos or sodium channel blockers are any indication, that leads to worse things.

I was just getting used to this shit as a baseline of utter chaotic shit, it took me 18 months to get to a level where I could at LEAST understand it and find little moments of joy.

And now, SOMEHOW, it has gotten worse.

If it doesn't improve by Christmas I will be killing myself, especially if I lose hearing again.

Only thing worse than this is being deaf having to listen to it always, with new shit incredibly invasive shit sprinkled in like distorted music and screaming in your ear whenever a missing frequency comes up instead of the normal happy sound the bird made was.

 

I would do anything on this earth to get a little bit of peace, stability and sustainability from tinnitus and hyperacusis, even if it meant I still was stuck homebound. At this point I would kill for just for a tiny bit of comfort or sleep. Cut off body parts if it meant the ringing would go away. I would have rather been shot than have this limiting screeching reactive tinnitus consuming my soul. Wish I could get better I would dedicate my life to raising awareness driving my van across country wrapped in vinyl about these two horrible afflictions and where to donate in hopes we get real treatment to help our veterans and good people suffering. I missed my calling by not stopping and doing just that as soon as I got tinnitus and protecting. Would love to have educated ENTs on how to save lives instead of setting people up to get worse.

I missed every chance I got to keep this stable and to a liveable point. I just can't believe it. I have no clue how to make it much farther with the worsening everyday. I can't even go for a doctor visit 15 minutes away without making things worse, but I can hear perfectly fine, but I feel like I'm worsening in my own home to just the fan. I'm not even sure I can make it to the end of the year now with how bad it's screaming. Why didn't the Tinnitus and Hearing Center tell me how serious these conditions can be when they said I had mild hyperacusis and bad tinnitus? Why did they and all the ENTs I saw tell me to protect and let things heal!?

 

I thought you used to seem more optimistic about XEN1101. Why the change? Did you ever see Retigabine make anyone worse, tinnitus and hyperacusis-wise?

 

Why didn't they and all the ENTs I saw tell me to protect and let things heal!?

 

Because absolutely nobody understands tinnitus and hyperacusis. I think there is only 1-2 researchers in the world who understand hyperacusis/reactive tinnitus.

 

Just me not being too absolutist. I'm tired of being made a fool of when it turns out I'm wrong, at any rate it's sensible this drug will help but it's not a cure and will fall into the pitpalls of its formers.

 

They don’t know any better. Most don’t suffer from this. They just read textbooks for a paycheck. Just my opinion.

Nobody is severe that I’ve asked in the field. Maybe mild at most. My wife and son yell constantly and they apologize but damage is done almost daily.

My tinnitus is screaming in silence right now. Shrill piercing tones. Reactive BS too. I’ve had good moments where I just didn’t care and felt happy. It’s taking time but I believe if you can eventually stabilize you’ll be ok with more time.

I’m depressed at this moment because my stomach acid decided to start causing havoc and it makes me very exhausted and depressed. Then I start focusing on the loud ringing and I cycle.

I have no advice for you other than I’m sorry you are suffering so much. I’m sorry everyone here is. We have been dealt a shitty hand and honestly the world doesn’t care. They are living their life, doing TikToks that cause cancer, listening to music and just carefree. We could be angry or mad but what for? Good for them.

Life is what it is. You always hear stories of bad things happening to people for no reason. “Aw man that’s awful, that sucks”, but we went on living our life. Eventually our time came and our world became shattered.

Don’t blame yourself. It’s already hard as it is with you dealing with this crap, no need to add regret on top. We all make choices, some good, some bad. It’s not your fault, things just happen.

If you are worsening over and over, you may need to find the culprit. Try steroids if you haven’t. Low inflammation diet or fasting. I don’t know. Something’s gotta give to point you in the right direction.

 

That's the scary thing. You can go back 10 years and see people back then talking about "cure will be here in 2 to 5 years" and here we are ten years later not really too much farther along.

I suppose they get closer every year and eventually it will happen, hopefully very soon, but until it happens we won't really know.

XEN1101 has been in trials since 2015 or something like that and still nothing.

I've been throwing everything I can at mine and hopefully I won't make it worse. GABA, Clonazepam, THC, notch therapy, playing the tinnitus tone at a low volume, sound enrichment, in the hopes that something works.

Saw an audiologist who confirmed mild hearing loss in my tinnitus ear. Saw an ENT's PA who said there was nothing to do but scheduled me for a couple of tests to rule out anything physical. I also set up an appointment with an actual Neuro-ENT who has experience with tinnitus.

I consider myself lucky that compared to what I've read on this forum, mine is in the mild to moderate category and while it does keep me from sleeping, I can more or less manage a few hours of sleep by taking stuff to sleep and playing cricket and cidada sounds which cause my tinnitus noise to sort of blend into those noises. But during the day at work and at night at home in a quiet room or even watching TV, it's a constant eeeeeeeeeeeeeeeeeeeee at 10.5 kHz to 10.7 kHz.