Suicidal

[Wrfortiscue]

I'm awful. Progress is getting worse...

What's getting worse though? Any specific meds you on?

 

[Exit]

What's getting worse though? Any specific meds you on?

The noises, more different kinds of sounds in both ears. I'm on Infliximab and started again now on Azathioprine.

 

[Filip]

ANA titter - positive 1:80.
ANA pattern SPECKLED.
DNA ab conf - negative.

I don't know what to make of this really.

Hey roy1159, are you doing okay? I saw your posts and was curious if things are improving or not after the surgery...

 

[Psych]

Around 8:30 PM last evening my tinnitus went completely bananas in a way it hasn't done before. It just got worse and worse and worse. Eventually I conceded and told my mom I'm coming to sleep at her place tonight. Got literally 0 sleep and now I haven't slept at all in 5 days. When I went to take a piss in the morning, I saw there was a lot of these red dots all over my face. A stress reaction. So now tinnitus is literally making me uglier.

If I don't sleep soon, I'm going to have a manic episode. I'm thinking of ending it all the time now. I got to hold on for another week so I can speak to Dirk De Ridder and maybe get some answers. This is gonna be the toughest week of my life so far.

I'm so sorry you're suffering this way.

Do you have any books on tinnitus? Maybe you could find something helpful there, if you do. I've bought a few, and when it gets really bad, it's helpful to at least know I could look in one of them. I know that sounds weird, but, what happens is, I seem to be getting more symptoms added to the tinnitus, so I end up trying to figure out ways to cope with these new "items," and never get around to the books. But they're there...! I just wish you could have some relief in the meantime. I can really relate to the ramping up, especially in the middle of the night.

Do you have any "go to" sayings you use, to make yourself feel better? I say the word "jungle," because that's what my main tinnitus sounds like, and that can be distracting, or the word "background."

Please keep us posted on how it goes with Dirk!

 

[Óscar PP]

I'm waiting for a diagnosis but nonetheless I also have some irreversible physical damage alongside the ear problems which are the most debilitating. I'm just too far gone sadly.

Hey man, I hope you're still with us because I have good news for you. You can get top notch quality stem cell infusions in Mexico for as little as $2,500 per infusion of 100 million Mesenchymal stem cells each.

I did my research and the way they explained it to me, it seems that they have a new type of cells/treatment called exosomes, which are some sort of advanced stem cells that can cross the blood brain barrier, which means they will not only be capable to revert your ear damage but also help with your neuropathic pain, and since you had $10,000 for Pegasos, you can definitely put that money to better use in these treatments.

Remember, it's forbidden to give up before trying stem cells!

 

[Mary97]

I worry about all of you, but now especially about @roy1159.

Oscar, that's wonderful news about the stem cells. What a shame if it's too late for Roy, but I'm sure it will benefit someone else at least. Thanks for the info...

Roy, if you're around, chime in please... Don't make us worry about you.

 

[Derek26]

I want to kill myself.

I can't stand these high pithed noises and the sensation of hearing loss.

I can't work. I can't get welfare and was treated nasty by them. I can't get disability. This fool of a psychiatrist still hasn't written my letter for disability after seeing him for a year and a half promising me dates that he will have it ready and I had to file a complaint against him and was told to have a letter by April and I still have nothing!

Loud noises make it worse and my ENT and audiologist say that noises such as exhausts and motor bikes can't make it worse, that my case must be genetics. Just ignore it, move on. You have mental health issues, you need to be medicated. I quit my career and work in a cafe that pays shit!

I'm stuck in a room rental with a guy I can't stand and sent me a txt at 5:30 am to ask me what the noises were coming out of my room when I had tinnitus masking sounds playing on YouTube and he told me it annoyed him. He's a controlling perfectionist freak! I moved 9 times in the past year after renting rooms from angry people living in 2 motels with drug addicts and beatings and losing my apartment after the landlord sold the duplex after telling me she wasn't planning on selling it when I signed my lease a month and a half beforehand! I can't go back home. My parents won't even speak to me because of the arguing over this condition and not understanding what I'm going through. My mother told me to get my shit together and do what I got to do or I will be on the streets. When I called my father for help he told me to stop crying and call him when I was a real man. That this is my karma and that he was going to sit back and enjoy watching me fall apart, shouting "how are your ears now Derek, can you hear the noises now". He insulted me for 45 minutes on the phone and I kept my mouth shut because I needed his money.

The ENT refuses to send me to a specialist in another province, and she doesn't think there's anything he can do?

I can't stand the tinnitus. It drives me crazy. The headaches, the hyperacusis. I can't do anything I liked. I lost too much weight. I hate living in this place. I never want to eat. I'm depressed and I have nowhere to go. I'm going to lose my car and ruin my credit and end up homeless all because of this fucking noise. I'm sick of it! I begged my cousin to let me stay with him and his family and he won't because his wife doesn't want to and they even left me alone at Christmas because she wanted immediate family only!

I was told I have to pay 4000 dollars for devices to try and mask the noise and do sound therapy for hyperacusis with no insurance coverage. Only for people under 18 years of age the government will cover the cost.

I'm sick of this noise. I'm sick of losing my hearing and what it's doing to me. I used to be active and social. Now I'm a useless fucking vegetable suffering all the time hoping I die of a massive heart attack, I'm sick of the sleeping pills. I'm addicted to Ativan. I can't get off of it because of the stress and worsening hearing loss.

There is no cure and there is no treatment coming. This is not a priority in the medical community. They blame it all on anxiety.

 

[Matchbox]

Hey man, I hope you're still with us because I have good news for you. You can get top notch quality stem cell infusions in Mexico for as little as $2,500 per infusion of 100 million Mesenchymal stem cells each.

I did my research and the way they explained it to me, it seems that they have a new type of cells/treatment called exosomes, which are some sort of advanced stem cells that can cross the blood brain barrier, which means they will not only be capable to revert your ear damage but also help with your neuropathic pain, and since you had $10,000 for Pegasos, you can definitely put that money to better use in these treatments.

Remember, it's forbidden to give up before trying stem cells!

That's a hard thing for a lot of people to put forth. And banking my life on it is hard.

Anyway, I'll likely do myself in. Holding out while life goes on is extremely difficult. Much moreso than I thought probably because of continuously getting worse. Setback after setback. There's no end. A shadow of who I was an unable to be myself or achieve my potential.

The tinnitus I'm hearing is absolute nonsense.

I don't know if this is a fistula, hydrops or nerve damage. I just don't know and the doctors I talk to are not encouraged to help. All I know is sound makes it worse and if it's autoimmune I'll never know at the rate I finally convince people for testing until I'm too far gone to help.

 

[PeteJ]

How can I give myself cancer?

Start smoking. I thought about it but I have other health problems/conditions that would be affected so it's not an option. It's more of a slow, drawn out death anyway.

 

[HootOwl]

I've been using Discord more and more to distract myself, but there's only so much I can do before the walls start closing in around me again...

 

[Exit]

I've been using Discord more and more to distract myself, but there's only so much I can do before the walls start closing in around me again...

My good ear got two new tones this month. Either just the way things will go, or removing dental plaque manually. Either way this will not get a happy ending unless PIPE-505 is a miracle fix all drug...

The odds for that is probably like being struck by lightning.

 

[Lurius]

My good ear got two new tones this month. Either just the way things will go, or removing dental plaque manually. Either way this will not get a happy ending unless PIPE-505 is a miracle fix all drug...

The odds for that is probably like being struck by lightning.

Tbh, I often wonder what being struck by lighting would do to my tinnitus. We had a thunderstorm a few weeks ago, I was seriously considering going out with an umbrella and try to get hit.

 

[Óscar PP]

That's a hard thing for a lot of people to put forth. And banking my life on it is hard.

Anyway, I'll likely do myself in.

As hard as it may be, it's the only real chance that exists here and now to cure or improve this condition. And if you are already determined to end things, what harm can it do to try stem cells before pulling the plug?

It would be a crying shame to top yourself before trying an available and somewhat affordable option. If it doesn't work, you can still go ahead with what I will always call "plan B".

 

[Exit]

Tbh, I often wonder what being struck by lighting would do to my tinnitus. We had a thunderstorm a few weeks ago, I was seriously considering going out with an umbrella and try to get hit.

With our luck it would strike nearby so you would only get worse ears.

Klem

 

[sm20]

If I just had regular tinnitus I would wait for the cure and suicide wouldn't be necessary. I got every complication possible, visual snow, hyperacusis, hearing loss at high frequencies, and low pitched tinnitus that somehow makes my eyes hurt and have blue flashes of light. Maybe some of these other things will get cured too but I haven't heard anything for low pitched tinnitus.

Does anyone have any idea?

 

[Wrfortiscue]

I hope something comes out soon to provide relief for you guys and myself.

 

[Matchbox]

As hard as it may be, it's the only real chance that exists here and now to cure or improve this condition. And if you are already determined to end things, what harm can it do to try stem cells before pulling the plug?

It would be a crying shame to top yourself before trying an available and somewhat affordable option. If it doesn't work, you can still go ahead with what I will always call "plan B".

You are right but at the same time the urge to crawl in a ball and just kill myself is strong. I guess the real problem is a lack of support and other people close to me vouching for and assisting me in looking at and into these options. This whole thing has felt like I've been on my own and that they simply move on with life thinking a support group is good enough.

I gave it some thought and I would've dropped everything had someone close to me called in the pure panic and fear I was in. I would've researched and fought on their behalf with doctors. In the end and now I get none of that. Simply things like good vibes and prayers which mean jack shit and simply allows that person to keep existing thinking they did their part.

It drives you to offing yourself... to which I'm sure they would justify it as "it would've happened eventually... we did everything we could" which are what platitudes and telling me not to be suicidal and embarrassing them by posting online to social media about it?

But if it were CANCER they'd move mountains, right? Because there's stigma if you don't help someone with that. Invisible disabilities.

 

[Matchbox]

If I just had regular tinnitus I would wait for the cure and suicide wouldn't be necessary. I got every complication possible, visual snow, hyperacusis, hearing loss at high frequencies, and low pitched tinnitus that somehow makes my eyes hurt and have blue flashes of light. Maybe some of these other things will get cured too but I haven't heard anything for low pitched tinnitus.

Does anyone have any idea?

Unless you have a likely cause it is impossible to give an answer.

 

[Brian Newman]

Yes, I have been so optimistic of getting better and do get better slowly with time but this world is a piece of shit. When I had mild hyperacusis and tinnitus I never had any problems with being exposed to extremely loud noise. Now wherever I go, there are gunshots, fireworks, race car exhausts, balloons popping, lightning striking near me, airbag deployment, all in a matter of fucking months.

I truly see no chance of recovery anymore, fuck ears! I wish they never existed! I would do anything on this planet to go back to my 18-year-old self and not fuck up my ears from the beginning. Now because of a car accident my hyperacusis just keeps getting worse and worse. Before I could play video games on a decent volume, now I can barely play them with any volume.

I can't work anymore, I had to spend $3,000 to get my own damn gym equipment because whenever I go some extremely loud shit happens. I can barely go to a restaurant anymore even with earplugs in. I can't eat dinner with my own family anymore. I can't do anything anymore. I lost my life and I don't think I will ever recover. Man let me tell everybody here, tinnitus is horrible, it is a curse, but a lot of people have it lucky. They just have loud ringing, that's it.

Some of us understand that once you get hyperacusis, and dysacusis, a whole new hell is awoken. Nothing compares to all of these symptoms together. Nothing. Every time I try to leave the house I get bent over and screwed. It's just hilarious because I can tolerate normal noises with earplugs in, but everything I keep experiencing, is literally 150 dB and up every time I get exposed to something. I am so close to moving to the woods in the middle of nowhere, and being a hermit.

I just can't do it anymore. I never cried in my entire life until this. Even when I first got ear problems I never cried. But since March I have cried like a little bitch every night. Everybody here understands; normal people think we are crazy. Doctors think we are crazy, thinking ear problems are not bad at all. They are all assholes, while we suffer and contemplate suicide every day, these bums look down upon us saying we are just over exaggerating our symptoms.

What a wonderful world we live in! And I truly did not realize how bad we had it until I read numerous posts on here of cancer survivors getting hyperacusis and tinnitus from chemotherapy. They said cancer is nothing to this ear illness! They said they would go through it all 10 more times if it means they could avoid the ear problems.

God help us all, even though I have almost lost all of my religious faith, I hope God will help us all. I am praying these regenerative medicines at least work and come out within 10 years.

 

[Óscar PP]

You are right but at the same time the urge to crawl in a ball and just kill myself is strong. I guess the real problem is a lack of support and other people close to me vouching for and assisting me in looking at and into these options.

I totally get that man, believe me, I've been there too. These ear issues can be crippling to the point you don't want to try anything else.

But please make that last effort. A trip to Mexico and at least two stem cell infusions. Worst case scenario they don't work and you're still in Mexico where you can get cheap barbs to say goodbye peacefully knowing that you did everything you had at hand to get better.

 

[Brian Newman]

I totally get that man, believe me, I've been there too. These ear issues can be crippling to the point you don't want to try anything else.

But please make that last effort. A trip to Mexico and at least two stem cell infusions. Worst case scenario they don't work and you're still in Mexico where you can get cheap barbs to say goodbye peacefully knowing that you did everything you had at hand to get better.

Is there any proof of stem cells working?

 

[Óscar PP]

Is there any proof of stem cells working?

The only proof are the testimonials of those who tried it and reported improvement in their tinnitus.

There's no objective way to measure this unfortunately.

But given people on this thread are at the end of their rope, does proof really matter?

That's the whole point I'm trying to make, if you're going to off yourself what do you have to lose? Money? You won't need that on the other side. And in case you don't have it, there's credit. You won't have to pay it back either.

 

[Brian Newman]

The only proof are the testimonials of those who tried it and reported improvement in their tinnitus.

There's no objective way to measure this unfortunately.

But given people on this thread are at the end of their rope, does proof really matter?

That's the whole point I'm trying to make, if you're going to off yourself what do you have to lose? Money? You won't need that on the other side. And in case you don't have it, there's credit. You won't have to pay it back either.

Where is the thread of those testimonials?

Yeah you're right, might as well try everything before you go.

 

[Chinmoku]

If I just had regular tinnitus I would wait for the cure and suicide wouldn't be necessary. I got every complication possible, visual snow, hyperacusis, hearing loss at high frequencies, and low pitched tinnitus that somehow makes my eyes hurt and have blue flashes of light. Maybe some of these other things will get cured too but I haven't heard anything for low pitched tinnitus.

Does anyone have any idea?

Low pitched tinnitus associated with Meniere's disease is sometimes helped by Cinnarizine. Also, Ebselen could potentially help when it comes out.

 

[Chinmoku]

Where is the thread of those testimonials?

Yeah you're right, might as well try everything before you go.

There is a long thread by @attheedgeofscience with a lot of information but it is a sample of one. If you contrast it with what Prof. Heller from Stanford said on stem cells for hearing loss you will see that stem cells are really a desperate last resort. Check this more recent thread too in case.

P.S. This is what Heller said:

"There is no working stem cell treatment for inner ear disorders and every single "clinic" offering these kind of treatments are nothing else than profit hungry snake oil salespeople.

I would be extremely careful because these treatments are not only not effective but they can even be dangerous. You will most certainly have to pay a lot of money for a "treatment" that shows no benefit.

I am sorry to be that blunt with my answer, but I think that it is important to make this clear.

I am attaching a report from a highly reputed scientific journal about how various clinics that offer "stem cell" treatment harmed patients with their procedures.

I would be very careful with this - unfortunately, there are no miracle treatments for inner ear disorders. We are working hard on making small steps to provide effective solutions for patients, but please understand that research in this area is difficult, underfunded, and unfortunately difficult - and therefore slow.

I wish that the field would move faster."

 

[Exit]

Low pitched tinnitus associated with Meniere's disease is sometimes helped by Cinnarizine. Also, Ebselen could potentially help when it comes out.

Who's the bald guy?

And what did he do to the cat pilot?



Let's hope something comes out from PIPE-505 this month...

 

[Brian Newman]

There is a long thread by @attheedgeofscience with a lot of information but it is a sample of one. If you contrast it with what Prof. Heller from Stanford said on stem cells for hearing loss you will see that stem cells are really a desperate last resort. Check this more recent thread too in case.

P.S. This is what Heller said:

Thanks. I'm going to look into it. That's my last option.

 

[Chinmoku]

Who's the bald guy?

And what did he do to the cat pilot?



Let's hope something comes out from PIPE-505 this month...

Cat pilot was grounded after a tough jet fight, but he is recovering. The guy in the picture is Grigori Perelman.

I hope we get good news from research, everything seems so slow when we are tortured all the time.

 

[Vicki14]

I sometimes get the feeling that I'm sending off vibes that I'm doing really well. I had 3 amazing weeks in June where I even had silence.

Let me put it out there, I am NOT doing well. I went from the worst tinnitus period of my life, to the best to a period that's even worse. I just came out of the shower. It's the middle of the night. That's the 2nd time I've had to abort sleep this week in order to manage my tinnitus.

I've repeated again and again that my tinnitus is not reactive. Well, that doesn't seem to be the case anymore. I sleep in the same room as my fridge. Ever since I habituated to the sound of my fridge sometime in 2019, it hasn't bothered me at all. It's been a non-issue. Well, just 30 minutes ago, the sound of the fridge bothered me so much that I felt like screaming very, very loudly and I was 5 seconds away from pulling the plug on it. When it finally shut up and went quiet again, the quiet made my tinnitus seem 100 times worse and I then got a new sound in my right ear.

I can't sleep with this racket but at the same time, I'm insanely tired as I haven't gotten any quality sleep in 4 or 5 days.

I'm having serious suicidal thoughts now and if my brain keeps being this volatile, unstable and crazy I think I will go through with it this summer. Not sleeping at all for such a long time makes me unable to enjoy life in any way, shape or form. Intense sounds like the one from my fridge seems to spike my tinnitus now, but so does silence. So sleeping seems to be out of the question for me now.

I don't know how to go on with this and I also know that contacting my doctor or the ENT will do fuck-all. My doctor is the one who gave me the medicine that started all of this in the first place and he doesn't even acknowledge tinnitus as a problem. He seems to think I get mild tinnitus occasionally....

I'm going to contact Dirk De Ridder and see how fast I can get a conversation with him tomorrow. I seriously need help. I'm more scared of living than of dying now.

So sorry to you hear you are struggling like this. I understand. How are you now?

 

[Vicki14]

My ears scream frantically with 7 noises at same time but I'm dead tired so I hope to sleep well tonight.

Wish everyone here the same.

Me too. Sorry to hear that. I'm absolutely exhausted by this din in my skull and like y'all, just want to fucking enjoy life!