Suicidal

[Jerad]

@Jerad, don't know if I told you all this before:

Slow head movement is important. Don't try to focus on a moving object. Was told for you to stop constant eye movement with reading and writing. Told that this is so needed. Don't move eyes across a computer or TV screen.

Exercise other than walking can increase brain zaps.

Benadryl should help.

By doing all this, electrical sensations, brain zaps should be gone in weeks to a couple of months. GABA levels should increase.

Besides what I know and told by an experienced therapist, this article reflects a bit of what I mentioned above.

https://www.wikihow.com/Stop-Brain-Zaps

Thanks for the help, @Greg Sacramento. Would taking a GABA supplement help, too? Or can that backfire?

 

[LilCC]

The isolation is killing me, I haven't left my house in a whole month, I spend almost 24 hours a day in my room. Is anyone else doing the same? Life truly is a sick joke.

 

[Travis Henry]

The isolation is killing me, I haven't left my house in a whole month, I spend almost 24 hours a day in my room. Is anyone else doing the same? Life truly is a sick joke.

I am basically doing the same and anytime I go outside for a minute or talk I get punished. Neighbors are having a party and the bass is traveling through my headphones and I feel like dying. I am not sure how many days I can deal with this. I can't believe my system is so sensitive.

 

[LilCC]

That sounds awful, I am sorry. I experienced similar a few months ago. My tolerance of sound was really poor and even small things caused setbacks. I constantly was pushing my limits because tolerance of sound was poor so my ears could not handle even regular everyday noises and the pain could suddenly come back full force. Pain was constant but sometimes it just spiked for a reason I did not always understand. My hyperacusis became more stable slowly, my tolerance of sound improved slowly and pain started to go away. And slowly I could predict more what could cause setbacks. I usually tried to take it easy for a few days when I had pushed my limits and usually my symptoms resolved in a few days. I experienced no more severe stabbing pain and no more constant mild pain. I felt like my symptoms were "under control" if I just did not push my limits too much and I understood what my tolerance of sound was.

Now I am afraid I am again in the same situation as a few months ago because this setback feels so severe and some of my symptoms are back that I haven't had for months.

Ahhh this sounds too much like me. For some months I felt like I was improving, but I kept pushing my luck and now I'm back in hell. The fucked up shit is that I wasn't even exposing myself to loud stuff, it was mainly just going to the park. I guess I was talking on the phone a lot too, and that might have fucked me up in the long run.

 

[Shizune]

The isolation is killing me, I haven't left my house in a whole month, I spend almost 24 hours a day in my room. Is anyone else doing the same? Life truly is a sick joke.

Yep. I think I've left the house maybe 4 times since the start of the year, just for appointments. It sucks.

In other news: Fuck motorcycles. Memorial day weekend is the worst. I think I got hit with motorcycle noise at least 20 times yesterday. And then a house phone rang with me inches away from it, just my luck too because it never rings. My goose is cooked.

 

[LilCC]

Yep. I think I've left the house maybe 4 times since the start of the year, just for appointments. It sucks.

In other news: Fuck motorcycles. Memorial day weekend is the worst. I think I got hit with motorcycle noise at least 20 times yesterday. And then a house phone rang with me inches away from it, just my luck too because it never rings. My goose is cooked.

I hate motorcycles, they are obnoxiously loud. Whenever I decide to go out there is always someone revving it right next to my car.

 

[Shizune]

I hate motorcycles, they are obnoxiously loud. Whenever I decide to go out there is always someone revving it right next to my car.

I swear it's like they know we have hyperacusis and they go out of their way to make our lives miserable.

A few weeks ago I stepped outside around 11:30 PM, usually a time when no cars are going by, to view the lunar eclipse and just at that moment a whole bunch of them went by. It's like we're magnets for disaster.

 

[Jerad]

Catastrophic tinnitus and hyperacusis are like going to war in this world — taking-up arms, charging into combat, facing fear and aversion — but for something we don't even believe in; for a war we don't wanna fight. It's like being forced to join the enemy's brigade. It's not our cause, not our mission — we fuckin' hate it, in fact. And the mental effects are devastating. PTSD. Severe trauma. GAD. All of it combined. And to top it off, instead of the war ending, becoming threads confined to memory, it just lives on and never ends. It's a war we feel we cannot win. We're outnumbered, getting slaughtered. The enemy never stops, never loses strength, never is outsmarted, the unstoppable beast it is. Maybe it's worse than worldly wars. Maybe it's like WW1 + WW2 + Vietnam + the Gulf War + Iraq + being a POW under Hitler, Isis, and Kim Jong-un's command, all in cahoots, all together, all conducting the fiercest war in history. Maybe it's like that — all that shit combined. Or maybe it's indescribable. Losing your life to war kinda is.

 

[DebInAustralia]

200 mg prometrium (per rectum, and I'm male, but prometrium promotes sleep)

I see you are on prometrium.

I've been recommended to take it for perimenopause.

Does it have an impact on your tinnitus in any way?

 

[TheDanishGirl]

Today I'm so devastated over the life I lost. So full of regret and heartbroken of how I've ended up and that that I can't change the facts. At 30 years old I had a birthday celebration after I had just finished my education the same year, and had really started to have a social life and hopes and dreams for the future. 5 years later I'm a living dead. In pain and merely existing. Bitter and resentful, and I have almost nothing left. No job or work ability, no friends/social life, no mobility or ability to do much of anything (have to lie in bed most of the day), no dreams and a hope that is about to die completely.

If I hadn't had such a bad upbringing where my basic needs were not fulfilled, I probably wouldn't have sat holed up in my room in my teen years with headphones playing loud music as my escape from reality...

...and if I hadn't done that I wouldn't have gotten tinnitus and hyperacusis...

...and if I hadn't got that, I would have never had to resort to Mirtazapine that destroyed my eyes, highly probably made my ears even worse, and destroyed my health overall...

...and if I hadn't tried a slow taper RIGHT at that time where a few days later new noisy neighbours moved in, I highly probably wouldn't have been hit so hard by stress that I came down with these internal tremors, that did me in.

I can't believe the unluck I have been served in life. Its completely absurd and unreal

I just want to curl up in a ball and sob like a baby until my dying breath. How I wish I could go back... how much my heart aches to be able to... but it will never be.

 

[LilCC]

Today I'm so devastated over the life I lost. So full of regret and heartbroken of how I've ended up and that that I can't change the facts. At 30 years old I had a birthday celebration after I had just finished my education the same year, and had really started to have a social life and hopes and dreams for the future. 5 years later I'm a living dead. In pain and merely existing. Bitter and resentful, and I have almost nothing left. No job or work ability, no friends/social life, no mobility or ability to do much of anything (have to lie in bed most of the day), no dreams and a hope that is about to die completely.

If I hadn't had such a bad upbringing where my basic needs were not fulfilled, I probably wouldn't have sat holed up in my room in my teen years with headphones playing loud music as my escape from reality...

...and if I hadn't done that I wouldn't have gotten tinnitus and hyperacusis...

...and if I hadn't got that, I would have never had to resort to Mirtazapine that destroyed my eyes, highly probably made my ears even worse, and destroyed my health overall...

...and if I hadn't tried a slow taper RIGHT at that time where a few days later new noisy neighbours moved in, I highly probably wouldn't have been hit so hard by stress that I came down with these internal tremors, that did me in.

I can't believe the unluck I have been served in life. Its completely absurd and unreal

I just want to curl up in a ball and sob like a baby until my dying breath. How I wish I could go back... how much my heart aches to be able to... but it will never be.

What else do you suffer from apart from hyperacusis and tinnitus? I also lost it all within a year, most of the day I lie on my bed reminiscing on all my past memories.

 

[TheDanishGirl]

What else do you suffer from apart from hyperacusis and tinnitus? I also lost it all within a year, most of the day I lie on my bed reminiscing on all my past memories.

Visual snow with all sorts of visual disturbances, and lots of floaters. And now internal tremors that makes me unable to relax and stresses me a great deal. And lots of other physical side effects from Mirtazapine. I had previous episodes of depression and generalized anxiety disorder, but they were manageable before all this crap. Misophonia I also have developed no doubt. Just a complete mess.

I'm so sorry this has befallen you too. I also felt lots of regret and lingered to my former life a whole lot in the first 1-2 years of tinnitus and hyperacusis, then I got over it for a while, but now that more and more unlucky circumstances has made me worse and worse, I am back in this mental state.

 

[dan]

It's like we're magnets for disaster.

I FEEL THE SAME WAY. You step outside for 5 minutes... Cities are no longer safe.

 

[Wrfortiscue]

Visual snow with all sorts of visual disturbances, and lots of floaters. And now internal tremors that makes me unable to relax and stresses me a great deal. And lots of other physical side effects from Mirtazapine. I had previous episodes of depression and generalized anxiety disorder, but they were manageable before all this crap. Misophonia I also have developed no doubt. Just a complete mess.

I'm so sorry this has befallen you too. I also felt lots of regret and lingered to my former life a whole lot in the first 1-2 years of tinnitus and hyperacusis, then I got over it for a while, but now that more and more unlucky circumstances has made me worse and worse, I am back in this mental state.

Do you get tremors only when lying or all the time? I had those for years lying down. Felt like my chest and stomach were vibrating. Have a bunch of nerve issues from panic disorder I had years ago.

 

[TheDanishGirl]

Do you get tremors only when lying or all the time? I had those for years lying down. Felt like my chest and stomach were vibrating. Have a bunch of nerve issues from panic disorder I had years ago.

They are there when standing up as well, although they are worse when lying down. For me it is felt in the chest and then it rushes down my legs. It felt kinda pulsating in intensity, and actually also started being felt in my arms too, although not 24/7.

 

[Lurius]

Today I'm so devastated over the life I lost. So full of regret and heartbroken of how I've ended up and that that I can't change the facts. At 30 years old I had a birthday celebration after I had just finished my education the same year, and had really started to have a social life and hopes and dreams for the future. 5 years later I'm a living dead. In pain and merely existing. Bitter and resentful, and I have almost nothing left. No job or work ability, no friends/social life, no mobility or ability to do much of anything (have to lie in bed most of the day), no dreams and a hope that is about to die completely.

If I hadn't had such a bad upbringing where my basic needs were not fulfilled, I probably wouldn't have sat holed up in my room in my teen years with headphones playing loud music as my escape from reality...

...and If I hadn't done that I wouldn't have gotten tinnitus and hyperacusis...

...and if I hadn't got that, I would have never had to resort to Mirtazapine that destroyed my eyes, highly probably made my ears even worse, and destroyed my health overall...

...and if I hadn't tried a slow taper RIGHT at that time where a few days later new noisy neighbours moved in, I highly probably wouldn't have been hit so hard by stress that I came down with these internal tremors, that did me in.

I can't believe the unluck I have been served in life. Its completely absurd and unreal

I just want to curl up in a ball and sob like a baby until my dying breath. How I wish I could go back... how much my heart aches to be able to... but it will never be.

I don't think you realize how difficult it was for me to read this. This is MY story. I understand you so damn well. I'm actually crying right now. I feel just the same way, moth eaten by bitterness and all hope destroyed for any kind of future resembling a happy life. I want to take the focus off me, because this is your post, but just let me say that I would hug you so hard if I could and I would actually see you if I had the opportunity just to do that. Nobody deserves this, but life is random and chaotic and it can cause people to win the lottery at random or get tinnitus at random. It's deeply unfair but I also hid in metal music and video games and I would actually wear headset, escaping into my own world while walking around in school, downtown or wherever as my autism does not mix well with a lot of things and feeling deeply misunderstood by almost everyone, especially my family (who also abused me) made me a bit of a recluse.

I hope you truly understand when I say that I UNDERSTAND YOU and you have my deepest, most profound empathy. I really identify with what you wrote, more than almost anything else I've seen in this forum. Jesus, I'm still crying.

 

[Wrfortiscue]

They are there when standing up as well, although they are worse when lying down. For me it is felt in the chest and then it rushes down my legs. It felt kinda pulsating in intensity, and actually also started being felt in my arms too, although not 24/7.

Wow, sorry to hear that. They are awful for sure... Did the Mirtazapine cause this for you?

 

[TheDanishGirl]

Wow, sorry to hear that. They are awful for sure... Did the Mirtazapine cause this for you?

Yes, I highly suspect it has.

 

[Daniel Lion]

Hi @LilCC, you may consider visiting or calling the Silverstein clinic in Sarasota Florida. The doctor has done a lot of pioneering work with hyperacusis and a surgery for the round window. There's a guy named Neil Hyak who I consulted with years ago at this clinic about my hyperacusis, which has subsequently got much better. Try and contact Neil Hyak.

These doctors will be receptive to you and may write you a script for some Valium or something that you could lean on if you felt so inclined.

I have been reading all of your posts and feel your pain. Please don't give up on taking care of yourself and eating well. Diet and exercise do help recovery from hyperacusis.

Take care buddy, one baby step at a time.

Daniel

 

[LilCC]

Hi @LilCC, you may consider visiting or calling the Silverstein clinic in Sarasota Florida. The doctor has done a lot of pioneering work with hyperacusis and a surgery for the round window. There's a guy named Neil Hyak who I consulted with years ago at this clinic about my hyperacusis, which has subsequently got much better. Try and contact Neil Hyak.

These doctors will be receptive to you and may write you a script for some Valium or something that you could lean on if you felt so inclined.

I have been reading all of your posts and feel your pain. Please don't give up on taking care of yourself and eating well. Diet and exercise do help recovery from hyperacusis.

Take care buddy, one baby step at a time.

Daniel

Thank you Daniel! So I have contemplated getting the surgery, the cool thing is that Sarasota is only 2 hours from where I live, so my mom would be able to take me. The thing that concerns me is that if I get that surgery I won't be able to use any of the upcoming treatments in the pipeline. So I'm holding on to these treatments to see if they come anytime soon, if not, then I will proceed to get that surgery done.

 

[Daniel Lion]

Thank you Daniel! So I have contemplated getting the surgery, the cool thing is that Sarasota is only 2 hours from where I live, so my mom would be able to take me. The thing that concerns me is that if I get that surgery I won't be able to use any of the upcoming treatments in the pipeline. So I'm holding on to these treatments to see if they come anytime soon, if not, then I will proceed to get that surgery done.

Hey friend,

Take your time on the surgery. Just talk to them and see if they can check you out, your stapes may have movement or maybe there is a mechanical problem they can diagnose. Don't rush it, just open the lines of communication. I don't see how this procedure would affect stuff down the pipeline, but that's neither here nor there.

The thing to do is to get the hyperacusis in check and then deal with the tinnitus.

Keep in mind that things take forever with ears, or very slowly.

Magnesium, garlic, fish and vegetables helped me get over hyperacusis, and leaning on Valium for a year. This drug helped me in many ways but you then need to do a slow taper. Somehow it relaxes the ear muscles and nervous system. It's a blunt tool I never wanted, but it did help.

It is really important to not give up hope.

Keep fighting, we all love and care about you here and understand your anguish.

Wishing you the best LilCC,
DL

 

[Jerad]

Hey friend,

Take your time on the surgery. Just talk to them and see if they can check you out, your stapes may have movement or maybe there is a mechanical problem they can diagnose. Don't rush it, just open the lines of communication. I don't see how this procedure would affect stuff down the pipeline, but that's neither here nor there.

The thing to do is to get the hyperacusis in check and then deal with the tinnitus.

Keep in mind that things take forever with ears, or very slowly.

Magnesium, garlic, fish and vegetables helped me get over hyperacusis, and leaning on Valium for a year. This drug helped me in many ways but you then need to do a slow taper. Somehow it relaxes the ear muscles and nervous system. It's a blunt tool I never wanted, but it did help.

It is really important to not give up hope.

Keep fighting, we all love and care about you here and understand your anguish.

Wishing you the best LilCC,
DL

@Daniel Lion, what is your tinnitus like and did it improve? How often did you take Valium during that year?

 

[Greg Sacramento]

Thanks for the help, @Greg Sacramento. Would taking a GABA supplement help, too? Or can that backfire?

Cod liver oil pills.

Avoid: Packaged foods such as soups and lunch meat as they contain MSG which breaks down into glutamate. Avoid aspartame artificial sweetener. 40% of aspartame contains apspartic acid, which in excess kills certain neurons by allowing the influx of too much calcium into your cells.

 

[Lurius]

Cod liver oil pills.

Avoid: Packaged foods such as soups and lunch meat as they contain MSG which breaks down into glutamate. Avoid aspartame artificial sweetener. 40% of aspartame contains apspartic acid, which in excess kills certain neurons by allowing the influx of too much calcium into your cells.

All right, about aspartame. Please tell me more. I've been insanely curious about that for years. Prior to my tinnitus I was on a "diet" of something like 5 litres of Pepsi Max (sugarfree Pepsi) on a weekly basis. It's hard to find any serious, reliable info about this, but I know that before it was greenlit as "safe" and they started putting it in all kinds of things, it was actually considered a chemical weapon by the Pentagon.

 

[Shizune]

Thank you Daniel! So I have contemplated getting the surgery, the cool thing is that Sarasota is only 2 hours from where I live, so my mom would be able to take me. The thing that concerns me is that if I get that surgery I won't be able to use any of the upcoming treatments in the pipeline. So I'm holding on to these treatments to see if they come anytime soon, if not, then I will proceed to get that surgery done.

I consulted with Silverstein in March 2021 and asked about FX-322 at the time. He said he developed a modified surgery that can still allow for intratympanic injections. Can't seem to find my post at the moment but I believe he said he would keep one of the windows (oval or round, i forget which) open to allow for injections, but that the results should still be beneficial. You should definitely look into it since you're so close.

I know there was a hyperacusis trial in a similar area but I don't know if they've wrapped up testing just yet.

 

[LilCC]

I consulted with Silverstein in March 2021 and asked about FX-322 at the time. He said he developed a modified surgery that can still allow for intratympanic injections. Can't seem to find my post at the moment but I believe he said he would keep one of the windows (oval or round, i forget which) open to allow for injections, but that the results should still be beneficial. You should definitely look into it since you're so close.

I know there was a hyperacusis trial in a similar area but I don't know if they've wrapped up testing just yet.

Thank you so much for the info I'm wondering if the surgery helps pain hyperacusis? Or has anybody on Tinnitus Talk that has pain hyperacusis had it done? I know Brian Newman was considering it, and he has a similar case to myself. I have actually been considering the surgery. I wanted to give myself a little more time to see if I would improve, but it has been a year now and I've gotten worse. I need to do more research on it and see what that drawbacks are. I honestly don't know much about the actual procedure.

 

[LilCC]

Hey friend,

Take your time on the surgery. Just talk to them and see if they can check you out, your stapes may have movement or maybe there is a mechanical problem they can diagnose. Don't rush it, just open the lines of communication. I don't see how this procedure would affect stuff down the pipeline, but that's neither here nor there.

The thing to do is to get the hyperacusis in check and then deal with the tinnitus.

Keep in mind that things take forever with ears, or very slowly.

Magnesium, garlic, fish and vegetables helped me get over hyperacusis, and leaning on Valium for a year. This drug helped me in many ways but you then need to do a slow taper. Somehow it relaxes the ear muscles and nervous system. It's a blunt tool I never wanted, but it did help.

It is really important to not give up hope.

Keep fighting, we all love and care about you here and understand your anguish.

Wishing you the best LilCC,
DL

Thank you for the advice my friend I'm wondering if the surgery has been used for pain hyperacusis? I'm doing a little more research to see what the drawbacks are. If I feel comfortable I will go ahead and do the surgery.

What exactly does Valium do? Does he prescribe it at his clinic? Does it help pain?

My biggest fear is getting hooked on a drug and having to taper off and getting nasty side effects. I will be looking into it for sure. If I can at least get some 30 percent improvement, that alone would literally save my life.

 

[Shizune]

Thank you so much for the info I'm wondering if the surgery helps pain hyperacusis? Or has anybody on Tinnitus Talk that has pain hyperacusis had it done? I know Brian Newman was considering it, and he has a similar case to myself. I have actually been considering the surgery. I wanted to give myself a little more time to see if I would improve, but it has been a year now and I've gotten worse. I need to do more research on it and see what that drawbacks are. I honestly don't know much about the actual procedure.

There was an article about the surgery where a woman with noxacusis got it and she was cured. I don't know much about her particular case though or how she's doing now.

She lived in a world where every sound was painful

But I find it odd it says she immediately went to the loudest restaurant after her surgery. I hope she didn't get worse. Silverstein says you should take it easy for several months. I know of a guy who got too cocky and went back to square one because he didn't allow to heal long enough.

It seems like he's been improving the method over the years. He's found a lot of people tend to have hypermobile stapes so he will reinforce that if he thinks it's loose. I think it may be cause dependent but I don't know enough of the surgery to know who benefits more and who doesn't, especially when we don't know if our hyperacusis may be middle or inner ear related. It seems like the person who got the surgery who made the thread here had loudness.

I've seen ENTs fight back on his methods and doubt the surgery but it does seem to help a lot of people. It seems like Silverstein actually has a few intuitive surgeries for ear problems that should be explored more.

 

[LilCC]

There was an article about the surgery where a woman with noxacusis got it and she was cured. I don't know much about her particular case though or how she's doing now.

She lived in a world where every sound was painful

But I find it odd it says she immediately went to the loudest restaurant after her surgery. I hope she didn't get worse. Silverstein says you should take it easy for several months. I know of a guy who got too cocky and went back to square one because he didn't allow to heal long enough.

It seems like he's been improving the method over the years. He's found a lot of people tend to have hypermobile stapes so he will reinforce that if he thinks it's loose. I think it may be cause dependent but I don't know enough of the surgery to know who benefits more and who doesn't, especially when we don't know if our hyperacusis may be middle or inner ear related. It seems like the person who got the surgery who made the thread here had loudness.

I've seen ENTs fight back on his methods and doubt the surgery but it does seem to help a lot of people. It seems like Silverstein actually has a few intuitive surgeries for ear problems that should be explored more.

I'll have to do more research on this surgery. The cool thing is that it doesn't seem to be to invasive, which is a positive. I'll wait it out for a bit longer but I am for sure considering it. The price is $8k, which most likely I will have to pay out of pocket since I don't have insurance. I know some people want to get this surgery done but they live in different countries or too far. I am fortunate to only have a 2 hour drive, which is extremely convenient for me.

 

[DebInAustralia]

Thank you for telling me. I'll look into it. How severe was there case, if you know?

Edit: Just looked it up. Thanks for the recommendation. Unfortunately, anything that messes with Serotonin sends my tinnitus through the roof .

I'm sorry. I missed your post.

His tinnitus and noxacusis were severe.