Suicidal

[GoatSheep]

Why was the Trobalt discontinued anyway?

https://www.epilepsysociety.org.uk/...balt-retigabine-to-be-discontinued-14-09-2016

"In 2013 GSK announced that there were safety issues around the drug as it could cause a blue discolouration of the skin and eye abnormalities."

At least one of the eye abnormalities is visual snow.

 

[just1morething]

I gave Trobalt a shot - I had immediate complications. However it did help a lot of people, that's why I suggested it.

It did a lot more harm than good. My Dr. would not prescribe it. He said the PDR listed cardiac arrest as a possible side effect. And we know of all the permanent eye problems it caused. Why would you push a drug that had a black box warning from the FDA?

 

[ajc]

Why would you push a drug that had a black box warning from the FDA?

And possibly caused directly or indirectly many people's death.

Trobalt is toxic! Don't take it!

 

[HootOwl]

Guys,

I'm absolutely devastated. I just recently got a new loud thumping bass sound in my right ear. It's so damn loud and it's driving me to suicidal thoughts. The only thing that masks it is the low bass rumble of road noise, and that's it. I can hear it everywhere in my house, over my fans, over the shower, over running water, the fridge and TV. In stores, over music (except music with bass, which is ironic because I loathe music with heavy bass).

I just can't take it anymore. No matter what I do or don't do it gets worse. I feel like raging at the world, all of this anger and frustration is churning inside me and I can't help but think ITS JUST NOT FAIR. I could live with mild tinnitus. I did for 8 years. I lived with moderate tinnitus for the next 3 after my first worsening and kept telling myself to keep going, but this....this is too much....it vibrates the whole right side of my head....

I'm crying right now because I want to die so badly. But my dad committed suicide when I was young from terminal throat cancer and my suicide would devastate my mom beyond degree. I told her my plans and she just cling to me and said "please...no...I can't bear it".

But how do you keep going when treatment is years down the road? And even then there's no guarantee. I've probably read through every research thread 5 times over just to try and calm myself and see some glimmer of hope, that maybe, MAYBE one day I'll have my mild tinnitus back. but I'm just so exhausted, so tired of it all...

 

[jimH]

I'm absolutely devastated. I just recently got a new loud thumping bass sound in my right ear. It's so damn loud and it's driving me to suicidal thoughts. .

Being that it just began recently, it might just be a spike. Do you know what triggered it? Spikes can last a while sometimes. So, don't assume that this is a permanent change and your new base.

What I can tell you from many years of experience is that stress, anger and rage can not only trigger spikes but exacerbate them and make them last even longer than they probably would have.

Hang in there! Try to think of it as probably being just temporary and will eventually subside back to your previous base.

 

[HootOwl]

Being that it just began recently, it might just be a spike. Do you know what triggered it? Spikes can last a while sometimes. So, don't assume that this is a permanent change and your new base.

What I can tell you from many years of experience is that stress, anger and rage can not only trigger spikes but exacerbate them and make them last even longer than they probably would have.

Hang in there! Try to think of it as probably being just temporary and will eventually subside back to your previous base.

Jim I would very much like it to be a spike, but if the the last 11 years has taught me anything it's that I don't get spikes. Every new sound I've ever gotten has stayed, without exception. Hell I can still hear my mild tinnitus underneath all this racket - the one I got at 18.

That's why new sounds terrify me so much. Because in my case they never go away...

The only thing that might have triggered it would be that my usual car was in the shop and I had to borrow a different one. This has a slightly louder idling sound but I was only in it for about 10 minutes, 3 times over the course of a few days. It makes me want to cry to think about something so normal and mundane causing a new soul crushing tone.

 

[jimH]

Jim I would very much like it to be a spike, but if the the last 11 years has taught me anything it's that I don't get spikes. Every new sound I've ever gotten has stayed, without exception.

Well, like that old saying, "There's a first time for everything." Maybe, just maybe, this is one of them. Just be open minded enough to accept that as a possibility.

It's very frustrating for me when I see someone at the "desperation point" and I cannot think of anything to write that will give them some hope to help them cope because I've been there more than once and know what it's like....

 

[HootOwl]

I understand and thank you I just can't help but be in tears right now. I just want my old life back. Or even just turn back the clock a week and have my moderate T back. All I think about are the mistakes I've made and how it would all be different if I had or hadn't done so and so. It's so painful knowing that this new loud tone might have been self inflicted, I'll never forgive myself.

 

[PeteJ]

No one answered my questions.

Anyone here have severe tinnitus I.e. 8/10 severity or worse - who, here?

I am wondering if your hearing loss is mild/moderate or worse. Is it more likely to have an apparent link or relation with hearing loss (not just hidden hearing loss) and severe tinnitus?

Or is severe tinnitus probably more linked to acoustic trauma or possibly both? This being a suicide thread, I suppose many posting consider their tinnitus severity 'rating' to be 8/10 (insanely loud/severe) or worse, right?

 

[just1morething]

Please kick me in the balls...

That can be arranged bud. I'll find someone to do the handiwork. I was thinking maybe your wife? Of course I told her about your mistresses.

 

[PeteJ]

One more question: I asked this before and/or someone else did:
If tinnitus severity is 9/10 say, is there a percentage probability or chance of it lowering? Is it only possible from these research treatments? Maybe it's less than 1? If mine has virtually no chance then I want to arrange my suicide period. I know of two methods and I am scared to but the tones/tinnitus is way too loud. I believe it is an ultra extreme case and I wish it was mild because I think it would be tolerable then. I don't understand why it's so loud and why so many tones.

I live in a noisy area. I don't know if that had anything to with it but I can't move and I can't wear plugs 24/7. The ear pain is daily and I don't want to endure this torture anymore. I want to make some arrangements before I go though. I am not on a timetable but I want to go soon.

 

[all to gain]

Jim I would very much like it to be a spike, but if the the last 11 years has taught me anything it's that I don't get spikes. Every new sound I've ever gotten has stayed, without exception. Hell I can still hear my mild tinnitus underneath all this racket - the one I got at 18.

That's why new sounds terrify me so much. Because in my case they never go away...

The only thing that might have triggered it would be that my usual car was in the shop and I had to borrow a different one. This has a slightly louder idling sound but I was only in it for about 10 minutes, 3 times over the course of a few days. It makes me want to cry to think about something so normal and mundane causing a new soul crushing tone.

You got a spike from a car idling? Is that possible? Surely a car isn't that loud.

 

[TheDanishGirl]

I am once again starting to seriously consider suicide. My hyperacusis has become so bad. I now have lasting ear pain and if this doesnt improve, then I really think I am ready to throw in the towel. I can't live like this.......it's pure hell :´(

 

[Labyrinthine]

I am once again starting to seriously consider suicide. My hyperacusis has become so bad. I now have lasting ear pain and if this doesnt improve, then I really think I am ready to throw in the towel. I can't live like this.......it's pure hell :´(

Oh, how I wish I didn't what kind of hell it is. Please give it more time... That is all we can do :/
I also feel like giving up everyday, because I really don't see the point of suffering so much. But we could be closer to better days than we think... I do really hope so!!

 

[TheDanishGirl]

Oh, how I wish I didn't what kind of hell it is. Please give it more time... That is all we can do :/
I also feel like giving up everyday, because I really don't see the point of suffering so much. But we could be closer to better days than we think... I do really hope so!!

I just see no hope for hyperacusis sufferers. It seems the only thing we can hope for is that it resolves itself or gets better... if not were screwed... that's what it seems like to me. I don't see anybody seriously researching for a cure for this. tinnitus yes, but not hyperacusis.

I will of course give it time, but I don't want to live years with hyperacusis on this level. Not if there isn't anything that gives me a bit of relief along the way. It's utterly pointless.

 

[dan]

Anyone here have severe tinnitus I.e. 8/10 severity or worse - who, here?

Me. 9-10/10 I also live in ON.

If tinnitus severity is 9/10 say, is there a percentage probability or chance of it lowering?

Always a chance, but it might take up to 4 years (from reading this forum)

I live in a noisy area. I don't know if that had anything to with it but I can't move and I can't wear plugs 24/7. The ear pain is daily and I don't want to endure this torture anymore

Not good Pete. Ear pain needs quiet to recover. Why can't you move? Get on odsp.

 

[dan]

It makes me want to cry to think about something so normal and mundane causing a new soul crushing tone.

Your car could not have given you this.

 

[dan]

MAYBE one day I'll have my mild tinnitus back. but I'm just so exhausted, so tired of it all...

Hang in there, it will die down eventually.

 

[HootOwl]

Your car could not have given you this.

I really hope so...but this idle was just so damn loud and the engine was on when I got in the passenger seat and for a moment my right ear felt this loud vibration (akin to when you pass a garbage truck) when I got in. I just keep trying to tell myself it wasn't my fault, I don't know why it being my fault makes it so unbearable.

 

[dan]

I really hope so...but this idle was just so damn loud and the engine was on when I got in the passenger seat and for a moment my right ear felt this loud vibration (akin to when you pass a garbage truck) when I got in. I just keep trying to tell myself it wasn't my fault, I don't know why it being my fault makes it so unbearable.

Was it a 1987 Ferrari?

 

[MRItechssuck]

I really hope so...but this idle was just so damn loud and the engine was on when I got in the passenger seat and for a moment my right ear felt this loud vibration (akin to when you pass a garbage truck) when I got in. I just keep trying to tell myself it wasn't my fault, I don't know why it being my fault makes it so unbearable.

Because we all kick ourselves...."coulda, shoulda, woulda"

I am 17 days into the only spike I have had in the last 15 years. Unfortunately sh!t happens.

Now what? The anxiety of whether I just "f%#cked myself over for life" will always be there, and it will get a little better with time, but the tinnitus maybe won't get better. ‍

I think my spike will be permanent and I am pissed... but whatever...

No matter our emotions, it is now something to deal with... best to press on in life. My opinion.

Good luck.

 

[Daniel Lion]

I am once again starting to seriously consider suicide. My hyperacusis has become so bad. I now have lasting ear pain and if this doesnt improve, then I really think I am ready to throw in the towel. I can't live like this.......it's pure hell :´(

Maybe you should write to Dr. Silverstein and see if you are a candidate for his surgery. High improvement numbers... 80%.

There is also the device at University of Florida, but unrealistic, nonetheless you could inquire?
My hyperacusis has come back, I had dark thoughts today...
I understand...

 

[Labyrinthine]

I just see no hope for hyperacusis sufferers. It seems the only thing we can hope for is that it resolves itself or gets better... if not were screwed... that's what it seems like to me. I don't see anybody seriously researching for a cure for this. tinnitus yes, but not hyperacusis.

I will of course give it time, but I don't want to live years with hyperacusis on this level. Not if there isn't anything that gives me a bit of relief along the way. It's utterly pointless.

Believe me, I know. I don't want to be stuck in this hell for another day either. I spend my days in a soundproof cabin 'cause my H is so extreme. Haven't been outside for months. My life heavily relies on hyperacusis research. I do think, however, that they have already figured out a lot in regard to the underlying mechanisms of noise induced pain. It's just a shame that no trials are in progress right now. I have my hopes set on Fx-322; in theory, it could really help us.

 

[HootOwl]

Was it a 1987 Ferrari?

No it was just a plain old 2012 Honda Accord! I couldn't believe it

 

[jimH]

I am 17 days into the only spike I have had in the last 15 years. Unfortunately sh!t happens.
I think my spike will be permanent and I am pissed...

Don't add to your stress and anxiety level by assuming that it's permanent. My worst spike ever lasted four months. I made things worse for myself by assuming that it was permanent. However, it did ramp back down to my previous "normal" which is annoying but tolerable. There have been other posts from members that have experienced spikes that have lasted weeks and even months.

So, there's a good chance your spike will subside too.

 

[vermillion]

Me. 9-10/10 I also live in ON.

Any tips? How do you cope if you cope?
Can you work, sleep etc?

 

[TheDanishGirl]

My mother suggests white noise generators for my hyperacusis, but I don't know... I'm scared it will worsen my hyperacusis further.

 

[dan]

Any tips? How do you cope if you cope?
Can you work, sleep etc?

I coped when my tinnitus was an 8/10 with periods of 9 spikes.
I used the method of accepting the sound as a part of me to sleep, and to function basically did what member Fishbone is describing in his posts.
So to all with 8 tinnitus... you can still enjoy life.

Not sure how to cope with 9-10.

 

[PeteJ]

Can someone summarize what (my) ear pain can be?

It's not hyperacusis with my symptoms? The pain is unbearable and I really want to stick a knife in me or hang myself.

The ear hurts but not exactly in the canal but more just under the ear - what is it called? The joint near the bone?

I called my dentist and we will discuss a nightguard and consult with a tmj specialist. But, the appointment is Thursday and I am in agony now. I don't even know how much they can help.

The muscle and jaw joint there is really sore and I have intense pain there. The pain is most severe in the area of the bone behind the ear - mastoid bone maybe? I am really worried.

@Greg Sacramento,
Sorry to bother you but does it sound seriously bad? The pain has been pretty constant for a while. Who can diagnose and treat this? Can anyone?!? The tinnitus is bad enough but having this constant ear pain as well... when I open my jaw, it is sore on that side and I have slight ear fullness too - I think. I am begging for someone to solve this.

 

[TheDanishGirl]

Can someone summarize what (my) ear pain can be?

It's not hyperacusis with my symptoms? The pain is unbearable and I really want to stick a knife in me or hang myself.

The ear hurts but not exactly in the canal but more just under the ear - what is it called? The joint near the bone?

I called my dentist and we will discuss a nightguard and consult with a tmj specialist. But, the appointment is Thursday and I am in agony now. I don't even know how much they can help.

The muscle and jaw joint there is really sore and I have intense pain there. The pain is most severe in the area of the bone behind the ear - mastoid bone maybe? I am really worried.

@Greg Sacramento,
Sorry to bother you but does it sound seriously bad? The pain has been pretty constant for a while. Who can diagnose and treat this? Can anyone?!? The tinnitus is bad enough but having this constant ear pain as well... when I open my jaw, it is sore on that side and I have slight ear fullness too - I think. I am begging for someone to solve this.

Really sounds like some TMJ related issue. That can be treated.

Do pain killers help? Not all of them are bad, in terms of tinnitus.