Suicidal

[HootOwl]

This is really familiar & I feel the same way, everyday. And it is indeed incredibly fucking hard and exhausting. For me, it's not so much the distortion, but my complete inability to hear sounds without severe pain lingering for days, if not longer. There's nothing to do about it at the moment, which is really disheartening. I'm sorry you have to go through this, I really wish things were differently for all of us. I will remain wishful, I hope you can too.

I'm so sorry Lab, can you listen to music at very low volume? Does that keep the pain down even a little?

 

[Labyrinthine]

I'm so sorry Lab, can you listen to music at very low volume? Does that keep the pain down even a little?

Unfortunately, no... I think my LDLs are literally 0 at the moment, if not negative. Simple things like whispering (let alone talking), or taking a shower are virtually impossible. Haven't heard my own voice for months & taking a shower with plugs and muffs even for two minutes gives me a lot of pain. I didn't mean to hijack your post btw. I merely wanted to express my concern and tell you that you're not alone.

 

[HootOwl]

Unfortunately, no... I think my LDLs are literally 0 at the moment, if not negative. Simple things like whispering (let alone talking), or taking a shower are virtually impossible. Haven't heard my own voice for months & taking a shower with plugs and muffs even for two minutes gives me a lot of pain. I didn't mean to hijack your post btw. I merely wanted to express my concern and tell you that you're not alone.

No no no. Dude no. We're all suffering together. In no way was this hijacking. Please never think that. We need to hang in together until some of these treatments make it to market. I'm not going to give up, not when we're so damn close.

 

[Labyrinthine]

No no no. Dude no. We're all suffering together. In no way was this hijacking. Please never think that. We need to hang in together until some of these treatments make it to market. I'm not going to give up, not when we're so damn close.

There are definitely some great things on the horizon for tinnitus. I wish I could say the same for hyperacusis, though. Don't get me wrong, Hyperacusis Research and other researchers have made great strides in unraveling the underlying mechanisms of hyperacusis over the years, but there are no ongoing clinical trials for hyperacusis at the moment. I have my hopes set on FX-322, but there's no guarantee that it will benefit hyperacusis (or tinnitus). Only time will tell, I guess.

 

[HootOwl]

Forgive me if I'm incorrect, but isn't synaptopathy on the 5% of type 2 pain sensing afferent neurons descending to the OHC thought to be the culprit? If this is the case I truly believe Pipeline or Hough might actually be holding what could be considered true hyperacusis treatment and we don't even know it.

 

[Allan1967]

There are definitely some great things on the horizon for tinnitus.

Like what?

 

[Labyrinthine]

Forgive me if I'm incorrect, but isn't synaptopathy on the 5% of type 2 pain sensing afferent neurons descending to the OHC thought to be the culprit? If this is the case I truly believe Pipeline or Hough might actually be holding what could be considered true hyperacusis treatment and we don't even know it.

Frankly, it has been a while since I studied these mechanisms in depth. In recent years, research has found solid evidence that type II afferent neurons in the inner ear function as nociceptors, or pain sensing neurons. These neurons travel along the vestibulocochlear nerve to the brain stem (if I recall correctly: to the cochlear nucleus), after which these nerves ascend to the brain (primary auditory cortex & possibly, other parts of the brain too). The current hypothesis is that damaged outer hair cells and supporting cells leak ATP, a chemical messenger, which seems to activate these type II afferent neurons, which induces ear pain a.k.a. auditory nociception.

There is also evidence, though, that the brain and brain stem play their part in the different types of hyperacusis. Research has shown neuroinflammation in the brain stem & hyperactivity in the entire auditory system that may also contribute to hyperacusis. Hence, H can be categorized as both a central and a peripheral disorder. I think that H most likely starts out in the inner ear and central parts of the nervous system subsequently adapt to the 'new' situation in a pathological fashion. Needless to say, I could be wrong.

The reason why I have my hopes set on Fx-322 is because it would regenerate/replace those damaged OHCs which, in theory, could prevent them from leaking ATP and therefore stop the activation of type II afferent neurons (REDEMPTION!). Consequently, central parts of the brain may possibly 'revert' back to old settings, ultimately ameliorating our quality of life. Unfortunately, this is just a theory and many bald assumptions.

Furthermore, it has been speculated that pain H is, at least in part, neuropathic, which means that it could share some common features with other centralized pain disorders (so called central sensitization). In practice, pain H could eventually rewrite parts of the central nervous system, making our ear pain (semi-)permanent even though the original cause (damaged OHCs) has been fixed. This has not been proven, though, and further research is warranted.

 

[PeteJ]

@Greg Sacramento,
Sorry to bother you but I am feeling very anxious about my appointment on Friday.

I have three main concerns:
A) tinnitus severity - being forced to sit in a chair with this loud ringing. It is worse depending on the severity at the time of the appointment. Most likely it's as bad as usual.
B) drilling and breaks - 5 second breaks? Drilling duration no longer than a minute but try for 30 to 40 seconds or less? Or what?
C) pain after the freezing wears off.
What kind of medication is a client allowed to get? I mean, how strong is it allowed to be? I haven't ever got anything from the dentist but I want something this time. It's 2 fillings this time, not 1. Do I need it from a doctor because nothing is open on Saturday. I am not waiting in a full day clinic!

Part of me wants to cancel but it's probably a bad idea.

If anyone else reading this has insight on dental visits, feel free to comment.

I also had an itch after the procedure and couldn't do anything because my chin was so numb. I really don't want to go.

 

[ajc]

@Greg Sacramento,
Sorry to bother you but I am feeling very anxious about my appointment on Friday.

I have three main concerns:
A) tinnitus severity - being forced to sit in a chair with this loud ringing. It is worse depending on the severity at the time of the appointment. Most likely it's as bad as usual.
B) drilling and breaks - 5 second breaks? Drilling duration no longer than a minute but try for 30 to 40 seconds or less? Or what?
C) pain after the freezing wears off.
What kind of medication is a client allowed to get? I mean, how strong is it allowed to be? I haven't ever got anything from the dentist but I want something this time. It's 2 fillings this time, not 1. Do I need it from a doctor because nothing is open on Saturday. I am not waiting in a full day clinic!

Part of me wants to cancel but it's probably a bad idea.

If anyone else reading this has insight on dental visits, feel free to comment.

I also had an itch after the procedure and couldn't do anything because my chin was so numb. I really don't want to go.

You probably don't need a dentist visit if you're going to off yourself anyway.

 

[HootOwl]

You probably don't need a dentist visit if you're going to off yourself anyway.

Dude wtf

 

[PeteJ]

You probably don't need a dentist visit if you're going to off yourself anyway.

Until I do, I need to alleviate suffering and avoid potential problems while I'm still here. Understand?

 

[PeteJ]

Dude wtf

It's okay. I have read worse replies than that.

 

[just1morething]

It's okay. I have read worse replies than that.

Do you ever have a "good day"? I had horrible hissing yesterday but am better today. I used saline water and an EarPopper to clean out eustachian tube mucus. Also using better RIC hearing aids. I'm thinking the rinse did the most good.

 

[acute]

Trying Lenire is what stops me for making an attempt but I'm completely convinced that I want to off myself and I eventually will. The thing is that I still don't know when I'll do it. And I am tired of waiting in hell.

I ate three kind of pills in order to put me sleep and stop the panic attack but I'm still here, awake, and it's fucking loud and I'm fucking suffering it.

I think I will die young thanks to this malady. Thank you fucking tinnitus, for ruining my life. Fuck you.

 

[just1morething]

Thank you fucking tinnitus, for ruining my life. Fuck you.

It's always better to be positive and hopeful. I know how those really bad days are though. They seem almost unbelievable. My head was hissing something fierce yesterday.

Have you tried hearing aids? They might help your brain fill in missing inputs plus magnify external sounds to cover up your noise. The BTE one's are not very noticeable.

 

[MRItechssuck]

Lenire, Michigan, then the drugs in the pipeline. Time will help... but I wish I could say something to help with your anxiety... the younger you are the more pliable your brain will be.

There are people worse off.... in wheelchairs, etc... so try to keep that in perspective... and I'm not minimizing your hell... tinnitus is hell... I just don't want anyone to give up.

Good luck.

 

[dan]

Trying Lenire is what stops me for making an attempt but I'm completely convinced that I want to off myself and I eventually will. The thing is that I still don't know when I'll do it. And I am tired of waiting in hell.

I ate three kind of pills in order to put me sleep and stop the panic attack but I'm still here, awake, and it's fucking loud and I'm fucking suffering it.

I think I will die young thanks to this malady. Thank you fucking tinnitus, for ruining my life. Fuck you.

Can you describe your tinnitus? Is it multi tonal or pure tone? How loud is it? I just can't watch your YouTube... and you never know, Lenire might work for you! Miracles have been known to happen in the tinnitus world.

 

[PeteJ]

Do you ever have a "good day"? I had horrible hissing yesterday but am better today. I used saline water and an EarPopper to clean out eustachian tube mucus. Also using better RIC hearing aids. I'm thinking the rinse did the most good.

Depends how you define a good day. I say no. A good day to me is it lowering to a volume level in which I think I could work and not getting any worse - and lasting for most if not the entire day.

Instead, my tinnitus might fluctuate from 10/10 to 8/10 and then goes back to 10/10 severity in the evening. It did that today but I don't consider that a good day.

What volume level do you consider a good day? 4/10 and below?

 

[Kriszti]

I am so fed up with everything today. After 7 weeks I still can't sleep. Once I got 5 hours, but I'm back to 2-3 hours in pieces and I should be studying for like 8+ hours a day in a field which I absolutely loathe. I can't concentrate at all. To top that, I started to experience that instruments in music sound distorted. This devastates me beyond belief. I just hate what my life has become. Isolated, depressed, sleep deprived and this damn noise. Nothing seems to be enjoyable anymore. I'm just not strong enough to get used to this shit, and I just screw up everyone else's mood and life around me too.

 

[Harley]

There are people worse off.... in wheelchairs, etc... so try to keep that in perspective...

I strongly disagree.
Before Tinnitus, I always thought that ending up in the wheelchair is one if the the worst things that can happen to someone.

I no longer think so, as I would happily trade the wheelchair for silence inside my head.
And I'm not trying to exaggerate to make a point.

If someone offered me such a trade, I would be extatic.
Sure I would have mobility issues, but getting on disability would be a breeze, as nobody in their right mind would question me, along with my mental health and my attitude such as is the case with Tinnitus.

Then I could at least enjoy small things, like feeding the ducks by the pond, beautiful sunsets, reading a book..etc

The ability to sleep and relax is the very foundation of our well being.
When Tinnitus strips them both away via permanent 24/7 torture with no relief or a possibility to escape it (other than suicide), there is really nothing left.
Nothing but a sub-human, extreme survival nightmare existence, that is completelly void of any joy or happiness.

So I would be carefull with presenting the wheelchair as the worse case scenario from Tinnitus.

 

[MRItechssuck]

I'm not minimizing anyone's torture here...

I didn't present being in a wheelchair "as a worse case," it is one of many horrific things people live through. You misread it, I put "wheelchairs, etc." but you bit off on that part.

It was a generalization, because I want everyone to deal with tinnitus and live...sorry if I offended you.

"My main diagnosis's are as follows although most of them are complications of Ehlers Danlos Syndrome (a rare connective tissue disorder), Postural tachycardia syndrome, Gastroparesis, Intestinal dysmotility, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Heart Murmur, SVT and a few more. I am currently fed via a feeding tube which goes into my intestines because my stomach is paralysed and I can't digest food properly. I will do seperate posts on my chronic illness in the future but for now, that is pretty much the basic's of my journey so far and what led me to want to make a Blog."

https://www.amyleefisher.com/single-post/2018/06/18/My-First-Post-Welcome

On disability you 100% correct, could I sue the MRI technician if I was in a wheelchair versus tinnitus....Yes.

My $.02,

I hope tomorrow is a better day...

 

[Harley]

I'm not minimizing anyone's torture here...

I didn't present being in a wheelchair "as a worse case," it is one of many horrific things people live through. You misread it, I put "wheelchairs, etc." but you bit off on that part.

It was a generalization, because I want everyone to deal with tinnitus and live...sorry if I offended you.

"My main diagnosis's are as follows although most of them are complications of Ehlers Danlos Syndrome (a rare connective tissue disorder), Postural tachycardia syndrome, Gastroparesis, Intestinal dysmotility, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Heart Murmur, SVT and a few more. I am currently fed via a feeding tube which goes into my intestines because my stomach is paralysed and I can't digest food properly. I will do seperate posts on my chronic illness in the future but for now, that is pretty much the basic's of my journey so far and what led me to want to make a Blog."

https://www.amyleefisher.com/single-post/2018/06/18/My-First-Post-Welcome

On disability you 100% correct, could I sue the MRI technician if I was in a wheelchair versus tinnitus....Yes.

My $.02,

I hope tomorrow is a better day...

No offense taken, as I know that you didn't mean it in a bad way.
I just wanted to provide some context on the wheelchair part.
All good here.

 

[just1morething]

What volume level do you consider a good day? 4/10 and below?

I suppose yeah. Mine seems to be really bad or really good. I was thinking it was related to my neck possibly or maybe ETD. I can't seem to put 2 good days together. Awakening from a nap or overnight sleep resets my noise to a very high level.

 

[Allan1967]

I think VAD at Pegasos will be the way forward for me. I can't talk my wife around to going along with it, so I'm just going to have tell her this is my choice. She can be smart about it and be left with my pensions etc or she can throw a wobbler and divorce me and get left without it.

Way I see it, its a opportunity to tie up loose ends, say what you want to say to each other, make your peace with God and go with dignity rather that die in a muddy forest, in pain only to leave people traumatized and your ending appearing in the local news and on Facebook (where some twat will post shit), like I nearly did 7 or 8 weeks ago.

All the best.

 

[ajc]

I think VAD at Pegasos will be the way forward for me. I can't talk my wife around to going along with it, so I'm just going to have tell her this is my choice. She can be smart about it and be left with my pensions etc or she can throw a wobbler and divorce me and get left without it.

Will Pegasos euthanize people with only tinnitus? Dignitas won't.

I'm afraid Swiss doctors won't give the green light for tinnitus only...

 

[PeteJ]

I suppose yeah. Mine seems to be really bad or really good. I was thinking it was related to my neck possibly or maybe ETD. I can't seem to put 2 good days together. Awakening from a nap or overnight sleep resets my noise to a very high level.

Sounds odd to me.

If I by some miracle, get lots of sleep - won't be quality - but enough straight hours, my t can be lower in volume and intensity. Not a lot but it is noticeable. If, I don't get enough sleep, then the tinnitus is extremely loud and high crazy intensity.

I won't relief for long after waking up from a decent sleep duration but there's a difference between sleeping from midnight to 9am and sleeping from 3am to 8am.

 

[valeri]

I think VAD at Pegasos will be the way forward for me. I can't talk my wife around to going along with it, so I'm just going to have tell her this is my choice. She can be smart about it and be left with my pensions etc or she can throw a wobbler and divorce me and get left without it.

Way I see it, its a opportunity to tie up loose ends, say what you want to say to each other, make your peace with God and go with dignity rather that die in a muddy forest, in pain only to leave people traumatized and your ending appearing in the local news and on Facebook (where some twat will post shit), like I nearly did 7 or 8 weeks ago.

All the best.

Nobody will understand your decision, nobody unless in your shoes. This would be my choice too if available.

Sure we deserve some f....g dignity in death at least, since in life we have been stripped off of all pleasure and happiness and simple things normal people enjoy!

Surviving is not living!

 

[PeteJ]

As usual, it is worse later on the evening it goes. My left ear is in pain again which makes everything worse.

The ringing is so loud. I don't want to be alive with this. I wish euthanasia was legal. I am afraid I am just going to decide to off myself suddenly whether I plan it out methodically or just try a method.

I am wasting time just suffering because suicide would end the torment. I have absolutely no enjoyment whatsoever.

 

[mrbrightside614]

As usual, it is worse later on the evening it goes. My left ear is in pain again which makes everything worse.

The ringing is so loud. I don't want to be alive with this. I wish euthanasia was legal. I am afraid I am just going to decide to off myself suddenly whether I plan it out methodically or just try a method.

I am wasting time just suffering because suicide would end the torment. I have absolutely no enjoyment whatsoever.

Are you on any meds for sleep? I cannot sleep naturally anymore but getting on something that at least eats the hours away from painful conscious existence has been helpful.

 

[dan]

I think I will die young thanks to this malady. Thank you fucking tinnitus, for ruining my life. Fuck you.

Mark me - you will habituate one day, and you will be thankful for it.