Suicidal

[dan]

Nothing helps but I hope Frequency Therapeutics, hearing regeneration and any other real treatment potential comes to fruition really soon - same as anyone here.

Yeah sorry bro, Frequency Therapeutics is out. Improved Retigabine RL-81 might help some of us when it comes to market in about a decade.

 

[dan]

Hey Guys, I asked this before but, what are my chances of trying FX-322 if I'm outside the US? Is it possible somehow? What path should I take?

Don't worry Richie, FX-322 just died.

 

[dan]

Everything for my death with dignity is planned and will be done sometime this April. I have a neurotologist visit scheduled for Monday but I feel like the million other doctors I've seen he'll be equally as clueless. Going to spend my last days away from the site. Farewell.

Can you describe your tinnitus? # of tones, loudness?

 

[dan]

Some people are born without the ability to perceive pain due to a mutation in their Nav1.7 receptors and there are now drugs about to start in trials that epigenetically would do the same thing without an effect on motor function.

Not being able to feel pain, is a GIFT from GOD.

 

[AliasM]

My heart hurts so badly for you and your children, and your story has me in tears. I am so fucking sorry that you are suffering so much and having to go through this. It's absolutely gut wrenching to be taken away from your children.

I don't have anything helpful to add to the discussion of your symptoms, but I just wanted to let you know that I feel what you wrote so hard. If time away from your youngest is what you need to do to try to heal, then that's what needs to happen so you can hopefully return to him later on. I completely understand what an impossibly hard decision that is to make and how hard it can be to put your needs first when you're used to taking care of everyone else.

I also pay a fortune for my two kids, 6 and 9, to go to after school care while I sit in my quiet room in pain all day. I hardly see them when they come home and when I do it's all hushed voices. I can't help my husband out with the cooking or cleaning anymore. I'm a ghost of who I used to be. My 6 year old has started waking up in the middle of the night again and crawls into my bed where she clings onto me so tightly for the rest of the night because she misses me so much. I'll hold her back and silently sob while wondering how can this even be real life and thinking that there just has to be some way back from this...

Thank you.

 

[Snake]

Is this really happening? I really have to die to end this nightmare? My tinnitus is so bad and loud that it literally hurts.

Look at Kent Taylor, he had shitload of money and probably everything a man would dream to have. Still tinnitus killed him. Tinnitus will do the same to us.

There's no hope for us, there's no help for us. Remember that, if you don't have a family then don't create it. Don't raise kids, don't let our faulty tinnitus genes to be passed on. That's our destiny.

 

[Orions Pain]

Whenever I'm deep within my tinnitus/chronic pain state of mind I have days where I can almost tolerate my current state of being but the minute I log into social media and see my old friends moving forward in life, it brings me back down into the trenches of depression.

Everyone at work is excited about the vaccines and for life to be normal again. Sadly that won't be my reality at least not any time soon.

 

[__nico__]

Can you describe your tinnitus? # of tones, loudness?

20+ tones, most of them reactive and low frequency and off the walls loud but I don't even care about any of that. It's the hearing loss why I'm suicidal.

I'm supposed to get hydrops, viral infection, and otosclerosis ruled out, which in that case I'm actually killing myself. I don't get why people wish for cancer, Cisplatin is literally the most ototoxic drug on earth.

 

[Zugzug]

Whenever I'm deep within my tinnitus/chronic pain state of mind I have days where I can almost tolerate my current state of being but the minute I log into social media and see my old friends moving forward in life, it brings me back down into the trenches of depression.

Everyone at work is excited about the vaccines and for life to be normal again. Sadly that won't be my reality at least not any time soon.

Completely agree. Healthy or not, I have largely ended my old life. Only other people with fucked up medical problems have the capacity to not make me feel like a freak. The standard 9 to 5er on Facebook is so triggering. My favorite is the whining about social distancing and how tough of a year it was (not talking about people directly impacted). I'll show you (not you) a fucking tough year.

 

[__nico__]

Well guys. I feel like I've read everything there is to read on tinnitus and hyperacusis. It becomes quite repetitive after a while. And regenerative medicine won't work for me given my damage to the stria. Given my unique history I can't really relate to anyone on here. I think it's time to log off the site for good and only check occasionally for certain things like reformulated Trobalt or whatever. I also have everything I need to peacefully kill myself and I plan on doing that quite soon as well.

Cheers.

 

[dan]

20+ tones, most of them reactive and low frequency and off the walls loud but I don't even care about any of that. It's the hearing loss why I'm suicidal.

I'm supposed to get hydrops, viral infection, and otosclerosis ruled out, which in that case I'm actually killing myself. I don't get why people wish for cancer, Cisplatin is literally the most ototoxic drug on earth.

20+ tones and are they how loud? So in a quiet room it must be like a loud place... Are the tones masked when you're outdoors?

 

[__nico__]

20+ tones and are they how loud? So in a quiet room it must be like a loud place... Are the tones masked when you're outdoors?

No, I hear them at all times, even over a freeway extremely clearly, and it's just chaotic and atonal but again I don't care about that, of course it's torture and makes concentration fucking impossible and sleep nonexistent, but it is the hearing loss that has stolen music and general enjoyment of life from me.

 

[dan]

I just can't stand another day of this. I have read all the posts over previous pages about exhausting all options, reading all the science, making an informed decision but to be honest, I just cannot stand it. I have past the limit of what I can cope with. This 24/7 all over brain noise and sensations are not tolerable to me. I just can not tolerate it. I can't escape. My brain can't relax. I get no peace. Sedatives don't even allow me to sleep through it. The hyperacusis is bad but for me, the tinnitus is worse. I need some peace and quiet, at least hyperacusis love peace and quiet. It has been 3 months with a hyperactive brain and I have had enough. It is cruel that there is no humane way to go about ending the torture. It has to be done in a way where family are left to find me. Fuck the churches, their subscribers, and the politicians for making this the case.

3 months ? That's nuthin. You have to do 3 years first. Things might change for the better.

 

[Gb3]

I take Xanax about once a week. On days when I take it the volume is substantially reduced. I wish I could take it every day because it works really damn well.

Why can't you take them daily?

 

[dan]

don't let our faulty tinnitus genes to be passed on.

Why not? According to folks here, tinnitus won't be an issue by 2025...

 

[dan]

Do us all a favor and send them a message. I'd be interested to hear as well.

Are you suicidal too?

 

[roy1159]

Whenever I'm deep within my tinnitus/chronic pain state of mind I have days where I can almost tolerate my current state of being but the minute I log into social media and see my old friends moving forward in life, it brings me back down into the trenches of depression.

Everyone at work is excited about the vaccines and for life to be normal again. Sadly that won't be my reality at least not any time soon.

I can relate so much to this... I just can't accept that my life is down the drain because of this, if not for this I should be in university starting my life but now I'm nothing.. can't work or study, can barely function daily - watching from afar while everyone enjoys/live life. I don't see any choices really... FX-322 is out of the question as it seems. My life is already cut short at 21 so I'm left with being tortured and surviving and ending myself, with one option being the more favorable.

Lives are being shattered because of this and they still claim it's a puny ringing... at this point even god can't help us.

 

[AliasM]

3 months ? That's nuthin. You have to do 3 years first. Things might change for the better.

I am so weak. I can't handle the torture. I cry all day long, and I am in constant fight or flight mode. I can't go out and rejoin society, friends or things I love like the tinnitus success stories tell you to do, because of the hyperacusis. Hyperacusis means I can't even interact with my kids in my own house. I don't know how others get through the day because I barely am. I am not as strong as you. I am in such distress.

Many success stories show improvement at 2-3 months. I'm in my 4th month and getting worse. My good ear has gone to shit in month 3 when others are getting fading.

I think about dying most hours of every day. You are stronger than me.

 

[TheDanishGirl]

Got this e-mail from Pegasos today:

Dear x,

Thank you for your email and interest in Pegasos.

Without seeing your application and medical documentation, it is difficult to give an assessment as to whether or not you would be accepted.

In saying that, I can confirm that we have had successful applications from people suffering from tinnitus, hyperacusis and visual snow syndrome previously.

In terms of further information and answering any other questions you might have, please see the FAQ section on the Pegasos website. You may also find answers to questions not covered in the FAQ section on other pages of our website. If, after reading the FAQs, you still have unanswered questions, please don't hesitate to email again.

To initiate a V.A.D., please become a Pegasos supporter and complete the online application - https://pegasos-association.com/join/

Kind regards,
Damian​

I really think that's a hopeful message, for us all. They say they have had cases like mine that got approved before, so it IS possible. I am going to become a supporter of them and complete the application.

 

[GBB]

Why can't you take them daily

It will deplete your brain of GABA receptors making your tinnitus worse.

 

[Leila]

Healthy or not, I have largely ended my old life. Only other people with fucked up medical problems have the capacity to not make me feel like a freak.

So very true!

My new tinnitus noise has become reactive and is in the process of turning me in to a hermit. Most of my friends and family can't understand why, all of a sudden, I can only be around them for a short amount of time, because from their point of view I've lived with my other tinnitus noises for years without "making a fuzz about the whole thing."

Because of this I'm all kinds of frustrated right now, especially since I have no idea how to make the people in my life understand that ordinary sounds have become physically painful for me.

Being here helps because it shows me I'm not alone in this; so thank you everybody on Tinnitus Talk for sharing your stories and offering advice and an open ear to your fellow tinnitus sufferers.

 

[Gb3]

It will deplete your brain of GABA receptors making your tinnitus worse.

It doesn't deplete your GABA receptors.

 

[FGG]

Got this e-mail from Pegasos today:

Dear x,

Thank you for your email and interest in Pegasos.

Without seeing your application and medical documentation, it is difficult to give an assessment as to whether or not you would be accepted.

In saying that, I can confirm that we have had successful applications from people suffering from tinnitus, hyperacusis and visual snow syndrome previously.

In terms of further information and answering any other questions you might have, please see the FAQ section on the Pegasos website. You may also find answers to questions not covered in the FAQ section on other pages of our website. If, after reading the FAQs, you still have unanswered questions, please don't hesitate to email again.

To initiate a V.A.D., please become a Pegasos supporter and complete the online application - https://pegasos-association.com/join/

Kind regards,
Damian​

I really think that's a hopeful message, for us all. They say they have had cases like mine that got approved before, so it IS possible. I am going to become a supporter of them and complete the application.

I understand your decision ((hug)). Consider trying anything and everything before this point, though.

There is someone on the Sound Pharmaceuticals thread trying to get SPI-1005 made in a lab for themselves. The drug is oral and reduces neuroexcitability (so far only tested on Meniere's patients but it reduced their tinnitus and the company is looking for wider application) and central inflammation (things like TNF alpha, and the effects of glutamate neuroexcitability which are linked to tinnitus).

I'm not anti euthanasia if people are suffering (I might even be there myself at some point, if things keep getting worse the way they have been), which I know you are but I'm also very pro trying every last ditch effort first. The process through Pegasos will take at least 6 months or more anyway so it may be the time to throw anything possible at this.

I'm so sorry for all the suffering.

 

[GBB]

It doesn't deplete your GABA receptors.

Nice. Thank you.

 

[TheDanishGirl]

I understand your decision ((hug)). Consider trying anything and everything before this point, though.

There is someone on the Sound Pharmaceuticals thread trying to get SPI-1005 made in a lab for themselves. The drug is oral and reduces neuroexcitability (so far only tested on Meniere's patients but it reduced their tinnitus and the company is looking for wider application) and central inflammation (things like TNF alpha, and the effects of glutamate neuroexcitability which are linked to tinnitus).

I'm not anti euthanasia if people are suffering (I might even be there myself at some point, if things keep getting worse the way they have been), which I know you are but I'm also very pro trying every last ditch effort first. The process through Pegasos will take at least 6 months or more anyway so it may be the time to throw anything possible at this.

I'm so sorry for all the suffering.

I hear ya, I do, but I simply don't see what options I have left. I can't see any. The only ones I can come up with are vitrectomy for the eye floaters and no doctor will perform that on me, or maybe stem cells for tinnitus and hyperacusis, but I can't spend that kind of money on a treatment, because I need that money in order to have the VAD available for me. That thing sadly doesn't come cheap.

I just don't know what else there is to try. I've tried several supplements, medication, therapy, self hypnosis, deep breathing, yoga, distraction and it just doesn't make me capable of handling the pain or change my decision of wanting this to end.

 

[FGG]

I hear ya, I do, but I simply don't see what options I have left. I can't see any. The only ones I can come up with are vitrectomy for the eye floaters and no doctor will perform that on me, or maybe stem cells for tinnitus and hyperacusis, but I can't spend that kind of money on a treatment, because I need that money in order to have the VAD available for me. That thing sadly doesn't come cheap.

I just don't know what else there is to try. I've tried several supplements, medication, therapy, self hypnosis, deep breathing, yoga, distraction and it just doesn't make me capable of handling the pain or change my decision of wanting this to end.

I would try Ebselen well before I tried stem cells (which I don't think ever make it to the cochlea personally but the exosomes may lower systemic inflammation for some). It's expensive but not in the same magnitude as most stem cell treatments.

For my own recent noxacusis (which started to improve on Prednisone but is now back to baseline), I just ordered some Ambroxal because it apparently helps fibromyalgia pain by blocking some pain sodium channels so I'm going to give it a whirl (as an oral although it reportedly works even better as a compounded topical). It may even be OTC in Denmark.

The process with Pegasos takes months and I think now is the time to try anything you haven't yet.

 

[TheDanishGirl]

I would try Ebselen well before I tried stem cells (which I don't think ever make it to the cochlea personally but the exosomes may lower systemic inflammation for some). It's expensive but not in the same magnitude as most stem cell treatments.

For my own recent noxacusis (which started to improve on Prednisone but is now back to baseline), I just ordered some Ambroxal because it apparently helps fibromyalgia pain by blocking some pain sodium channels so I'm going to give it a whirl (as an oral although it reportedly works even better as a compounded topical). It may even be OTC in Denmark.

The process with Pegasos takes months and I think now is the time to try anything you haven't yet.

But Ebselen is not available (from what I can tell through a google search).

I also googled Ambroxal and it is not available in my country. The only place I found it was on a German online pharmacy site. Says it is for dry cough. Is that it? I don't see how something for dry cough could help pain.

 

[FGG]

But Ebselen is not available (from what I can tell through a google search).

I also googled Ambroxal and it is not available in my country. The only place I found it was on a German online pharmacy site. Says it is for dry cough. Is that it? I don't see how something for dry cough could help pain.

It works in cough and sore throat because it numbs pain receptors (Nav1.8, similar to the Nav1.7 receptors studied to block all pain):

Topical ambroxol for the treatment of neuropathic pain

Topical Ambroxol 20% for the Treatment of Classical Trigeminal Neuralgia – A New Option? Initial Clinical Case Observations

Ebselen is only available if you have it made by a lab. People are starting to do this in the Sound Pharmaceuticals thread.

 

[RichieTheKid]

I hear ya, I do, but I simply don't see what options I have left. I can't see any. The only ones I can come up with are vitrectomy for the eye floaters and no doctor will perform that on me, or maybe stem cells for tinnitus and hyperacusis, but I can't spend that kind of money on a treatment, because I need that money in order to have the VAD available for me. That thing sadly doesn't come cheap.

I just don't know what else there is to try. I've tried several supplements, medication, therapy, self hypnosis, deep breathing, yoga, distraction and it just doesn't make me capable of handling the pain or change my decision of wanting this to end.

England has laser floater removal and so does the US. It's a verified procedure.

Here from Mayo Clinic:

"Using a laser to disrupt the floaters. An ophthalmologist aims a special laser at the floaters in the vitreous, which may break them up and make them less noticeable. Some people who have this treatment report improved vision; others notice little or no difference. Risks of laser therapy include damage to your retina if the laser is aimed incorrectly. Laser surgery to treat floaters is used infrequently."​

No vitrectomy needed. I plan to look into this myself.

 

[TheDanishGirl]

England has laser floater removal and so does the US. It's a verified procedure.

Here from Mayo Clinic:

"Using a laser to disrupt the floaters. An ophthalmologist aims a special laser at the floaters in the vitreous, which may break them up and make them less noticeable. Some people who have this treatment report improved vision; others notice little or no difference. Risks of laser therapy include damage to your retina if the laser is aimed incorrectly. Laser surgery to treat floaters is used infrequently."​

No vitrectomy needed. I plan to look into this myself.

Laser is a no-go for floaters in young people because they are too tiny and too close to the retina. My eye doctor told me it probably wouldn't help me, plus I have read a lot about it online and people have told me that I will not have a good result from it.

Here is an article where a doctor speaks about this procedure:

https://www.thefloaterdoctor.com/younger-patient

There are more articles on the subject. This was one of the first that I grabbed from a Google search.