Suicidal

[just1morething]

She had a gym injury, excessive straining while lifting, and she started having head pressure/headache imediately and tinnitus a few days later, so it is not clear if it started because of the diuretic she was put on or because of the actual injury.

But: After a month she felt better and she went back to the gym again.

And: The head pressure/headache came back and tinnitus worsened. In my opinion there is too much coincidence. I am against "push through it"-type of "advice" when people (not you, I'm just using your post here) do not understand the link between excessive straining and inner ear injury.

Again, diuretic pills are not the only diuretic. There are various natural herbal diuretics. There are also ways to avoid all the movements and potentially harmful positions for some time to try to let the injury heal naturally, especially if the symptoms involve head pressure and dizziness after a trauma.

Sometimes all it takes is avoiding everything that increases intracranial pressure for a few weeks or months to improve, especially for people whose injuries occured due to explosive pressure.

It was just a thought. I'm on a couple BP medications. I know how despondent people get with loud noise in their head. Better to let the Dr. know if you are dropping a BP med. You never want to risk having a stroke.

 

[Chinmoku]

I'm going through hell today, Easter day, like every day. A thought to all who are suffering greatly today, holidays can be very hard for us.

 

[livewire77]

Roy, according to the study in the link, you can have hearing loss even with perfect audiogram.

Study shows hearing tests miss common form of hearing loss

 

[RichieTheKid]

This condition also has taken everything from me, I fully understand why you feel this way. 2019 was my best year thus far and I was excited to start the life I planned. I was only 20 back then. We are just unlucky I guess. I got this from working part time in a café (which was a bit noisy of course).

I'm as well ready to go, but I think you should at least try to hang on longer using whatever means, even benzos regularly, if needed - it's only been 3 months, it's very early. I say this even though I was told the same and in the end my situation got 100 times worse (while doing everything right), I'm barely existing anymore and 15 months in I know getting better is impossible - but the statistics is on your side, only tiny bit of the sufferers end up chronically in the severe end and find themselves battling life and death. It's really depressing to feel like another person or even worse- feeling like you are only an entity that just exists - as normal life is far out of reach, I feel this all the time.

You are not alone Roy. But your existence is meaningful. You are stronger than you think you are.

 

[Marin]

Marin, what dosing are you on? I have read some studies that say 50 mg a day and others that say 1-4.5 mg a day.

I'm still waiting for the compounding pharmacy to finish making it, UGH, but I was prescribed 5.00 mg a day. That tells me that the doctor who prescribed it doesn't know much about it since everything I've read says to start at a low dose (0.5 mg or 1.0 mg) and slowly titrate up until you find your "sweet spot". Some people stop as low as 1mg but I see a lot of people saying 4.5mg is their dosage.

When I do finally get my LDN, I plan on diluting it in distilled water so I can start on a much lower dose than 5 mg. Since I have such bad reactions to everything I'll probably start with 0.25 mg or less and then see how it goes from there.

The 50 mg a day wouldn't be considered "low dose" Naltrexone. That higher dosage is used to treat opiate addicts and alcoholics. It's the much lower dose that provides the immune system regulation and pain relieving effects. Interesting stuff!

 

[DebInAustralia]

I got maybe two years in me. Maybe. For me, it's either some improvement via Ebselen or game over.

Would you try LDN?

 

[dan]

This condition also has taken everything from me, I fully understand why you feel this way. 2019 was my best year thus far and I was excited to start the life I planned. I was only 20 back then. We are just unlucky I guess. I got this from working part time in a café (which was a bit noisy of course).

I'm as well ready to go, but I think you should at least try to hang on longer using whatever means, even benzos regularly, if needed - it's only been 3 months, it's very early. I say this even though I was told the same and in the end my situation got 100 times worse (while doing everything right), I'm barely existing anymore and 15 months in I know getting better is impossible - but the statistics is on your side, only tiny bit of the sufferers end up chronically in the severe end and find themselves battling life and death. It's really depressing to feel like another person or even worse- feeling like you are only an entity that just exists - as normal life is far out of reach, I feel this all the time.

What's your tinnitus like? How many sounds? How loud?

 

[AliasM]

I'm still waiting for the compounding pharmacy to finish making it, UGH, but I was prescribed 5.00 mg a day. That tells me that the doctor who prescribed it doesn't know much about it since everything I've read says to start at a low dose (0.5 mg or 1.0 mg) and slowly titrate up until you find your "sweet spot". Some people stop as low as 1mg but I see a lot of people saying 4.5mg is their dosage.

When I do finally get my LDN, I plan on diluting it in distilled water so I can start on a much lower dose than 5 mg. Since I have such bad reactions to everything I'll probably start with 0.25 mg or less and then see how it goes from there.

The 50 mg a day wouldn't be considered "low dose" Naltrexone. That higher dosage is used to treat opiate addicts and alcoholics. It's the much lower dose that provides the immune system regulation and pain relieving effects. Interesting stuff!

I was reading this article. From around page 8 it talks about Naltrexone for tinnitus. They recommend 50 mg per day.

https://patentimages.storage.googleapis.com/60/0f/dc/0d26aff3984727/WO2011145062A1.pdf

Like I said though, I have read other reports of 1-4.5 mg. Big difference.

 

[dan]

I'm going through hell today, Easter day, like every day. A thought to all who are suffering greatly today, holidays can be very hard for us.

Can you be in a quiet room?

 

[Marin]

I was reading this article. From around page 8 it talks about Naltrexone for tinnitus. They recommend 50 mg per day.

https://patentimages.storage.googleapis.com/60/0f/dc/0d26aff3984727/WO2011145062A1.pdf

Like I said though, I have read other reports of 1-4.5 mg. Big difference.

Whoa, thanks for sharing! That is news to me. If that's the case it's going to take me a looooooooong time to work up to 50 mg! I saw that at least two of the participants had hyperacusis. I wish they had said if that had improved at all.

 

[Orions Pain]

It's so difficult to imagine any sort of future life with noxacusis for obvious reasons. Having a really difficult time lately, more than usual. I hate this so much.

 

[Chinmoku]

Can you be in a quiet room?

Only with masking and it only helps to take the edge off a little but it's still torture. In the long run I think masking is making things worse but without it the torture is unbearable.

 

[dan]

Only with masking and it only helps to take the edge off a little but it's still torture. In the long run I think masking is making things worse but without it the torture is unbearable.

I see. What kind of masking do you use ? Thanks for sharing.

 

[roy1159]

What's your tinnitus like? How many sounds? How loud?

Catastrophic. Probably 10 sounds of oscillating electrical buzzes and static tones as well. It's reactive and unmaskable, only the shower head is able to almost fully mask it. I also have unexplained hearing problems, I basically have the hearing capabilities of elderly people with normal audiogram and normal nerve functioning, it can't be solely explained by hidden hearing loss. I'm 15 months into this and it only got worse.

 

[roy1159]

Every day that passes I'm coming to the realization that my suicide is inevitable, I don't know how I have managed to survive the last months. It all feel like a blur. In hindsight I should have ended it when I had the chance, if I knew how much worse things could get after that I wouldn't have hesitated so much to end it. Everyone has one chance at life and I already blew it big time at 20, although I would like to believe that it's not my fault largely.

It's supposed to be my best decade and instead iIm debillitated by ear issues, homebound and glued to this thread and forum. I can't do anything to even let my mind wander and turn to escapism.

In my worst nightmare I couldn't have imagined having to end my life because of hearing problems and tinnitus (I have neuropathic pain as well to top it off), it goes to show how the general population is unaware of these debillitating issues untill they have them, and how people dismiss the severity and the devastation these issues can land on anyone (assuming they are severe and don't allow you to return to normal life).

People have hope because they know that their problems are temporary, I have clinged to hope even though things got always worse even when I did everything right and protected myself. Treatments are a decade away it seems.

There is only so much suffering and devastation that one can suffer, and I can't take it no more. I have lived 20 normal years and for that I'm thankful, but this is too much. I already gave up on life months ago, but now I'm tired of this tortuous existance, nobody deserves to be tortured like this.

The most frustrating thing is that I have tried everything to get better, believe me I did (short of the jaw surgery which I need to have). Things aren't going to get magically better, my brain won't suddenly be able to comprehend speech and my tinnitus won't diminsh suddenly. I have not even one reason to continue to be tortured like this, I will never even be able to live 10% of the normal life I used to live.

I'm tired of being in this state, yet I can't change it. Nothing can change it sadly. I hate this damn survival instinct, and I hope to overcome it soon enough.

 

[DreiT]

Only with masking and it only helps to take the edge off a little but it's still torture. In the long run I think masking is making things worse but without it the torture is unbearable.

You think so? I'm playing nature sounds like crickets but not loud. Do you think it can make tinnitus worse? I'm scared. My tinnitus is pretty severe sometimes. I don't want to make it worse

 

[Chinmoku]

I see. What kind of masking do you use ? Thanks for sharing.

There is very little that works even partially. Some very special cricket sounds, Dave Case's Tinnitus Mix would partly mask but only at high volume. The tinnitus frequency and volume are simply too high. Rain sounds, waterfalls etc are totally useless.

The bad thing is that it is progressively getting worse. How do you cope?

 

[Chinmoku]

You think so? I'm playing nature sounds like crickets but not loud. Do you think it can make tinnitus worse? I'm scared. My tinnitus is pretty severe sometimes. I don't want to make it worse

I didn't want to scare you or anyone. It's just me. Others can mask and it does not make their tinnitus worse. If masking works for you, don't worry, just keep the volume low

 

[Backpacker]

I don't know how I ended up with such a severe case

What do you mean you don't know? You said you had no prior history of headache/ head pressure. You said it all started due to excessive straining and you "felt the pressure in your head" due to excessive straining. You avoided straining for a month or two and got better. You went to the gym and the headache returned and your symptoms were aggravated every time you went back to the gym. And you said all your scans were fine.

Why do you not want to try the full bed rest treatment for perilymph fistula when it could not harm you in any way even if you didn't have a PLF?

 

[Zugzug]

What a shithole of a life. Can't tolerate any noise whatsoever, but in an effort to get a diagnosis and maybe stand a chance of eventually getting disability with a lawyer, I am leaving my house on Wednesday for the first time in a year for a 7 hour round trip car ride.

I will be double protected, two sound blankets, multiple mass-loaded vinyl pieces for the floor, rest stops planned out. The biopsy will take about 30 minutes. I'm taking benzos, but I'm so fucking scared of the setback I'm going to have. Last year at this time, just playing light music for an hour or two completely ruined me, to this day. My doctor says he will not prescribe steroids, even if I have a setback from this trip. He actually mocked me for asking about benzos and said that I was the first to ask for them, like I was some sort of fucking coward. He said it was like "going to the dentist." Total fucking privilege -- no grasp of this disability at all.

I guarantee it. I will have a setback. And everyone will say it's impossible because of NoRmAl AuDiOgRaMs. It's all a fucking joke.

I'm glad I was able to contribute on here, as I will probably be in a deeper state of torture. As my audiologist would say, maybe I'm going to speak this into existence by thinking about it LOL. You know, right? I'm a fucking mathematician, but I just said that my tolerance for music was exactly the nice round number of 40 dB. According to him, I thought about 41 dB and freaked out and that's why my hyperacusis went nuts. Yeah, I'm that fucking stupid. Ph.D. in math, but I think my tolerance is 40 dB on the nose.

This condition is a joke. I went from a well-respected, tenacious, ambitious, accomplished adult to this lousy piece of biological shit. Fuck it all.

 

[Toby1972]

Well then, I am pretty suicidal. First anniversary of my 9/10 tinnitus after it was a 3/10 for 10 years and I was still the most relaxed person on this planet.

But now my energy is over. Even in spite of the love of my life. If they are too strong, you are too weak. I am not weak. But I am broken after months of inevitable, hopeless fighting.

Life is not fair.

 

[roy1159]

Oh god, why is it so hard to actually kill yourself? Every time I chicken out even though I'm being tortured every minute and second of the day, debilitated at 21 with no end in sight and no hope of ever living like a normal person.

At this point I really don't want to live or be alive anymore, unless I can return to normal life. But the thing is I won't ever return to living normal life, nothing has changed so far. My severe tinnitus won't diminish, and my hearing problems which I have now come to the conclusion are the more debilitating of the two won't magically get better - they don't even have an explanation. Hearing capabilities of a 70-year-old person with normal audiogram, yeah there might be some hidden damage and EHF damage but it can't explain the extent of the hearing problems.

I'm not wishing for anything anymore, I just want for this nightmare to end one way or another.

 

[ajc]

@TheDanishGirl, did Pegasos respond? What did they say?

 

[TheDanishGirl]

@TheDanishGirl, did Pegasos respond? What did they say?

I haven't gone further with it. I still wish VAD but I can't afford it and I have to accept that. It's a pipe dream for me to somehow obtain €10,000 Euros.

With the speed I am deteriorating mentally, I don't have time to wait on the process anyway. I'll probably do myself in before. Today I came close. I'm done. I've started self-harming cause only then, can I detach just a bit from this torturous state.

 

[grate_biff]

It's so difficult to imagine any sort of future life with noxacusis for obvious reasons. Having a really difficult time lately, more than usual. I hate this so much.

I agree. I'm in benzo withdrawal and I wonder every day why I fight it, when I most probably will be left with the terrible noxacusis anyway. Benzos used to help, but not any more.

I can say that a combination of Baclofen, Oxycontin and Mirtazapine helps somewhat, but it is hardly sustainable. I'm going to try Ambroxol soon as it affects the NaV1,8 and that's pretty close to the NaV1,7 and has similar effect on nociceptive cells.

From WIKI:
Nav1.7, as well as Nav1.3, Nav1.8, and Nav1.9, are the specific channels that have been implicated in pain signaling.

I feel your pain, @Orions Pain. Noxacusis is one of the worst things that can happen to a human, but with no recognition from the health society. I have to beg on my knees to my doctor to get Oxycontin.

 

[Chinmoku]

I haven't gone further with it. I still wish VAD but I can't afford it and I have to accept that. It's a pipe dream for me to somehow obtain €10,000 Euros.

With the speed I am deteriorating mentally, I don't have time to wait on the process anyway. I'll probably do myself in before. Today I came close. I'm done. I've started self-harming cause only then, can I detach just a bit from this torturous state.

I'm really sorry it got so bad. I hate this condition and all it has done to good people like you, @roy1159 and everyone else in this thread. I'm also trying to find strength and motivation to keep going but every day is worse and I'm only human.

I have not looked into it but my impression is that Pegasus and other Swiss organisations require extensive medical documentation and history. Often your home country doctors may refuse to write such letters, so you probably need to use Swiss doctors recommended by said institutions and this may add to the cost. This might make the process harder and possibly longer for young people or people with limited financial means, or people who are suffering too intensely and need a rapid exit.

I wish I could help. Research is so slow.

 

[DaveFromChicago]

I wonder if the News Media would report on and compel others (especially in the Medical World) to recognize the dire seriousness of this condition if there appeared numerous GoFundMe's for financing final visits to end-of-life organizations such as Pegasos.

I have regarded the COVID-19 shut-down as a sort of stay of execution; so much was moratoriumed that I was exempted from having to endure the absolutely hated exacerbation of tinnitus from various "normal" activities (which my wife will soon be expecting me to undertake once again).

We are having a very warm spring and most everyone in the vicinity has received his/her second vaccination. My "grace period" will soon end. I feel like I have been on death row and my appeals process has run out.

What will I really do when I confront myself about the point of merely existing because this condition is so thoroughly incapacitating?

 

[Ed209]

I haven't gone further with it. I still wish VAD but I can't afford it and I have to accept that. It's a pipe dream for me to somehow obtain €10,000 Euros.

With the speed I am deteriorating mentally, I don't have time to wait on the process anyway. I'll probably do myself in before. Today I came close. I'm done. I've started self-harming cause only then, can I detach just a bit from this torturous state.

I really wish I could take your pain away, Danish Girl, as reading stuff like this makes me feel terrible that more can't be done. We need a huge injection of cash to go towards tinnitus/hyperacusis research to help speed the process along.

We have no luck as a community. Drug trial results are a constant disappointment, and when we finally have an opportunity to get the UK government's attention, via a petition regarding funding, the coronavirus comes along and fucks it all up. Perfect timing as usual. Something always has to go wrong.

All I can say is that the world is much better with you in it.

 

[grate_biff]

I have not looked into it but my impression is that Pegasus and other Swiss organisations require extensive medical documentation and history.

You don't have to involve your doctor at all. All you need is someone that can verify your identity.

I am a Pegasos benefactor and have filled out all the forms, but I have not sent it or paid the initial $5.000 (yet).

Trust me, if you wish to die and have the money, Pegasos will help you no questions asked.

 

[Orions Pain]

I agree. I'm in benzo withdrawal and I wonder every day why I fight it, when I most probably will be left with the terrible noxacusis anyway. Benzos used to help, but not any more.

I can say that a combination of Baclofen, Oxycontin and Mirtazapine helps somewhat, but it is hardly sustainable. I'm going to try Ambroxol soon as it affects the NaV1,8 and that's pretty close to the NaV1,7 and has similar effect on nociceptive cells.

From WIKI:
Nav1.7, as well as Nav1.3, Nav1.8, and Nav1.9, are the specific channels that have been implicated in pain signaling.

I feel your pain, @Orions Pain. Noxacusis is one of the worst things that can happen to a human, but with no recognition from the health society. I have to beg on my knees to my doctor to get Oxycontin.

I really hope Ambroxol helps you and gives a bit of relief. This condition is brutal and it's hard not to feel hopeless especially not having doctors on our side.