Voluntary Assisted Dying / Euthanasia for Tinnitus Patients (Pegasos Swiss Association, Switzerland)

I read it and cried.

 

What you describe here is the nightmare scenario. If this happened to me, I wouldn’t cope with a 300% increase, I'm not strong enough.

So sorry, my friend.

I hope it's a temporary spike.

 

I'm so sorry this happened to you. Tinnitus is a horrible thing and you're right, nobody understands what it can do a person except those who have gone through it. I hope you reconsider, but I do understand. I wish you well.

 

Thanks for your reply. Strangely I have a feeling of resignation and acceptance this time. The fight has gone out of me. I am giving it until June and then going to Switzerland. That is an acceptable amount of time to see if it resolves. It’ll be a hell of a party before I go. I won’t have to worry about volume levels on the music. It is what it is. Don’t forget we can only do what we can do. A lot of this stuff is out of our hands.

A big clap to @Markku who is one amazing person to persevere and look after you all. A truly inspiring man. X

 

I have literally been crying my way through this thread. So many truly amazing people being put through meaningless suffering. I am considering a "peaceful exit" myself if things do not improve. While life still has its moments thanks to being with the love of my life, it is by no means a good life anymore. I need to know there is a way out.

I even sometimes hope that I will get one of those speedy terminal cancers to make the decision for me. This torture is beyond hellish. Cancer at least has an expiration date (sorry if this offends someone). I feel for all of us and cry every day and almost all the time now. I struggle to believe that this is how my life ended.

 

None of us chose to be born into this world. We definitely did not choose to suffer from tinnitus. It should be everyone's right to choose their own death with dignity if you have tried everything but life is still a great chronic pain. Unfortunately, it is the case that decision-makers, who have not had to endure severe chronic torture, don't understand how it feels. Tinnitus is just a little rustling sound you hear when you're going to sleep... right.

Wish I was a pet instead. Most pets do not need to suffer, they will die with dignity if they get very ill. In most countries, people with severe chronic conditions (which cannot be alleviated or cured and they do not die from) are tormented until they die naturally or actively choose to take their own lives in loneliness and in pain.

If I can't stand my life anymore, I want to have a choice to die with dignity.

 

Tinnitus can be hell on earth. I have been in this nightmare for six months. I contacted Dignitas.

I want to live, but without tinnitus. Which unfortunately is not possible. Doctors, scientists, etc., haven't made any progress against tinnitus. Nothing.

 

Assisted dying laws are being looked at in my country. I just have to hold out until my mum dies because I can't destroy her.

 

I'm in the same boat. I'm just trying to fight this to be here until my mother goes.

 

I always planned to bow out when my mother died anyway, as I couldn't live without her, but we were going to make memories first. She's retiring this year, but those memories will not be made. In some ways, it's like I'm dead already with how little I even see her. I can barely leave my room.

 

Pegasos won‘t help.

 

How do you know that?

 

Yes, I asked and paid. My money came back, but there was no answer as to why.

However, the process at Dignitas is working.

 

Perhaps because, according to the information in your profile, you have "only" been suffering from tinnitus for seven months. I must say that Pegasos not accepting you scares me a lot, as this last "option" calmed me in a way. I think Dignitas is a very long process.

 

Please give it time if you suffer from tinnitus caused by loud noise. 15 years ago, I was exposed to a deafening noise (about 45 minutes long), which caused my tinnitus, and it completely faded away in about 18 months. It was a 10 out of 10 with ear pain, ear fullness, and noise sensitivity, but after a few months, it (very) slowly started to fade. It went entirely away, but I always have to protect my ears from now on because the tinnitus can spike up if I'm in a loud environment for too long.

Noise-induced tinnitus usually fades in 1-2 years. Give it time.

 

I wholeheartedly agree. Let's be honest and realistic. There has been little to no progress with tinnitus assistance. Oh, there have been umpteen dozen studies, but nothing ever happens to help us. It's probably best to take things into our own hands. How could we do any worse?

I keep a tinnitus diary, which lists what I've discovered to help me. Different types of masking sounds (being outside really helps, and the sound of a waterfall works amazingly well), medications have made things worse, etc. I also watch what I eat and try to stay in good shape. When we get down or depressed, this is always the hardest thing to do, and it's always the thing that works well once we do it. Stress is something to be avoided. Staying busy with things I love to do and enjoy is very important, too. Having a quiet place to live (and, most importantly, sleep) is a primary requirement for me to live a more normal life. Then there's the pharmacology aspect; I'm trying different herbs to calm my nerves. It's a shame that weed amps up my tinnitus. I still occasionally smoke it, but it tends to make things worse in the short run.

All these things together help me more than just doing one thing and hoping something happens. Having a social life is mandatory. Finding people can be a trial sometimes, but if you find someone that you click with, it adds to your quality of life. Needless to say, spending too much time on the computer is a huge problem because it alienates us from the real world, and it's a solitary activity that can be antisocial if done too often.

 

I'm 19 months in, and mine hasn't faded. I now also have hyperacusis and noxacusis. I wish it would all fade away.

 

I'm 17 months in. My tinnitus has not faded. It has changed, and overall got worse (louder) despite taking precautions, like completely avoiding loud noise exposure, and not overprotecting or over-isolating; just living a pretty "normal" quiet life. My hyperacusis has perhaps improved a little bit, but is still stubborn. I've had temporary noxacusis a few times after what would be considered moderately loud noise exposure.

I have lost most hope.

 

I'm so sorry. Tinnitus is a horrible thing to live with, and it makes it even harder when your friends and family don't understand it. I know there are many causes of tinnitus, medical, medication, and even vitamin deficiency. Mine was caused by acoustic trauma, which does have a decent chance of resolving itself in time.

 

Same thing with me. I've had tinnitus for over 20 years, and it has become especially bad since February 2022. It just gets worse, like most people's. I've only had hyperacusis for about a year with no change, no noxacusis, although some short-term ear pain sometimes.

 

You are incredibly lucky. Your story gave me a lot of hope, but the hope is really waning at this point.

How sad it is. I just wonder how much of this is progressive ear degeneration vs. brain maladaptation.

I feel it is the former, given that the setbacks for me were after some noise exposures that would be completely ignorable for healthy ears. One was an hour of hearing aids playing crickets last fall. More recent was a short car ride that was loud due to speed, and the protection (custom supposedly 25 dB earplugs) was inadequate. The last exposure really ramped up my reactivity. For example, I cannot tolerate refrigerators anymore except on the few good days I have had since.

This condition is insane, and I think we stand no chance without some breakthrough regenerative medicine, which is unlikely to come in time before life is unlivable.

 

I'm starting to theorize that living quietly and protecting a lot primes you for worsening when you do experience loud sounds. I was relatively stable while living in LA, wearing weak hearing protection and going out and about nearly daily. Don't get me wrong, I had some setbacks here and there, but they were due to things like forgetting to put hearing protection on while using a loud vacuum, drinking too much, and contracting COVID-19.

Now, living quietly in the Midwest, wearing strong hearing protection, and only going out once in a while to the store, I've experienced increase after increase with my tinnitus, and my sound sensitivity is way worse.

 

This is interesting information, @kingsfan. As you have seen both sides of the coin, your theory cannot be ignored.

Going into hibernation is something that @Michael Leigh warns strongly against. I'm sure he'll chime in here.

What will you do now, @kingsfan? Are you going to reduce hearing protection and expose yourself more?

This is a good illustration of the 'no-win' situation we are all in.

 

I'm honestly unsure what to do going forward. I took about a week using lower-rated earplugs while driving and slowly increasing the volume while watching TV. I even listened to some music during the week. I felt like my tinnitus was doing a little better then. I wanted to build up to not wearing earplugs while driving or in stores but using them outside in parking lots and when entering unfamiliar spaces.

However, I have experienced some loud noises in the store recently (while still wearing my earplugs, thankfully), which has me second-guessing this strategy.

 

Pegasos helps. Important: only declare tinnitus, nothing else.

My problem is that I can’t stand noises, such as rain or thunder, for masking. They also make me crazy. People who loved and lived in silence are lost and dead sooner or later.

 

You might need the help of an audiologist specializing in tinnitus and hyperacusis management, @kingsfan. Self-help can be useful, but going into hibernation or wearing strong hearing protection too often can worsen your symptoms if you aren't careful.

In addition, some people can develop phonophobia and misophonia due to staying at home and overusing hearing protection. I have explained this in my thread: The Complexities of Tinnitus and Hyperacusis. Some people do not understand the correct way to use sound enrichment and often misconstrue what I say about how it should be applied.

When a person is acutely sensitive to sound or has painful hyperacusis, I recommend they should be under the care of an audiologist specializing in tinnitus and hyperacusis management. The therapist usually recommends wearing white noise generators. In addition to this, counseling is advised. The counseling helps to remove and demystify the negative thinking that is often attached to tinnitus and hyperacusis, particularly when both conditions are brought on by exposure to loud noise. This treatment takes time, so it's not a quick fix.

Anyone who wants to try self-help should not use white noise generators unless they are under the care of an audiologist specializing in tinnitus and hyperacusis management. They should try to avoid quiet rooms and surroundings, especially at night, by using low-level sound enrichment using a sound machine by the bedside. More about this is explained in my thread: Hyperacusis, As I See It.

I have corresponded with many people who have chosen to stay at home and restrict their going outside in the belief that this will heal their oversensitivity to sound. Unfortunately, this practice often makes their oversensitivity sound worse the longer it is continued. The ear and auditory system need to be desensitized. One of the best ways to do this is to follow some of the self-help mentioned in my threads above or to be under the care of an audiologist.

Michael

 

Hello,

You're going through the process with Dignitas right now? For tinnitus?