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

Good thing I already live in Switzerland. In the case it becomes necessary, there's Pegasos or a bazillion mountains with a couple hundred meters free fall...

 

About that issue. This is what their FAQ says:

 

My mom suffered from tinnitus and opted for a VAD with Pegasos. It was the hardest thing I've ever done to help her see this decision through, but it was so much less traumatic than suicide (exit bag, gunshot etc). I wanted to write and share my experience. Pegasos was wonderfully compassionate and professional. Obviously I hope no one is ever forced to choose this option, but seeing my mom lose everything to this disease... Well I'm glad she had this option available. It is expensive, but the folks at Pegasos aren't in it for the money. The hoops they had to jump through to help my mom were time consuming and you're paying for an anesthesiologist to supervise. Plus, Pegasos is fighting in court all the time to preserve the right to die in Switzerland. They do it because they believe in what they're doing. I'm still heartbroken, but I'm grateful that my mom got the death she wanted. If you have questions about Pegasos, I suggest reaching out to them via email, they're very easy to talk to and we had no issue with language (they speak very good English).

 

Considering Pegasos as my backup and it's heartbreaking. Where's the treatment, where's the cure. I want to live.

 

Sorry about your mom

May I ask how old she was and if she suffered from anything else than tinnitus?

 

@Hope123, I am terribly sorry if this is what happened to your Mum.

And I am thankful for that opportunity granted in Switzerland. Nevertheless I cannot avoid being suspicious about the background. I’m afraid it could reflect personal interest.

It sounds a bit like an advertisement spot.

If I am wrong, please excuse me. If not, keep in mind what such an „advertising“ could provoke.

Cathrina

 

@TheDanishGirl, my mom had just turned 70. Her other health conditions were manageable and not related to her tinnitus, which was brought on by a sudden viral attack that caused her to lose her hearing. She went from an active, vibrant lifestyle to a tortured shut-in almost overnight.

@Cathrine, I have no affiliation with the organization other than supporting my mom through this most heartbreaking decision. My only goal was to respond to those in this thread who questioned whether Pegasos and similar associations were real or a scam and whether tinnitus qualified one to use their services by providing some info about my mom's experience.

 

I had no knowledge of Pegasos until now. If things worsen for me, I'll contact them.

Maybe I can live with tinnitus but the distortions I have, I can't ever get used to them.

I used to breathe music and I've lost everything. This is not living.

 

Anybody who have gone down the route to try and get approved for VAD through Pegasos? I am seriously considering it, as a back up plan, because if things keep getting worse in the speed they have so far, then NO WAY am I going to last many more years.

I don't even know if they will approve it for tinnitus and hyperacusis (and chronic mental illness), but I think I read that they DO approve for other things then terminal illness.

 

Is there anybody here who applied for VAD at Pegasos and care to share the experience?

I have just subscribed to Pegasos.

Should I be worried whether or not I will be accepted? Aside from severe tinnitus, I have unexplained severe hearing problems - can't understand speech almost completely, neuropathic pain in arms and legs.

As I don't want and can't allow myself to lose €1,500 in case I'm rejected.

Should the medical documents have to be in English? Mine are in a different language than those they mentioned, so should they be translated into English?

Thanks in advance.

 

They might not be hanging around anymore...

Pegasos have already told people here that tinnitus is good enough reason for VAD.

You should email them and ask if they will refund your subscription fee if they reject you for whatever reason.

Same as above. Email them. They are very quick to answer.

 

@roy1159 How did the application process go?

 

Man, if you have €10,000, first go to Mexico or Thailand and get some stem cell infusions, don't waste it into overpriced Pentobarbital.

If stem cells don't work, only then you can consider paying the Pegasos fee with some loan you get at your local bank (since you're not going to have to pay it back anyways).

But first always try stem cells, it's forbidden to quit before giving them a go.

 

@ajc, have you personally emailed them about tinnitus? Do you or anyone have a copy of an email response about what they said about tinnitus being a valid condition?

 

I asked them, about a year back, and had a pretty quick answer. It was a simple answer in which they indicate that tinnitus is a valid condition.

You can still contact them and ask, I guess nothing has changed since.

Age may be an important factor though.

I still have the email response but it's in French and "filled" with personnal informations I'd prefer not to share.

 

@Tatsopa, thank you for your response. I’m having a very hard time with this tinnitus.

Do you know if they need a medical report for the application? It doesn’t say anything about medical papers on the website when you apply.

 

Sorry but I don't know a thing about the medical papers to provide. I only asked if tinnitus was a "valid" ailment to apply for VAD.

They answered it was, then asked to proceed with the full application "as described on their website" (literally, from the email they sent me).

I've read somewhere that, in order to fulfill the requirements, one has to be evaluated by their own psychiatric team.

 

Hi there. My life has been completely derailed by tinnitus and I have very little quality of life left. Each day now is a struggle and a torture. The only upside, is I’ve gotten to have my good times. I was happy before and I got to live life even if it wasn’t perfect or the very best, so I’d like to believe that that has to count for something. I understand it might be difficult, but would you be willing to perhaps share more detail about you and your mother’s experience with Pegasos? I’d really like to learn not just what they do - but what the experience is like for real people. Pegasos is now the option I’m seriously considering.

 

Hi, you are in the so early stage of the tinnitus, please, give yourself at least a 2 years time, and if you do not feel better after that time, then you can consider the suicide. I know that it is easier said, than done, but you must give yourself at least that amount of time.

 

Get a grip. Euthanasia for tinnitus is absolutely ridiculous.

 

How intrusive is your tinnitus?

 

Thanks for your advice. I don’t know how long I can bear this, but I’m trying to hang in there for right now and barely keeping it together. If nothing changes, I won’t be able to keep going. It’s not just the horrendous bilateral tinnitus though that’s the primary cause of my suffering. I developed tinnitus from my infection with COVID-19 and it did a lot more to me neurologically than just giving me tinnitus. It entirely altered my sleep too so that my brain never seems to ‘shut down’ properly. It’s like my brain and senses are falling apart. Maybe it’s all from the improper rest, but it’s like my brain circuitry is starting to finally break down. And it feels horrible. It feels just like it sounds. I was young and healthy, happy, and carefree before COVID-19. Never had health issues or difficulty with health before. I could never have predicted it would have turned out like this for me.

 

Extremely intrusive. You won't believe me when I say it's a high picked screech the same volume as a TV right next to my ear. I can't mask it.

 

Your comment is ridiculous.

 

Even suggesting someone could end their life over tinnitus is not only irresponsible but it's also pathetic. People read these melodramatic posts, who are looking for serious help and advice. Not silly posts about the idea of ending their life. It's like chopping your foot off because you stumped your toe.

 

Why would you come on a thread like this, knowing how people would be feeling, and be so bloody insensitive and insulting?

 

You seem to be managing quite well. I personally can't comprehend how one can write such a statement.

You do realize that there's no limit to how bad these conditions can get. I agree, that having stable tinnitus can be dealt with to a very far extent by adopting a mental fortitude and stoic acceptance, but some of us gets worse tinnitus from every little thing. A person I know gets permanently worse tinnitus from a whisper, and likewise permanently worse noxacusis pain; do you still consider it "pathetic" for such a person to want to end their torment? This may be controversial, but I'll say this; those who do get terminal illnesses, how awful and sad it may be, still get the luxury of relief, while some with tinnitus simply have perpetually increasing torment.

I assume you haven't considered such possibilities, or experienced such things, or otherwise you wouldn't have posted that.

 

You obviously do not know how debilitating tinnitus can be to a person's mental and emotional wellbeing, otherwise you would never write such a statement. When tinnitus is severe and this is sustained, it can seriously affect a person's mental health to the point they want to end their life. I do not condone VAD for tinnitus or any other medical condition. However, I do understand when a person has reached the end of their tether and they cannot bear the distress, of the cacophony of noise in their head and ears and all they want is peace. The most recognized treatments for tinnitus at the moment are: counselling, sound therapy, medication and relaxation techniques. One or a combinations of these treatments can be helpful but there is no guarantee.

You have to have been there to understand, the reasons someone wants to pursue their early demise.

Michael

 

I am going to be honest, your dismissal of other people's suffering has no place here, particularly on THIS thread. Tinnitus is incredibly subjective in the manner in which people are able to cope. If you disagree, perhaps consider doing so with some compassion.

 

I bet that severe (loudness and character of sound) tinnitus, particularly when the onset is sudden, invokes suicidal thoughts (at least at the level of mere thoughts) in most people who get it. Some people are lucky to switch the gears faster and adapt, but many of us need months if not years to get over the suicidality. I had never been depressed or suicidal before tinnitus, yet it took me about 7 months to stop being suicidal.

When tinnitus is combined with stuff like reactivity, ear pain, hyperacusis, that takes it all to another level. I wouldn't even compare that "package" to only tinnitus, even the severe one. From what I read in the tinnitus suicide cases reported in the media, most of them were severe tinnitus and severe hyperacusis. However, many of them were unfortunately done in the early stages and most likely fueled by our "beloved" "go-live-with-it" ENTs. The amount of humiliation and disrespect that I got from a number of ENTs in my early crisis days definitely pushed me further towards the edge. Luckily I survived that period by being in touch with fellow sufferers and reading their accounts.

I would definitely not use the word "pathetic", but something like "sad", but sad in the meaning of "horrible that something like this exists that can invoke suicidal behaviour in people".

Having said that, after my own experience, I would definitely discourage anyone to act on these thoughts, as there's always a chance of achieving some compromise with the situation, it does take years though and having the distant thought of a "way out option" actually can help people calm down and not do anything impulsive on their own.