VAD Approved (Date Not Fixed Yet) — Lost Any Hope After Almost 20 Years of Suffering with Tinnitus

Not the most encouraging or supportive post, but honest, sincere and as real as my life over the last 20 years.

I developed tinnitus and hyperacusis back in 2003 due to constant loud noise exposure. It was hard to cope with it the first years, I was completely hopeless, lost and desperate. Somehow things became much more tolerable and manageable two and a half years after my tinnitus onset. I became way too complacent back then and thought the tinnitus wouldn´t come back, but it did in 2010, louder than before and really intrusive. I tried every single thing in order to reduce or alleviate its intrusiveness but without success. Unable to work, to study, to relax, to rest, unable to enjoy life. Out of desperation dark thoughts went through my mind on several occasions but the survival instinct always prevailed.

However, after the COVID-19 vaccine, my tinnitus became literally unbearable and impossible to cope with.

I applied for VAD at the end of 2021. When I got the approval, I decided not to fix a date in order to find any hope. So far, I haven´t found it, I am lost and on the verge of being defeated by this awful condition.

Had I known the existence of Tinnitus Talk before, I would have obtained vital and important information regarding tinnitus. I arrived late. I still have a glimpse of hope but not quite sure how things are going to be in the upcoming weeks / months.

I apologise for any inconvenience that this post might cause for whatever reason, but I am reflecting my reality and trying to share my thoughts. I never ever imagined I would end up applying for VAD due to tinnitus.

 

What is VAD?

 

Voluntary Assisted Dying. Some countries have that option (like the Netherlands), and some clinics in Switzerland offers it (Dignitas, Pegasos).

 

What? How old are you? Do you have other health conditions?

 

I said a prayer for you.

I really hope you can find some relief without going this route.

You are here now and hopefully you can find some help through the numerous posts.

There are many things here people have tried that maybe you didn't know about the can help you get some relief.

I hope the best for you.

 

I personally find this post encouraging in a way, the prospect of a peaceful and painless dying to end this torturous tinnitus gave me comfort and helped me cope.

This condition is so horrible that I find myself returning to Tinnitus Talk daily reading other users' supportive messages and experiences just to help me cope.

I hope your spike from COVID-19 vaccine settles down and that this VAD is just a “red button” that provides you comfort and nothing more.

 

Have you considered low dose/high dose Naltrexone?

Abraham Shulman protocol?

 

I am so sorry to hear of your suffering. Can I ask who you applied VAD at? And what papers were required? Do you suffer from other health problems on top of tinnitus and hyperacusis?

I really hope you will be able to power through it for some (more) time and that will bring you some relief other than going through VAD.

When the worsening is from the COVID-19 vaccine, then maybe it could get better with time, or you could maybe find some treatment that can work to damper it. But I understand your pain.

 

Thanks for your kind words @TheDanishGirl. I have lost any hope regarding any improvement. I am completely lost. By having the VAD approved, I kind of have some sort of relief but it is still terrible resorting to such a way out when you are still young, healthy and keen to enjoy life. However, I am unable to overcome these conditions, can´t cope with the noise, can´t enjoy this life in particular. Impossible. I have decided not to assign a specific date yet but at any moment I will press the red button. I have no choice at the minute. I hope you are doing better, I have noticed you are also struggling badly with this torture. I hope you pull through.

Regarding where I applied for VAD, I can´t give details but you can imagine... There have been some criticism recently with some people who applied for VAD. The media have been ruthless and it has sparked huge controversy on this subject... Some legal issues along the way so I prefer to be discreet and cautious in that regard. Having said that, not difficult to figure out where tinnitus sufferers can apply for VAD with relative success.

I just submitted my medical records, including all the treatments I have tried over the last two decades. Obviously I haven´t told neither to my ENT nor to my GP my intentions about ending my life peacefully and with some sort of dignity. The procedure was simple and really fast.

Thank you so much indeed @Komabu and @WisconsinGuy. I really appreciate your sincere and kind words. I don´t know what to do as of yet. I still have the option but the suffering is so intense that I am not going to delay or postpone it indefinitely. To be honest, I am also a little bit scared about the whole thing... not easy to end your own life when you are in good shape, healthy and relatively young.

@CC_16, I am 46 years old. Hearing loss, severe tinnitus and hyperacusis. No other conditions.

 

Do you have a spouse? Kids? Do you work?
Is there anything that makes you happy? 46 is really young.

Do you have tinnitus in one or both ears?

 

Please see that @Johnny Karate has dramatically improved his severe tinnitus with 25 mg of Naltrexone.

 

I'm sorry to hear your tinnitus is forcing you to consider a step like this, @Bhop. But you know your body and mind best and know what you can or cannot endure and after more than two decades of worsening tinnitus I understand that you've reached your limits.

Whatever you decide in the end, I wish you all the best and lots of courage and strength!

Leila

 

@CC_16, no kids. Unable to work since 2015. These conditions literally took any happiness away from me. Hard to find some kind of happiness when tinnitus is loud and omnipresent.

@DebInAustralia, thanks for the advice. I have never tried it. What kind of medication is? I have read @Johnny Karate's story and it appears that it worked well for him. Not sure whether my doctor would prescribe it to me... but who knows...

@Leila, thank you so much for your reply. I have no idea what to do at the minute. Chances to get my tinnitus lower and less intrusive are minimal and I have no clue what to do in order to achieve so and after trying every single thing over the years (except Naltrexone).

 

The Low Dose Naltrexone Charity

My good friend Sam had a dramatic response to 1 mg LDN.

Others like @Johnny Karate have experienced improvement from higher doses.

Prof. Dirk de Ridder has published a paper on using Naltrexone. Try showing your doctor the paper.

Where are you located?

 

I believe COVID-19 vaccine and COVID-19 infection have an autoimmune effect and it's possible Naltrexone may work for that.

I just had second acoustic trauma caused by an ENT on Thursday, so I'm struggling with noise and trying to find what might help.

 

How to convince a doctor to prescribe Naltrexone off-label?

 

What did the ENT do?

 

Have you started LDN yet?

 

No. My ENT wasn't helpful. He just made it worse by saying he can't help further.

 

Thank you so much @DebInAustralia. I am right here waiting to be visited with my ENT. I'm going to make such proposal, let's see how it plays out. I am located in Europe btw.

 

Didn't work out. He didn't prescribe me Naltrexone. I'll keep trying though, I think prescription is needed but I'll see what can I do.

We, as tinnitus sufferers, are literally abandoned. In case I go ahead with VAD, which is a very realistic option at the minute, I won't hesitate to report my case to the media. We deserve to be treated with dignity and respect. People grimacing in pain and suffering these torturous conditions, some of them even commiting suicide, this is serious stuff and shouldn't be taken lightly.

 

Have you thought about deep brain stimulation? There is a clinical trial you may be able to get into:

Deep Brain Stimulation for Tinnitus

It has completely diminished the perception of tinnitus in some Parkinson's patients.

It is at least worth a shot, considering the other option on the table.

 

I had previously considered this option beforehand. In London, a neurosurgeon performs such surgery but it is extremely expensive (something like €90,000 / €100,000). I can't afford it. In addition to that, it is an invasive surgery and there is a reasonable uncertainty regarding its success. The clinical trial you mentioned above started in 2020 as far as I know... I have no idea when will start the next one but I'll keep an eye on it.

 

Try to hang on a little bit further.

You’re on disability in Europe?

Is there anything you could possibly think of that would give you enough quality/substance to your life so to postpone your decision?

I have a lender of last resort plan for myself. My tinnitus is pretty extreme, I’m a little bit younger but ravaged with all sorts of chronic diseases.

My plan would be moving somewhere quiet and spend most of my days walking on a beach.

Is that something you could see yourself doing?

LDN is not difficult to get. See a GP and try again.

 

I ordered hearing aids with a tinnitus program. They are called Widex. They bump the sound over the tinnitus and play chimes. They may help you.

There are clinical trials for tinnitus and hearing loss:
Otonomy - Pipeline

Naltrexone you need to see a doctor for. I think they prescribe it more often for drinking problems.

I also have seen reports of people's tinnitus from the COVID-19 vaccine starting to improve. Unsure if it causes a temporary immune response.

I think some of these treatments may be fast tracked because of the hearing issue connection with COVID-19.

I'm not a doctor. This is just personal opinion and bits of what I read around online.

Dr. Susan Shore device is potentially close to coming out soon...

 

What other chronic conditions do you have?

 

Crohn's, osteoporosis, scoliosis, joint pain.

 

@Exit, thank you for the advice... I'm hanging in there. No disability for tinnitus and hyperacusis sufferers in my country. My hearing loss is around a 40% in one ear, and 20% in the other one. I tried moving to a quieter place to live but couldn't get rid of the annoyance and suffering caused by them.

Thank you for the advice @Hottopic29. I hope you get good results with those hearing aids. I tried different hearing aids with masking but results weren't good. My high pitch tinnitus, particularly in my left ear, is extremely difficult to mask during the day. At night even worse. Anyway, I'll keep trying... I have no idea when I'll throw the towel.

 

I want you to know that I’m thinking about you @Bhop. I’ve thought about you everyday since I read your post. If you’re ever in New Jersey, USA, let me buy you dinner.

I pray you find some relief. I’m struggling with my own tinnitus currently. It’s maskable with loud music, but if I couldn’t mask it I’d be in the same boat, applying for VAD. No matter what you decide to do, know there are people thinking about you and hoping you get some peace.

Also, if you’re still interested, there is a study recruiting soon in France for deep brain stimulation. They cover all costs. They may even reimburse for travel, but I’m not sure.

Evaluation of Deep Brain Stimulation (DBS) of the Right Operculum 3 (OP3) in Permanent Non-pulsatile Disabling Tinnitus (TINNOP3-DBS) (TINNOP3-DBS)

All the best.

 

@RadioKid722, thank you so much for your kind, sincere and supportive words. I had previously pondered DBS surgery but the surgery in London was extremely expensive, definitely out of reach (roughly €90,000). I am going to have a look, not sure whether that study in particular has started yet. If it takes place in France, that would be great. By having VAD approved I got some sort of relief but man, we want to live but the constant noise in my head makes the whole thing unbearable and torturous.

How are you doing btw? Hope you get better and get over these awful conditions.

Thank you so much indeed for the link.