I ended up shutting off the heat in my bedroom. It comes up every 15 minutes. I can still hear it in the pipes slightly but no whistling.
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Suicidal
- Thread starter jeremy06
- Start date
Hi AliasM,
I am now member of the German DGHS. When it's time to leave I will do this through DGHS. My family is not happy with that but some understand my torture, some not. The problem is I have a 2-year-old kid. It would be a disaster but I cannot cope any longer. I have suffered extremely for many many months. My tinnitus sounds are unbearable and no one can help. I had high hopes on Lenire but it failed.
I am now member of the German DGHS. When it's time to leave I will do this through DGHS. My family is not happy with that but some understand my torture, some not. The problem is I have a 2-year-old kid. It would be a disaster but I cannot cope any longer. I have suffered extremely for many many months. My tinnitus sounds are unbearable and no one can help. I had high hopes on Lenire but it failed.
Did you ever go to a perilymph fistula specialist to rule out a perilymph fistula?
How long did it take you to become a member?
And do you pay upfront to become a member, or is it when you decide it's time to go?
No. It is very unlikely. My issues are bilateral which would be super rare. I have the classic onset of a CSF leak, and I have classic symptoms. I have orthostatix head pain 24/7 (better lying down, worse standing), I have tinnitus which is red flag as 90% of people with leaks do. I have the vestibular issues, visual issues and other weird neurological weirdness that accompanies a spinal leak. Finding the leak is like a needle in a haystack and treating it is risky and lengthy. I can't live like this anymore. I'm only able to stand up maybe an hour a day. I've been in bed for over a year. Doctors don't GAF. No expertise, no will to bother acquiring any, no urgency, just gaslighting.
EDDTEKK, I have 4 kids, my youngest just turned 3 so I get it. I know they need me, the old trope everyone comes out with. But this noise and other symptoms aren't liveable.
TheDanishGirl, you can't go alone. You need someone to witness you. Pegasos don't provide that person, Exit International do. You befriend someone in the lead up so you join and build a relationship long before your VAD date. In fact, you need that lifelong membership to either Exit International or Pegasos before you file your application.
Bilateral perilymph fistula all of a sudden would be rare, but if someone has it in one ear it is not uncommon for the symptoms to spread to the other ear within months. And your ear issues started in RIGHT ear, not bilaterally. So it is not excluded.
Yes, orthostatic headache is definitely a common symptom of a CSF leak. I am sure it is one of the most common symptoms of a spinal CSF leak, but I am not sure if it is restricted to spinal CSF leak only. Did you have spinal anaesthesia during this childbirth?
All I am saying is, even though it is rare, round and oval window membranes (between inner and middle ear) are potential sites of a CSF leak too. In other words, while people with a mild PLF can go around for years before they get diagnosed (if it doesn't heal), a severe PLF can sometimes be a CSF leak. I understand you have a classic onset of a CSF leak, I am just not sure it didn't start in your right ear. Auditory, vestibular and visual issues are some of the classic symptoms of a PLF too. I am only not sure about the orthostatic headache. PLF people can have different types of headaches, but you should check with them if their headache can be orthostatic too or not. And maybe do a telehealth with the Australian PLF specialist if you can't travel, that can't harm you.
Member- May 24, 2017
- 1,622
- Tinnitus Since
- 05/2017 (H since 06/2017)
- Cause of Tinnitus
- long term noise exposure (headphones), maybe some stress.
Thanks for explaining. This is kinda shocking news to me, because Pegasos don't state anything about that on their website, as far as I can tell. I know that becoming a supporter of Pegasos is mandatory to file application, but I thought that was it, cause Pegasos says you can apply for VAD straight after becoming a supporter of them.
The witness thing sounds really difficult, and this info is getting me down.
You got other ailments on top of reactive tinnitus? That sucks. May I ask how you deal with such a debilitating tinnitus that interferes with your hearing? I'm 2 years in with severe tinnitus and I'm still very depressed but it doesn't surprise me anymore, just I mourn for the quiet tinnitus I had. I would cry tears of joy if it suddenly came back lol.
Pegasos does mention it on their website in the FAQ section. The reason why you need a personal witness to identify your body is to comply with Swiss law.
- May 24, 2017
- 1,622
- Tinnitus Since
- 05/2017 (H since 06/2017)
- Cause of Tinnitus
- long term noise exposure (headphones), maybe some stress.
I found the info now. Wow, so a VAD actually ends up costing about €14,000 instead of €10,000. Maybe it's just better to seek other solutions
No. If you want to die badly enough, you may be tempted to try to kill yourself without proper planning. But that does not equate "finding a way."
I know multiple people who irrepairably wrecked their lives by a botched attempt at suicide.
They say that "What does not kill us makes us stronger." But the truth is that, when it comes to suicide attempts, "what does not kill us puts us in a wheelchair if we're lucky, and if we're not lucky it makes us a vegetable."
That being said there are some things no one can survive. I don't discuss methods here but you are correct. I botched 2 times already and escaped with no lasting damage. I am scared of crippling myself but tinnitus and hyperacusis is making me desperate.
100% agreed! What's worse than chronic severe 24/7 screeching tinnitus? Being a vegetable or paralyzed, but still stuck with the same tinnitus, except you have no way out anymore... If I truly pick Pegasos as my way out, I won't be afraid to invest my last penny from my savings as I won't need anymore money where I'm going. I want to do the job right. Professional, legal, humane, respectable, and with as little suffering, drama, or emotional baggage as possible which makes the idea of Pegasos even existing as an option - extraordinarily hopeful for me. I feel like if that time comes for me to make the call, I won't have to be utterly alone in my suffering in the end. So Pegasos is kind of like a guardian angel in that sense. A final option that can aid me in living out the rest of my life, however much time I might have, with less fear and despair because I know that I'll always have a choice in the end if I decide to make it and I'll be fully supported and warmly embraced if I do - going through Pegasos that is. I need to have this choice in my life. I'm doing everything I can in practicality to find ways to keep living my life and reap what joys I can from what remains available to me, but I understand after many months when tit-comes-to-tat, it may be time to cut my losses and finally get some much deserved and needed rest, and of course - the silence I once had that my heart aches for.
I look forward to continuing to check up on you all, and also learning more about Pegasos and how you all cope with this disease. Wishing you the best in happiness and health.
Being a vegetable with tinnitus is horrific, but with all the red tape, we are going to have to take some chances. Until Euthanasia is accepted across the world many people will maim themselves who are suffering unimaginable pain.
Manex
Member
- Feb 28, 2019
- 57
- Tinnitus Since
- 1995
- Cause of Tinnitus
- Noise induced 1995, Azithromycin 2018
Have you ever tried playing the pitch back into your ear... not too loud... but play it for about 20 seconds and then rest it. Then repeat this a handful of times? You can create pitches with phone apps like Tone Generator. Just make sure you are careful with the volume. The idea is to just hear it, but not totally mask it when doing this. Sometimes doing this about five times can create some relief - temporary - but even doing it regularly is potentially therapeutic. You could get a hearing aid which plays the tones which bother you as well, but I think what I suggest here first should be tried long long before a hearing aid.
It's very sad but true. My heart will always be with the millions and millions of people throughout the ages of time who've felt like they had no choice except to take such drastic actions independently by their own hands without any support or care or love from others just so that they'd be able to put an end to their unbearable suffering that others could never understand. Life can be so cruel... But they stuck with it until the end, just like the rest of us, and that takes even greater courage when an individual's suffering grows and becomes insurmountable. I know most 'regular' people will look down on others who stood up for themselves like that, but it's those very people who somehow had to find the insane courage within themselves to make life's ultimate decision for themselves and take that great leap of faith willingly instead of running away and kicking and screaming like most everyone else does naturally when confronting the idea of the end. It's humbling. Some people are just so strong and brave. I don't want to suffer, but I'd be lying if I said I wasn't afraid of what happens after we pass on. Not fear of leaving everything behind or fear of escaping suffering, but fear of what comes or could come next. But, passing on is simply an ending no one is able to outrun no matter how much we can try, no matter how healthy, or happy, or fit we are, it can be no match for the passage of time. Existence is such a scary thing.
I honestly wish I could talk to a therapist who wouldn't report me, condemn, or otherwise look down on me for my beliefs on self-choice and euthanasia when it comes to human suffering especially for chronic conditions that greatly impact quality of life and well-being. I wish mental health professionals were like that. People who you could tell and share anything with, and they'd full-heartedly support you to both live the happiest life you can live, while also supporting you and offering care and compassion in the event one is considering or coming to terms with euthanasia. Too bad this kind of holistic needed support essentially doesn't exist or isn't legally sanctioned in almost every modern society. If it did, it would quite likely give me the intellectual and emotional support to extend my days alive rather than serving to shorten my time here.
Mister Muso
Member
Do you have any family members or friends? I had a therapist I came close with and we used to hug.
I agree with both of you so much.
It doesn't help if you're not religious and you're afraid that death is the end.
It's an odd conundrum. Suffering in life and dying ends that but also ends everything else.
I feel that post.
I'm constantly pressured into working whilst dealing with this barrage of noise. Being stronngarmed to going back to an office where I'd deal with this with no release all around me with no small noises to help or possible exposures to worsen me.
I feel like I got briefly better just to be slammed down again. I fucking hate this. It's been over a year and no real improving yet. Just torture torture torture. I had such hopes for my future. It's all being erased. constant distortion wavering disgusting noise in every joyous moment. I wish it were ringing or static so badly.
I don't even have my gun to go drive in an RV somewhere for a month then kill myself.
Because God knows it'll just find a way to get worse if I do anything with my life.
I'm constantly pressured into working whilst dealing with this barrage of noise. Being stronngarmed to going back to an office where I'd deal with this with no release all around me with no small noises to help or possible exposures to worsen me.
I feel like I got briefly better just to be slammed down again. I fucking hate this. It's been over a year and no real improving yet. Just torture torture torture. I had such hopes for my future. It's all being erased. constant distortion wavering disgusting noise in every joyous moment. I wish it were ringing or static so badly.
I don't even have my gun to go drive in an RV somewhere for a month then kill myself.
Because God knows it'll just find a way to get worse if I do anything with my life.
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