Suicidal

Yes I have. I've been to five different specialist who have all been absolutely worthless. They can't even confirm if I have Meniere's being most who have it have rotational vertigo. I have never had an attack of vertigo in the year I have had this so called Meniere's, but I constantly get light headed and feel disoriented. There are some days I will be walking and feel crazy pressure in my ear and face and feel like I am going to pass out. I've tried supplements, low sodium, low sugar, and about everything from an ENT standpoint. An old coworker had Meniere's and she said it took her 20 years to get hearing loss as bad as mine has gotten.

It's just frustrating being I honestly think something else is wrong entirely.

 

I consider Dignitas in Switzerland for assisted suicide and I already contacted them to ask if they do the procedure in case of severe tinnitus symptoms.

Waiting for their answer...

I don’t want to hang myself and have my wife find me in such condition without any idea. So, I spoke with my family that I might have to leave this world because of severe suffering. It’s so sad, that sounds can drive you crazy and insane and the medical world is only doing pseudo science for tinnitus. No one cares seriously and not enough funding is available.

Dignitas is my last hope.

 

Sorry, I thought you got something more definitive for Meniere's (did you have a positive eCoG test?).

It does sound like maybe something else. The dizziness is worth working up even if it's not the main symptom you are distressed by (because you are right, it may not be Meniere's)--it's less "non specific" otologically speaking than the hearing loss or tinnitus.

Did they rule out a perilymph fistula in your case, for instance? Sometimes those can even happen after substantial acoustic trauma.

Otherwise things like neck injury and/or TMJ can both cause dizziness and can contribute to tinnitus severity (i.e. you could have more moderate tinnitus without those as cofactors if you have them):

Impact of Temporomandibular Joint Complaints on Tinnitus-Related Distress

God, I know it can be frustrating when you have seen 5 doctors and may need to see 5 more but the "dizziness" part of this may really lead to answers, so it's worth pursuing more imo.

 

All I want for Christmas is a day where I don't want to kill myself.

 

I'm saddened by reading all the suffering these conditions bring about. They do destroy lives. I walk around my district and the local park like a Flying Dutchman, a ghost. Professionally I was at the top of my game after many years of hard work, I started from a working class family and became even an internationally renowned figure, but in the last two years I became a ghost. After so much hard work it was time to sit down a little and raise my kids while letting the young people help with the job, taking more of a guiding role.

Instead I got hit with this maddening condition, in constant worsening mode, now impossible to tolerate. I can't do anything. The rate of scientific progress toward treatment is much better than a few years ago but still too slow compared to my rate of deterioration. I can't go on. I tried so many things and so many doctors, I'm physically and mentally exhausted and don't know where to turn next. I try to put a mask on for my kids but it's heavier than a mountain. I see happy/normal people all around when I walk outside not to go mad, and it saddens me as it is a constant reminder of all I have lost. People having beers outside parks, people enjoying books or playing with their children in the park. People choosing Christmas presents, people planning holidays. Overhearing casual conversations kills me as it's a constant reminder of all I have lost. I assembled the Christmas tree for my kids and it was like assembling a car, my brain is fried by two years of worsening torture, this is no life, if not for my kids I'd have already gone but even with them it's becoming impossible to bear this constantly worsening torture.

I'm taken between a rock and a hard place, as many of us. My wife is fed up by these two years and we'll have to split soon. My life has ended. I can't believe evolution has failed us so poorly, what a senselessly cruel disease, it can torture one for years but it does not kill you, it keeps you alive for more or worse. If a cure arrives it will be never soon enough but a large part of the medical establishment should be really ashamed for never taking this horrible condition seriously.

This is hell on Earth.

 

Nico,

I feel the same as you. I don't mean the symptoms, which I think are unique for everyone.

I'm a musician too, since I was 13, it has been my whole life, this high energy life, this passion, I feel you Nico. I know this. I've been touring all around the world for the last 15 years every weekend! Working everyday, 10 hours/day on production, mixing, engineering... all this with a true passion, I've never been bored.

Music was my life, and this passion/lifestyle/job was not even close to stopping.

Also all my friends and social networks (not virtual) were from the music world too. I was at a point in my career where I was planning a bigger step in a near future. I was full of enthusiasm.

And then in July this hell started... Now I feel trapped. Everything has stopped... I feel like everything is finished. Not music only, but my life. Severe tinnitus and pain are here 24/24. Every human is different and a scale of suffering doesn't exist.

BUT I just want to let you know that I think I feel you. I think I feel the same sometimes. But please know you're not alone, We have to give a chance to research and time. None of us have signed for this painful life for sure. Please try to make a little room for some hope in your mind again!

Sending much love my friend! I hope that helps a bit!
Sincerely .

 

I'm sorry. Have you tried all the pharmaceutical routes and chiropractor, specifically NUCCA? I am not sure if you suffered an acute trauma such as myself or have a long history of noise exposure. It makes me furious that all these medical doctors write this condition off as a minor annoyance or something trivial such as having the flu. I have been so angry with one doctor I had to walk out of his office two minutes into the consultation. Being I was ready to knock his teeth out. I'm a pretty calm guy most days but my patience was worn thin when he told me I was over reacting. That tinnitus isn't really anything to worry about. It only can bother you if you let it and I was not being truthful about how much it bothered me. Like I would make the shit up.
I hope you are able to find some help.

I have had an eCoG test done which showed abnormal however I have read the efficacy of this test is absolute shit. The more hearing loss you have the more worthless the test becomes.

Being my hearing loss went from mild to moderately severe in the span of three weeks still makes me think the Meniere's diagnosis is shit. My old coworker who has severe Meniere's has never had the type of pain I am experiencing.

So yesterday I went to the chiro and had my neck adjusted. Within five hours my roaring tinnitus went from a 10/10 to a 2/10 for roughly five hours. Then it went to I'd say a 4/10 around 11 pm. I went to bed at 5 am being I'm trying to sleep on my back to see if it has any effect on the noise. Finally I laid with my bad ear into the pillow which is something I typically cannot do and fell asleep.

When I woke up at 10 am my roaring was back to 10/10 and has been severe all day again. It's very that obviously something is wrong and they aren't doing shit to help. When the tinnitus goes down low I can hear very quiet things.

Hopefully I will find something soon.

I have asked about perilymph fistula and was told it couldn't be that by three out of four ENT doctors. I also have never had any type of balance testing done at all. Maybe the doctors in metro Detroit are just not worth a shit. I did have a neuromuscular dentist do a CT scan of my jaw and he told my TMJ is fine but there is inflammation behind the joint directly in front of the ear. I told my current doctor this and he blew it off and said nope, that wouldn't cause any problems. I guess my luck in general just fucking sucks.

 

If your wife won't stand by you in sickness like she would in health then tell her to pack her bags and fuck off.

 

Jrblovsky's point regarding the frankly astonishing readiness with which the Global Medical Community developed a vaccine for COVID-19 is very telling.

Imagine if 90% of those who contracted COVID-19 as a consequence also developed severe tinnitus. There would then have been an analogous, absolutely determined Worldwide effort to find a cure.

What is so galling from this is the supposition that a real treatment exists, but incomprehensibly is still so infuriatingly under-regarded.

 

You deserve that and so much more. Keeping my fingers crossed for you (and many others).

 

Just hearing about you trying to fake it for your kids and put up a tree for them...

You are so much stronger than you realize and so deserving of the life you set yourself up for (but were robbed of).

Wish I could give you a real hug instead of an emoji.

 

You could have an MRI of your TMJ. That’s supposed to be the best imaging for TMJ issues. Inflammation near your ear can affect the ear canal causing tinnitus, so I’m told. I have loud noise on my TMD side.

 

I'm trying microdosing Psilocybin - if it helps will let you know. We all deserve an escape from this...

 

Seriously. Anyone who raises kids with a severe version of one of these disorders is nothing short of incredible.

 

Maybe the tinnitus community should pay a virologist to create a virus that causes severe tinnitus and infect the populace with it. Then have the antidote held ransom until billions of dollars are secured for research to help everyone suffering. Just imagine if these asshole politicians took even a 10% of what they spend on the election campaign to help fund research. What a fucked up world we live in.

 

I'm going to go and visit a neurologist and see if he has anything to add. I'm done wasting time with ENT doctors and their foolish nonsense. I'm praying he can do some scans and find what is causing this. Obviously something is compressed or pinched being the noise goes from extreme to mild in a 15 minute adjustment.

 

@Jrblovsky, please get another opinion. I know you are sick of doctors...

 

How did those three rule it out? What was their explanation? It's neurotology. What did that one say? Neurotologists should know more. And how exactly do they know that acoustic trauma did not cause a PLF, and that the PLF isn't causing your progressive hearing loss and secondary endolymphatic hydrops?

The only thing that doesn't fit in is the relief after the neck adjustment.
The worsening after lying on your bad ear fits in, though.

 

Three of the ENT doctors were neurotologists. I think these clowns get so stuck in their ways they honestly think they are God.

Doesn't a fistula heal on its own over a few weeks to months?

I've been in hell for a year now and it was never this bad before.

 

Ideally, yes (even people who get better should not push it in future with any pressure - changing activity or extremely loud noise).

Some people had it for years before they were diagnosed. I'm just saying. That doesn't mean it can't heal on its own within few months or that I am advising anyone to go to any risky test or a procedure or a surgery. Off course it is better if it heals, or even partially heals, with rest and dietary changes. Even the doctors who know how to do the PLF surgery will first advise against it, and maybe prescribe diuretics, and monitor if there's any change in balance or hearing. It just means that the doctors who don't have much experience with it will just say no and "explain" if you don't have severe vertigo with severe hearing loss you don't have it because they don't want to say "we don't know".

And they are supposed to ask a lot of questions about your trauma and your symptoms so that's why I asked you what their explanation was and why they were sure you didn't have it. Because it might be they simply said no because they don't know how to diagnose it or treat it, and saying no is easier for them and less risky for you than messing with your ears. All types of third window are infrequently recognized.

 

Understood. My visits have gone very quick with very little information. The first ENT doctor actually tried to help me but she was young and told me her experience with Meniere's or hydrops was very limited and ask to refer me to a more specific neurotologist being she was a general ENT. The next three doctors did no testing whatsoever and literally said yep it's Meniere's. Okay see you in three months.

The only doctor that said Meniere's was wrong was a doctor at the University of Michigan being I have no vertigo. He said you simply cannot have a Meniere's diagnosis without vertigo but he suspected cochlear hydrops or cochlear Meniere's but did not do testing, just referred to psychiatrist and audiologist.

This COVID-19 pandemic has shown how witless and utterly unhelpful the medical community is. I saw that doctor in June and my appointment for audiologist and psychiatrist were in November and December. I hope I'll find something with the neurologist but I don't know. Hopefully he will actually run some tests and try to help me out.

 

Can you hear your tinnitus clearly and kind of loudly over everyday noises? Like you don't have to look for it to hear it over everything? It's like in your face?

 

Reading your post breaks my broken heart.

I wish I could help everyone here.

You are such a kind and beautiful person and I know you are in hell. Myself and everyone here loves and appreciates you. That doesn't change anything but it's important to say as it's what we can do for each other.

When this virus shit blows over and people can travel again, you can come and squat out at and chill at my place. You are most welcome and so are your kids.

Praying for you and everebody who finds themselves posting on this thread.
Love and hugs...

 

Most of my problems started back in 2008 when I was 38 years old. I had a massive heart attack in the gym while I was squatting really heavy. Turns out that I have a genetic clotting disorder. In the cardiac cath lab they aspirated out the clot from my right coronary but the damage was already done. I had no atherosclerosis, so didn't need a stent. At the time I was bodybuilding and getting ready for a contest in about 6 months. I was fit and somewhere around 8 to 10% bodyfat at 235 lbs.

Now I have severe cardiac arrhythmias and have to take a drug called Mexiletine to try and control it. My ejection fraction is only 20%, so I have an implanted defibrillator/pacemaker in my chest. It has gone off quite a few times to save my life. I now suffer from some PTSD from that, since it went off 2x in my sleep and it feels so terrible when it goes off. Some nights I am scared to go to sleep because I am worried I may not wake up.

When my heart gets stuck in ventricular tachycardia I have to have my wife take me to the ER and they "cardiovert" me, defibrillate me. I've had to have that done about 6 times no in the past 3 years. Had 3 recent bouts in the past 5 months.

I've had high pitched tinnitus ringing now since I was about 18 years old. It's the sound you get after you go to a loud concert, but it never went away. I think it's from loud music at concerts and my car stereo. I can deal with it, I'm so used to it that I tune it out. I have some hearing loss but not bad enough to require a hearing aid.

About 2 weeks ago I started getting a low frequency, like a drum, beating in my left ear. This is a new problem. My right ear is fine. The beating is in addition to the high pitched ringing sound. It is not synchronized with my heartbeat, so it has nothing to do with that. Most of the time the rate of the thumping is very fast, between 100 and 200 bpm I'd say. It can slow down though and only be like 10 times a minute. It comes and goes thank God.

I'm on this thread now because this new sound is driving me mad. I thought I was tough since I live with PTSD from my heart problems/defibrillator and have lived with tinnitus ringing sound for about 38 years or more. This new sound is terrible. Makes it hard to fall asleep. I saw an ENT and he agreed that it sounds like it might be MEM (Middle Ear Myoclonus), where one of the inner ear muscles is twitching uncontrollably. He had no solutions for me and the trip felt like a total waste of time. I don't like going out in public now either because of COVID-19. I have heart failure and am at a big risk of serious problems if I get that virus.

I had just increased my beta blocker dose 2 days before the new problem occurred. I tried cutting the dose back down to my old level and in about 3 days the sound was gone! Fast forward about 1 week and now it came back today. I took a pseudoephedrine 12 hour tablet and in about 1 hour the sound is gone now. I had tried that a few weeks back and it seemed to work some times and other times not. The ENT said my ears looked healthy and no problems, so he must have thought there isn't and fluid in there. Somehow the decongestant seems to help. I don't want to use it on a regular basis because it can cause heart arrhythmias. Two days ago I increased my Lisinopril dose from 5 mg to 10mg/day. Maybe that triggered this? The thing is that in the past I was able to take those same doses and had no issues at all.

I can understand why some of you talk about suicide, but it is not the answer. If I can do it with my heart failure, you can survive with tinnitus. This new bass sound I get is definitely about 10x worse than the normal ringing tinnitus I have had for more than 3 decades, but it's not ever going to make me commit suicide. Now going to bed and getting a good night sleep is really hard between my fear of getting shocked as I sleep and the throbbing in my ear. Just have to carry on, its all we can do.

 

That low frequency sound you had for a short time. Try having that sound all day, everyday at volume levels so loud you cannot mask it with anything. No white noise, no fans, nothing. This is my life for the last six months. The first six were bad. This is unreal. I have to eat antidepressants and benzos just to get out of bed during the day. Career gone, nice financed vehicle gone, sanity gone. The human mind can only take so much.

It sounds like you have other serious health issues and I'm sorry. I would do what you need to do to not contract low frequency tinnitus. The high frequency ringing is annoying as you know. I laugh a bit when people on this forum are freaking out over not being able to listen to the Foo Fighters on the iPod. Cry me a fucking river. When this low frequency shit gets loud it's like a nightmare you cannot wake up from. Wouldn't wish it on anyone.

 

You seem like a compassionate, empathic human being. (Spoiler: not).

Someone losing the ability to listen to music can be the final straw in their life, and off to suicide they go.

You don't walk in anyone else's shoes. To someone what seems a lesser evil to you might be the worst thing in their lives, an insurmountable challenge.

 

Thank you, my friend. I hope to be able to live with this monster and to be able to meet you some day. You are one of the most empathetic and kind friends I found in this forum, Daniel.

 

Ear drum spasming prevents me from sleeping. It loves to go off right as I'm about to nod off. Don't know why this is a thing. It's like my body wants to do everything in its power to prevent me from being healthy. And on top of that, oh can't eat this food or that food because oh this has salicylates, this is ototoxic, that is ototoxic. Can't exercise because pulsatile tinnitus. Can't go as hard or heavy as I used to. I hate the slow stuff.

Normie daytimer sleep schedule? That would be cool, but me doing anything semi-productive during the day may cause a spike. Oh, and light hurts me now too. Vampire sleep schedule? That's been my play for awhile now, except trying to get to sleep with loud cars going outside is hard.

If I'm not experiencing this problem it's another problem. Right now, it's TTTS, in my right ear again, exploding head, and random worsening out of nowhere. Exploding head SUCKS. I've never, after experiencing several traumatic incidents over my lifetime, experienced exploding head. But sure, medical professionals. It's all STRESS and ANXIETY. Let's keep that in the books.

I miss being healthy and productive. The things I used to do that *were* healthy and productive are now off-limits. I feel like I'm 27 going on 77. I don't give a crap about partying or doing young person things but it would be nice to wake up and not feel like I'm at the end of my life rather than the "prime" of it.

I'm tired of walking on eggshells and trying to strategize everything I do in life to prevent something from happening. Something that, either way, still ends up happening regardless. I'm tired of trying to unravel this grand web of conspiracy and BS that hyperacusis is. Being a hermit and not listening to music isn't even enough, apparently. But I'm scared if I attempt to take off the training wheels (plugs) I'll just get worse. I've gotten nothing but worse no matter what I do.

Disjointed rant, my apologies.

 

I know this this is mainly a tinnitus forum but I’m just so, so exhausted of having things about myself I need to fix, health-wise. Even if these horrible sounds are gone I’ll still be left with the burning, the visual snow, probably the TTTS and face pain and the fear of “sound” that one develops after dealing with hyperacusis for a prolonged period of time.

Not to mention the other health issues that have come with the hyperacusis lifestyle. I just want one day of waking up and not thinking of what’s going to hurt today. I’m not even 30 yet and I feel like my life has just been one health issue after another and it’s probably only going to get worse. I’m so mentally exhausted

 

It really sucks.

Some people die in their mothers' wombs before they are even born.

There's no meaning or sense to this life. At the end of the day it's all worthless anyway, 200 years from now we're a distant memory.

It's confusing how we are wired in such a way that we want to preserve our shitty lives as long as possible.