Suicidal

[Matt9]

It's really hard to tell. Were you exposed to loud sounds, tried new medicine, slept worse or did anything out of the ordinary happen?

If it's only louder when you are focusing on it, possibly it's anxiety.

I don't know if it's louder only because I focus on it more or if it's a spike. Fact is that I used to ignore it and didn't care until last week. Now I am in panic.

 

[Chinmoku]

I've heard he only crossed the Rubicon because he couldn't hear all the senators shouting at him from the other side due to his tinnitus.

I had read somewhere that he suffered dizziness attacks and occasional hearing problems, more like Meniere's disease. Who knows... 2000 years later, here we are.

 

[2knight]

new member here, the tinnitus is getting very irritating this week, so I have to ask, did anybody have a spike in T after amoxicillin? How long before it went down to original level, if it did? I did not make the connection when I did take my antibiotic course, thinking it might be stress and other stuff since mine is a on/off kind of thing, but now I am not seeing any reduction in the ringing after a couple of weeks and it is very irritating with very less information on the net between the relationship of these 2 things too. Anybody can shed a light on it?

 

[Christiaan]

I'm truly sorry, from the bottom of my heart. With all of my suffering, I have been extremely fortunate in that my loved ones have treated me right. I'm sure there are family members out there who completely don't get it at all. But they are not at the forefront of any discussions or anything.

We have had disagreements, but they are completely expected ones. For example, could I be in a better position by taking off my earmuffs and doing sound therapy? Am I over protecting too much? However, after I explain that TRT completely lacks evidence and that all personal evidence says that sounds make me worse, I am believed. They certainly understand that I have a disease and that sound therapy can't fix this.

To be honest, I pin all of these communication issues on the ATA, ENTs, and the Jastreboff movement. If one of my loved ones developed hyperacusis (and I never had it before), I would do some google searches and see all of the "credible" sources talking about TRT and overprotection. Given that I care about my loved ones, I would want to see them better. I'm sure I would wonder about over protection as well. It's simply astonishing that the Jastreboff pseudoscience is propped up as mainstream advice. In 2020.

I, and others, can't emphasize enough how much harm is being done by outdated advice. Getting an MRI, which every doctor has recommended for me, is not a trivial decision. In fact, if it is trivial, it's in the direction of not doing it, given that 40 dB music set me way back for 6 months and I still haven't recovered from it. Anyways, I won't start that rant.

What's especially sad is how common it is for family members to not believe people. It's almost so common that I expect it to be the case. I really feel for you.

It's good to hear that you have such great support from your loved ones, especially from your wife, from what I gather. Nothing of this is easy for us, but having support from people who understand us and our disabilities helps to ease the pain.

Unfortunately, in my country, we also have cognitive behaviour therapy as the go-to treatment for tinnitus. Better yet, it is often touted as the only solution in the last few years. Meanwhile, there appear articles in local newspapers that people with tinnitus & hyperacusis have committed suicide because they felt so hopeless, especially that they've been told that there is no fix. Despite all that, there has not been a Copernican Revolution in the (European) medical world in changing strategy to help those who greatly suffer from tinnitus and hyperacusis. There are a few projects for addressing Tinnitus, but it's generally meagre in terms of subsidies and investments. It makes one wonder how Jastreboff and his ilk have been so successful in creating such an anti-intellectual atmosphere. In a way, they seem more successful as marketeers than as credible scientists.

It's a shame that you've been given inadequate advice. Some people need to polish their knowledge. It's sort of ironic that some ENT's play a role in increasing someone's tinnitus + hyperacusis instead of helping them avoid more harm. The same happened to me. It's clear that some push back is needed in informing people that tinnitus & hyperacusis are not small fries.

 

[Christiaan]

@Christiaan you are still a newbie since March 2020. You need at least 2 years to start feeling better about loud tinnitus. Can you pass the faucet or shower test?

Not really. I had mild tinnitus in 2016, but now I suffer from a severe version of tinnitus. I've an electric drill sound of around 70/80 dB, and two other sounds that I can hear almost everywhere; an intermittent engine noise (40 dB) and constant white noise (50/60 dB). The shower is ok, but I can still hear my tones and that makes it annoying as hell.

 

[Christiaan]

Not creative but better "predictive" brains. Dr. Will Sedley and Dr. Thanos both talked about this.

+ It seems that people with AS are more likely to have tinnitus and hyperacusis. So it partly explains why some people like me are so freaking lucky to be born with this trait

Here's the article:

Tinnitus and hyperacusis in autism spectrum disorders with emphasis on high functioning individuals diagnosed with Asperger's Syndrome

Conclusion:
''Hyperacusis and tinnitus are more prevalent in the ASD population subgroup diagnosed with AS under DSM-IV criteria than in the general public. Hyperacusis also appears to be more prevalent in the AS population than in the ASD population at large. Future research is warranted to provide insight into the possible correlation between tinnitus and hyperacusis symptoms and the abnormal social interactions observed in this group.''

 

[GaryTH]

What method of tapering did you use?

Unfortunately I didn't taper, as my psychiatrist did not advise me to do so. I was taking small doses intermittently 2-3 nights a week, so I did not think I was dependent.

 

[GaryTH]

Check out my thread about safe benzo drug:

Here's a Safe Benzo Drug for Tinnitus Sufferers: Tofisopam (Emandaxin, Grandaxin, Sériel)

There are no "safe benzos", you mean non ototoxic. They can create fast dependence as well as withdrawal symptoms that last for months or even years.

 

[dan]

Not really. I had mild tinnitus in 2016, but now I suffer from a severe version of tinnitus. I've an electric drill sound of around 70/80 dB, and two other sounds that I can hear almost everywhere; an intermittent engine noise (40 dB) and constant white noise (50/60 dB). The shower is ok, but I can still hear my tones and that makes it annoying as hell.

The electric drill, do you hear it almost everywhere? What kind of areas provide relief? Thanx.

 

[dan]

I'm worried the doctor won't prescribe those drugs to me :/ the drugs won't only be for noise induced hearing loss, right? I mean I was born with my hearing loss and I have an ear that is like 85 percent deaf with sensorineural hearing loss.

First off, why are we talking like this thing is hitting the market 100%?

There is an old Russian proverb which says: Catch the bear before you sell its fur.
Equivalent to: Don't count your chickens before they hatch.

Having said that, if these meds come out, there will be countries that sell them without prescription and/or doctors who would gladly inject you for $$$.

 

[dan]

@Christiaan where do you go to get some relief of not hearing your tinnitus?

 

[Christiaan]

The electric drill, do you hear it almost everywhere? What kind of areas provide relief? Thanx.

Yep, almost everywhere. The only place for just a bit of relief would be the park when I go out with my dog.

 

[Michael01]

Also, tinnitus is a very physical condition caused by cochlear damage or head trauma.

I'm not sure about that. I have no history of head trauma and I can't think of anything I've done that could've damaged my cochlea. Yet I have this hellish thing. I'm trying to hold on in hopes of some form of treatment coming soon, but it's hard, to say the least. It does just stop sometimes rarely, but it can start up again just as fast in the space of 5-10 minutes like this morning, when it started again while I was having a shower after not being there when I woke up. But I do have Asperger's Syndrome so maybe that's the cause, or a contributor?

 

[weab00]

I'm not sure about that. I have no history of head trauma and I can't think of anything I've done that could've damaged my cochlea. Yet I have this hellish thing. I'm trying to hold on in hopes of some form of treatment coming soon, but it's hard, to say the least. It does just stop sometimes rarely, but it can start up again just as fast in the space of 5-10 minutes like this morning, when it started again while I was having a shower after not being there when I woke up. But I do have Asperger's Syndrome so maybe that's the cause, or a contributor?

Usually it is. Not sure about your case. There are different pathophysiologies like TMJ.

 

[Michael01]

Yeah, according to my dentist, I don't have the symptoms of TMJ. Only thing I can think of is that the chronic headaches I've been experiencing triggered this off, as they started around the same time as the tinnitus. Sometimes I feel a pulsing motion in my head and ears when my ears ring in response to a random noise.

 

[Ken219]

amoxicillin

'The fourth edition of "Ototoxic Drugs Exposed" (whenever it comes out) will have a full listing of the ototoxic side effects of Amoxicillin. For example, we now know Amoxicillin (Agumentin) can cause hearing loss, tinnitus, dizziness, vertigo and other vestibular disorders.'

Hope you get better.

 

[Ken219]

It makes one wonder how Jastreboff and his ilk have been so successful in creating such an anti-intellectual atmosphere. In a way, they seem more successful as marketeers than as credible scientists.

Amazing the guy caught on to P.T. Barnum "The public appears disposed to be amused even when they are conscious of being deceived." "There's a sucker born every minute"

Hopefully real treatments or cure come soon.

 

[Michael01]

Hopefully real treatments or cure come soon.

Me as well. A real cure for this thing is being awaited on by many people I suspect.

 

[peter91]

There are no "safe benzos", you mean non ototoxic. They can create fast dependence as well as withdrawal symptoms that last for months or even years.

Did you read my post?

I mean it's not creating fast dependence and withdrawal as traditional benzos do.

You can't take it safely up to 3 months (and according to my experience quit CT after 2 weeks without discomfort)

 

[dan]

Yep, almost everywhere. The only place for just a bit of relief would be the park when I go out with my dog.

Ok, I can hear it in the park easily my friend. I can hear it sitting in an airplane.

You should not do euthanasia based on your tinnitus description.

 

[funeralcry]

I think the ability to feel at peace and relaxed is essential for human functioning. I feel like I have been cursed by an demon. They say tinnitus can't kill people so why do I feel like I have already died?

 

[ASilverLight]

I keep going from having hope for treatments to absolute despair. Knowing everyone will go back to normal once the whole COVID-19 situation gets better while I'll be stuck inside doing nothing hurts so much. I miss music so much. I miss the comfort of a shower and not worrying about the spike I get from them. I miss listening to the rain at night.

I hate that I can no longer travel because everything is so loud and I got cursed with multiple loud noises, some of which reactive, and I'm terrified none of the upcoming stuff is going to do anything for reactive tinnitus as well as tinnitus that have no clear tonal character. I'm not the worst case here but it does feel like I got cursed with the worst variations of tinnitus.

I just want to go back one year ago, before any of this hell ever started. I'm not sure if I can even hang on for treatments that may not work. I'm just so tired.

 

[Zugzug]

I just want to go back one year ago, before any of this hell ever started. I'm not sure if I can even hang on for treatments that may not work. I'm just so tired.

Feel exactly the same way. My life before hyperacusis was not extravagant -- some would even call it boring. Yet it was so extraordinary compared to this current life that I tear up just thinking about doing the most mundane things.

 

[GBB]

First off, why are we talking like this thing is hitting the market 100%?

There is an old Russian proverb which says: Catch the bear before you sell its fur.
Equivalent to: Don't count your chickens before they hatch.

Having said that, if these meds come out, there will be countries that sell them without prescription and/or doctors who would gladly inject you for $$$.

All one needs to do is go back to 2013/2014 on this site and read about how Autifony et al would cure them in a few years. If I didn't have tinnitus this forum would be a great subject to study as a social experiment...

 

[Christiaan]

I keep going from having hope for treatments to absolute despair. Knowing everyone will go back to normal once the whole COVID-19 situation gets better while I'll be stuck inside doing nothing hurts so much. I miss music so much. I miss the comfort of a shower and not worrying about the spike I get from them. I miss listening to the rain at night.

I hate that I can no longer travel because everything is so loud and I got cursed with multiple loud noises, some of which reactive, and I'm terrified none of the upcoming stuff is going to do anything for reactive tinnitus as well as tinnitus that have no clear tonal character. I'm not the worst case here but it does feel like I got cursed with the worst variations of tinnitus.

I just want to go back one year ago, before any of this hell ever started. I'm not sure if I can even hang on for treatments that may not work. I'm just so tired.

Ey @ASilverLight. I have the same thoughts like you. There's no easy way out of this. Only thought that helps me going, and I hope also for you, is that we are maybe the first people who are going to by helped by FX-322 & OTO-314. All it takes is playing the waiting game for a little while (7-12 months perhaps). Just hold on. We'll get to that point together. Groetjes from a fellow Dutchman.

 

[ASilverLight]

Feel exactly the same way. My life before hyperacusis was not extravagant -- some would even call it boring. Yet it was so extraordinary compared to this current life that I tear up just thinking about doing the most mundane things.

Honestly, this so much. I didn't do much, necessarily. I'd travel occasionally (usually once every year) and only for the past 4 years or so. I'd go to an occasional gig (2 a year on average) and see an occasional movie. Mundane things, all with hearing protection too. Usually I'd just be at home writing, gaming, watching movies, cooking or doing something creative.

It was only last year that I started being more outgoing etc, and it was immediately taken from me. Being in my early 20s that just sucks a lot, although you have my deepest condolences. I don't have hyperacusis the way you do, just exhausting reactive tinnitus.

@Christiaan groetjes terug! And thanks so much. I really hope it'll bring relief at least. If I could go to one stable tone I'd be happy. Also, should we get cured and hang on long enough, let's have a VR Young the Giant gig

 

[Christiaan]

Feel exactly the same way. My life before hyperacusis was not extravagant -- some would even call it boring. Yet it was so extraordinary compared to this current life that I tear up just thinking about doing the most mundane things.

It's exactly that @Zugzug. It's not only tinnitus & hyperacusis that gets to us, but it's especially the way how life is turned upside down by this cruelty. No work, no social life, no enjoyment in even the little things. Sometimes life can be a total jerk.

 

[dan]

All one needs to do is go back to 2013/2014 on this site and read about how Autifony et al would cure them in a few years. If I didn't have tinnitus this forum would be a great subject to study as a social experiment...

Yes and I was one of those with high hopes... but then again that was the first time in history of tinnitus that a drug was developed and trialed exclusively for tinnitus... we didn't land on the moon the first try out...

 

[FGG]

Yes and I was one of those with high hopes... but then again that was the first time in history of tinnitus that a drug was developed and trialed exclusively for tinnitus... we didn't land on the moon the first try out...

I talked to one of the researchers at Autifony and she believes the drug works but was not specific enough to the ion channels needed. In other words, they ran into the Trobalt problem but instead of being dangerous, it just wasn't as effective as they needed it to be. They haven't given up on this idea and are reformulating to "get a better drug for this" in her words.

Your landing on the moon analogy is how I see it, too.

 

[GBB]

Yes and I was one of those with high hopes... but then again that was the first time in history of tinnitus that a drug was developed and trialed exclusively for tinnitus... we didn't land on the moon the first try out...

You're right, and there are a greater number of companies involved this time, diversified by mechanism of action, so I'm sure we have a great shot. Still, I don't want to come back here and cringe at this comment in 2025.