Suicidal

No. Results for phase 1/2 before end of 2020.

 

Does anyone have any idea why so many people with tinnitus spike due to normal everyday noise? I feel like if we understood why these fresh "wound" like cases, in which the ears remain sensitive to noise and tinnitus drastically increases in volume based on innocuous stimuli, we would have a much better understanding of what drives tinnitus overall.

Clearly the fact that me watching a movie on 10% volume on my laptop makes my tinnitus spike twice as high, cannot be explained by permanent damage to hair cells generating a phantom signal, and it's difficult to explain this as synapse damage.

I just wish I knew what was driving this hypersensitivity. It's as though the "wound" is being irritated, boosting the erroneous signal, but that doesn't jive with explanations I've heard for tinnitus in general.

 

imo Frequency could be out by 2023 (or earlier 2022) but I just can't see the others coming before 2025+.

 

Well Otonomy accepted the invitation to Tinnitus Talk Podcast so maybe we could ask them?

 

Does anyone here have a huge mistrust in Medical Academia? Especially with issues like hidden hearing loss, noxacusis and TTTS going undiscovered and even unclassified despite patient complaints for centuries perhaps. I really wonder to myself what the BLEEP historically went on in Academic circles. I imagine Jastreboff lecturing a room full of students who think they are being given genuine information or behavioral psychologist typing "another" paper on TRT and Tinnitus, or the US military putting out another grant for TRT research because it's the only game in town.

It's like a bunch of idiots pretending to be intellectual. Does anyone feel the same?

 

I generally agree, but feel slightly differently. I don't think the problem was ever Jastreboff doing research or procuring some grant money. The problem was when it kept being pursued when it was clearly a dead end. One could argue that we have nothing else, but at least "nothing else" puts a spotlight on the problem and doesn't lead to dangerous advice.

 

Yes of course, I think most people with tinnitus lost their faith in the medical world the first time they walked out of an ENT's office.

 

Ever feel like you're inching towards the end anyway no matter what you do to try to feel better or how strong you try to be? For every good day I get (rare) I just get smashed down afterwards for weeks sometimes. Other health problems as well seem to start to creep up, I don't know why but lately I've started noticing some weird sensations running down my head, neck, into my arm that feel like a nervous system buzz feeling, like my brain is turning up the voltage for a second. Worse though for the last few days, I've been having something brand new that I can only describe like a fit that I'm fully aware of while it's happening. I lose sense of surroundings, vision goes weird with black spots, but I'm aware of it happening, I'm on autopilot. I've had brain fog before, this is not the same though, its much worse and a very different feeling. I take a 2mg Valium hardly ever (5 times this year?) if I really need it and I doubt it could be kindling could it? I'm terrified of the prospect of an MRI to find out what it might be but I'm going to have to get checked if it carries on.

And when I say a good day, I mean a day with simply little pain as possible walking around the house. I might get something mundane done, and cook a meal and watch some TV. No music, pub, party, sports, big life planning though. Just really tame stuff. Its bullshit because when you're healthy you don't mind doing all the shit boring jobs, because once they're out of the way, you can get on with your passion in life whatever it is. Now though its only shitty boring jobs, with nothing at the end of it. Add a few more health issues into the mix for good measure and I just don't want to think how much worse things can get. To get better now to where I was a few ago would be a miracle.

 

There are newer, relatively quiet MRI machines available. Other forms of imaging might also be an option.

 

Seeing that my first ENT told me that there was no cure or even a way to mitigate my tinnitus and that I had to learn to live with it, I think I've lost faith in most ENTs and audiologists at his point, as they don't seem to understand fully just how devastating this can be. I'm beginning to wonder what the point of life is, if I have to live it with this eternal buzzing/ringing that never goes away...

 

How are you doing? Which treatments have you tried so far?

I would like to recommend these two books on hearing issues; they are quite informative. The second book, Volume Control discuss the case of a NYC investment banker with a lot of hearing problems in one of the chapters...

- Musicophilia, by Oliver Sacks
- Volume control, by David Owen

 

Maybe it does not have to do with loudness but with a particular tinnitus frequency that is high pitch, while the sound of tyres on the highway is lower..

 

I don't just mean doctors, I mean the academic people that publish papers like:



They are disconnected from reality and live in a pretend world where they are intellectual.

 

I've gotten some benefit with Pramipexole in terms of volume. Xanax also helps - the half life is about 11 hours and I've noticed I'll continue to benefit for 24-36 hours after ingestion, although it is only advertised to work for 6 hours. I take 0.5mg every Saturday to allow me to decompress on the weekend a bit - this lowers the volume of my tinnitus, helps with distortions, and reduces the number of audible noises. I've been told 0.5mg 1x per week should not build tolerance. For sleep, Mirtazapine lets me generally rest through the night.

That being said most days are still very difficult for me. I still have multiple noises in both ears, distortion remains an issue, as does reactivity. The biggest challenge is working with the noise - I do my best work when I can relax and spend a lot of time thinking about an issue, but the tinnitus makes it so that I want to rush to finish tasks so I can go back to actively distracting myself from the tones.

Thanks for the book recommendations, I will check them out.

 

Have you noticed any difference in your tinnitus after doing exercise, or after stretching (for instance, stretching neck)?

 

Yes, I agree with your statement. Then you might build tolerance until one day somebody sneezes loudly beside you or you pull on a metal thingie and it makes a loud screeching noise and everything you've been building up goes to shit. It's a house of cards.

I hope Dr. Thanos Tzounopoulos' pill fixes tinnitus without the need to fix hearing loss. I don't know why more research isn't being done to come up with different pills for tinnitus - not just a Retigabine reformulation.

Why isn't the tinnitus community pushing for more research? Maybe because we can't stand in front of the White House to protest - because it's a loud event. We are all sitting in our rat holes praying for a cure or committing suicide.

 

Exercise seems to spike me if it gets my blood pumping. I do stretching daily because of a chronically tight lower back, so not sure if it has any effect, as it is already built into my daily baseline.

For me exercise that increases my heart rate increases the tinnitus. I will try some neck stretches and see what happens.

 

It's true, dumb people don't get tinnitus.

 

Benzos once per week? That's going to get you addicted.

 

Interesting. For me, I would say it generally lowers my tinnitus and also the volume at which I perceive sound. It does not always happen after exercise, but my perception does fluctuate after cycling for instance.

 

Most people on Reddit said .5mg Xanax once per week is not enough to build tolerance. Do you have anything to back up your claim?

Most upvoted comment:

You absolutely wouldn’t gain a tolerance. If you find yourself looking forward to that once a week where you get to take your .5, you might want to put yourself in check, but realistically with that kinda dosage, once a week is super unlikely.

Second most upvoted:

52 pills in a year. I think you will be just fine.

 

Ey everyone, I've promised to publish a story about my struggles with tinnitus and visual snow + warning others about the severity of these two conditions. It's in Dutch, but I assume that there are tools to translate it to your preferred language. (Mod: added a Google Translate version below the Dutch one).


Leven met zware tinnitus en oogruis: een intro over leven in hel op aarde
___________________________________________________________________

Ey iedereen, ik heb al een tijdje geen teken van leven gegeven op Facebook of Whatsapp. Daar is een goede verklaring voor: ik leid sinds een aantal maanden aan een ernstige vorm van tinnitus en oogruis; twee dingen die mijn leven tot een absolute hel hebben gemaakt. Ik kan niet genoeg aan mensen benadrukken hoe slopend deze aandoeningen zijn, want als je hiermee te maken hebt, kan je niet meer de dingen doen die je hiervoor wel kon doen, zoals in mijn geval werken, studeren, uitgaan, of zelfs uitrusten op de bank is too much to ask. Kortom, het leven is aardig shit als je hiermee te maken hebt.

Voor de mensen die niet weten wat tinnitus en oogruis is; tinnitus is een piep, ruis of bromgeluid die je in je hoofd hoort en dat kan vaak een gevolg zijn van stress, medicatie of schade aan het gehoor door harde geluid of hoofdtrauma. De verklaring voor die piep volgens mainstream wetenschap is dat je brein zelf geluid simuleert als het audiologische input mist van het slakkenhuis, het zogeheten audiologische centrum waar de haarcellen zitten, die geluid opvangen van de omgeving en vervolgens doorseinen naar het brein. Bij mij is het wellicht een combinatie van zowel stress en gehoorschade geweest, want ik merk ook dat ik minder goed hoor dan voorheen en ik heb deze ernstige vorm van tinnitus gekregen in de periode dat ik veel heb moeten studeren.

Tot zover mainstream science, maar wat houdt het in de praktijk in? Er zijn mensen die een lichte vorm van tinnitus hebben, maar ook mensen die net als ik aan een zware vorm leiden. Het is weliswaar lastig te omschrijven wat het nou mild of ernstig maakt, maar ik denk dat ik het wel uit ervaring er wat over kan zeggen. Ik had namelijk een lichte vorm van tinnitus opgelopen in 2016. Ik had toen een keer naar harde muziek geluisterd met een koptelefoon en de dag erop werd ik wakker met een zachte bromtoon. Het was eerst wennen, maar na een paar weken kon ik de draad weer oppakken, want ik merkte er weinig van en ik kon gewoon werken en studeren zonder enige vorm van ongemak. Ik dacht toentertijd dat tinnitus ook niet erger kon worden als je maar rekening houdt met de volume van je muziekspeler of oordopjes draagt naar het concert, zoals ik me had laten vertellen door de huisarts. Helaas gebeurde het onvermijdelijke in maart 2020. Na een dag gestudeerd te hebben (met koptelefoons op), werd ik wakker met meerdere tonen. Ik dacht dat ik wakker werd in een nachtmerrie, want wat is dit voor een verschikking. Naast de vertrouwde bromtoon kwamen er nieuwe tonen bij die ik totaal niet kon negeren. Het is overal te horen en er is geen plek waar ik het kan negeren. Wat een verschil met wat ik ervoor had! Sinds het moment dat ik een ernstige vorm van tinnitus heb, kan ik het gewoon niet meer opbrengen om bepaalde dingen te doen. Of het nou lezen is, studeren of werken; alles is gewoon een zware taak geworden omdat je continu belast wordt door al het geluid dat je hoort.

Maar wat is oogruis eigenlijk? Oogruis betekent dat je niet meer helder ziet door allerlei kleine vlekken die voor je ogen voorbij flitsen. Het is een vrij onbekend fenomeen, maar in de tinnitus gemeenschap is dit alom bekend, want veel mensen die tinnitus hebben, hebben ook te maken met deze aandoening. Er is ook geen goede verklaring waarom wij mensen met tinnitus ook eerder een kans hebben op deze aandoening, maar het vermoeden is dat het brein zodanig overbelast is door tinnitus, dat het ook gevolgen heeft voor delen van het brein die over visuele input gaan en dat daardoor oogruis ontstaat. Wat dit allemaal voor mij betekent, is dat ik eigenlijk van 8K naar 480i ben gegaan qua oogresolutie. Dat zegt, denk ik, wel genoeg wat oogruis kan betekenen voor je zicht.

Dus nu zit ik hier een aantal maanden thuis bij mijn ouders, want ik kan amper iets doen. Door de hevigheid van deze aandoeningen, heb ik noodgedwongen mijn huur opgezegd van mijn huis en heb ik mijn studie moeten opzeggen. Ik kan ook niet meer werken, want hoe kan je iets doen als je continu een harde bromtoon, een hoge pieptoon en ruis tegelijkertijd hoort. Je probeert gewoon op dingen te concentreren, maar door het horen van al dat geluid kan het een mens tot waanzin drijven. Ontspannen zit er ook niet in, laat staan slapen. Ik gebruik zware slaapmedicatie om enigszins tot rust te komen. Maar dat is ook de enige uitweg voor mij om de dag door te komen zonder gemarteld te worden door al het geluid in mijn hoofd: slapen.

Ondertussen krijg ik psychologische hulp & medicatie, maar voor mijn gevoel is dat alleen behulpzaam voor mensen die een lichte vorm van tinnitus hebben en ermee om moeten leren gaan. Dat is leren managen met je tinnitus. Een zware vorm daarentegen managed je leven. Je wordt ermee wakker en je gaat ermee naar bed. Er is momenteel niets anders op de markt dat mij helpt om tinnitus aan te pakken. Er is werkelijk geen bio-medisch middel op dit moment dat korte metten maakt met tinnitus, dat er iets is dat de gehoorschade adresseert. Wat dat betreft is er weinig erkenning in de medische wereld voor de ernst van tinnitus. Het besef dat er niets is dat mij hiermee help, maakt mij ook moedeloos en het leven ondraaglijk.

Alles wat tinnitus met mij doet en wat dit betekent voor mijn leven, is dat ik eigenlijk voor het eerst in een lange tijd suïcidaal ben geworden. Voor mij is dit geen leven meer. Ik kan niet langer meer genieten van dingen die ik in de pre- ernstige tinnitus tijdperk wel kon opbrengen. Er is geen rust meer, alleen maar kei hard geluid. Het beïnvloedt alle facetten van je leven. Hoe lang ik dit kan volhouden? Dat durf ik niet zo te beantwoorden. Ik leef van dag tot dag maar vaak schiet er bij mij de gedachte binnen dat het allemaal geen zin meer heeft en dat ik beter een einde eraan kan maken. Ik heb al een keer gebeld naar de huisarts voor het initiëren van het euthanasie traject, maar ik heb er voorlopig nog niks mee gedaan. Af en toe heb ik ook de gedachte dat dat ik het nog kan proberen er het beste ervan te maken en dat er wellicht in de nabije toekomst een middel op de markt komt dat mijn gehoor weer ''repareert'', dat alles weer normaal wordt. Wat dat betreft zit ik in een tweespalt en elke dag stel ik me de vraag voor: hoe nu verder met al deze ellende?

Als er een ding is dat ik aan jullie wil meegeven, is dat jullie svp goed zorg moeten dragen voor jullie gehoor. Ga voor een feestje je oordoppen meenemen, zet je koptelefoon niet op hoge volume maar hoogstens op 50% , luister niet te lang naar harde muziek en plan zo nu en dan wat ''ontspanningsmomenten'' in je leven. Het bespaart je een hoop narigheid. Anyway, so far my story. Take care everyone!

Christiaan


Google Translate (English):


Living with severe tinnitus and visual snow: an intro to life in hell on earth
___________________________________________________________________

Ey everyone, I haven't given a sign of life on Facebook or Whatsapp for a while. There is a good explanation for this: I have suffered from severe tinnitus and visual snow for several months; two things that have made my life an absolute hell. I cannot emphasize enough to people how debilitating these conditions are, because when you are dealing with them, you will no longer be able to do the things you could before, such as working, studying, going out, or even resting on a couch is too much to ask. In short, life is pretty shit when you're dealing with this.

For the people who don't know what tinnitus and visual snow is; tinnitus is a beep, noise, or hum that you hear in your head and can often be a result of stress, medication, or damage to hearing from loud noise or head trauma. The explanation for that beep according to mainstream science is that your brain itself simulates sound when it lacks audiological input from the cochlea, the so-called audiological center where the hair cells are located, which receive sound from the environment and then transmit it to the brain. For me it may have been a combination of both stress and hearing damage, because I also notice that I hear less well than before and I developed this severe form of tinnitus during the period that I had to study a lot.

So much for mainstream science, but what does it mean in practice? There are people who have a mild form of tinnitus, but also people who, like me, suffer from a severe form. It is difficult to describe what makes it mild or serious, but I think I can say something about it from experience. I had contracted a mild form of tinnitus in 2016. I had once listened to loud music with headphones and the next day I woke up with a soft hum. It took some getting used to, but after a few weeks I was able to pick up the thread again, because I didn't notice it much and I could work and study without any discomfort. At the time, I thought that tinnitus couldn't get any worse if you only take into account the volume of your music player or wear earplugs to the concert, as I had been told by my General Practitioner. Unfortunately, the inevitable happened in March 2020. After a day of studying (with headphones on), I woke up to multiple tones. I thought I woke up in a nightmare, because what a horrible thing this is. In addition to the familiar hum, new tones were added that I could not ignore at all. It can be heard everywhere and there is nowhere I can ignore it. What a difference from what I had before! Ever since I got a severe form of tinnitus, I just can't bear to do certain things. Whether it is reading, studying or working; everything has just become a tough task because you are constantly burdened by all the sound you hear.

But what exactly is visual snow? Visual snow means that you can no longer see clearly through all kinds of small spots that flash past your eyes. It is a relatively unknown phenomenon, but it is well known in the tinnitus community as many people who have tinnitus are also affected by this condition. There is also no good explanation why we people with tinnitus are also more likely to have this condition, but it is suspected that the brain is so overloaded by tinnitus that it also affects parts of the brain that deal with visual input and that this creates visual snow. What all this means to me is that I've actually gone from 8K to 480i in terms of eye resolution. That, I think, says enough of what visual snow can mean for your vision.

So now I am here for a few months at home with my parents, because I can hardly do anything. Due to the severity of these afflictions, I have been forced to cancel my rent on my house and have had to cancel my studies. I also can't work anymore, because how can you do something if you continuously hear a loud hum, a high beep and noise at the same time. You're just trying to focus on things, but hearing all that noise can drive a person insane. It is not possible to relax, let alone sleep. I use heavy sleep medication to get some rest. But that's also the only way out for me to get through the day without being tortured by all the noise in my head: sleeping.

In the meantime I receive psychological help & medication, but I feel that this is only helpful for people who have a mild form of tinnitus and have to learn to deal with it. This means learning to manage your tinnitus. A heavy form, on the other hand, manages your life. You wake up with it and you go to bed with it. There is currently nothing else on the market that will help me deal with tinnitus. There is really no bio-medical remedy right now that will get rid of tinnitus, that there is anything that addresses the hearing damage. In that regard, there is little recognition in the medical world for the severity of tinnitus. Realising that there is nothing to help me with this also makes me despondent and it also makes life unbearable.

All that tinnitus does to me and what it means for my life is that I have actually become suicidal for the first time in a long while. This is no longer life for me. I can no longer enjoy things that I could muster in the pre-severe tinnitus era. There is no more rest, only very loud noise. It affects all facets of your life. How long can I keep this up? It's hard to say. I live from day to day, but often the thought comes to mind that it all no longer makes sense and that I should put an end to it. I have already called the GP to initiate the euthanasia process, but I have not done anything with it yet. From time to time I also have the thought that I can still try to make the best of it and that maybe in the near future there will be a drug on the market that will '' fix '' my hearing again, that everything will return to normal . In that respect, I am in a conflict and every day I pose myself the question: what next with all this misery?

If there is one thing I want to pass on to you, it is that you please take good care of your hearing. Bring your earplugs to a party, don't put your headphones at high volume, but at most 50%, don't listen to loud music for too long and plan some '' relaxation moments '' in your life every now and then. It will save you a lot of trouble. Anyway, so far my story. Take care everyone!

Christiaan

 

Very well written post. Honestly, that takes a lot of courage. There's a part of me that wants to go public, but I am afraid of how I will react to the people that think I'm crying over spilt milk. As you know, hyperacusis and tinnitus create unimaginable levels of suffering with simply no public empathy. I'm too unstable right now to know. In all likelihood, anyone who doesn't understand would probably just ignore it, though. The suicidal stuff is heavy; very few people have suffered enough to read about euthanasia and understand that the person isn't always being irrational. There's an ethical space for this stuff. With that being said, you have support here, and I encourage you to thoroughly explore all options -- you seem like a bright person so I'm sure you will.

 

30 years ago I joined the ATA. I stopped giving them money after two years. I then decided to join again this year. I'm reading mostly the same articles from 30 years ago. Don't waste your money.

 

My greatest fear is botching the suicide. Also the day I succeed there will be a cure.

Your country allows euthanasia for 'tinnitus'? I've been fighting for 30 years. Don't get me wrong, when I habituate I live a better life. It is the 12-18 months of habituating that I struggle to live. My prayers are for better treatments or cure. That is why I am still here. Please do not do something rash without reaching out for help!

 

Thanks Zugzug, that is heartening to hear. There are people on Tinnitus Talk who showed courage in the past, which makes it easier for people like me to come out in the open & set the record straight about the severity of this disorder.

To be honest, it's more a question of frustration than courage. Nobody in my environment, whether it were friends of family, understood what I was going through. Some said that you could still ignore tinnitus if you put your mind to it. Some friends didn't want to get into touch for whatever reason. There was even one family member who thought that I was manipulating my parents by faking the severity of my disability for getting attention and what not.

This ignorance & lack of knowledge of some people about tinnitus made me mad as hell, so I though the only way to inform people is by writing something about how disabling tinnitus can be from a personal experience. Maybe it helps spread the message, maybe it won't prevent some people of getting tinnitus, but at least I tried.

You have been through a lot @Zugzug. I have read your messages about how crippling hyperacusis can be. Nobody can fully understand what you are going through. Even I can't. It's probably wishful thinking, but it may help raise awareness if more people like us on Tinnitus Talk write about our experiences on social media. I can't think of another way how people could understand the severity of our disability. Perhaps it may gain traction and change things for the better at the ATA, BTA, other tinnitus organisations, etc.

 

May I ask you what kind of help is offered to us? I really don't know where to turn.

My family and friends want to help, but they don't understand the condition and think that I'm being irrational when talking about how life is very hard to live and I can't enjoy nearly anything because this damned tinnitus.

Doctors only offer the "get used to it" mantra, psychiatrists offer drugs which may or may not be ototoxic.

I am not constantly suicidal, but from time to time when I have an other 2-hour-sleep kind of night, I imagine that it would be better to not exist, not just for me, but for my family as well. Tinnitus is wrecking their life too, not just mine.

Also, mad respect to you for fighting for 30 years, you must be a very strong person.

 

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.

 

Yes, it's allowed if you only mention to your GP that (1) you don't want to live and (2) suffer from a psychiatric disorder/dementia/physical condition. Tinnitus is approved as a physical condition, according to Dutch medical standards & my GP.

The only reason why I'm still alive is because of my parents and also because of OTO-413/FX-322. Hopefully, in a year or two, we will all find the relieve we all long for.

30 years is incredible. I agree with @Kriszti that you are one hell of a tough cookie. I do hope that you will hear silence soon!

 

@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?