Please Don't Say There's No Cure for Tinnitus

[fishbone]

@fishbone, I think about you every day.

Your thoughts above are so helpful to me - thank you.

Dear Greg,

you are not an ordinary man. You are a soft spoken hero that has the heart of gold, but the grit of a warrior. You may have not been born this way, but your afflictions did a few things to you. They made you more loving (wants to influence, lead and make it better for others) and it made you extremely strong.

I can identify with both of them, and I am amazed at how difficulties can shape and mold us into a better person.

You touch on the subject of being a good role model for the younger folks and spreading hope. This is something that I value as well. I value spreading hope, courage and the motivation to push through. I am always dealing with something that is very difficult, but the drive, willpower and drive to push through is always bigger.

I woke up this morning to a very difficult issue (truly heartbreaking), the ears are ringing like the spike from hell(this is an all day thing for me), but the mind is focused on the matter at hand.

I may write motivational stuff here and it may help some good people, but it also motivates me to keep going no matter what.

The tinnitus is not making it easy for me at all, but i have to keep it going. We have to keep it going.

My hope is my reaction or non-reaction towards my affliction.

 

[kingsfan]

Dear Greg,

you are not an ordinary man. You are a soft spoken hero that has the heart of gold, but the grit of a warrior. You may have not been born this way, but your afflictions did a few things to you. They made you more loving (wants to influence, lead and make it better for others) and it made you extremely strong.

I can identify with both of them, and I am amazed at how difficulties can shape and mold us into a better person.

You touch on the subject of being a good role model for the younger folks and spreading hope. This is something that I value as well. I value spreading hope, courage and the motivation to push through. I am always dealing with something that is very difficult, but the drive, willpower and drive to push through is always bigger.

I woke up this morning to a very difficult issue (truly heartbreaking), the ears are ringing like the spike from hell(this is an all day thing for me), but the mind is focused on the matter at hand.

I may write motivational stuff here and it may help some good people, but it also motivates me to keep going no matter what.

The tinnitus is not making it easy for me at all, but i have to keep it going. We have to keep it going.

My hope is my reaction or non-reaction towards my affliction.

Hi @fishbone. I just wanted you to know that your posts always give me strength. Thank you.

 

[Tasty]

No.

What about Deep Brain Stimulation?

 

[Frayact]

There may not be a cure, but there are definitely treatments. I know I sometimes sound as if I work for a pharmaceutical company (I actually don't), but I'm convinced that depression is a major cause of the buzzing and humming in my ears.

My doctor recently changed my AD's to Desvenlafaxine (generic of Pristiq) and Aripiprazole (generic of Abilify). It took a very long two months for both of these to kick in, but the humming in my head has finally stopped (for now). I also feel more like myself before my relapse back on March 27. I'm cautiously optimistic that the humming will not be an issue for the long run. (The last time it went away, it was four years before it returned). The mystery of why it returns will probably never be solved, but I'm just glad I don't feel as hopeless as I did two months ago. Of course, tomorrow I could wake up and be at the bottom of the dark well again if the noise returns. I still hear a slight hissing sound, but I habituated to that 25 years ago.

I just started rehearsals for a play (I'm a part-time actor), so I've got my work cut out for me on this one. Being around new people and focusing on a challenging project will hopefully take me further away from this nightmare of tinnitus. But if and when the humming does return, I'll deal with it one day at a time.

 

[dan]

What about Deep Brain Stimulation?

You wanna poke around inside your brain, go ahead. By a cure I mean you pop a pill, not drill through your cranium (might get worse tinnitus from all that bone conduction vibration).

 

[kingsfan]

You wanna poke around inside your brain, go ahead. By a cure I mean you pop a pill, not drill through your cranium (might get worse tinnitus from all that bone conduction vibration).

Sometimes I wonder if slamming my head against the pavement would work.

 

[Valerian Basel]

I don't think there will be a treatment for tinnitus in the next 5 or 10 years.

Science says that by 2050 it is expected that 1 in 4 people will suffer from hearing loss. So that's a a big social problem which is also going to cost a lot of money for the government. I think that in the future they should have a treatment for hearing loss instead of relying on the hearing aid.

 

[fishbone]

I always try to write posts, that give strength, motivation and hope to all those good people, that are dealing with this difficult ordeal.

In life, we can learn from our own experiences and from the experiences of others. Life is not a straight line, it is a line filled with zig zags, up and down, left and right. It is never straight, it's all a process, this process leads to the journey.

All of us are dealing with the process. Each day, we try to see how we can live a better life with the ringing that exists.

As someone that has been dealing with tinnitus for over three decades, my processes are more planned. My attitude towards the process is also different. This can be learned, it's a slow process. It's learning from our days that we live with our tinnitus. It's by moving forward and having those "small" wins. It's those "small" wins that can lead to a major accomplishment. It's about just hanging in there and moving forward.

The longer we live with our affliction, the wiser we can become. The more resilient we may become. The more accepting we may become. The more loving we can become. The more accepting of others we may become. The stronger we shall become.

Strength comes from being "YOU", loving yourself and taking care of what needs to be done on a daily basis.

Strength comes from making that "possible" adjustment, to push through another day with our lives.

Strength comes from moving forward. Keep moving forward!

 

[Tatsopa]

I warned people here against vaccination, but I guess nobody listens.

Yeah... I was forced to get that freaking vaccine (my son lives in another city and no vaccine = no train = no son). So I got two shots 4 months ago and guess what: vaccine is no more mandatory to take the train and I've been tested positive to COVID-19 two days ago.

My ears are ringing louder than usual (or maybe it's an internal anger scream)...

 

[Frayact]

Yeah... I was forced to get that freaking vaccine (my son lives in another city and no vaccine = no train = no son). So I got two shots 4 months ago and guess what: vaccine is no more mandatory to take the train and I've been tested positive to COVID-19 two days ago.

My ears are ringing louder than usual (or maybe it's an internal anger scream)...

Different people have different reactions. I've had both vaccines and a booster. I had no ill side effects whatsoever, and my tinnitus wasn't affected in the least. A friend of mine said he had flu-like symptoms after the second shot. So everyone has an experience.

 

[tpj]

Different people have different reactions. I've had both vaccines and a booster. I had no ill side effects whatsoever, and my tinnitus wasn't affected in the least. A friend of mine said he had flu-like symptoms after the second shot. So everyone has an experience.

It's too bad everyone didn't have a choice. No one should have been mandated to have a vaccine to keep their job or see their child.

 

[Lane]

I've had both vaccines and a booster

Some people's reactions to the vaccine and/or boosters don't always show up right away. Two to three shots might go OK, no guarantees on the the next one. The damage from these shots seem to be cumulative.

 

[GeorgeLG]

I think that this forum represents different things to different people.

Some come here to gather information about this new noise in their head. A lot of people lurk without registering. Some come to vent their personal frustration with their affliction. Some come here for support, looking for someone who understands and cares. Some people are naturally kind and caring and offer support and meaningful suggestions. Some inject hit and run comments and personal attacks. All of society are found in the 35,000 members here. It is unrealistic to imagine such a large group without some of the vitriol we find in everyday life.

That said, I think that Greg's original post should be considered. Some kind, good natured and desperate people come here looking for answers and help. For some of them, they will get better and the things that they learn here will help them. For some, if the early things they read are the most negative and hopeless comments that are often written, they may adopt this hopelessness and despair. This would be especially tragic in a child. Imagine a silent lurking reader who leaves here desperate and harms themselves when relief was possible. Some of you are naturally negative and/or have developed a high level of despair from your suffering which is real and tragic. I will join Greg in asking you to try to look outside yourself and not to just declare all of this as hopeless and all ending in suicide but rather understand that we deeply affect others with what we write here and if we project our own hopelessness and despair constantly it will hurt other people. We have to try and be better than that, we have an obligation as human beings to consider the effect of our words and actions on others.

If you are incapable of looking outside of your suffering at this point in your life then use the more negative threads as a mechanism for your venting and sharing and don't attempt to dash any and all hope in threads where people are trying to get better or find some relief or share information. I'm all for realism and accuracy as I am an engineer by education but I'm not down with harming people for self medication or sport. We can be better than that. Be better than that. Others can and will get better, be happy for them. If that has not been you, then there is no gain from trying desperately to drag every member here down to a lowest common denominator of desperation and hopelessness. This is not a competition about who suffers more or who is less understood. I get all the same shit you guys do, "oh I have that it's nothing, go home and live with it, it's all in your head, there will be no cure". I for one refuse to give up, to ever believe that I can never see an improvement. I am going through the worst hellish spike since this started that was caused by another uncaring person but this is life and I will look past this and keep learning how to get better. We can all do this.

Lastly, you do not have this because you are weak. This is not all your fault. That said, we start with a real and serious illness that can be devastating. After it sets in then your attitudes and emotions about this real problem deeply affect your total outcome for all sufferers regardless of the loudness and type of tones. There is no magic threshold for sufferers above which we are legit and below which all should be dismissed as cry babies who don't understand what suffering is. If others have been able to get past this and get back to life do yourself a favor and consider the missed opportunity for you to do the same regardless of tones and loudness.

If you are here, then you are suffering. Let's be a community of people with compassion with an attitude of service to others, even on our worst days.

George

 

[dan]

I wonder how many Ukrainians and soldiers will get tinnitus from constant shelling. Although if you notice, most of them are walking around with low profile earmuffs on (22-23 dB protection at most).

 

[kingsfan]

I wonder how many Ukrainians and soldiers will get tinnitus from constant shelling. Although if you notice, most of them are walking around with low profile earmuffs on (22-23 dB protection at most).

That was high on my mind after the Beirut explosion.

 

[Tasty]

You wanna poke around inside your brain, go ahead. By a cure I mean you pop a pill, not drill through your cranium (might get worse tinnitus from all that bone conduction vibration).

Yeah, I just want that goddamn thing inside my head, honestly.

But well, I don't even know when it will become available. I just want some hope.

(might get worse tinnitus from all that bone conduction vibration).

Nope, it won't. I don't have hearing loss. My tinnitus is caused by a neurological disorder.

 

[Lurius]

@GeorgeLG, I have to say - I hate, hate, hate people who throw severe sufferers under the bus and especially in the success story section, where people make threads like "Habutiation *Is* Real" and nonsensical stuff like that. I detest toxic positive people and all that nonsense.

You are the first person here on this forum I've seen who has a positive message but who also comes off as 100% genuine. I believe you have good intention and kindness in your heart. For some reason, your positivity does not trigger me in any way. I believe your intention and desire to help. You have said many wise things.

 

[GeorgeLG]

@GeorgeLG, I have to say - I hate, hate, hate people who throw severe sufferers under the bus and especially in the success story section, where people make threads like "Habutiation *Is* Real" and nonsensical stuff like that. I detest toxic positive people and all that nonsense.

You are the first person here on this forum I've seen who has a positive message but who also comes off as 100% genuine. I believe you have good intention and kindness in your heart. For some reason, your positivity does not trigger me in any way. I believe your intention and desire to help. You have said many wise things.

Thank you for the kind words.

George

 

[Cory_]

I think a lot of people just want a treatment or a medication that will help significantly. They aren't looking for a total cure. They just wanna be able to breathe again.

I, for instance, have several tinnitus tones. There's only one, though, that drives me mad. It's the one that sounds and feels like electricity shocking me all the time. If I could just quiet that one tone significantly, I'd be okay, even with the vibrating hum, dentist drill, and jet engines that oscillate.

The difference is that those tones don't trigger painful sensations, but my electrical one does. It feels like torture. I have severe hyperacusis, too. If I could get rid of that bad tone, I'd feel like habituation was plausible or that I could just learn to live with the noise.

Do you think any type of treatment will come soon to help quiet things? Not a cure, but a treatment.

I strongly agree. Some people (not naming names) strawman us as "expecting an easy total and complete fix". I just say bring it down to some level of sanity and then habituation will do the rest.

 

[ThomasF]

A cure is possible. Much of the science makes sense thus far and the interest from the medical research community is growing. A cure might not manifest immediately but there being a cure is not an unreasonable thought.

 

[Warchop]

By saying there's no cure for tinnitus in my opinion is not showing an engendering sympathetic attitude.

By saying there's no cure for tinnitus in my opinion is not realizing reactions and actions of others.

Any negative opinion expressed to an audience could be harmful to another's well-being.

I have seen many where treatment of a physical problem cures tinnitus.

I talk to children with tinnitus within a very large school district. Sometimes they will visit a health message board. When they see a message saying that tinnitus cannot be cured, sometimes serious implications arise.

If a guy can cobble together a PCB and lessen his tinnitus through science and research, a cure/effective treatment is literally right around the corner. It's closer than you think.

 

[tpj]

A cure is possible. Much of the science makes sense thus far and the interest from the medical research community is growing. A cure might not manifest immediately but there being a cure is not an unreasonable thought.

Not according to an ENT I saw recently. He said tinnitus was too complex. I pray you're right and that he is wrong.

 

[GeorgeLG]

My thoughts on this:

Tinnitus is a complex problem with more than one mechanism so it is a hard problem but a cure is certainly possible. If we can hurl 3 dudes in a metal can at the moon in 1969 with a 160 million horsepower machine with less technology than your cell phone then it's possible for sure. AIDS, Hep C, polio, TB were all hard problems that got solved. I hope there is a cure. I want there to be a cure and for the real suffering to stop.

That said, there are things we can do now to at least make the whole problem more manageable, to get some of our life back. Not everyone can get total relief, some suffering is really bad. I believe that everyone can get relief though at some level. If it can't be total its not your fault, you are not defective and your suffering is real but we do need to work the problem the best we can using the tools that are available now. Relief now and cure later is a reasonable objective.

I for one have not eliminated the problem but my life is better than when this started.

George

 

[Tasty]

Not according to an ENT I saw recently. He said tinnitus was too complex. I pray you're right and that he is wrong.

What exactly did he say? Please ask him next time how tinnitus happens in detail, I'm sure he has no answer as well lol.

A cure isn't impossible but it's not around the corner, I'd say a solid 5 to 10 years away at least.

 

[tpj]

What exactly did he say? Please ask him next time how tinnitus happens in detail, I'm sure he has no answer as well lol.

A cure isn't impossible but it's not around the corner, I'd say a solid 5 to 10 years away at least.

I can't remember his exact words but it was similar to what George LG said in the post above yours.

I have no plans to see him again. The only reason I was there was to try and get an exemption from my second mandated COVID-19 vaccine.

 

[AxEars]

Science and funding are a funny relationship. No politics from this next sentence, it's just what happened in our lifetimes: The world was shut down with COVID-19. The science community did nothing but fund and work together on something to get the world as close to normal as possible. The vaccine was ready in a year. History is rife with necessity being the mother of invention, and through it is a catalyst of propelling the world forward. Every major war has done that. Every major disease has done that. And there are other times that a pure accident of a breakthrough happens, like Penicillin.

Has anyone noticed that the full genetic mapping of the human genome has had Venture Capital funding direct their attention to regenerative therapy? There's a curve with technology like this, similar to what we saw with the internet. We'll go from dial-up (TRT/Hearing Aids/etc) to designer drugs/treatments that target areas of the brain or nerves (Universal Wi-Fi, Starlink, etc). For long term, severe sufferers, you'd all take a 40% reduction in loudness. For moderate, that means mild. For mild, that means a possible remission. Notice how I said no cure. Not for a condition that is a fingerprint to your respective brain.

When have you ever seen such a strong shift in the amount of regenerative hearing loss trials? Everyone wants a piece of the action, and some of these companies understand that it won't cure or even treat every single case the way they can treat a broken hand. These companies do understand that spinning up someone's own cells costs very little compared to what the treatment will cost the patient/insurer. That's the incentive. The customer will never run out when it comes to tinnitus or accidental sound exposures, not with Millennials and Gen Z using earbuds/headphones nearly non-stop. There's a there there, as they say. Militaries are also trending towards the idea that they can regenerate their soldiers so they can keep more of them, considering young people have very little interest in volunteering (I'm from the US). Hearing loss is the #1 symptom of serving in the military. The other major symptom is depression/anxiety/suicide - they are looking at Psilocybin and MDMA to treat military service members emotional issues.

I see XEN1011 and see a drug that no longer attacks a broad brush brain chemical like Serotonin and instead goes after a specific brain potassium channel with little to no side effects. We have multiple human trials for regenerating literal hair cells, which if successful would likely bring nerves back on line. When the brain gets a push in the right direction, it usually keeps going. It's plastic. And you won't see the results in 2 weeks, more like 6 months. But it means a modicum of symptoms being turned back like a clock. None of this was possible 25 years ago. It was talked about in peer-reviewed medical journals with no way to put it into practice. Now, they're practicing it. Practice makes perfect.

Humans are horrible at predicting the future, but they can spot trends. I see a trend! A trend towards a breakthrough medicinal technology that was a Sci-Fi pipedream 25 years ago becoming the hot new space for doctors and researchers sprint towards. I see billions poured into a niche space (and it's happening when the money supply is drying up!). I see tangible hope. If you've had severe tinnitus for 8-18 years, that's another 8 years until 2030. You've done it for this long, so keep going. If you've had tinnitus and it's horrendous, you're tougher than the toughest I know, and I know some tough SOBs. They only have to be tough in a given moment or an event, not 24/7 to endure this condition. They don't sleep with a concert of one or multiple tones in their head. They'd be too dumb to hear it!

Yes, I'm new. You don't need to remind me of anything about levels of tinnitus and a lifetime of suffering. I've read your posts. I'm rooting harder for you than I am myself. I'm new with a mild baseline that is sometimes not heard all day until bedtime, and my spikes aren't terrible. They happen at night for maximum 2-3 hours. It's rare I get a spike that sounds like the night of the onset - it was 10/10 scary, but it faded into 0/10, 2/10 after 3 weeks. Firework went off on 7/3 near me and I had a week of 5/10 with spikes of 8/10. But my baseline seems to be returning. As I write this I barely hear anything in a 50 dB with an A/C running down the hall.

Something is coming. This much funding and regenerative medicine entering the mainstream? Something is most definitely coming. Moore's Law seems to be knocking on the doorstep of sensory regeneration. Hold strong my friends.

 

[GuitarMan]

I find it hard to believe that there would never be a cure. There are different types of tinnitus and different causes for it and I can only speak from my own personal experience and what I see as common sense. I have unilateral tinnitus caused by exposure to loud sounds over several decades. However, I also believe there is a physical component because I can make the ringing louder by pressing a certain spot behind my ear or by tilting my head back and to the side. This tells me that whatever I'm pressing, nerves, blood vessels, muscles, etc, are at least partially responsible and if I can make it worse by increasing pressure and tension there, it can be made better by decreasing the pressure and tension.

The audiologist and ENT I've seen both tell me there's no cure and were entirely uninterested in the somatic aspects of my tinnitus. They basically brushed it off.

I do understand the difficulty in "curing" something that manifests differently in different people and has numerous different causes. It's basically trying to find several cures for several different ailments. But I'm not convinced that it can't be done although some cases may be easier to "cure" than others depending on the cause.

 

[beefling]

@AxEars, really well articulated post. I needed to read that. In a bad spot at the moment, and I need any shred of optimism I can get.

Thanks for taking the time to type it out.

 

[Michael Leigh]

The audiologist and ENT I've seen both tell me there's no cure and were entirely uninterested in the somatic aspects of my tinnitus. They basically brushed it off.

Unfortunately @GuitarMan, your ENT and audiologist are correct, there is no current cure for tinnitus, whether it is noise induced or caused by an underlying medical condition within the auditory system. The best one can hope for is learning to habituate to it and many people do as you did for many years with unilateral tinnitus.

Your tinnitus has now become a problem because it has increased but hopefully with time it will calm down. This can be achieved with the information I have given you and if necessary you may have to seek the help of an audiologist that specialises in tinnitus treatment and management. The thing you need to do is to try and prevent it getting worse by taking the precautions I have mentioned. Not to listen to audio through any type of headphones even at low volume and be careful of exposure to loud noise.

The reason you are able to manipulate the sound of your tinnitus by pressing on a certain spot behind your ear and tilting your head, is because nerves in the auditory pathway pass through these locations. Some people are able to make their tinnitus louder or quieter by opening and closing of the jaw or twisting of the neck. This is because nerves in the auditory system encircle the jaw joint. They are also located at the 8th cranial nerve close to the brain stem and extends into the back of the neck. It is a sensory nerve which consists of two divisions. I have covered this in Tinnitus, A Personal View.

My advice is not to deliberately manipulate the sound of your tinnitus as you could make it more intrusive.

Michael

 

[AxEars]

@AxEars, really well articulated post. I needed to read that. In a bad spot at the moment, and I need any shred of optimism I can get.

Thanks for taking the time to type it out.

You're more than welcome buddy

I have a mild but reactive type, which I've learned very recently. So I might be around for a long time. But I know that if it levels out or gets worse, something is coming to at least make life manageable.

One day at a time.