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

#151
dan said:
I was like you as you were in January - loud but stable tinnitus... I had an ok QoL. I had a girlfriend, I drove long distances and listened to music in my car. Aaaand I still took that for granted! I thought hell this shit can't get worse than it is... I had it for a decade and I accepted it after 2 years. But since 3 years ago, after being careless, it began to worsen and worsen right in front of my eyes and is STILL getting worse. I now cannot leave the house without earmuffs. I cannot do any of the things I did with my old severe tinnitus. The only thing left to do is go into the woods but I will not be able to survive because wilderness survival can get noisy.

So when you say you can deal with your current loud tinnitus, if only you could listen to music and mask it, well that is a good thing because severe tinnitus is unmaskable anyways.
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Does your tinnitus worsen permanently from low-moderate noises? Or get worse on its own?
 
#152
GeorgeLG said:
When I got started, my thoracic spine was so rounded and my head so far forward that I could not lay flat on my back on a carpeted floor, I could not get my head to the ground. Now I can but this takes it up a notch.
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@GeorgeLG -- I've come to believe structural issues of all kinds are responsible for (or affect) a myriad of health conditions, including tinnitus. If you ever want to pursue this further, look into the work of Pete Egoscue. Jack Nicholas credited him with saving his golf career. There are a number of Egoscue clinics all over the country, and there are books written on Egoscue "e-cises". Their #1 "e-cise" is called the Egoscue Tower. There are some good YouTube videos on it.
 
#153
dan said:
I was like you as you were in January - loud but stable tinnitus... I had an ok QoL. I had a girlfriend, I drove long distances and listened to music in my car. Aaaand I still took that for granted! I thought hell this shit can't get worse than it is... I had it for a decade and I accepted it after 2 years. But since 3 years ago, after being careless, it began to worsen and worsen right in front of my eyes and is STILL getting worse. I now cannot leave the house without earmuffs. I cannot do any of the things I did with my old severe tinnitus. The only thing left to do is go into the woods but I will not be able to survive because wilderness survival can get noisy.

So when you say you can deal with your current loud tinnitus, if only you could listen to music and mask it, well that is a good thing because severe tinnitus is unmaskable anyways.
Click to expand...
Yeah my tinnitus is unmaskable even if it wasn't reactive and especially now with how loud it is. I would describe it as someone having a tea kettle in your head on boil. No way to focus away from it any second of the day. It consumes all your thoughts no matter how hard you try to stay busy. Even by itself without reactive and the loudness hyperacusis... it would be brutal everyday to live with, but being able to listen to music at all would help to some degree I assume.

I am so sorry you have experienced the same thing I have. I have lost all hope to recover from this now that it's gotten so bad. I have no wish to die, but being stuck inside 24/7 with this is insane. Watching everything I worked for get sold and bills add up.

I love you brother. I am so sorry for all that are hurting.
 
#156
Travis Henry said:
Yeah my tinnitus is unmaskable even if it wasn't reactive and especially now with how loud it is. I would describe it as someone having a tea kettle in your head on boil. No way to focus away from it any second of the day. It consumes all your thoughts no matter how hard you try to stay busy. Even by itself without reactive and the loudness hyperacusis... it would be brutal everyday to live with, but being able to listen to music at all would help to some degree I assume.

I am so sorry you have experienced the same thing I have. I have lost all hope to recover from this now that it's gotten so bad. I have no wish to die, but being stuck inside 24/7 with this is insane. Watching everything I worked for get sold and bills add up.

I love you brother. I am so sorry for all that are hurting.
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I am sorry that you are having such a hard time. I don't know where your head is at on working the problem, I know how exhausting all of this can be.

As mentioned, there are so many things to try but you may want to consider starting with eliminating anything that might be amping this thing up: Caffeine, salt, sugar, meds, supplements, foods. Keep a log and try to give your body a break, suspect everything as we are all different. Salt really spikes me as does certain vitamins. Potatoes makes me sick, you never know what it can be. Then get enough quality sleep, this is also a big one for me. I slept crappy last night and my tinnitus is very loud today. After that you can look for key deficiencies like B12 because if you're lucky and have one of these, then there is relief that is possible. Do you have any structural issues like posture or TMJ? There are possibilities there as well. There is more but stopping anything that is "salt on the wound" could get you more stable and better able to cope.

Trying to offer help without overwhelming. Love you brother.

George
 
#157
Lane said:
@GeorgeLG -- I've come to believe structural issues of all kinds are responsible for (or affect) a myriad of health conditions, including tinnitus. If you ever want to pursue this further, look into the work of Pete Egoscue. Jack Nicholas credited him with saving his golf career. There are a number of Egoscue clinics all over the country, and there are books written on Egoscue "e-cises". Their #1 "e-cise" is called the Egoscue Tower. There are some good YouTube videos on it.
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Just ordered Pete's book.

Thanks,
George
 
#158
SmallRonnie said:
What treatments have you tried so far? There are a huge amount of things you can try. You should try to get on to a trial for something like FX-322 when it opens up again if it gets to Phase 3.
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Not sure I'll make it that long. Laser therapy and more noise exposures made me competely homebound. ENTs prescribed Valium and antidepressant, which I tried not to take at all, but the few times I did, they made me worse.

I've tried PRP injections to AA joint and all around neck and TMJ area, corticosteroids to occipital nerve, acupuncture at a pain clinic (I said no Lidocaine but I think they gave me Lidocaine and not the steroids I asked for), supplements...

I got pushed towards drugs which made everything worse. I let them talk me into benzo use for sleep and now I'm at a deathly ringing level.
 
#159
Travis Henry said:
Not sure I'll make it that long. Laser therapy and more noise exposures made me competely homebound. ENTs prescribed Valium and antidepressant, which I tried not to take at all, but the few times I did, they made me worse.

I've tried PRP injections to AA joint and all around neck and TMJ area, corticosteroids to occipital nerve, acupuncture at a pain clinic (I said no Lidocaine but I think they gave me Lidocaine and not the steroids I asked for), supplements...

I got pushed towards drugs which made everything worse. I let them talk me into benzo use for sleep and now I'm at a deathly ringing level.
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Clomipramine is probably something you should try. It helped a good few people. You can still try stem cells/exosomes but it is very dependent on which clinic you go to. There are huge variances in the type of stem cell and amount administered.

I'm not a doctor at all though so I could be giving you horrible advice. Saying that, I would look into peptides if I were you. Something like BPC-157 or Cerebrolysin. There are threads on both of them here. Some people get bad side effects but some people have massive improvements. Talk to a neurologist about them at least. They heal tissue and nerves.

There are other things you can try too and there will be more things again in the future if you just stick it out a while. The Clomipramine was mainly for pain hyperacusis I think but people did see it help their tinnitus. Some of the other antidepressants have been good for people too.
 
#160
Travis Henry said:
Not sure I'll make it that long. Laser therapy and more noise exposures made me competely homebound. ENTs prescribed Valium and antidepressant, which I tried not to take at all, but the few times I did, they made me worse.

I've tried PRP injections to AA joint and all around neck and TMJ area, corticosteroids to occipital nerve, acupuncture at a pain clinic (I said no Lidocaine but I think they gave me Lidocaine and not the steroids I asked for), supplements...

I got pushed towards drugs which made everything worse. I let them talk me into benzo use for sleep and now I'm at a deathly ringing level.
Click to expand...
If our system gets over-loaded with tons of different variables, it is possible to get the opposite effect that we may seek. I read your words and fully understand your feelings. You are almost at your 1 year mark with tinnitus, I had a rough year as well (when I first got tinnitus close to 35 years ago) and what really helped me was talking to my audiologist and just talking it out with people that would listen to my concerns.

The issue for some with tinnitus, is that it can become an obsession. Whether we can barely hear it (we could be zoned in and focus on that sound) or it is impossible to not hear it (I am beyond hell level).

The reason we scan, listen or possibly obsess over it, is because our minds are not busy. Our minds could be sitting idle and not much activities are going on. This can possibly make people just focus on their ringing more. Focusing in on odd sounds and weird noises can possibly affect our moods. It used to do it to me as well, I have been through my major ups and downs with the ringing like all you good people have.

My stress, emotions and dislike for these tones and sounds used to get me upset as well. But, after years, decades of living with this thing, it made me understand that, "Tinnitus feeds off stress."

That feeding can bring on some horrible spikes. I am already at beyond hell level, each day is a challenge.

The ringing is beyond disruptive and maddening. As loud as this "HELL" is, my mind is stronger than the tinnitus. My inner drive is stronger than the tinnitus.

I wake up, with beyond severe ringing each day, it's like a spike 24/7. It's not at all exciting to start the day with such horrible, extreme ringing. BUT it's a reality I face and some of you good folks face.

My early dealings with tinnitus (barely heard, only in a very quiet room) set the stage for my life and how I deal with an aggressive, multiple tone tinnitus these days.

Stay strong my friend. We are rooting for you and those that need lots of love and support.

Know this: Each day, each "small" win is huge for us. We just have to go after those "small" wins.

Each day, I try to just keep moving forward...
 
#161
fishbone said:
If our system gets over-loaded with tons of different variables, it is possible to get the opposite effect that we may seek. I read your words and fully understand your feelings. You are almost at your 1 year mark with tinnitus, I had a rough year as well (when I first got tinnitus close to 35 years ago) and what really helped me was talking to my audiologist and just talking it out with people that would listen to my concerns.

The issue for some with tinnitus, is that it can become an obsession. Whether we can barely hear it (we could be zoned in and focus on that sound) or it is impossible to not hear it (I am beyond hell level).

The reason we scan, listen or possibly obsess over it, is because our minds are not busy. Our minds could be sitting idle and not much activities are going on. This can possibly make people just focus on their ringing more. Focusing in on odd sounds and weird noises can possibly affect our moods. It used to do it to me as well, I have been through my major ups and downs with the ringing like all you good people have.

My stress, emotions and dislike for these tones and sounds used to get me upset as well. But, after years, decades of living with this thing, it made me understand that, "Tinnitus feeds off stress."

That feeding can bring on some horrible spikes. I am already at beyond hell level, each day is a challenge.

The ringing is beyond disruptive and maddening. As loud as this "HELL" is, my mind is stronger than the tinnitus. My inner drive is stronger than the tinnitus.

I wake up, with beyond severe ringing each day, it's like a spike 24/7. It's not at all exciting to start the day with such horrible, extreme ringing. BUT it's a reality I face and some of you good folks face.

My early dealings with tinnitus (barely heard, only in a very quiet room) set the stage for my life and how I deal with an aggressive, multiple tone tinnitus these days.

Stay strong my friend. We are rooting for you and those that need lots of love and support.

Know this: Each day, each "small" win is huge for us. We just have to go after those "small" wins.

Each day, I try to just keep moving forward...
Click to expand...
Did you ever have reactive tinnitus and loudness hyperacusis? If so, how long did it last?

I appreciate your words. This, not being able to listen to anything and everything spiking and worsening my tinnitus, has me beside myself. Tinnitus is so loud and intrusive there is no way to not focus on it. It's a sensation in my head now. Love y'all so much!
 
#164
fishbone said:
I am dealing with reactive tinnitus and hyperacusis as well.
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Hi fishbone. Well you do go to the gym (universal machines clanking everywhere) and practice full contact karate at a karate school (kiyaaai!!!!), so not sure how bad you hyperacusis is to be honest...

Could you explain the nature of your hyperacusis and reactive tinnitus? That would be helpful. Thanks.
 
#165
Travis Henry said:
I have lost all hope to recover from this now that it's gotten so bad.
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I'm afraid you are right. At this stage it most likely won't go back to what it was. I get this gut feeling of its permanency but I still pray, is there an alternative other than being Tinnitus Talk's next farewell victim... Like I just can't see it magically going 180. I mean before my worsening I tolerated a damn Pomeranian barking 3 feet at me! Now I struggle to shut my damn car door while wearing Peltor X5A's. I noticed my hyperacusis getting worse in the last year.

I read your posts about being trapped in your house and it's the same for me, as I also live on road and people honk and activate their door lock beeps and it HURTS me even through closed windows. So wtf are we supposed to do now... I have to pad up my windows with blankets, pillows and mattresses like a freaking insane person.
 
#167
dan said:
Hi fishbone. Well you do go to the gym (universal machines clanking everywhere) and practice full contact karate at a karate school (kiyaaai!!!!), so not sure how bad you hyperacusis is to be honest...

Could you explain the nature of your hyperacusis and reactive tinnitus? That would be helpful. Thanks.
Click to expand...
Not all gyms are loud. As someone with tinnitus, you do have to try to not be near machines/equipment that are pretty loud.
 
#169
dan said:
I'm afraid you are right. At this stage it most likely won't go back to what it was. I get this gut feeling of its permanency but I still pray, is there an alternative other than being Tinnitus Talk's next farewell victim... Like I just can't see it magically going 180. I mean before my worsening I tolerated a damn Pomeranian barking 3 feet at me! Now I struggle to shut my damn car door while wearing Peltor X5A's. I noticed my hyperacusis getting worse in the last year.

I read your posts about being trapped in your house and it's the same for me, as I also live on road and people honk and activate their door lock beeps and it HURTS me even through closed windows. So wtf are we supposed to do now... I have to pad up my windows with blankets, pillows and mattresses like a freaking insane person.
Click to expand...
I absolutely love my life too. Well I did and still could if this went away. I dunno what to do anymore. I can't believe this is real life and I've turned into a suffering broken record. I pray for us all everyday. I can't even tolerate a fan on lowest settings. I'm burning up all day in my house because I have to rely on the main A/C. Every second of everyday is torture. If only I had researched when I heard it only in silence :( and found the horror. God dammit. So much regret. I love you all so much.
 
#170
Travis Henry said:
I absolutely love my life too. Well I did and still could if this went away. I dunno what to do anymore. I can't believe this is real life and I've turned into a suffering broken record. I pray for us all everyday. I can't even tolerate a fan on lowest settings. I'm burning up all day in my house because I have to rely on the main A/C. Every second of everyday is torture. If only I had researched when I heard it only in silence :( and found the horror. God dammit. So much regret. I love you all so much.
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@Travis Henry, most of us didn't know better, I didn't know better. What's happening to you sucks but you didn't do anything wrong, the awareness about this issue is crap in general and when we are young most of us probably would not have listened anyhow. What you're going through is terrible but don't beat yourself up, almost all of us didn't know much about any of this until we got here. I hope you get some relief, I'm pulling for you.

George
 
#172
A book called 'Neck Crisis: Pain relief in the computer era' by Jeremy M Rethan gives a very convincing explanation about the relationship between posture and tinnitus.

When bending forward and down towards the computer, the neck muscles must pull back and this posture being maintained for weeks and months results in changes in muscles, bones and discs. The natural C-shaped neck curve (cervical lordosis) is slowly becoming straight which results in stretching of the vertebral arteries. Contains studies in which instruments have measured decreased blood flow in those arteries when the lordosis is lost. When tinnitus is not fully related to hearing loss from noise and medications, 75% have physical (neck and jaw) crossovers often caused by decreased vertebral arteries blood flow from improper posture, lifting and bending head, whiplash or sleeping on one side. Disc degeneration is also reported to lead to nerve compression which isn't helping.

Neck care recommendations such as cylindrical pillows to help regain the neck C shape. Light self-massages. Improving sleep quality. Laptop- keyboard riser so that screen is heightened at eye level. Ears should be aligned with your shoulders and hips. Nerve blocks often don't help.

Blood flow - blood pressure - hypertension - stress - reactive tinnitus - hyperacusis - c spine straightening - SCM muscle imbalance - vertebral artery - sleeping on one side - COVID-19 vaccine, could have input crossover associations even with a history of noise exposure and medication use.

@Travis Henry, a cylindrical pillow from Amazon - sleep more on opposite history side. This may help as with crossovers, if your tinnitus isn't fully from noise exposure and/or medication use/withdrawal.

pillow.png
 
#174
Lane said:
@GeorgeLG -- I've come to believe structural issues of all kinds are responsible for (or affect) a myriad of health conditions, including tinnitus. If you ever want to pursue this further, look into the work of Pete Egoscue. Jack Nicholas credited him with saving his golf career. There are a number of Egoscue clinics all over the country, and there are books written on Egoscue "e-cises". Their #1 "e-cise" is called the Egoscue Tower. There are some good YouTube videos on it.
Click to expand...
@Lane, I am about half way through this book and I am so convinced that this applies to me that I am signing up for online analysis to help me with alignment. I believe that if I correct my extreme forward head posture that I will get relief of my pain hyperacusis. Thank you for this excellent suggestion. You really hooked me with the Jack Nicholas reference.

George
 
#177
dan said:
I beg to differ. In all my 40 years I have not seen a "quiet" gym. If the sound of 5 treadmills going at once don't bother you, then you don't have hyperacusis. Some people have loud stable tinnitus.
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I wear Peltors to the gym now.. I had to let my ego go which was fucking brutal. But I'll let it go for my sanity any day.
 
#179
dan said:
I beg to differ. In all my 40 years I have not seen a "quiet" gym. If the sound of 5 treadmills going at once don't bother you, then you don't have hyperacusis. Some people have loud stable tinnitus.
Click to expand...
I have loud stable tinnitus (mostly stable) but I have pain hyperacusis that fluctuates wildly. When it's good I can drive without earplugs but when it's bad I get pain through earmuffs.
 

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