Suicidal

[Zugzug]

How is it possible to diagnose that these symptoms are coming from an autoimmune disease in the inner ear?

It's not, which is why I have my listed cause as "Unknown." The autoimmune part is based on my medical history and some positive blood tests. There's a real possibility that I have Sjogren's or Lupus. If I didn't have a history of chronic pain, dryness, etc. which is consistent with autoimmune diseases, I would hold less of a belief in my hearing problems being autoimmune.

What I do know: A switch has been flipped. Reducing stress can't flip it off. It has cycles, with an overall worsening with time. And it definitely was not noise induced.

Another red flag: At the beginning of my hearing problems, I mostly had severe balance problems. When I took Prednisone, they want away completely. They then came back after I stopped. That's sort of a bad sign.

 

[Zugzug]

@PeteJ :

Have you considered trying Alpha Lipoic Acid? There are clinical trials that show it helps diabetics with neuropathy. See
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2836194/

I know you said cost for supplements is an issue for you. If you buy the supplements and capsules separately, you may be able to perform a relatively inexpensive experiment under the guidance of a professional.

 

[FGG]

It's not, which is why I have my listed cause as "Unknown." The autoimmune part is based on my medical history and some positive blood tests. There's a real possibility that I have Sjogren's or Lupus. If I didn't have a history of chronic pain, dryness, etc. which is consistent with autoimmune diseases, I would hold less of a belief in my hearing problems being autoimmune.

What I do know: A switch has been flipped. Reducing stress can't flip it off. It has cycles, with an overall worsening with time. And it definitely was not noise induced.

Another red flag: At the beginning of my hearing problems, I mostly had severe balance problems. When I took Prednisone, they want away completely. They then came back after I stopped. That's sort of a bad sign.

Consider trying antivirals, seriously.

I have severe loss of function in my right vestibular nerve (unrelated to my hearing issues) after frequent vestibular migraines. I was dizzy all the time and had frequent full vertigo attacks.

This month it will be a year without an attack. I took 800mg Acyclovir (per Dr. Gacek's Meniere's study though it turned out i don't have Meniere's) three times a day for a few months and then tapered to once a day maintenance. I have had chronically high Epstein-Barr titers and i definitely think it was related in my case.

Link to study: https://pubmed.ncbi.nlm.nih.gov/25940200/

Didn't at all help my hearing but it was a relief not to lose anymore vestibular function.

 

[Born To Slay]

The constant pain in my left ear and the joint with the upper cheekbone is just unbearable. I am so tired of this.

I don't know how long I can deal with this. Plus loud tinnitus.

I think it's a severe case of TMJ-like symptoms but doesn't seem to match others' here. Why are ENTs paid so much if they can't help with these conditions?!?

I think it's been over a week or two, straight, with severe ear pain and no relief or subsiding. Narcotics should be offered for pain like this. I was advised to consult pain clinics but each city/country is different and I don't see any mention of ear pain on online sites for pain management. I am afraid that they won't be willing to help me.

I also want a solution and if there isn't one, I ultimately WANT SUICIDE if that is the only way to stop this pain condition. The tinnitus is bad enough that I experience this, too!

Do they say anything about chronic pain though? Some websites say they treat that separately from other types of pain.

For example, my local clinic says they treat:
"Chronic pain (unknown etiology)"

 

[Zugzug]

Consider trying antivirals, seriously.

I have severe loss of function in my right vestibular nerve (unrelated to my hearing issues) after frequent vestibular migraines. I was dizzy all the time and had frequent full vertigo attacks.

This month it will be a year without an attack. I took 800mg Acyclovir (per Dr. Gacek's Meniere's study though it turned out i don't have Meniere's) three times a day for a few months and then tapered to once a day maintenance. I have had chronically high Epstein-Barr titers and i definitely think it was related in my case.

Link to study: https://pubmed.ncbi.nlm.nih.gov/25940200/

Didn't at all help my hearing but it was a relief not to lose anymore vestibular function.

That's a good point. For a long time, I was looking into Meniere's treatments to see if there was overlap. I asked my ENT about antivirals and he scoffed at me. I ended up trying L-Lysine, which is used for Herpes Simplex Virus control. It didn't help.

The balance problems (which I no longer have) were more like disequilibrium -- like being constantly drunk. There weren't episodes to it.

Anyways, I may add Acyclovir as something to try. Thanks for the suggestion. As an aside, you seem to know a lot about the biomedical research -- maybe I will learn more with time.

 

[Capstan]

They must not read the suicide thread...

https://qz.com/1407287/giving-up-on-life-can-lead-to-actual-death-in-less-than-a-month/

 

[Contrast]

I'm going to leave in a few weeks, my main task is pretty much done.

 

[Capstan]

I'm going to leave in a few weeks, my main task is pretty much done.

Where are you going? Can I go too?

 

[Contrast]

Psychology and psychiatry address every untreatable disease.

Just change the mindset and tweak their brain chemistry and get back to work. The disease you are suffering from is not modified in the slightest.

 

[Orions Pain]

If only there was a pain free option to just disappear. Like can I please just get an IV drip of Fentanyl and slip away. I've had enough.

 

[FGG]

If only there was a pain free option to just disappear. Like can I please just get an IV drip of Fentanyl and slip away. I've had enough.

I'm not a fan of the overuse of opioids but severe, intractable pain is one time I agree with its use. Especially with judicious use. Just knowing you could take something if you just can't take it makes such a huge psychological difference.

I had severe combo joint/nerve pain at one point and I went to a pain specialist and they put me on mucosal Buprenorphine. It made a huge difference in my quality of life and I was careful to only take it 2x a week at the most (I was actually more worried about central pain sensitization than addiction).

Nerve pain is no joke but you don't need IV Fentanyl.

I have no idea if this would work with true inner ear hyperacusis pain (vs neuralgia and TMJ pain), however.

 

[ajc]

I'm not a fan of the overuse of opioids but severe, intractable pain is one time I agree with its use. Especially with judicious use. Just knowing you could take something if you just can't take it makes such a huge psychological difference.

I had severe combo joint/nerve pain at one point and I went to a pain specialist and they put me on mucosal Buprenorphine. It made a huge difference in my quality of life and I was careful to only take it 2x a week at the most (I was actually more worried about central pain sensitization than addiction).

Nerve pain is no joke but you don't need IV Fentanyl.

I have no idea if this would work with true inner ear hyperacusis pain (vs neuralgia and TMJ pain), however.

I think you completely misunderstood Orions post.

She wants to have Fentanyl so she can slip away permanently (suicide).

 

[Orions Pain]

I'm not a fan of the overuse of opioids but severe, intractable pain is one time I agree with its use. Especially with judicious use. Just knowing you could take something if you just can't take it makes such a huge psychological difference.

I had severe combo joint/nerve pain at one point and I went to a pain specialist and they put me on mucosal Buprenorphine. It made a huge difference in my quality of life and I was careful to only take it 2x a week at the most (I was actually more worried about central pain sensitization than addiction).

Nerve pain is no joke but you don't need IV Fentanyl.

I have no idea if this would work with true inner ear hyperacusis pain (vs neuralgia and TMJ pain), however.

I meant so I could just slip away permanently.

 

[FGG]

I think you completely misunderstood Orions post.

She wants to have Fentanyl so she can slip away permanently (suicide).

Oh. I guess I did. I have used Fentanyl drips for my own patients so I didn't make that connection.

 

[Daniel Lion]

If only there was a pain free option to just disappear. Like can I please just get an IV drip of Fentanyl and slip away. I've had enough.

Hi OP,
Have you tried benzos? They helped me through a catastrophic time.

 

[Christopher805]

I've been a member of this forum since January of this year. I am losing all hope. I've tried to be positive despite everything I am going through. But it's getting increasingly harder to cope let alone function. In addition to my high pitch ring and hyperacusis I am agitated/annoyed by everyday sounds such as car engines and mufflers, lawn mowers, leaf blowers to birds chirping. The repeated nature of these sounds and my ring are maddening. I literally feel tortured. Sound therapy is starting to aggravate my ring. I cannot walk around the house all day with noise cancelling headphones as I've been told ears need to be desensitized. I do not want to take meds because of possibly making things worse. I am highly sensitive to meds which gave me this horrible affliction. I love life but this is not living. I I never felt depression until after this condition. However, I know what it looks like after helping my mother deal with it. Now, I truly understand her sense of physical and mental despair. I do not know what to do anymore. I see a CBT therapist regularly but it's not helping with the physical pain and annoyance. In addition to the ear conditions I have chronic back and stomach pain. Back pain (herniated disc thoracic area) resulted from freak out phase; bed ridden for 8 weeks lost 25 lbs. Body scanning and relaxation exercises do not reduce the pain and annoyance just makes doc richer. Does not stop me from having to try and sleep in a chair. I normally am a very rational person but this condition has changed that description. I scare myself with my thoughts. I apologize for my rant. I just feel everything I've thrown at this condition to get better just does not stick. It just falls to the floor and leaves me feeling helpless and scared. I do not know if I can wait for the new discoveries such as FX-322, OTO-413, Hough, and Dr. Shore device. Again, I've always tried to be positive on this forum but I am getting worn down. Most of all I so sorry that my wife and son have to witness my crumbling. They both have truly kept me going along with my will to live. But every second of every minute of every hour is simply bad. How can i go several hours the day before with no ring or sensitivity to sound to everything being bothersome the next day. I do not get it. The ENTs and other docs are clueless in how to help. This only makes matters worse. I am left to research for possible relief but there is known. So, I am left to deal with the mercurial nature of this condition. While all along my psychiatrist says to me I am here if you want to try another drug. Brain zaps, addiction, lower liver and kidney function, feeling like a zombie, countless nasty side effects and withdraws not to mention making ring worse, no thanks. I use to see a small glimmer of light at the end of the tunnel but that starting to flicker out. I am literally afraid of what the next day will bring. I always thought I'd be writing a success story but instead it's a distress story. Be Well All!!!

 

[Orions Pain]

Been in my room pretty much all day, not exposed to anything even remotely loud and the burning in my ears is is absolutely terrible

Does not ease up whatsoever, as it doesn't seem to be linked to sound exposure. What kind of neuralgia from hell is this? Take me back to Nov/Dec when I thought tinnitus was my biggest problem. I am exhausted from this chronic burning.

 

[Orions Pain]

Hi OP,
Have you tried benzos? They helped me through a catastrophic time.

I have not, I am very hesitant due to the side effects. Unless something can help my hyperacusis and burning, I am reluctant to take it as the source of the problem will still persist.

 

[Bill Bauer]

I am agitated/annoyed by everyday sounds such as car engines and mufflers, lawn mowers, leaf blowers

Have you tried protecting your ears from all of those sounds? You could try to get away as soon as someone begins using a lawn mower. You could also wear 3M earplugs possibly with earmuffs when you are outside where you might encounter one of those noises.

 

[Daniel Lion]

I have not, I am very hesitant due to the side effects. Unless something can help my hyperacusis and burning, I am reluctant to take it as the source of the problem will still persist.

I understand.

 

[LongWait]

When tinnitus invades your life, every second of your spare time, and causes constant misery, is there any point in being alive? Starting to think the answer is no. It's an irreversible problem.

 

[Agrajag364]

They must not read the suicide thread...

https://qz.com/1407287/giving-up-on-life-can-lead-to-actual-death-in-less-than-a-month/

If only.

 

[Christopher805]

Have you tried protecting your ears from all of those sounds? You could try to get away as soon as someone begins using a lawn mower. You could also wear 3M earplugs possibly with earmuffs when you are outside where you might encounter one of those noises.

Hi Bill,

I get annoyed by these sounds in the house. I go to another room in the house where these sounds are less disturbing. Also, put on noise cancelling headphones. These sounds do not cause pain they just get under my skin. What's even weirder is that sometimes when I am outside and encounter these sounds they do not bother me like they do when I am in the house. I guess I will have to get some 3M earplugs. I have eargasms 15 dB but they do not do the job. Thank you for the advice.

 

[Capstan]

I've been a member of this forum since January of this year. I am losing all hope. I've tried to be positive despite everything I am going through. But it's getting increasingly harder to cope let alone function. In addition to my high pitch ring and hyperacusis I am agitated/annoyed by everyday sounds such as car engines and mufflers, lawn mowers, leaf blowers to birds chirping. The repeated nature of these sounds and my ring are maddening. I literally feel tortured. Sound therapy is starting to aggravate my ring. I cannot walk around the house all day with noise cancelling headphones as I've been told ears need to be desensitized. I do not want to take meds because of possibly making things worse. I am highly sensitive to meds which gave me this horrible affliction. I love life but this is not living. I I never felt depression until after this condition. However, I know what it looks like after helping my mother deal with it. Now, I truly understand her sense of physical and mental despair. I do not know what to do anymore. I see a CBT therapist regularly but it's not helping with the physical pain and annoyance. In addition to the ear conditions I have chronic back and stomach pain. Back pain (herniated disc thoracic area) resulted from freak out phase; bed ridden for 8 weeks lost 25 lbs. Body scanning and relaxation exercises do not reduce the pain and annoyance just makes doc richer. Does not stop me from having to try and sleep in a chair. I normally am a very rational person but this condition has changed that description. I scare myself with my thoughts. I apologize for my rant. I just feel everything I've thrown at this condition to get better just does not stick. It just falls to the floor and leaves me feeling helpless and scared. I do not know if I can wait for the new discoveries such as FX-322, OTO-413, Hough, and Dr. Shore device. Again, I've always tried to be positive on this forum but I am getting worn down. Most of all I so sorry that my wife and son have to witness my crumbling. They both have truly kept me going along with my will to live. But every second of every minute of every hour is simply bad. How can i go several hours the day before with no ring or sensitivity to sound to everything being bothersome the next day. I do not get it. The ENTs and other docs are clueless in how to help. This only makes matters worse. I am left to research for possible relief but there is known. So, I am left to deal with the mercurial nature of this condition. While all along my psychiatrist says to me I am here if you want to try another drug. Brain zaps, addiction, lower liver and kidney function, feeling like a zombie, countless nasty side effects and withdraws not to mention making ring worse, no thanks. I use to see a small glimmer of light at the end of the tunnel but that starting to flicker out. I am literally afraid of what the next day will bring. I always thought I'd be writing a success story but instead it's a distress story. Be Well All!!!

Christopher

I feel I could have written most of your post. Actually I have written this feeling a dozen of times without posting it. I never wanted to memorialize it. I so understand the parts about family, withering, the ringing and sound annoyance. It has done nothing but get worse for me too. The high pitch ring, the hyperacusis... I'm at my end. I hoped for a success story too. It's just not in my cards. I'm trapped. I can't go forward with it and afraid of what ending it would do to those left behind. I've read your feelings here about responsibility with kids, and I share them, but it hurts and the balance gets harder everyday. I wish I had more hope. It's really damning how quickly life can change. I am so sorry for what you've gone through. I share all you're heartbreak and disappointment. I don't know what tomorrow will bring and it scares me.

 

[Zugzug]

I've been a member of this forum since January of this year. I am losing all hope. I've tried to be positive despite everything I am going through. But it's getting increasingly harder to cope let alone function. In addition to my high pitch ring and hyperacusis I am agitated/annoyed by everyday sounds such as car engines and mufflers, lawn mowers, leaf blowers to birds chirping. The repeated nature of these sounds and my ring are maddening. I literally feel tortured. Sound therapy is starting to aggravate my ring. I cannot walk around the house all day with noise cancelling headphones as I've been told ears need to be desensitized. I do not want to take meds because of possibly making things worse. I am highly sensitive to meds which gave me this horrible affliction. I love life but this is not living. I I never felt depression until after this condition. However, I know what it looks like after helping my mother deal with it. Now, I truly understand her sense of physical and mental despair. I do not know what to do anymore. I see a CBT therapist regularly but it's not helping with the physical pain and annoyance. In addition to the ear conditions I have chronic back and stomach pain. Back pain (herniated disc thoracic area) resulted from freak out phase; bed ridden for 8 weeks lost 25 lbs. Body scanning and relaxation exercises do not reduce the pain and annoyance just makes doc richer. Does not stop me from having to try and sleep in a chair. I normally am a very rational person but this condition has changed that description. I scare myself with my thoughts. I apologize for my rant. I just feel everything I've thrown at this condition to get better just does not stick. It just falls to the floor and leaves me feeling helpless and scared. I do not know if I can wait for the new discoveries such as FX-322, OTO-413, Hough, and Dr. Shore device. Again, I've always tried to be positive on this forum but I am getting worn down. Most of all I so sorry that my wife and son have to witness my crumbling. They both have truly kept me going along with my will to live. But every second of every minute of every hour is simply bad. How can i go several hours the day before with no ring or sensitivity to sound to everything being bothersome the next day. I do not get it. The ENTs and other docs are clueless in how to help. This only makes matters worse. I am left to research for possible relief but there is known. So, I am left to deal with the mercurial nature of this condition. While all along my psychiatrist says to me I am here if you want to try another drug. Brain zaps, addiction, lower liver and kidney function, feeling like a zombie, countless nasty side effects and withdraws not to mention making ring worse, no thanks. I use to see a small glimmer of light at the end of the tunnel but that starting to flicker out. I am literally afraid of what the next day will bring. I always thought I'd be writing a success story but instead it's a distress story. Be Well All!!!

I don't have the exact same condition, but I connect with your psychology. These conditions turn otherwise happy people into tortured, soulless vegetables. I think most therapists mean well, but if they were in our shoes, they would truly see the shortcomings. It shouldn't be embarrassing to ask for a cure -- or to be accused of playing the "I'll be happy when" game as an excuse.

Ironically, the doctors that make me feel the best push mental health the least. Keep fighting -- I know I am, despite my life going from successful to over in my 20's. There could be something that helps you, whether it be time, a supplement, or one of the real treatments in the pipeline.

 

[Contrast]

It makes me angry knowing people are suffering why psychologists and psychiatrists run the show.

 

[Contrast]

You think scientist are working on a cure to help the suffering, when in reality psychologist are just trying to figure out ways on how to take people off disability income.

 

[GlennS]

It makes me angry knowing people are suffering why psychologists and psychiatrists run the show.

 

[Contrast]

As long as ill health causes ill behavior, psychologist and psychiatrist can make their discipline look like it is more important then biomedical sciences. They get NIH grants by promising to rehabilitate the disabled. After all CBT and painkillers is a ton cheaper then biomedical research to cure us. Take this example.

If someone with painful neuropathy displays emotional regulation (aka acting like a decent human being). They are still scrutinized by psychologist for showing lethargy, cognitive decline and self pity. The sufferer will say that this behavior is the natural consequence of them suffering. The person suffering harms no one and does not display inappropriate behavior, however there behavior prevents them from working. The psychologist will focus on ways to mentally rehabilitate them back into the work force. While failing to modify the biological damage the person is suffering from.

The reason why most diseases have no cure is because biomedical sciences are extremely expensive to conduct, and people who are disabled with horrifying health problems are considered economic damage. It's a lose lose scenario! That's why we should kill ourselves. We are the problem they are trying to manage.

 

[Bill Bauer]

Also, put on noise cancelling headphones.

I hate to say it, but a number of people on this forum are convinced that noise cancelling headphones made their tinnitus worse.

There is no actual hypothesis about the mechanism of how this might happen. Nevertheless, people's tinnitus gets worse right after they use noise cancelling headphones, and that's enough proof for them. Personally, I wear earplugs underneath my noise cancelling headphones. The earplugs are there to protect me from the headphones. This setup works well for me.

I go to another room in the house where these sounds are less disturbing.

You might consider wearing earplugs when those noises come on. My plugs of choice are
https://www.amazon.com/3M-1100-Foam-Plugs-200-Pair/dp/B008MVYL7C
You might also want to experiment with low pressure earplugs
https://www.amazon.com/Howard-Leight-Disposable-Earplugs-without/dp/B00O9QV7NK
Their noise reduction is lower, but you don't feel them when they are in. Another downside is that they don't last as long as 3M earplugs. Their noise reduction deteriorates after about 5-7 uses.