Severe Pain Hyperacusis, Just starting out.

O

olly132

Newcomer
Hi, I suffer from severe pain hyperacusis or noxacusis, after suffering an acoustic shock and ototoxic medication. I have suffered with it for 2 years now and I have only got more and more severe. It's very rare and doctors really have no clue what it is. There are some theories and the one that I feel best fits my symptoms is myofascial pain syndrome of one of the muscles connected to the ear. I see that myofascial pain syndrome has its roots in central sensitisation therefore believe could be very much linked to TMS

Now this thing is excruciatingly painful and I can't tolerate any sound, I spend all day in ear protection locked in my bedroom 23hrs a day, also have screaming tinnitus, so that's all I can hear. I can no longer even whisper as this causes me too much pain, just something as simple as turning on the light switch can destroy me. So as you can imagine I am at my wits end, I'm becoming more and more depressed because I can no longer see anyone or have conversation to even have alittle laugh and joke, feels like my life is over.

However I am determined to beat this thing and in the process of trying to convince myself that this is TMS. The issue I struggle with is that I do have some very real physical symptoms. The muscle tension and spasms that I get in my ear are strong, and this tension can spread through to the palate in my mouth and side of my face. Sometimes the tension is so tight it feels like the muscle just wants to rip apart.

I guess some words of encouragement from others who have suffered with myofascial pain syndrome or muscle tension that was then resolved by following a TMS program would be nice.
 
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I'll just add that the first year I had this I was in a much more mild state and I had alot of success using the curable app. But after pushing my exposure too far I worsened and I was no longer able to listen to digital audio, so I could no longer listen to the meditations and material in curable. So since then have just spiralled downwards really. But it's due to that early success that I feel this must be TMS, despite it feeling very physical. Just feels like an impossible hole to climb out of now.
 
olly132 said:
The issue I struggle with is that I do have some very real physical symptoms. .
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TMS symptoms are "very real physical symptoms". They encompass some of the worst and most painful symptoms one can experience. I suggest that you read some Success Stories and you will see that this is a fact for those of us who recovered.

You might enjoy this one:

https://www.tmswiki.org/forum/threads/a-physicians-tms-story-rsi-hyperacusis-and-much-more.7658/ (A Physician's TMS story - RSI, Hyperacusis and much more.....)

And welcome to the Forum!
 
Ellen said:
TMS symptoms are "very real physical symptoms". They encompass some of the worst and most painful symptoms one can experience. I suggest that you read some Success Stories and you will see that this is a fact for those of us who recovered.

You might enjoy this one:

https://www.tmswiki.org/forum/threads/a-physicians-tms-story-rsi-hyperacusis-and-much-more.7658/ (A Physician's TMS story - RSI, Hyperacusis and much more.....)

And welcome to the Forum!
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Thank you for your reply, yeah I am pretty much convinced that this is TMS, I will continue to read success stories and the education to really reinforce the concept. What I find most daunting is how difficult its going to be for me to recover when I have very little opportunity for positive reinforcement. If I expose to any sound at all, then the pain is just out of this world and pretty traumatic to deal with, so its like a constant trauma, then also the really loud tinnitus keeps me in a constant state of fight or flight too. I don't want to make excuses for myself, I want to beat this, but feel I will need alot of help and many strategies in order to over come it.
 
Hi :)

I have suffered from tinnitus for seven years. I had an anxiety attack and from then on the damn whistle came on. This is accompanied by hyperacusis when suffering from colds or stressful situations. Protecting myself from the loudest sounds (+80dbs) improved over time. It is a bad idea to wear earplugs all day, as they make you more sensitive.

Since then my ears have been very sensitive. I cannot attend any concert, movie theater or noisy place without hearing protection.

But I can lead a normal life.

But something changed. Three weeks ago I had to perform as a DJ with hearing protection and after my performance, the hyperacusis and tinnitus returned with a vengeance.

Are they my ears? Or is it my nervous system that is hypersensitive and reactive?

In my opinion, it should be a mix of both. I don't know your case and I don't know if you have hearing loss. The curious thing is that there are people who do not have hearing loss and suffer from hyperacusis, which leads us to think of a problem closely linked to the nervous system.

You can try doing diaphragmatic breathing. Three sessions a day of 20 minutes. Five seconds of inhalation and eight of exhalation. That will calm your sympathetic system.

Think that it is the only way to affect our central nervous system directly. Breathing is the key. You don't have to listen to any guided classes. Simply use your head to mentally count the inhalation and exhalation.
 
Mitocondria said:
Hi :)

I have suffered from tinnitus for seven years. I had an anxiety attack and from then on the damn whistle came on. This is accompanied by hyperacusis when suffering from colds or stressful situations. Protecting myself from the loudest sounds (+80dbs) improved over time. It is a bad idea to wear earplugs all day, as they make you more sensitive.

Since then my ears have been very sensitive. I cannot attend any concert, movie theater or noisy place without hearing protection.

But I can lead a normal life.

But something changed. Three weeks ago I had to perform as a DJ with hearing protection and after my performance, the hyperacusis and tinnitus returned with a vengeance.

Are they my ears? Or is it my nervous system that is hypersensitive and reactive?

In my opinion, it should be a mix of both. I don't know your case and I don't know if you have hearing loss. The curious thing is that there are people who do not have hearing loss and suffer from hyperacusis, which leads us to think of a problem closely linked to the nervous system.

You can try doing diaphragmatic breathing. Three sessions a day of 20 minutes. Five seconds of inhalation and eight of exhalation. That will calm your sympathetic system.

Think that it is the only way to affect our central nervous system directly. Breathing is the key. You don't have to listen to any guided classes. Simply use your head to mentally count the inhalation and exhalation.
Click to expand...

Thanks for your reply, yes I will work on the breathing, I have done something called cardiac coherence in the past but kinda gave up, but incorporated with a TMS program it will probably be beneficial.

I'm sorry to hear you have had a set back, hopefully you can get back to where you were. My aim is just to get to position where I am able to leave the house again, go for walks, sit outside at a pub, go on holidays in my campervan. I understand I may never be able to go to anywhere loud again and I'm fine with that after the hell I'm going through now then that life will be like a dream come true.

With hyperacusis there are different types and levels of severity and with the type I have 'pain hyperacusis' causes me prolong deep ear burning pain that can last for weeks after a sound exposure. I simply have no choice but to wear ear plugs all the type or I will be in catastrophic pain. Sometimes just the sound of a bone cracking in my arm can be enough to cause pain.

I do actually think the type I have is a form of myofascial pain syndrome, some people have had great success with injecting botox into a specific muscle believed to be responsible, I can feel I certainly have an issue with this muscle, but of course botox won't be a permanent solution the issue must run deeper than that.

If I were to simply remove my plugs and try to live a normal life its only going to reinforced the idea that sound is bad for me, because of how much pain it will cause. I believe that is a key part of PRT and what Alan Gordon talks about in his book the way out, forcing your self though pain won't help and its going to take gradual exposure. I think in my case I will need to start with something like just 1 second a day.

But after discovering TMS and Howard Shubiners Teachings i believe my issues run deeper and i really need to address some repressed emotions and past traumas first before really doing much exposure.
 
If you can, try reflexotherapy (foot massage).

It is painful, but it helps A LOT to release tension in the body.

With 1 session my residual body pain (wrists, elbows and feet) was eliminated.

It made a big difference.
 
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