Success Story: Catastrophic Noxacusis and Hyperacusis
Okay time for me to confidently write a success story on recovering from catastrophic noxacusis/hyperacusis. If you haven’t read the post I made a few months ago I would recommend you go and read that first.
For those that know my story you will know that my case was extremely severe, completely isolated, double pro 24/7, setbacks caused by the tiniest of sound and very very severe long drawn out delayed, burning, stinging, stabbing, open wound type pain that would last weeks. Please don’t read this and think, oh ‘he can’t have been severe, he probably doesn’t have what I have’ because I can assure you, it was bad. Also the work I have done to recover although may sound simple it has been phenomenally hard, probably the hardest and most challenging thing I have ever done, but 100% worth it.
I started getting a lot of my life back nearly a couple of months ago now, I haven’t worn ear protection at all for about a month and a half. I’m now back at work and even went on a date yesterday, I can go to restaurants and pubs, experienced some live music over Christmas, I’m doing DIY again and using power tools. I still get discomfort in the ear, like ear fullness but no longer get any pain, I’m happy to expose to sound because I no longer have any fear of the pain returning, if it does return then I know it would be simply the brain causing it so it will quickly pass again.
So some updates on what I did since my last post to really push me to the next level. In my previous post I focused heavily on how emotions are the root cause of the pain and talked about things like pain reprocessing therapy and somatic tracking, I also mentioned that I was following the program in Howard Shubiner’s book, ‘unlearn your pain’. This is still a great place to start to give you a solid foundation in the theory. Knowledge is power and the foundation of the therapy. However, I believe that repressed emotions can be the root cause of what initiates the pain but once the pain has become chronic (lasting longer than 3 months) then I think the main mechanism at play is just the fact that it has become a learned response and then the vicious cycle of symptoms is just fuelled by fear. Unless the thing that was causing you emotional trauma is still a dominant part of your life (for example an abusive/bad relationship). I did have some issues with my dad and I have spoken with him and confronted him in regards to this and that was another breakthrough which helped me progress. This may have started for many people after an acoustic shock so we automatically put that as the root cause, however why do the vast majority of people not get H after loud events, what is it that differentiates us and its to do with our lived experiences, traumas and stress of life.
For those that say they’re not scared of sound, remember this is a process going on in the unconscious mind so we’re not fully aware of how scared we are. Also, its not a fear of sound it’s a fear of symptoms. The reason we have fear is because we believe the pain means physical damage, therefore we believe we need to avoid the pain to prevent further damage and to avoid worsening the condition. The more you avoid something, the more you build up a fear around it. The primary emotion involved in that is fear, so yes we are all or were scared and yes the more you avoid something, the more you build up a fear around it. The key to overcoming mind body syndrome is that its not a recovery from symptoms it’s a recovery from fear of the symptoms, once you no longer fear it then the symptoms subside and if they do arise again its fine cos you’re not scared of it and it will go quickly. The brain is causing you symptoms because it thinks its alerting you of a physical danger, once the brain realises that you not scared, it realises that there can’t be any danger therefore no need to produce symptoms.
So, at first I started with the rigid structure of the unlearn your pain program, which I still believe is a worth while step to gain a good foundation in the theory. I was doing a lot somatic tracking, this involves essentially meditating whilst focusing on your pain to try and befriend it, become fully comfortable with the sensations and see if the pain can move around. This approach can work for some people however one draw back of this is that essentially it is encouraging you to be too hypervigilant of the pain. Being too hypervigilant of symptoms is one of the main things that will keep you locked in a pain cycle. You need to learn to forget about symptoms and essentially forget that you even have a problem. You need to start acting like a healthy person rather than a sick person, because we are healthy and there is nothing wrong with us, we’re just being very convincingly deceived by our brains. Some practical steps to achieve this can be things like just when you walk around your house do so confidently with your shoulders back, head held high with a smile on your face, this a great signal to the brain that you’re not in danger. The problem with following a rigid program or structure to recover is you can get it into your head that if you don’t do this, this and this today then I won’t get better. So it becomes another obsession, fixation and source of stress which will fuel pain. You have to think, what would a healthy person do? A health person would just live their life, so this is what you need to start doing, obviously within current capabilities, and then when symptoms arise is when you respond to the symptoms with calm and reassurance, but you have to keep pushing. Yes this will mean setbacks, yes this will mean pain, it will mean you’ll need to go and rest, but its about the internal dialogue going on in your head and what you do to distract yourself in those times, whilst still maintaining the full belief that there is nothing structurally wrong and the brain is generating all of it; pain, muscle tension, hyperacusis, tinnitus. Once I moved over to this approach and stopped trying to follow more rigid exercises each day I started to improve more rapidly, but I would still start off with the 28 program as its very insightful and helps to build your belief.
This approach is the main method followed on the painfreeyou youtube channel.
https://youtube.com/@painfreeyou?si=fmWW29gns5zBmWZX
This channel has been a great source of strength for me, he produces a daily video and has a fast start playlist which I highly recommend watching. Lots of people may not be fans at first because it seems too simple and people prefer a more rigid, structured approach but as just explained I don’t think that’s the best way. But this stuff takes time, the brain is not going to suddenly let go of symptoms overnight. The brain’s primary role is to keep you alive and safe, when it experiences pain it naturally thinks you’re in danger and it’s going to take a while to convince it that you’re not in danger, especially after suffering for so long. So it’s about being very consistent in your mindset, responding to symptoms every day with calm and reassurance until the brain trusts that you’re safe. You can’t do it 5 days a week and then take the weekend off and fall into misery and woe and feel sorry for yourself. You gotta pick yourself up straight away and persevere. Many times I would have doubts and beginning to lose faith, thinking maybe this approach won’t work for me, maybe I’m not strong enough, maybe there is something wrong, there would be tears. But I clenched my fists, looked myself in the mirror and powerfully told myself ‘ I am capable, I am strong, I will beat this and I will get my life back’ then I would smile at myself, show some self compassion and say I love you to myself. You may laugh but its powerful and I would do this multiple times a day. And bad days maybe whilst watching a movie I would have to pause the movie every 5min to repeat my affirmations because I realised I was getting distracted from the film and thinking about the pain. This process takes months and consistency. However there will be breakthroughs and moments of hope. These breakthroughs is great evidence to yourself that you’re on the right track and what you do is you make a list of those breakthroughs then in setbacks you remember your list and say, ‘no I know my brain is causing this because remember that time when my pain was less because I was I distracted because I had seen family or a friend’ (for example)
One really really important thing you have to do is to quit all forums and stop looking for answers online for physical causes or the latest drug that might help. A healthy person would not spend time doing this and remember we need to act healthy. Some people may be able to hack it, however all that information is drip feeding into your unconscious mind fuelling the fear. Stop seeing yourself as someone who suffers from hyperacusis but as someone who suffers from mind body syndrome, move the attention away from the ear and to the brain. We think hyperacusis is really rare, it’s not because it’s just a symptom of mindbody syndrome and there are billions of people globally suffering in chronic pain, so we’re actually suffering from one of the most common things.
You have to keep pushing yourself, the biggest opportunities to improve is with exposure and then after setbacks picking yourself up asap and just going for it. Many times I have sat there thinking ‘shall I try push it today? shall I listen to music? shall I try going for a walk? I feel on the edge of pain, but its not catastrophic’ so I ask myself the question ‘am I holding back from exposing because I’m scared?’ inevitably the answer is obviously yes, because I’m worrying about the pain getting worse. Therefore, I know the only way to overcome fear is to face it and you gotta force yourself, it’s the only way. If you go abit far and it causes a flare up or pain then that’s still good, because atleast you tried, you stood up to fear and that’s the way to recover. If you think, no I’ll leave it for today and perhaps try tomorrow, then you’re letting fear win. You should have a feel of your own body and know when you can push and when you really can’t. But those moments when you’re on the edge and you’re not sure are the moments when you just have to go for it.
I have worked hard not to focus on symptoms all day, doing jigsaw puzzles I found a great distraction. But mainly it’s about being watchful of your own thoughts. When you catch yourself focusing on symptoms smile and just say ‘nope’ not gonna think about that. Yeah inevitably at first you’re doing that every 5 mins but slowly over time you get better at it. But always try to do it not from a mindset of despair, but smile at your pain, welcome it, laugh at it, tell it ‘I know what you are and I’m not gonna let you beat me’
The real challenges for me have been the phenomenon of what they call symptom imperative, this is when your symptoms can move or new symptoms arise as you go through the therapy. You’re just seeing improvements with the ear pain, think you’re on the road to recovery then a new symptom starts that can be even scarier. Here’s a list of all the new things I have had to deal with. Typewriter tinnitus, pulsatile tinnitus, MEM, palatal myoclonus, palinacousis, musical ear syndrome, wrist pain, back pain, restless leg syndrome, various body spasms, scalp pain, TMJ pain. Probably musical ear syndrome and palatal myoclonus have been the most terrifying. Because you think ffs, I can’t deal with this now, not now please. But you have to pick yourself up straight away, no matter how scary it is and tell yourself it will get better, you know what’s going on and welcome it, smile at it and be happy you’ve got it because it means you’re on the right track, it doesn’t mean you’re getting worse. The brain realises that you’re onto it and it’s testing you to see if you really have overcome fear yet, it may realise that you’re not so scared of the pain in your ear anymore, but your whole body is still so sensitised to fear so it tries to find somewhere else in your body to scare you. So yeah its been hard work, but I have come out the other side with about 4 to 5 months of solid perseverance, being determined and trusting the process.
For those not wanting to believe and would rather look to doctors or researchers to come up with answers then I can tell you now they are not going to. In the UK alone there are 28million adults suffering in chronic pain, that’s over half the adult population, it’s a real epidemic, its similar if not worse figures in the US. Majority of these people will be suffering from mindbody syndrome. There's only a handful of conditions that cause structural chronic pain, for example cancer, lupus, diabetes some other tissue break down diseases. The body is very very good at healing, nerves heal, tissue heals and scars. Out of all the mindbody syndrome chronic pains, the doctors have no idea what’s going on, sure there is theories but nothing conclusive. They don’t know what causes fibromyalgia, CRPS, frozen shoulder, POTS, CFS, tendonitis, RSI, trigeminal neuralgia there’s hundreds of conditions, however they love to sell people drugs to try manage them, which never work. The system is corrupt, whether consciously or unconsciously that’s your decision. Some conditions they know what causes the acute stage, but the body should heal, its about what causes it to become chronic. Researchers are looking for answers and coming up with theories, remember they are also interested in getting their funding grants and keeping themselves in a job so they gotta produce some papers with some substance in order to keep food on the table. All research is important even if it leads no where, but it doesn’t mean they’re right. Most chronic pain conditions are in areas of the body that are very easy to visualise, but they still can’t figure out what’s going on? They think they need to cut the body up into smaller and smaller microscopic parts to find out what’s going on. That’s not the answer, they won’t find anything, the brain is controlling everything. People need to start seeing the mind and body as one. Chronic pain is on the rise, there are more syndromes and conditions now than have ever existed, it’s not because our bodies are changing or we’re abusing them more. It’s because modern life is so much more stressful than it used to be, we didn’t evolve to cope with such modern pressures. You may say well some people get operations for their conditions and its successful, however the success rate is pretty low and there have been studies to show that people can even be cured after fake operations or placebo but it may return after a few years or you simply get another symptom elsewhere in the body. Cos it was in the brain.
John E Sarno who pioneered this work and he has a great book called ‘the mind body prescription’ worth while reading. He treated over 11,000 patients with a 90 to 95% success rate. There are some difficult cases who may need further psychotherapy as there could be deeper psychological issues going on. But those numbers speak for themselves as to the efficacy of this work.
Another great source is the TMS wiki and there is a forum there and countless success stories
TMS Forum (The Mindbody Syndrome)
I would strongly strongly recommend watching or reading multiple success stories a week if not every day, especially if you’re feeling down. They are a great source of motivation and inspiration when you see how many other people can do this and see they have very similar lived experiences it gives you faith that you will recover too. This particular one I liked.
https://youtu.be/b7NFVY7kPcs?si=HoQDsBcI8FZM5uXI
oh and also one more thing I have found very powerful is journaling to release emotions but don't overdo it trying to look for issues in the past where you need to release emotion. Again that will just become another source of stress. but if you have had a difficult day then journaling to resolve the emotions from that situation on that day is a healthy way to process emotion and ensure it doesn't add to your pain. but also really powerful is to write out the theory of mind body syndrome to yourself in your journal each day or night, remember knowledge is power and you need to keep reinforcing the message and teaching your brain what's actually going on, so yeah it is repetitive but its the solution.
I really hope my story can help others, if I can recover from the extreme state I was in then I strongly believe you all can too.
Welcome positive comments, questions and discussion.