Bloody ups and downs

Deep down, whilst taking my victory laps last sunday, i already knew that this day would come. Even then, there was this little delusional mini me picturing myself sitting at the barbers in a week.

Well, the up lasted like a day. Its so frustrating cause ive proved to myself that i can in fact get better. It wasnt a little improvement but a big fucking jump. I find myself trying to force it again -- spoiler: it doesnt work like that. I just lightly touched freedom and i got obsessed again.

Positives: I saw a friend of mine yesterday. We didnt speak but i really appreciate that all my friends are still in contact with me. I hadnt seen a friend in 8 months so thats a big plus.

Negatives: I'm 19 going on 20 and I fucking hate my life and i need to write about how much im gonna grow to despise myself in a few years every day. I just wanna have some fun for once. I'm gonna be 24 and have no life experience at all when all the people around me have been through it all. That is, if I can actually meet people by that time, which would be an incredible win.

I hate how much i cant seem to be able to force this issue. It got better when i let go but i just really DO care a lot about whether i get better. I havent even done anything yet...

I had it, I had improvement. It was the biggest improvement ive had in 18 months and it slipped out of my hands within a day. Ffs, I hate tms.

I dont even know what i did which made it worse and i dont know how im gonna get the improvements back.

I am now gonna be writing for 30 minutes about how much stress i get from being 19 and not havinv had fun since my 18th birthday, its pretty much 80% of what i write about cause it drives me the fuck insane. I cant get these years back. These are supposed to be the good times.

I knew this would happen but I'm still so disappointed. Ugh...

 

@Mani "I know exactly how you feel. In my case, I can’t really tell if this is progressively improving, but I’ve had low-pain days among so many bad ones, and I want to believe they will become more frequent. That was my day yesterday: the pain was low but still present—mobile and electric in my arms—yet low enough that I felt encouraged to do so many things at home that I usually don't dare to do. I even cleaned the windows.

Maybe I did too much, but you have no idea how much I enjoyed being productive. However, I knew it would end eventually; I tried to hold onto it as if it were the last day of my life. Today, I find myself with mobile pains that are even more severe than yesterday. Staying calm is mentally exhausting.

To be honest, ever since I started lowering my fear of the main symptom in my arms, I’ve had even more symptoms than I had before—all of them nerve-related. So, I don't understand how this can be considered 'improvement.'

One thing that saddens me since this all started eight months ago is the amount of time I'm losing just trying to survive these sensations and nerve pains, especially in my arms. I miss that feeling of being carefree and enjoying the things I used to love, or even simple things like taking a nap or going for a walk, because these pains are always there, trying to scare me and keeping me exhausted."

 

@Mani,
Don’t lose heart. You know there are ups and downs. One day you’ll be free. There’s no time for self pity. It only drags you down. You’re doing great. Fill yourself with love and gratitude today. You’ll feel better. You’re a strong soul. Your life is and will be good. Don’t compare it to anyone else’s. Your growth curve is tremendous. Believe your life will be good. What you believe will happen. I’m in your same boat. Great week, then a backslide. I’m NoT going to believe my life is over. I’m going to try and try and keep trying. And fill myself with good thoughts. You can do this. Do we have a choice? Hugs!

 

Try to learn not to be scared. You’re ok. This is all something that can heal. Read success stories. And definitely read Hope and Help for Your Nerves, by Claire Weekes. Read some every day. Then picture your nervous system healing. It takes time. ❤️

 

We've all been there where we can see us getting better and then somehow it all comes back. It's normal to feel frustrated by it for sure. Just know that you were feeling better which means you can and will heal! What good news!

Recovery is not liner. We will all experience ups and downs-it is frustrating. Feel that but then start focusing on how you will incorporate some fun for today. Even if you are bedbound or can't moved a lot today-find something to make you laugh or smile. This usually helps me get out my funk and to try again!

Can we try to change this mindset of losing time? I had that feeling as well. But now I've spinned it into more of how I am learning about myself by journaling. Or how I am calming myself down using meditation. If my symptoms didn't stop me, I'd still be living the same way-a people please who stressed out about ALL THE THINGS!! Now, I don't have it figured out just yet, but just recently I have realized that I have responded to a couple of stressful situations differently. I've given myself more compassion and have set boundaries. I've said no to people and that was so hard!

Sending you hugs as you deal with this!!!

 

I completely relate to all of this. I propose to you a few reframes which also helped me.

Note that I am 28 (almost 29) and I had TMS between the ages of 21 and 27. I could look back in anger and regret but the truth is I wouldn't change it. Why? Because TMS forces you to grow, become wiser/more self-aware and more importantly treat yourself better/have a better relationship with yourself. That is absolutely priceless and will set you up for life in ways you can't imagine.

I know it sucks but don't discount the experience of TMS (you'll understand more once you are on the other side). That's some very valuable life experience (mainly in adversity but for other reasons too) that your peers won't have even if they might get a head start in other areas. Your improved self-awareness and self-esteem mean that you will catch them in no time and probably surpass them (not that it's a competition but what you will gain from this is very valuable is my point). As an example, some people's lives completely fall apart in their 30s-40s (mid-life crisis) as usually they are either having massive relationship issues or are stuck in a profession that they actually don't enjoy. Both of these things are remedied by/can be avoided by the wisdom you are gaining now. Also, so many people find success and happiness later in life too so the idea of the 20s being the be all and end all I think is overstated.

You know the way out deep down. It gets better when you let go because that's what it is pushing you towards. Self-compassion, self-worth and the wisdom that you are so much more as a person than what you do. I would focus on the specific connections you can find between your emotions and flare ups (even if it is a more broad connection such as when I get upset or stressed it comes on). This will give you confidence as well as the insight to appreciate that this really is a journey in personal development. You'll get to the point where you don't care about individual flares, because you're confident (and the emotional links show this) that if you accomplish the broader goal around personal development and treating yourself better, the byproduct of that is the pain going away. This perspective also helps you not obsess over the pain and helps develop indifference.

Final point: you're treating this in a way like a structural issue in your head by telling yourself that this flare means you've lost some sort of progress. I know why you feel that way but that isn't how TMS works. TMS recovery is not something linear based on how much you can do and the level of pain (it would be if it was a structural issue, so here you may be actually subconsciously indicating structural damage to your brain, which will keep the danger alarm on) - as I said above TMS recovery is a byproduct of the emotional work as well as correct knowledge of what is going on and how it works. As long as you are doing the emotional work and heading towards greater self-compassion (which includes being comfortable with your own emotions and expressing them in a healthy manner because you deserve to), then you can't go backwards and you can't lose progress (in fact the beating yourself up if anything would indicate going backwards). If I were coaching you I would be assessing your progress based on your level of confidence in the diagnosis as well as whether you are raising your self-awareness and self-compassion, it would have nothing to do with symptom levels, at least not in the short-term (longer-term clearly as we are in the business of healing chronic pain) (as I said that's a byproduct of the emotional work, also flare ups can be valuable if we can tie them to emotional stimulus as then we know what to work on).

I have empathy because I was in this position a number of times and I was disappointed when it roared back too, but trust me you're doing fine and you're going to get there as long as you keep working psychologically

 

Exactly! Your life will be so much better on the other side as a result

 

Hi! I just wanted to say please don't flirt with the idea of you "doing too much" - you didn't and it's the intention that counts. It sounds as if you did it from a place of encouragement and joy (vs desperation) so that's great!

 

@Mani I echo what @Adam Coloretti (coach) says about the feeling of missing out... I can understand why you feel like you’re missing out, but the truth is, a lot of people who seem to be “living it up” at your age are often just distracting themselves from their own issues. Many of them will face the same mind–body patterns later in life and have to learn from scratch what you’re already working on now — how to feel emotions safely, how to let go, how to trust your body again, how to self-soothe, how to feel safe. Those are deep skills, and you’re already learning them.

The idea that everyone else is having a great time is a story your mind is playing on repeat, but it’s not the full picture. Every age can be the best time of your life depending on what you make of it — and right now, even though this part feels awful, you’re laying a foundation that will make everything that comes next much stronger and more real.

The progress you felt wasn’t just luck. It was you discovering what’s possible.

 

First off, I love this reply. This is the attention that i kind of need right now. I know we shouldnt be dependent on others but sometimes i just want people to understand.

I agree with all of this. I have known this was a requirement to pass into adulthood, or at least it really feels that way.

I dont know how to explain this but, most tms symptoms arent dependent on other things. If you have back pain you just cant walk, but once you can, youll be able to sit down in a classroom or to work your job or whatever knowing that nothings gonna happen to you. I'm on meds now (clomipramine 200 mg) because i just couldnt calm myself down. The problem is: What if i get into an accident and the air bag deploys -- very loud. I have zero faith that when i get a new setback and sounds start hurting again ill be able to beat it. I dont think you realize how much your world stops when you stop being able to hear sounds. I reckon its kind of a paradox, but tinnitus and hyperacusis are intricately connected to sound. I cant control sounds. Its how it started at first: acoustic incident and freaking out about loudness of sounds.
again. Imagine I have a kid, a pregnant wife and suddenly this comes lurking around the corner. Id immediately see my life flashing in front of my eyes -- i mean, how could i not? There is no living without sounds. I would try to force my way through as to not let it consume me but as we both know forcing doesnt work. I can already see Jan getting mad at my reply but this is how it feels. I know how it feels to not be able to bear any sound and i absolutely dont want to do it again. I have torn my acl, i know what its like to not be able to walk, but this hearing thing is so immensely dehumanizing. No one understands, theres no shitty story i can come up with, I just have to say sounds are too loud. I see people thinking: what the fuck does that mean? And i cant blame them
So imagine: I'm in my 2nd year of law school. Suddenly an asshole screams into my ear. I try to calm myself: 'no worries'. Yet, the next day when i make up, my ears are burning, I cant stand a sound, what will i do then? How will i not freak out? Maybe im just not far along the tms journey, but id have zero faith without meds. I dont know how to never be afraid of sounds again, I know what it can take from me.

I have had actual nerve pain. Full blood whatevers right on nerves, worst pain i ever felt. It was mentally excruciating, knowing that every time i stood up, my calves would scream and burn in pain, but I had control over it. I knew nothing would happen as long as i didnt stand up, i was safe. I'm never safe now, I'm just at the mercy of another asshole. I know this is not tms mindset, but its the truth.

I'm able to work with this right now because i got nothing left to lose, no one depends on me. If i got this this severely again whilst trying to hold down a job, it would kill me. I'm not saying ill never actually recover, i just dont know how i wont get scared of loud sounds. It kind of is a self fulfilling prophecy i guess. I mean, why would i ever wear earbuds again, go to a rave (even with ear plugs)? I would really like some replies to this because i legit have zero faith. It takes just the wrong sound at the wrong moment to drop all down into the endless depths of misery.

I have known this wasnt structural since the start, but i still fell down all the way down to where i was like 3 weeks ago. I dont feel safe because i know that sounds can cause setbacks, and i dont want set backs. And i really feel like without meds id be done for. Just the way my ear and brain felt after a loud sound, its impossible to describe. Its different than other things. Its my one and only ear; i dont have any spare parts.

 

I understand the fear of setbacks/certain triggers completely, as I'm also dealing with that. From what I understand about TMS and what I've experienced so far in my recovery, some sort of balanced approach is helpful. The practitioner I'm working with told me to keep things within a 10% pain increase. I'm not sure if that's a PT thing or a pain reprocessing therapy thing, but it aligns with the graded exposure advice I've read elsewhere. You don't have to return to everything all at once, just be easy on yourself, try to do nice things for yourself if you can, even if they are small, find balance even though that is actually the hardest thing to do. You going for a short walk was a big step (like me going for my first 1 mile run a month ago)—you don't have to extrapolate your worries about limitations to the rest of your life.

I'm experiencing myself how fleeting improvements can feel. I had a moment yesterday at work where I was feeling really comfortable and relaxed and lost in my thoughts, not thinking about TMS, and I suddenly realized my pain wasn't just kind of gone, it was all gone. I actually made a voice memo telling myself that at this moment my pain was gone because I wanted myself to believe it later that it had actually happened! And of course it came back a little bit a few moments later, and I had a little flare that afternoon, blah blah, the cycle continues. But that doesn't mean the progress wasn't significant. The more times that happens, the more I'll have evidence that it can happen again, for longer.

Also on the subject of growing older, I'm 29 and I'm starting to feel like I wish this had happened to me sooner. I spent my entire 20s completely depressed and anxious, freaking out about being behind, about not achieving as much as I thought I should be, terrified that I was going to be a failure in every way. And that was all before TMS! When I first felt symptoms of course I was terrified that my fears had come true in the worst possible way, but as I've learned what's going on, I'm now starting to see my mindset shift towards what I have gained from this. I now see so many people around me preoccupied with petty grievances and anxieties that simply do not matter, but I couldn't possibly have seen that before. I'm also starting to feel like I have, if not quite a sense of purpose yet, a sense of growing agency in my life to deliberately try to find that sense of purpose. I do think what @Adam Coloretti (coach) said is true, that this is almost impossible to see when you're not on the other side of it yet, but until then you can in Nicole Sach's parlance, borrow the confidence and belief of others in this community that you are healing and you will get there.

This is not to say that I'm on the other side of it; just last week I had a challenging day or two and was despairing about it, but I got through it and calmed down and now I've had some really good days again. It's like weather: on a clear day you can see your goal in the distance; on a stormy day you can't see three feet in front of you but you can choose to keep walking.

 

Thanks, just to share why i have so little faith:

I have ocd, this is not something i necessarily want to identify with but ive generally coped with hard times through obsessive thoughts. I got better at first, without any tms work. I knew my ears werent damaged and i was just taking it slow. My progress went staggeringly quick, but i still cringed with digital sounds, like i just didnt want to hear them. I was even able to go on a plane to italy and thats where i had my new 'setback'. Right after i already kind of wanted to start wearing ear plugs again. It just felt like ive been graped. Btw: I have never been raped, but the feeling i have had after extreme sound exposure always left me feeling how thats described. As if your body has been violated and just half dissociating half dazed whatever, like nothing has ever made me feel before. Its just a really really -- its just a feeling i really really dislike. I had a couple of other stressful moments but then when i got back home i desperately wanted to go back to life but it just wouldnt budge. It was so frustrating. I ended up forcing it to the point where i was only getting worse, and that continued for another year.

This was while using Unlearn Your Pain btw. I just know how helpless and violated i felt. Its only after starting clomipramine that sounds are still too loud and sometimes painful but it no longer feels like my soul gets snatched once a week.

I'm rambling again but this is just what im so scared of. I dont know how ill ever be resistant to decreasing sound tolerance. It just makes me feel so drained, in a way that bodily injuries never made me feel. I get that thats why i get this, it hits me the worst, but i still feel as though im at the mercy of my body. I would really like to hear everything responding to this cause this is my most important tms gripe: how to live your life like you used to?

Will i go to clubs again (with earplugs), football stadiums whatever whatever? How will i know whether im ready? If i wont go to environments i used to, then you can hardly say im cured right? I wouldnt call someone that skips the gym because of tms cured...

 

@Mani Whilst completely understandable, what really stands out to me is that most of your focus right now seems to be on the symptom — the sounds and how loud or painful they feel — rather than on what’s driving that sensitivity underneath. From a mind–body perspective, the goal isn’t to desensitise yourself to certain noises, but to help your whole system feel safe again. When your nervous system calms, the symptoms can ease on their own.

I can sense how much fear there is about the future — wondering whether you’ll ever be able to do the things you used to, like going to clubs or stadiums. That kind of thinking is completely natural when you’re scared, but it can also pull you into worst‑case scenarios that keep your system on high alert. The good news is, you don’t have to work out the future right now. As your brain begins to feel safer, those bigger fears can start to ease on their own.

Yes, there’s a difference in that your TMS symptom is a reaction to sounds created outside of you, whereas mine, for example, was excruciating pain whenever I sat — which made it feel impossible to return to and live in an outside world that requires so much sitting. But essentially, it’s the same process: the brain’s fear and protection response linking everyday experiences with danger.

What helped most, in my experience, was gently shifting my attention toward soothing and grounding practices. Over time, as your system gradually begins to feel safer, you begin and proceed to notice that difference, and the world really does start to open up again naturally.

You’re not broken — your system is just trying to keep you safe, and learning to calm it is how you find your way back.

 

Firstly, I don't think you're being dependent - and it sounds like you're relatively new to this space? So that is just unnecessary self-criticism on your part. This is what the forum is here for!

Also, I feel for you and I will say I don't know what it is like because I've never had those type of symptoms. I have as much empathy as I can have without having experienced it. That said, I don't want you, in an effort to explain it (which is completely valid), stretch it out to some unique monster. Why? Because that risks taking you out of the TMS possibility of recovery and plays on your doubt.

Let me explain that further. I've got no issues in you trying to differentiate the symptoms themselves because of course they are different, but for some people with back pain for example it can be a similar story. They can have pain with sitting, walking and lying down. There's not much relief there. You also said in the back pain example that "once you can" walk as if you are jumping ahead of the recovery and it's a foregone conclusion. Of course once they can it will be better. Having said that, people with back pain can still experience doubt. What if they start getting spasms at work and it puts their job at risk? That is hardly "nothing is going to happen to you". Also, I could say the same for you and say well once your nervous system gets more comfortable with sounds then you'll be more okay (which is true).

I understand what you mean in terms of you can't control sounds as much as your own movement for example (although some people with pain have to work and have to take care of the kids for example, so do they really have a choice but to move even if the pain is horrible?). I'm not going to argue that it doesn't have its unique challenges, but when you said "I don't know how to never be afraid of sounds again" it's the same prospect as "I don't know how I'll never be afraid of sitting again" (for someone who experiences horrible pain every time they sit). The more you differentiate in your head, I think the more that fuels your doubt as the further away you get from everyone else with TMS. Your brain will subconsciously think well mine is so different that maybe mine necessitates a different strategy, or even worse well maybe it works for back pain but it won't work for me. It's all TMS and you're sensitive to the sound because of (to put it broadly) an overactive nervous system. The overall process is the same.

In terms of your question "How won't I freak out?" - you won't freak out because you will understand why you got triggered and what led to the symptoms, and spoiler it isn't the sound itself (hard to believe at this time I appreciate). As Bloodmoon said, you are hyper focused on the symptoms at the moment and are missing the point (that's not a criticism as I was at that place too!).

A final point on what you said - you said you know it isn't structural, but then at the end you said you only had one ear and no spare parts, insinuating that your ear may be prone to damage. Those mixed messages very well may be leading more to subconscious doubt, so whilst you say you believe, your subconscious is saying well if Mani did believe then why does he say/think that?

What I would be doing if I were you (easy for me to say with my experience), is looking at this psychologically. I appreciate that no one likes being yelled at in the face, but for the most part I'd say this is a rare occurrence. Did this happen to you or has it happened to you in the past so as to make you more wary of it? One of my first thoughts when you said that is perhaps the symptoms are a protection against confronting someone in this situation. This connects with people pleasing for example and an inability to express your needs and opinions (which from what I've seen is an issue with 99% of those with TMS). I don't expect you to share your history with me, but I just wanted to give you a little example (it might be completely wrong and I've made assumptions) of how you need to be thinking to recover. The symptom is always a smokescreen.

 

@BloodMoon This integral approach resonates with me, thanks, great theory, I wonder how much I can actually embody that mindset. I've been an angsty individual since bad TMS. So many activities im worried about. A job, sports, gym, church, drivers license, law school....

Sometimes the people here just really know what to tell me. It's why I love this place, very like minded folks. I also want to help people here but I always feel like a nerd when I tell people to do things I myself cant even do. Feels like i have to add 10 disclaimers.

 

Okay, so youre completely right. "im different" is the easiest of tms copouts. Besides, it doesnt matter what others have or do, i have to take care of my own shit regardless.

Youre hitting on the core issues at play. I believe that sounds cause a disturbance within me, i feel like sound is a big part of the issue. When you think about it, it makes sense, loud sounds disrupting the nervous system isnt far fetched. Tinnitus is also caused by hearing loss for example. These two symptoms are poorly understood. Theres no success story on this platform regarding solely hyperacusis. Theres a ton of success stories on other forums, but those are mainly focused on the sound, not on any underlying issues. A lot of horror stories -- which i read a ton of in the beginnning, and shouldnt have -- contained similar elements. 'Got better at first, had a setback because of sound, and it just got worse and worse.' This is exactly my experience with hyperacusis. Ive done enough trauma work i feel, I feel as though hyperacusis has gone from a symptom to the issue itself. If I were to wake up deaf tomorrow my QoL would increase tenfold.

So the question is, how do we tackle this? I have tried brute forcing, doesnt work. Lets indeed stop comparing to others because we never know what others specifically go through. I feel like loud sounds cause unrest i wouldnt have if i didnt have hyperacusis. I also have tinnitus and thats just linked to hearing problems, but i dont have hearing loss in my working ear. I dont believe theres anything structural, but i believe im just scared of sound. I need to not freak out when i feel like my entire life is falling apart. That is, if i even beat this this time around. I tried last year with tms whatever and got worse.

I think you're saying: you need to stop believing that these symptoms are directly caused by sound. But that would mean for me to say that after going to a loud whatever, waking up with blaring tinnitus and pain in my ear would also have happened if i hadnt gone. That just doesnt sound very truthful to me. I'm looking for solutions here, and I get that youre trying to help. Once again, after all i do need to beat this sometime. I need to be able to listen to any normal sounds again and be comfortable. Sound just has such a profound negative connection, mainly to suffering, which i dont know how to get rid of.

 

In terms of the first part, you said "loud sounds disrupting the nervous system isn't far fetched" - the symptoms themselves can cause nervous system dysregulation additionally but assuming this is TMS you've got it the wrong way around. It would be correct to say "my nervous system is dysregulated (for whatever reason) and this is causing me to hear sounds at a higher volume (or however it specifically plays out for you)". Assuming there is no structural issue, it's not happening for no reason. That's what I meant when I said it isn't the sound itself. I know it might seem a bit silly and I appreciate why it doesn't sound truthful. Let me give you an example from my experience. I couldn't sit down for 6 years without really bad pelvic pain. If you had have told me before I knew about TMS that the sitting didn't cause the pain I would have said "ah, yes it does and I have 6 years of evidence to prove it". It turned out not to be the sitting itself however that was dangerous, but my brain associated sitting with danger (for a variety of reasons). It is like correlation v causation. The loud noise itself is just the trigger. It isn't dangerous in and of itself, it's simply a conditioned response (which is not the same as causation - because if we regulate your nervous system and remove the fear then it will stop - which will prove that it wasn't actually the loud noise after all, because assuming it was then it would just continue in perpetuity). Back to my example, I can sit now for hours with no pain - proving that it wasn't the sitting itself but my relationship to it (which changed). It may be subtle but conditioned responses as part of TMS is a very important theoretical aspect to understand.

I'm no expert in hyperacusis and tinnitus - but it does in parts of your writing sound as if you're treating it as a diagnosis rather than a symptom (you seem to switch back and forth). In the diagnostic guide by Dr Clarke, Schechter and Schubiner (all leaders in the field) - they say the following about each:

Hyperacusis - "Assessment for PPD (TMS) is strongly recommended" - in other words, unless there is a clear structural explanation then it's highly likely TMS.

Tinnitus - "Hearing evaluation should be done first, PPD (TMS) if often a significant factor" - so same thing as hypercusis essentially - assuming the hearing evaluation is clear then it's likely TMS.

"I feel like loud sounds cause unrest I wouldn't have if I didn't have hypercusis" - absolutely I don't doubt that. We need to address the root of the fear first. If you are linking these issues to potential ear damage and hearing loss, then I'm not surprised that you would be terrified every time it happened, I would be in your position too. So that needs to be quelled through evidence and a belief in TMS. Once you get to a position that I am just really annoyed and any fear I have is how this impacts my life rather than these symptoms are going to cause me physical harm, then that's a position we can work with.

In terms of believing it is not caused by the sound itself but rather your frightened and defensive nervous system (that may not tell the whole story but just to keep it simple), we need evidence. I don't expect you just to believe because I or someone else told you so. The fact that it's inconsistent though and you have had improvements is great evidence. Clearly then there are other factors at play than just sound itself - otherwise it would be super consistent and exactly the same all the time. I would then be analysing those inconsistencies and looking at my emotional world both when it is good vs when it is bad. Was I in a better headspace when I had improvements? What was going on in life at the time? We haven't even discussed what was potentially going on at the time of your life when the symptoms first started, which can tell us a lot.

Hopefully that makes sense - think psychologically Once you get to the point where you are very strong on it being TMS (and this is reflected in the fact that you know symptoms aren't harmful at least physically - I understand they are painful and suck) and you can see how your emotional state impacts the symptoms (which then gives you confidence as you know you are under control to a large extent - there's much you can do to improve your internal state) - then the fear will naturally dissolve

 

In terms of the first part, you said "loud sounds disrupting the nervous system isn't far fetched" - the symptoms themselves can cause nervous system dysregulation additionally but assuming this is TMS you've got it the wrong way around. It would be correct to say "my nervous system is dysregulated (for whatever reason) and this is causing me to hear sounds at a higher volume (or however it specifically plays out for you)". Assuming there is no structural issue, it's not happening for no reason. That's what I meant when I said it isn't the sound itself. I know it might seem a bit silly and I appreciate why it doesn't sound truthful. Let me give you an example from my experience. I couldn't sit down for 6 years without really bad pelvic pain. If you had have told me before I knew about TMS that the sitting didn't cause the pain I would have said "ah, yes it does and I have 6 years of evidence to prove it". It turned out not to be the sitting itself however that was dangerous, but my brain associated sitting with danger (for a variety of reasons). It is like correlation v causation. The loud noise itself is just the trigger. It isn't dangerous in and of itself, it's simply a conditioned response (which is not the same as causation - because if we regulate your nervous system and remove the fear then it will stop - which will prove that it wasn't actually the loud noise after all, because assuming it was then it would just continue in perpetuity). Back to my example, I can sit now for hours with no pain - proving that it wasn't the sitting itself but my relationship to it (which changed). It may be subtle but conditioned responses as part of TMS is a very important theoretical aspect to understand. Now practically, you might say well what difference does it make because practically the sound my as well cause it, I get that but from a mindset perspective as well as how to recover from it the distinction makes all the difference in the world.

I'm no expert in hyperacusis and tinnitus - but it does in parts of your writing sound as if you're treating it as a diagnosis rather than a symptom (you seem to switch back and forth). In the diagnostic guide by Dr Clarke, Schechter and Schubiner (all leaders in the field) - they say the following about each:

Hyperacusis - "Assessment for PPD (TMS) is strongly recommended" - in other words, unless there is a clear structural explanation then it's highly likely TMS.

Tinnitus - "Hearing evaluation should be done first, PPD (TMS) if often a significant factor" - so same thing as hypercusis essentially - assuming the hearing evaluation is clear then it's likely TMS.

"I feel like loud sounds cause unrest I wouldn't have if I didn't have hypercusis" - absolutely I don't doubt that. We need to address the root of the fear first. If you are linking these issues to potential ear damage and hearing loss, then I'm not surprised that you would be terrified every time it happened, I would be in your position too. So that needs to be quelled through evidence and a belief in TMS. Once you get to a position that I am just really annoyed and any fear I have is how this impacts my life rather than these symptoms are going to cause me physical harm, then that's a position we can work with.

In terms of believing it is not caused by the sound itself but rather your frightened and defensive nervous system (that may not tell the whole story but just to keep it simple), we need evidence. I don't expect you just to believe because I or someone else told you so. The fact that it's inconsistent though and you have had improvements is great evidence. Clearly then there are other factors at play than just sound itself - otherwise it would be super consistent and exactly the same all the time. I would then be analysing those inconsistencies and looking at my emotional world both when it is good vs when it is bad. Was I in a better headspace when I had improvements? What was going on in life at the time? We haven't even discussed what was potentially going on at the time of your life when the symptoms first started, which can tell us a lot.

Hopefully that makes sense - think psychologically Once you get to the point where you are very strong on it being TMS (and this is reflected in the fact that you know symptoms aren't harmful at least physically - I understand they are painful and suck) and you can see how your emotional state impacts the symptoms (which then gives you confidence as you know you are under control to a large extent - there's much you can do to improve your internal state) - then the fear will naturally dissolve

 

If you hadn’t gone, it’s possible your brain might have chosen another area of your body to express the pain—often somewhere that already feels vulnerable or has a history of trouble. But since your ear pain reliably captures your attention, it’s become your brain’s chosen ‘channel’.

You’ve mentioned you experience OCD, and OCD is a form of anxiety—essentially a sign that the brain is acting fearfully. TMS symptoms are the brain's way of showing that fear physically. Since your ear has been examined by a specialist and no structural damage was found, that supports the idea there’s no physical cause for your pain in response to noises.

The next step is to begin practising ways to reduce your brain’s fear response—techniques that calm and reassure it, helping it to feel safe again.