Bloody ups and downs

[Mani]

@BloodMoon and @Adam Coloretti (coach)

You have no idea how much ive been enjoying this back and forth. Ive been fixing to send back a couple of examples in which i encountered symptoms but ive had pretty significant belly aches. I'm not really nauseous, i wonder if its tms too.

I personally feel like ive done a lot of trauma work so no idea why theres new symptoms popping up. Maybe its the symptom imperative

I'll get back to you guys with my own experiences and how i struggle with my relationship with sound.

As always I want to thank you both. I'm immensely grateful to all the people taking the time to reply to my questions and stories

 

[Adam Coloretti (coach)]

@BloodMoon and @Adam Coloretti (coach)

You have no idea how much ive been enjoying this back and forth. Ive been fixing to send back a couple of examples in which i encountered symptoms but ive had pretty significant belly aches. I'm not really nauseous, i wonder if its tms too.

I personally feel like ive done a lot of trauma work so no idea why theres new symptoms popping up. Maybe its the symptom imperative

I'll get back to you guys with my own experiences and how i struggle with my relationship with sound.

As always I want to thank you both. I'm immensely grateful to all the people taking the time to reply to my questions and stories

You're welcome!

 

[Mani]

@BloodMoon @Adam Coloretti (coach)

So... Here I am. I have barely eaten for three days as my intestines have just been giving me a ton of shit. Was scared i had appendicitis as especially right side of stomach hurt a lot. Hospital trip wouldve been a catastrophe but luckily that wasnt needed and i remain safe in my attic.

So, I just wanted to go through some examples of my experiences with hyperacusis. I dont consider it a diagnosis but it has become part of my identity, thats for sure. Somewhere along the way i kind of started waging a war on sound and i pretty much dislike any sound now -- though some way worse than others.

August 2024:
Sound sensitivity had started a month ago and i felt devastated at the time. My progress through one month had been incredible however, sensitivity had gone down significantly and i was going on a vacation with my mum. During the trip the train had that pressure release thing they do after stopping and that shocked me. I wasnt wearing earplugs and i just felt crushed. I wanted to go and lie somewhere in a dark silent place. I couldnt cause we were only halfway there. You know how it goes, you just kind of have to pick yourself up cause halfway a trip is not a place to start revolting. I didnt notice immediate loudness increase but i just felt violated so kept my earplug in through the rest of the journey.
The next morning i noticed the shower started bothering me, i was telling myself that i was making it up. Lots of incredibly loud mopeds up and down annoying as fuck. We went out to eat at a restaurant where they had some music playing, it bothered me but i didnt wanna kill the vibe so we didnt leave. I started wearing earplugs during any dinner and i cringed at digital noise.

DISC:Btw the folks paying attention: Yes, this trip was way too much for me to handle at the time. I shouldnt have gone and i put myself in a situation where i was not in control of anything and just didnt really feel safe.

3 days in i was sitting at a restaurant where there were a lot of kids playing and screaming. Incredibly bothersome so had to put in earplugs once again. When we got back to apt I got the worst case of whatever it was that i had ever and we had to go to the hospital and i was passing out and whatever, I could no longer walk. After this i was put on antibiotics for appendicitis and my sound sensitivity kept increasing. Flight home was the worst day of my life cause we were legit sitting next to the most awful kid ever and it was during landing phase and he just kept screaming at the top of his lungs and i was sitting next to this kid just terrible. After flight my tinnitus came back and my sensitivity increased once more.

This is all quite a long winded story but this is how stuff like this goes. You have the sounds that really sound too loud, but also a lot of sounds that i just start cringing at.

I was playing football with my mates some time after but there was a party going on about 2-300 yards away. It wasnt too loud, especially with earplugs but i didnt want to be there. I couldnt hear it at all whilst playing but after i felt drained and uncomfortable. Was not a good experience

In a rush of euphoric stupidity i decided to play futsal. I was so stressed and i thought it went semi well but when i came home my tinnitus was louder and i once again felt drained and uncomfortable. Mind you these last examples i wasnt even aware of sounds that were too loud, just the general feeling of not being safe was enough to put me out, or maybe it was the sound too. I honestly have no idea but this is why i felt at the mercy of my body, and still kind of do. It was around this point that i started waging a war on all sounds. Couldnt handle this, couldnt handle that, stopped showering stopped being able to listen to airplanes taking off from inside. All these little sounds that werent too loud but just made me cringe and uncomfortable; showering was actually too loud btw.

I took up all this space to try and explain something. I dont really know how it works exactly but it has been so hard for me. Especially digital sounds as a whole: i just cringe at them so much. I find them unbearable now but i used to just cringe at them but that still didnt feel safe. During sound exposure i was telling myself that i was ok but after getting back to actual safety it never felt like a positive experience. I always felt unsafe and drained.

What people here are saying is: setbacks will happen, even after recovery. That means that if in 5 years i get another setback and imagine there is some music just playing in the background. I either have to sit there and keep constantly thinking about how annoying the bloody music is, or i put plugs in and reinforce the idea that the sounds are actually dangerous. I find this so incredibly hard. I have no idea how to deal with setbacks. One thing I do feel and try to embody is the not being scared of setbacks thing. I just find myself getting soooo annoyed at sounds that arent necessarily 'too loud', and i either avoid them and just reinforce theyre dangerous, or i confront them and i still reinforce theyre dangerous cause i cant take my bloody mind off them.

I have millions of little stories like this where i was telling myself i did so great with conquering another new sound and how brave i was. But to be frank, i always felt awful and drained and terrible and unsafe after.

I dont even really know what im trying to get out of you. Maybe anyone else feels called to reveal some insights. I would welcome any replies. Thanks all

 

[Cactusflower]

@Mani
Do not worry now about the future and what you may and may not feel, same with harping on the past. It does no good and it steals your peace. You feel at mercy of your body because frankly, it's easier on your mind right now than being at the mercy of the breadth of your emotions. That will change.
You will never be without fear, of any kind.
You'll never be without anxiety of many kinds... why? Because they are natural and human. The safety you will create will be within yourself instead of because of external things like your attic space alone. You'll have some symptoms (perhaps not your current symptom, it could be any response of the body) but the point is to work towards not having chronic symptoms.
I too was afraid of symptoms early on, afraid of flares and other things happening and that it would be a vicious and endless cycle. However I also needed people to be very honest with me about that. The point here is SUFFERING.
I just had a flare. I spent a few hours where I felt kind of depressed and worried about an event I have this week. Rest of the time I have not been my happiest self, but I've also not been miserable. Fear pops up on and off but it isn't an fearful anxiety eating at me - it's just some fear thoughts that try not to give too much credence too. I let them be there, but the weight of them has shifted so much over time. It's just not so heavy now.
You will get there. The brain is amazing, and it can make shifts that you don't even really realize are happening. The OCD like thought loops will begin to fade, your interest in the things you used to love will blossom once again and take up much more space in your mind.
I think what you've written above has some great revelations in it.
You feel the need to control things: many things that are often not within your control like your environment.
You probably do not acknowledge anger and or fear what might happen if you get angry: kids were bothersome, you had interference with your football game by others etc. - this relates to control in many ways
You mention intolerance of "Feeling" uncomfortable - unrelated to the current physical sensations but it seems more like it might be the emotions of certain situations. It might even be many layers of emotion eg. anger at the football game but also disappointment that the game was over and joy of being with your mates. Imagine joy and anger living inside of us at once! It's kind of a confusing clash, isn't it ... but having both simultaneously is OK.

You worry about people understanding you: you explain about your symptoms repeatedly to us - and trust me, we absolutely understand. This is really just your mind in TMS loops - it tends to do that and it's like running on the hamster wheel that never ends. It's all just a rush of thoughts, and when we don't feel safe it's also a mixture of needing to feel understood as a way to build that safety. But that kind of safety is external (which isn't a bad thing - we all like to feel heard and acknowledged). The key is to acknowledging this to yourself and being OK with feeling vulnerable and not perfect and all the other things we think we are "supposed" to be in societies eyes. The truth is, you are just Mani, and that's cool. Just the way you are even with all your symptoms is pretty great. You have come so far and are doing things most kids your age would never ever accomplish. We see you.

 

[Adam Coloretti (coach)]

@Mani
Do not worry now about the future and what you may and may not feel, same with harping on the past. It does no good and it steals your peace. You feel at mercy of your body because frankly, it's easier on your mind right now than being at the mercy of the breadth of your emotions. That will change.
You will never be without fear, of any kind.
You'll never be without anxiety of many kinds... why? Because they are natural and human. The safety you will create will be within yourself instead of because of external things like your attic space alone. You'll have some symptoms (perhaps not your current symptom, it could be any response of the body) but the point is to work towards not having chronic symptoms.
I too was afraid of symptoms early on, afraid of flares and other things happening and that it would be a vicious and endless cycle. However I also needed people to be very honest with me about that. The point here is SUFFERING.
I just had a flare. I spent a few hours where I felt kind of depressed and worried about an event I have this week. Rest of the time I have not been my happiest self, but I've also not been miserable. Fear pops up on and off but it isn't an fearful anxiety eating at me - it's just some fear thoughts that try not to give too much credence too. I let them be there, but the weight of them has shifted so much over time. It's just not so heavy now.
You will get there. The brain is amazing, and it can make shifts that you don't even really realize are happening. The OCD like thought loops will begin to fade, your interest in the things you used to love will blossom once again and take up much more space in your mind.
I think what you've written above has some great revelations in it.
You feel the need to control things: many things that are often not within your control like your environment.
You probably do not acknowledge anger and or fear what might happen if you get angry: kids were bothersome, you had interference with your football game by others etc. - this relates to control in many ways
You mention intolerance of "Feeling" uncomfortable - unrelated to the current physical sensations but it seems more like it might be the emotions of certain situations. It might even be many layers of emotion eg. anger at the football game but also disappointment that the game was over and joy of being with your mates. Imagine joy and anger living inside of us at once! It's kind of a confusing clash, isn't it ... but having both simultaneously is OK.

You worry about people understanding you: you explain about your symptoms repeatedly to us - and trust me, we absolutely understand. This is really just your mind in TMS loops - it tends to do that and it's like running on the hamster wheel that never ends. It's all just a rush of thoughts, and when we don't feel safe it's also a mixture of needing to feel understood as a way to build that safety. But that kind of safety is external (which isn't a bad thing - we all like to feel heard and acknowledged). The key is to acknowledging this to yourself and being OK with feeling vulnerable and not perfect and all the other things we think we are "supposed" to be in societies eyes. The truth is, you are just Mani, and that's cool. Just the way you are even with all your symptoms is pretty great. You have come so far and are doing things most kids your age would never ever accomplish. We see you.

Love this! And @Mani I thought the exact same thing when reading it that @Cactusflower talked about with the revelations.

I read it and thought what is Mani really upset/angry about? The symptoms appear to me to be a protection at what is underneath. To use a hypothetical (this may or may not be true to you), I thought of an adult child with a parent, but that parent doesn't respond well to anger directed at them, so whilst the adult child may have a lot of built up rage, he/she can't safely express it to the parent - it needs to be expressed somewhere though. This can happen in a few ways - either small things really agitate the adult child more than they should - e.g. like you alluded to maybe you are out to dinner with the parent and the music is too loud and it annoys the crap out of the adult child (the person isn't sensitive to sound in my hypothetical it was just a good example) - it makes sense because the anger needs somewhere to go. Symptoms can have the same sort of goal or usefulness for want of a better term - it's an outlet but it also protects.

Now you're clearly capable of anger and fear at the symptoms themselves - and fair enough! I'm more interested in what you're angry about deep down, and a better question to ask is who/what are you angry at/about? What anger (by this I mean certain anger towards a person or situation) has your brain deemed unacceptable? There might be shame at feeling it (very common with family, especially parents) and the brain isn't willing to feel that shame.

The overt need to control to me usually has the same roots and is tied to perfectionism. Usually at some point we've been made to feel as if we aren't good enough, and we've decided that the only way to be good enough is to control everything (needing to be in a good headspace all the time to please, needing everyone to like us, making sure our work is perfect so we are successful, you could have 100 examples here). There is an inner part of us (usually said to be the inner child) that hates this and has great rage at anyone even insinuating to us that we weren't good enough in the first place, but the moral parent (as Steve Ozanich put it, or the superego to quote Freud) shames and guilts that part to make sure we stay in line to get our basic needs met (enraging that part of us even more). There could have been a lot of conflicts going on in your mind on that train ride. One that seems reasonably clear is you said "halfway trip is not a place to start revolting" - I get that there might not have been too much you could have done, but that sounds like the moral parent to me and is akin to needing to behave yourself and not be a burden (revolting is a strong word and I imagine you'd be more sympathetic to someone else experiencing the same thing). My inner child in a similar situation would have been saying to me "no, we need help and I'm struggling, this is no different to any other medical emergency and I'm not going to downplay it for anyone on this train or mum or anyone". Also, there may have been a lot of internal pressure to be good company on the trip and not be seen to be a burden (especially travelling with a parent), so that would make sense that anything that started small initially would have exploded. Often what the symptoms mean (either overall or in a specific moment) impact the severity of the episode way more than any external stimulus (in this case the noises).

Now I'm not saying that the inner child is necessarily right all the time, but TMS healing comes from an appreciation of these conflicts and also a better balance. Those with TMS are way too tipped over to the side of the moral parent and put the needs of everyone else above their own. Then their symptoms are most of the time the inner child screaming for even just validation and appreciation, but also action towards tending to those needs.

When I read this I think you're not angry at the mopeds, or the kids, or even the sounds they make or the symptoms themselves (you are in a way but that is just a diversion), you're likely legitimately angry at a lot of other things but you haven't appreciated/acknowledged it, whether that's for fear of being a bad person, a bad child or whatever. If I had to guess, I would say the symptoms are basically your inner child saying "I am so f**ng sick of having to control everything and everyone to be liked and loved, I hate it and I just want to feel that way for who I am, I shouldn't have to earn it through control". Your superego is then basically saying something like "that's ridiculous, don't be so selfish, we all need to try hard in life and be good to earn our stripes " or, if the anger at the above finds its way to our caregivers growing up or another figure from childhood, which it inevitably does because you weren't born feeling unworthy "don't be so ungrateful, how dare you shame your parents (or insert someone else) like that". Ironically, the symptoms push you to a sort of decision. Sounds are just another external environment things to control, but it's telling that the more you try to control it the worse it is and the more fear it generates. If this is true, will you listen to the symptoms and give yourself permission to let go of some control (more importantly in life itself not just the symptoms) and trust that you are enough regardless of what happens without that control?

I might be well off base here, but even if I am I like to speak this way to sort of unveil the way that you need to start thinking (looking at the symptoms psychologically rather than physically and find what is truth for you amidst my assumptions) to heal. The need to control I would say would be something to really look into and investigate (what are you truly afraid of without it? - and the answer can't be ear damage assuming that you now know it's TMS - I'm talking more generally life wise) - it is probably what led to the sensitivity in the first place absent of a big trauma around noise - i.e. maybe a specific sound didn't land that well (can happen to anyone) and was uncomfortable - but it was made to be much bigger based on other personal factors or things going on in life. I see this all the time and it's the exact same thing that happened to me (I had a normal injury, but due to a number of factors, including never having an injury before but also more majorly due to crazy gym perfectionism which was a coping mechanism for my social anxiety - I reacted like it was the end of the world and that turned a 3-4 week injury into 6 years of life altering chronic pain - to avoid facing my true fear of social anxiety - which was exposed even from a short one month gym lay off to recover - I latched onto the pain (subconsciously) as a protection/distraction in the long term).

Find what makes sense to you (this can happen over time and it doesn't need to be as specific as my example) and it will show the path to healing

 

[Mani]

@Adam Coloretti (coach)

This is great and really gets me thinking. Its telling how I write an essay about symptoms and you both dismiss it. I dont mean this in a negative way, its just interesting how much more advanced your TMS scope has gotten.

Personally, without immediately dismissing everything youve said, I feel like my need to control others is a product of sound sensitivity, not the other way around. It's also pretty good for the family dynamics that everyone has to adapt to me now, it used to be that I always did whatever other people wanted me to. I have learnt to hate asking for help, and I have to now get used to the fact that I constantly need my folks to help me. It is in a way also nice to know that theyd do that for me.

I used to live without acknowledging my feeling at all. Rationale was all i knew and all i thought i needed. I have always been way more sensitive than i realized. Being sensitive just didnt fall within the masculine frame i wanted to see myself in.

Since this whole ordeal started i have done so much emotional work, I have had so many revelations about my life and how I can improve my life going forward. To not dismiss every sensation I feel as a subjective timely state, but to acknowledge it as a part of me. I just really feel like sound has become the main issue. I'll give it some time, and I'd like to investigate this on this forum by asking the 'TMS-experts' for help, but ugh its hard. Bottled up emotions used to be a really big problem but I feel as though I've become way better at that. Controlling externals is so opposed to what I used to be doing, but i do notice how incredibly distracting it is and how much it keeps you from feeling within.

For me this all started with: Chronic stress on solo trip -> coming home and doing way too much way too soon (i just wanted to have fun and not worry so much anymore) -> noise accident -> another noise accident -> improvements -> trip to Italy (too much stress and noise) -> improving again but started just wanting to control everything

Especially controlling-wise, I have things to tackle still. After the last couple of weeks though, I honestly have faith that I can maybe turn this ship around. Its just -- you say that when things get safer, the need to control all sounds will fade. I completely believe this, but how do I get safer? Every time I go outside of my bubble and into the real world, I'm confronted with a sensation ive almost grown allergic to.


Like I said, I dont want to disrespect you by just going off on my own rant, but ugh -- my relationship with sound just flat out sucks. I have written and thought so much, ive been to therapy. I have done so much to express my bottled up emotions. I just feel like theyre no longer as big an issue as they used to be.

I believe the bottled up emotions and the huge pressure i put on myself, caused the symptom in the first place. Now though, after trying to work on this for 18 months, I feel like a lot of my unhealthy habits have gone away. I've had so many revelations, in a way that I just know that its not just helpful for TMS but just generally, as a human. My way of living was not at all sustainable.

Yes, on my trip to Italy I felt an immense pressure to be a funny travel buddy; that gave me a lot of stress. I think that the anxiety that goes along with that, is much more of an issue than 'mad at everyone'. I have done so much to acknowledge my emotions, I just feel like theres something else here: the relationship with sound.

The thing about uncomfortable sounds which made me anxious at the time -- and still does a little bit -- is the getting worse. To be fair I have started letting go a bit, but I obviously dont want to get worse. Because of my single sided deafness, i have always been so wary of loud sounds. I never tolerated them because i was extra sensitive and I knew that I only had one ear.

I'm sure my responses make you feel a certain way. Maybe you think I'm purposefully avoiding stuff. I dont think I am, but I'd like to hear your 'judgement' anyway.

Like this restaurant we went to. I felt pressure to sit there because my mum wanted to sit there; I wanted to give her joy, not be too complicated you know. I feel like the sound was uncomfortable to me anyway, and the pressure i felt to make myself uncomfortable to please others is why i got tms in the first place. However, that sound wasnt dangerous, it was nothing, it shouldve meant nothing, but it still made me so uncomfortable. I never had this need to control my environment.

'Not being too complicated' was a very big issue in my life which ive been made aware of through this TMS journey. My way of being loved and good enough was to never ask anything of others. I'd rather suffer than have someone else do something for me.


@Cactusflower

I know these things should fade if i actually do the work. But they faded before, and I completely failed my 'exam'. Ugh -- maybe im just missing the point entirely, who knows. I'm just striving to be good. I feel like, anything which can be resolved by just putting in the work, I should be able to work my way through. But man, when I finally get there, one uncomfortable sound incident shouldnt be enough to send me spiraling down again.

 

[Mani]

And yes, youre completely right, I should worry less about the future, but how? I think all the time and I just want to beat this, I want to live. I want to be ready for whatever comes at me. I dont want to fall into the same trap again.

 

[BloodMoon]

I haven't had time this morning to read the latest replies to you and your latest responses (so forgive me if I may have missed some important information and points) but this is what has struck me about your situation, @Mani …

You’ve mentioned a number of times how others your age seem to be getting on with life — and that comparison can quietly add a ton of pressure. You can end up feeling stuck while everyone else is apparently moving forward.

Sometimes, when we don’t know what we want to move toward (or we do know, but we’re scared to pursue it for whatever reason) the brain creates a kind of barrier, using the body to do so — almost saying, “Wait, don’t push me into something I don’t understand or I’m not able to contemplate or face yet.”

There can also be anger tied to what we don’t want to face and feel, or what our brain doesn’t want us to express, the latter being because it might not feel safe or socially acceptable to do so. Instead of letting that out directly, it can get redirected into the body (as a distraction).

I never really knew what I wanted to do when I grew up — and maybe that resonates with you too. For me, bodily symptoms have tended to show up most when I’ve felt trapped or boxed in, trying to meet expectations that didn’t feel like mine. The irony is that the brain tries to protect us from feeling stuck or lost by creating another kind of trap.

(In my case, my TMS completely floored me — I became bedridden and housebound — around the time I was too old (in my late 50s) to realistically start over career‑wise. It wasn’t financially possible to begin again at the bottom, and changing employers was harder too, since many preferred younger people over experience. That period also coincided with the end of a long‑term relationship, which only deepened the sense of being lost.)

I don’t think your recovery will purely be about gradually showing your brain that the sounds you’re currently hypersensitive to are safe. I suspect it’s also about slowly finding your way toward things — work, hobbies, ideas, or beliefs — that feel meaningful and self‑chosen.

(I began to feel better when I assessed and started to accept that I’m naturally a “butterfly”, wanting to flit from interest to interest — and that it's okay. However, I could also see that had made my life difficult... I was a 'round peg' being forced by social norms and culture into a 'square hole'; had I have realised that earlier though, I would have made different decisions and found my 'home' and peace.)

Recovery can start with small moments of curiosity, imagination, or enjoyment that remind you there’s more to you than this current all‑consuming sensitivity. From your cellar or attic you can explore this (as I did in my bedroom from my bed)... to start off with using your imagination, if nothing else. This is how I think you will find your peace (with the pun intended, but far from being meant in a jokey way).

As that sense of inner direction grows, I think your brain's reaction around sound will start to lessen. Real progress won’t be about catching up with others, but discovering what your kind of forward looks like.

 

[Adam Coloretti (coach)]

@Adam Coloretti (coach)

This is great and really gets me thinking. Its telling how I write an essay about symptoms and you both dismiss it. I dont mean this in a negative way, its just interesting how much more advanced your TMS scope has gotten.

Personally, without immediately dismissing everything youve said, I feel like my need to control others is a product of sound sensitivity, not the other way around. It's also pretty good for the family dynamics that everyone has to adapt to me now, it used to be that I always did whatever other people wanted me to. I have learnt to hate asking for help, and I have to now get used to the fact that I constantly need my folks to help me. It is in a way also nice to know that theyd do that for me.

I used to live without acknowledging my feeling at all. Rationale was all i knew and all i thought i needed. I have always been way more sensitive than i realized. Being sensitive just didnt fall within the masculine frame i wanted to see myself in.

Since this whole ordeal started i have done so much emotional work, I have had so many revelations about my life and how I can improve my life going forward. To not dismiss every sensation I feel as a subjective timely state, but to acknowledge it as a part of me. I just really feel like sound has become the main issue. I'll give it some time, and I'd like to investigate this on this forum by asking the 'TMS-experts' for help, but ugh its hard. Bottled up emotions used to be a really big problem but I feel as though I've become way better at that. Controlling externals is so opposed to what I used to be doing, but i do notice how incredibly distracting it is and how much it keeps you from feeling within.

For me this all started with: Chronic stress on solo trip -> coming home and doing way too much way too soon (i just wanted to have fun and not worry so much anymore) -> noise accident -> another noise accident -> improvements -> trip to Italy (too much stress and noise) -> improving again but started just wanting to control everything

Especially controlling-wise, I have things to tackle still. After the last couple of weeks though, I honestly have faith that I can maybe turn this ship around. Its just -- you say that when things get safer, the need to control all sounds will fade. I completely believe this, but how do I get safer? Every time I go outside of my bubble and into the real world, I'm confronted with a sensation ive almost grown allergic to.


Like I said, I dont want to disrespect you by just going off on my own rant, but ugh -- my relationship with sound just flat out sucks. I have written and thought so much, ive been to therapy. I have done so much to express my bottled up emotions. I just feel like theyre no longer as big an issue as they used to be.

I believe the bottled up emotions and the huge pressure i put on myself, caused the symptom in the first place. Now though, after trying to work on this for 18 months, I feel like a lot of my unhealthy habits have gone away. I've had so many revelations, in a way that I just know that its not just helpful for TMS but just generally, as a human. My way of living was not at all sustainable.

Yes, on my trip to Italy I felt an immense pressure to be a funny travel buddy; that gave me a lot of stress. I think that the anxiety that goes along with that, is much more of an issue than 'mad at everyone'. I have done so much to acknowledge my emotions, I just feel like theres something else here: the relationship with sound.

The thing about uncomfortable sounds which made me anxious at the time -- and still does a little bit -- is the getting worse. To be fair I have started letting go a bit, but I obviously dont want to get worse. Because of my single sided deafness, i have always been so wary of loud sounds. I never tolerated them because i was extra sensitive and I knew that I only had one ear.

I'm sure my responses make you feel a certain way. Maybe you think I'm purposefully avoiding stuff. I dont think I am, but I'd like to hear your 'judgement' anyway.

Like this restaurant we went to. I felt pressure to sit there because my mum wanted to sit there; I wanted to give her joy, not be too complicated you know. I feel like the sound was uncomfortable to me anyway, and the pressure i felt to make myself uncomfortable to please others is why i got tms in the first place. However, that sound wasnt dangerous, it was nothing, it shouldve meant nothing, but it still made me so uncomfortable. I never had this need to control my environment.

'Not being too complicated' was a very big issue in my life which ive been made aware of through this TMS journey. My way of being loved and good enough was to never ask anything of others. I'd rather suffer than have someone else do something for me.


@Cactusflower

I know these things should fade if i actually do the work. But they faded before, and I completely failed my 'exam'. Ugh -- maybe im just missing the point entirely, who knows. I'm just striving to be good. I feel like, anything which can be resolved by just putting in the work, I should be able to work my way through. But man, when I finally get there, one uncomfortable sound incident shouldnt be enough to send me spiraling down again.

Don't worry about me and you are being respectful! You've linked how your emotional world seemingly got you into these symptoms and also have done a lot of emotional work in those areas - brilliant! No judgment from me - no one is holding a gun to my head to respond and I want to help - plus I've had far worse reactions to my messages trust me.

I don't necessarily think you're avoiding anything either and I believe you when you say you've come a long way with the emotional work. Have you felt as if you have been able to implement that irrespective of the pain? Do you feel like you have more self-compassion and are better able to tend to your needs? It's obviously always a work in progress (it is for me too) - you don't have to reach perfection for symptoms to go away, but the fact you are aware that you have work to do around control is good.

What I would then focus on away from that (and this is more symptom focused) is two-fold (if I were you/if I were coaching you):

1. Is there still genuine doubt around whether this is truly TMS? It is ok if so, and that can grow and take some time to seep in, but that will contribute to your panic at the symptoms if there's still some genuine doubt (I'm taking about doubt that can be logically dismantled through evidence).

2. Related to 1 (and this probably comes after you've really nailed step 1), you are clearly aware of how your emotions led to the symptoms - how are you at linking the symptoms you experience currently with your emotions, both in terms of when you get triggered as well as the severity? (e.g. I've noticed that when I'm stressed about other things then I am way more sound sensitive). The reason this step usually requires a complete step 1 is that if you still think it's physical and are worried about making it worse from a structural perspective (I know you said make it worse and you probably meant the severity of the symptoms, but even so you need to be clear to your brain that whilst symptom severity is one thing they are actually harmless from a structural and therefore long term basis), then you'll be too obsessed with the symptoms and your conditioned responses (worried about the sounds and seeing that as a causative link to the symptoms), then you won't be aware enough of your emotions in those moments to take notice. I am working with a guy right now that follows this pattern, he's only now starting to make those links now that he truly believes it is TMS, before he was in too much of a panic to look at it emotionally.

That's the pivot I would be looking at based on what you said - no one knows you better than you - so this is supposed to be self-led and I wouldn't want you blindly following what I said if it didn't resonate anyway!

 

[Cactusflower]

And yes, youre completely right, I should worry less about the future, but how?

The book Hope and Help For Your Nerves by Dr. Claire Weekes gives instruction.
Stop thinking of TMS as a “trap”. The sensations are not a trap, the suffering is the trap. Claire Weekes explains it.

 

[HealingNow]

And yes, youre completely right, I should worry less about the future, but how? I think all the time and I just want to beat this, I want to live. I want to be ready for whatever comes at me. I dont want to fall into the same trap again.

I've recently come to a realisation that I can talk to my mind either in "What Ifs" or "So Whats"

My worst fears used to be that what if I lose my job and my response to my TMSing brain... So what.

It's been really helping me accept my future

 

[BloodMoon]

You'd think that saying "So what" wouldn't work because you might still actually be worried about "What if" and thus you'd just be kidding yourself... but saying "So, what" actually has a kind of Pavlovian affect on the brain, e.g. kind of like when you think of something sour like a lemon and the salivary glands secrete some saliva, there's an automatic response to the words and you actually 'feel' the "So what". Great stuff! And, thanks, I'm definitely going to be using it!

P.S. In relation to this, I've not read the whole book, but this is an excerpt from Andrew Newberg, M.D. and Mark Waldman's book 'Words Can Change Your Brain', and according to them...

"A single word has the power to influence the expression of genes that regulate physical and emotional stress. By holding a positive and optimistic word [such as peace, love, gratitude] in your mind, you stimulate frontal lobe activity. This area includes specific language centers that connect directly to the motor cortex responsible for moving you into action. And as our research has shown, the longer you concentrate on positive words, the more you begin to affect other areas of the brain.

Functions in the parietal lobe start to change, which changes your perception of yourself and the people you interact with. A positive view of yourself will bias you toward seeing the good in others, whereas a negative self-image will include you toward suspicion and doubt. Over time the structure of your thalamus will also change in response to your conscious words, thoughts, and feelings, and we believe that the thalamic changes affect the way in which you perceive reality."

 

[Diana-M]

the pressure i felt to make myself uncomfortable to please others is why i got tms in the first place.

This is a big realization, @Mani! Sorry you are still suffering so much, but from my perspective you are truly making progress.

 

[Mani]

Love this! And @Mani I thought the exact same thing when reading it that @Cactusflower talked about with the revelations.

I read it and thought what is Mani really upset/angry about? The symptoms appear to me to be a protection at what is underneath. To use a hypothetical (this may or may not be true to you), I thought of an adult child with a parent, but that parent doesn't respond well to anger directed at them, so whilst the adult child may have a lot of built up rage, he/she can't safely express it to the parent - it needs to be expressed somewhere though. This can happen in a few ways - either small things really agitate the adult child more than they should - e.g. like you alluded to maybe you are out to dinner with the parent and the music is too loud and it annoys the crap out of the adult child (the person isn't sensitive to sound in my hypothetical it was just a good example) - it makes sense because the anger needs somewhere to go. Symptoms can have the same sort of goal or usefulness for want of a better term - it's an outlet but it also protects.

Now you're clearly capable of anger and fear at the symptoms themselves - and fair enough! I'm more interested in what you're angry about deep down, and a better question to ask is who/what are you angry at/about? What anger (by this I mean certain anger towards a person or situation) has your brain deemed unacceptable? There might be shame at feeling it (very common with family, especially parents) and the brain isn't willing to feel that shame.

The overt need to control to me usually has the same roots and is tied to perfectionism. Usually at some point we've been made to feel as if we aren't good enough, and we've decided that the only way to be good enough is to control everything (needing to be in a good headspace all the time to please, needing everyone to like us, making sure our work is perfect so we are successful, you could have 100 examples here). There is an inner part of us (usually said to be the inner child) that hates this and has great rage at anyone even insinuating to us that we weren't good enough in the first place, but the moral parent (as Steve Ozanich put it, or the superego to quote Freud) shames and guilts that part to make sure we stay in line to get our basic needs met (enraging that part of us even more). There could have been a lot of conflicts going on in your mind on that train ride. One that seems reasonably clear is you said "halfway trip is not a place to start revolting" - I get that there might not have been too much you could have done, but that sounds like the moral parent to me and is akin to needing to behave yourself and not be a burden (revolting is a strong word and I imagine you'd be more sympathetic to someone else experiencing the same thing). My inner child in a similar situation would have been saying to me "no, we need help and I'm struggling, this is no different to any other medical emergency and I'm not going to downplay it for anyone on this train or mum or anyone". Also, there may have been a lot of internal pressure to be good company on the trip and not be seen to be a burden (especially travelling with a parent), so that would make sense that anything that started small initially would have exploded. Often what the symptoms mean (either overall or in a specific moment) impact the severity of the episode way more than any external stimulus (in this case the noises).

Now I'm not saying that the inner child is necessarily right all the time, but TMS healing comes from an appreciation of these conflicts and also a better balance. Those with TMS are way too tipped over to the side of the moral parent and put the needs of everyone else above their own. Then their symptoms are most of the time the inner child screaming for even just validation and appreciation, but also action towards tending to those needs.

When I read this I think you're not angry at the mopeds, or the kids, or even the sounds they make or the symptoms themselves (you are in a way but that is just a diversion), you're likely legitimately angry at a lot of other things but you haven't appreciated/acknowledged it, whether that's for fear of being a bad person, a bad child or whatever. If I had to guess, I would say the symptoms are basically your inner child saying "I am so f**ng sick of having to control everything and everyone to be liked and loved, I hate it and I just want to feel that way for who I am, I shouldn't have to earn it through control". Your superego is then basically saying something like "that's ridiculous, don't be so selfish, we all need to try hard in life and be good to earn our stripes " or, if the anger at the above finds its way to our caregivers growing up or another figure from childhood, which it inevitably does because you weren't born feeling unworthy "don't be so ungrateful, how dare you shame your parents (or insert someone else) like that". Ironically, the symptoms push you to a sort of decision. Sounds are just another external environment things to control, but it's telling that the more you try to control it the worse it is and the more fear it generates. If this is true, will you listen to the symptoms and give yourself permission to let go of some control (more importantly in life itself not just the symptoms) and trust that you are enough regardless of what happens without that control?

I might be well off base here, but even if I am I like to speak this way to sort of unveil the way that you need to start thinking (looking at the symptoms psychologically rather than physically and find what is truth for you amidst my assumptions) to heal. The need to control I would say would be something to really look into and investigate (what are you truly afraid of without it? - and the answer can't be ear damage assuming that you now know it's TMS - I'm talking more generally life wise) - it is probably what led to the sensitivity in the first place absent of a big trauma around noise - i.e. maybe a specific sound didn't land that well (can happen to anyone) and was uncomfortable - but it was made to be much bigger based on other personal factors or things going on in life. I see this all the time and it's the exact same thing that happened to me (I had a normal injury, but due to a number of factors, including never having an injury before but also more majorly due to crazy gym perfectionism which was a coping mechanism for my social anxiety - I reacted like it was the end of the world and that turned a 3-4 week injury into 6 years of life altering chronic pain - to avoid facing my true fear of social anxiety - which was exposed even from a short one month gym lay off to recover - I latched onto the pain (subconsciously) as a protection/distraction in the long term).

Find what makes sense to you (this can happen over time and it doesn't need to be as specific as my example) and it will show the path to healing

You know, my world has become so tiny. Usually I would be busy worrying about any and everything. Theorizing and whatever was what i did all day. Lying awake thinking... Thinking thinking thinking. I also used to worry a lot about the world and the things that i feel are wrong. I have always felt the need to change things and to persuade people to agree with me. I dont want to use this platform for politics but there are things in the world which make me incredibly uncomfortable. Also right now, I dont have a life and I'm already worrying about my position in the complex frat dynamics in 3-5 years, and at my job thereafter. It doesnt make any sense, for me to have any life in 3 years would be a big win in my book. I'm responding to the implementing thing btw, I dont think you were able to tell based off this rant

I try to implement these things sure but my catastrophic habits dont just die within a fortnight. I mean, I'm probably not even aware of it most of the time, but sure yeah, I try to stop berating myself. I also like to use journaling to get all the gunk out so they dont dominate the rest of my day so much.

I dont have to tell you but its so hard to cater to my needs. I dont even know what my body needs most of the time. I try to notice signs like cold feet to measure how bodily aware i am. Usually cold feet for me are a sign i need to stop doing things with my head and just start feeling more.

Theres no doubt in my mind that I have TMS and that my symptoms are TMS, but I am really scared of the symptoms. I dont know, I have been in so much pain and pain doesnt scare me at all, hut loud sounds scare me to death. I dont want to keep making comparisons to other terrible things but loud sounds just feel so unsafe. This is probably due to loads of reasons but I am really worried i wont be able to get rid of it. Thats why im still quite cautious with sounds, even though i do try to reintroduce them. I understand how disabling cfs and fibro are and i dont want to keep discrediting people, but for me, sound sensitivity is about the worst thing in the world and it has always been this way. Going to loud environments I always wore earpugs when i all my friends didnt and thats why its so ironic that im homebound with tinnitus and H and theyre out there living life. I know how scary I find sounds, and I just dont have a lot of faith in myself. I'm really dedicated and sometimes I can feel the fire burning within but i do know how scary i find loud sounds. I probably need to try changing the scope but for now loud sound has meant danger to me. Since tms its meant set back. I didnt get a lot of set backs because i have been better at coping with sudden loud sounds and soothing myself, than at the longer sounds which i start dreading and going crazy. These little sounds made me put plugs in and that just increased my sensitivity again. Its just hard...

Ive had chronic fatigue problems, and not being able to shower because of fatigue was dehumanizing but it didnt feel dangerous. Now, showering does feel dangerous, when im showering i cant help but think about how bad im gonna be after showering. Even if i gaslight myself into thinking about a waterfall, i still will feel scared, and after my body will know that it was not as pleasant as i was gaslighting myself into believing.

I have no -- or very very little -- fear that my ear is actually damaged. And even if i did believe my ear was damaged i -- yeah no my ears arent damaged. If they were it wouldnt even matter cause if i dont do anything ill never get better.

I've never believed my ear was damaged, but it didnt matter. I knew I was capable of making my situation worse by either not maintaining a good relationship with sound or by exposing myself to noises that were too loud. Thats what sent me down this dark dark path: the fear that i was gonna make it worse. To be frank, I'm still fearful about that. I know how intense I find loud sounds and making it worse is gonna make it harder to deal with.

Theres a certain baseline for things and going below it just makes things harder. The symptoms do feel very tangible. I mean, you wouldnt believe the sounds i cant stand, youd think im insane. Just to expain a bit, being able to walk in the park listening to birds and being happy and calm is very different to sitting at home trying to emulate that feeling. Some of these things you just cant do anymore at a certain point; thats what i find particularly scary


I think i quoted the wrong message but the forum is shaky so i wont try and fix it.

 

[Mani]

I haven't had time this morning to read the latest replies to you and your latest responses (so forgive me if I may have missed some important information and points) but this is what has struck me about your situation, @Mani …

You’ve mentioned a number of times how others your age seem to be getting on with life — and that comparison can quietly add a ton of pressure. You can end up feeling stuck while everyone else is apparently moving forward.

Sometimes, when we don’t know what we want to move toward (or we do know, but we’re scared to pursue it for whatever reason) the brain creates a kind of barrier, using the body to do so — almost saying, “Wait, don’t push me into something I don’t understand or I’m not able to contemplate or face yet.”

There can also be anger tied to what we don’t want to face and feel, or what our brain doesn’t want us to express, the latter being because it might not feel safe or socially acceptable to do so. Instead of letting that out directly, it can get redirected into the body (as a distraction).

I never really knew what I wanted to do when I grew up — and maybe that resonates with you too. For me, bodily symptoms have tended to show up most when I’ve felt trapped or boxed in, trying to meet expectations that didn’t feel like mine. The irony is that the brain tries to protect us from feeling stuck or lost by creating another kind of trap.

(In my case, my TMS completely floored me — I became bedridden and housebound — around the time I was too old (in my late 50s) to realistically start over career‑wise. It wasn’t financially possible to begin again at the bottom, and changing employers was harder too, since many preferred younger people over experience. That period also coincided with the end of a long‑term relationship, which only deepened the sense of being lost.)

I don’t think your recovery will purely be about gradually showing your brain that the sounds you’re currently hypersensitive to are safe. I suspect it’s also about slowly finding your way toward things — work, hobbies, ideas, or beliefs — that feel meaningful and self‑chosen.

(I began to feel better when I assessed and started to accept that I’m naturally a “butterfly”, wanting to flit from interest to interest — and that it's okay. However, I could also see that had made my life difficult... I was a 'round peg' being forced by social norms and culture into a 'square hole'; had I have realised that earlier though, I would have made different decisions and found my 'home' and peace.)

Recovery can start with small moments of curiosity, imagination, or enjoyment that remind you there’s more to you than this current all‑consuming sensitivity. From your cellar or attic you can explore this (as I did in my bedroom from my bed)... to start off with using your imagination, if nothing else. This is how I think you will find your peace (with the pun intended, but far from being meant in a jokey way).

As that sense of inner direction grows, I think your brain's reaction around sound will start to lessen. Real progress won’t be about catching up with others, but discovering what your kind of forward looks like.

Interesting. I've generally felt a lot of pressure to be better than my peers at everything. I have always looked down upon myself. Hated when i couldnt do things, or wasnt with the people i wanted to be with. However, I think I do know what I love to do and what I want to do. I have wanted to become a judge since i was 10 yo. I have always sought to achieve this and i was on my way. To be fair there's been a bit of trouble on the road and i definitely need to resolve this first.


Furthermore i love sports, botg playing and watching. Mostly football but I honestly love anythinh. I also loved being with my friends. Funny isnt it, I love my friends, theyre great people. Yet, I've always been mad at myself for not having other friends. These guys are great but I have always felt like we missed something. I'm so thankful for them, but I used to not appreciate them enough. Its how my life works, I just shame myself for anything I can come up with. TMS has given a load of insight into how destructive that is.

 

[Mani]

The book Hope and Help For Your Nerves by Dr. Claire Weekes gives instruction.
Stop thinking of TMS as a “trap”. The sensations are not a trap, the suffering is the trap. Claire Weekes explains it.

Do you have a specific chapter? I have bought the book and read in it quite a lot already but ive found it doesnt lend itself that well to cover to cover reading. I would love to read about this

 

[Mani]

This is a big realization, @Mani! Sorry you are still suffering so much, but from my perspective you are truly making progress.

Right? I have journaled a lot and done therapy and done whatever else; its why i dont think bottled up emotions are the huge problem they used to be for me. Feel like theres just destructive behavior still there.

How have you been doing?

 

[BloodMoon]

Interesting. I've generally felt a lot of pressure to be better than my peers at everything. I have always looked down upon myself. Hated when i couldnt do things, or wasnt with the people i wanted to be with. However, I think I do know what I love to do and what I want to do. I have wanted to become a judge since i was 10 yo. I have always sought to achieve this and i was on my way. To be fair there's been a bit of trouble on the road and i definitely need to resolve this first.

Furthermore i love sports, botg playing and watching. Mostly football but I honestly love anythinh. I also loved being with my friends. Funny isnt it, I love my friends, theyre great people. Yet, I've always been mad at myself for not having other friends. These guys are great but I have always felt like we missed something. I'm so thankful for them, but I used to not appreciate them enough. Its how my life works, I just shame myself for anything I can come up with. TMS has given a load of insight into how destructive that is.

There's a theme and irony here: you aspire to be a judge (needing fairness/balance), yet judge yourself and friends critically. Maybe your TMS is urging you to sort that first?

 

[Cactusflower]

Do you have a specific chapter? I have bought the book and read in it quite a lot already but ive found it doesnt lend itself that well to cover to cover reading. I would love to read about this

Consider that what she has written is the truth, and that your mind is finding it difficult to reconcile with what she has written. You've mentioned struggling with anxiety for a very long time, it, and many of it's habits (fear, thought loops, believing every thought is true, worry, etc) are all things Ms. Weekes writes about. It's not a difficult read but it might be challenging if someone is simply resistant to the information. I'm not going to spoon feed you specifics. Those are part of what one discovers while reading the book. Keep reading it and applying what she writes. It probably seems really old-fashioned to but every word she writes is of such value. Pretend in your mind a little old grandma lady is kindly reading this book to you (her audios sound just like that!) - handing you a cup of tea, a biscuit and pat on the knee as she offers her advice with care and concern.

 

[Rusty Red]

Do you have a specific chapter? I have bought the book and read in it quite a lot already but ive found it doesnt lend itself that well to cover to cover reading. I would love to read about this

I almost never do this but I ended up finding that listening to her book was more helpful. Not sure why but I tried to read it twice and listening allowed it to penetrate better.