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Please help me trying to make sense of this all

One thing I’ll say about this forum— It’s great for getting consolation and friendship. But it’s also great because people tell you the truth— Sometimes hard truths. It’s been hard for me to take, but it has helped me so much. I’ve noticed that whatever people tell me that makes me angry, is usually exactly the thing I need to work on. I’ve been on this forum for almost 2 years and that’s been the case. ❤️
 
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@Mani
You have had a tough life, my friend. And you’re still in it. For some reason, those who have it the worst just keep on getting more. I’ve had a hard life too. (Not a competition!) And yours puts mine to shame, it sounds like. My childhood was filled with neglect and some pretty severe abuse. There is a huge part of me that never seems to be able to shake feeling like a victim. (Because I was!) I even get mad when people on the forum say we have to stop being victims to get better. I say to myself: I’m alive and not dead ——(and I could be.) Does that count?

I have to believe. I MUST believe, that there is hope for all of us. All of us. Including you. Don’t give up—ever. Don’t let this break you. I promise you I won’t either. You are going to get better. I can feel it in your determination.

And yes… somehow… we have to stop being victimized by this TMS. We can out-bully our TMS and win.
You know, whenever i talk about how terrible my life has been so far, i kind of feel guilty. I mean, my parents werent divorced, i had a sister that tried to love me in her own way and some friends. Sadly, the fact of the matter is that me as a person with my characteristics was always destined to have a hard ass life. A lot of these problems as you might notice exist only within my head, but they feel real to me, really real. I shouldve gotten help way earlier, but i didnt, because i didnt speak, because i didnt feel safe. I was just in my room having ocd attacks when trying to sleep.

Its really not a competition. If id list the things loved ones have actively maliciously done to me, you wouldnt be so shocked. Dont discount your own experiences either, theyre real.

The hope thing is what keeps me going too. I just envision myself being the weird uncle that is just miserable in the attic and i want to do everything to not let that happen. This session has been kind of therapeutic to me. At least, im sad, i was angry 30 minuts ago. Back when i was younger i didnt really have any emotions so i think were progressing.
 
There’s this pattern I’ve noticed that almost everyone undergoes on the forum. You come in terrified. It takes a while to actually accept you have TMS. Then it takes a while longer to embrace that you could maybe get better. And it takes more time to accept that it’s going to take time and work to get better. Then you’re just mad that you’re not better. And after a while, sometimes even a year or more— You start to calm down and realize this is all doable, but it’s going to be difficult and it’s going to take time and a lot of work. And then —-you finally take a deep breath and you calm down. This takes time too! (See the common denominator here? Time!)
Oh my gosh! This is a perfect description of how we come into the forum. I was so terrified that I would never get better. Now that I've been doing this for about 9 months and have experienced time with no pain and seen my nervous system do crazy things, I 100% know this is TMS. Time is a big factor in this-also consistency with the work!
 
Oh my gosh! This is a perfect description of how we come into the forum. I was so terrified that I would never get better. Now that I've been doing this for about 9 months and have experienced time with no pain and seen my nervous system do crazy things, I 100% know this is TMS. Time is a big factor in this-also consistency with the work!
Ditto
 
This has been my experience as well. I started going on H forums when i didnt know whats happening but i quickly caught on to the fact that these people are miserable.

The thing that stood out to me the most is that all the people across the chronic pain forums act so similarly. People on r/fibromyalgia just have the exact same mindset as people on r/hyperacusis. Its just endless misery. With all due respect, these are people i dont identify with at all. I think your observation that these forums are for people that have given up is 100% correct.

I have wondered too: does my body really want to get better? I'm not sure, but I'll never reject the TMS diagnosis, no matter how bad i get. I'm such a typical TMS sufferer. I think me just letting go and doing the work and just worrying less whether I'm doing it wrong would be a great step. Problem is that that desire to do things right doesnt just change like that. The intention to do it just a little less every day does help, gives less stress.

The thing I'm worried about most is just not being able to let hyperacusis go. If someone blew an airhorn into my ear again after full recovery im just not sure id be able to just take it like that. This is the thing that I'm just really worried about. I feel so vulnerable...

I agree with all of that right there. My ultimate goal, as someone who loved traveling before all my symptoms started up, is to travel to/have fun experiencing my three favorite things:
1) go to Las Vegas (my favorite vacation destination)
2) go swimming in the ocean
3) ride my favorite roller coaster

But if I want to do those things I’m going to have to get to the point where I can be confident enough that they won’t cause worsening of any symptoms to try them

And also!! One other thing I do to try and distance myself from the ppl on those forums is NOT be afraid to type out the full word “hyperacusis”. So many ppl there use the term “H” the way you just did (that’s how I can tell you’ve spent a ton of time there actually LOL!) as if typing out the full word will cause something terrible to happen. Or better yet I just use the word “ear condition” because it’s not a scary medical term. It makes it seem more like my own personal thing which somehow makes it feel more like I might be able to overcome it. If it’s something specific to just me then who’s to say I might not be able to get over it some day? :)
 
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This has been my experience as well. I started going on H forums when i didnt know whats happening but i quickly caught on to the fact that these people are miserable.

The thing that stood out to me the most is that all the people across the chronic pain forums act so similarly. People on r/fibromyalgia just have the exact same mindset as people on r/hyperacusis. Its just endless misery. With all due respect, these are people i dont identify with at all. I think your observation that these forums are for people that have given up is 100% correct.

I have wondered too: does my body really want to get better? I'm not sure, but I'll never reject the TMS diagnosis, no matter how bad i get. I'm such a typical TMS sufferer. I think me just letting go and doing the work and just worrying less whether I'm doing it wrong would be a great step. Problem is that that desire to do things right doesnt just change like that. The intention to do it just a little less every day does help, gives less stress.

The thing I'm worried about most is just not being able to let hyperacusis go. If someone blew an airhorn into my ear again after full recovery im just not sure id be able to just take it like that. This is the thing that I'm just really worried about. I feel so vulnerable...

another thing too - this is how I know for a FACT I don’t belong there: there was a time at the beginning of this year when I was in the “actively looking for endless horror stories without really realizing it” loop where for those few months, my entire day consisted of: wake up, go to class, get back from class, fall asleep, wake up, do homework, sit in my room on Dr. Google reading horror stories, eat dinner, sit in bed until midnight crying to myself how my life was completely ruined and over, fall asleep, and repeat the next day. Even at this point where I felt like I had 100% completely given up, I still had the self control to not become one of the scary ppl on those forums who types snarky “just give up/you’re screwed/you’ll never get better so just quit now” messages to other ppl there. In fact I reached out to another person on there who was feeling the same as me and got her personal DM and we still talk now. She seems to be doing a lot better actually:) but she told me my a
This has been my experience as well. I started going on H forums when i didnt know whats happening but i quickly caught on to the fact that these people are miserable.

The thing that stood out to me the most is that all the people across the chronic pain forums act so similarly. People on r/fibromyalgia just have the exact same mindset as people on r/hyperacusis. Its just endless misery. With all due respect, these are people i dont identify with at all. I think your observation that these forums are for people that have given up is 100% correct.

I have wondered too: does my body really want to get better? I'm not sure, but I'll never reject the TMS diagnosis, no matter how bad i get. I'm such a typical TMS sufferer. I think me just letting go and doing the work and just worrying less whether I'm doing it wrong would be a great step. Problem is that that desire to do things right doesnt just change like that. The intention to do it just a little less every day does help, gives less stress.

The thing I'm worried about most is just not being able to let hyperacusis go. If someone blew an airhorn into my ear again after full recovery im just not sure id be able to just take it like that. This is the thing that I'm just really worried about. I feel so vulnerable...
 
I'm sorry, I don't understand what you are saying here... Are you asking how are you going to deal with the return of any symptoms when you thought you had got better and lost them? Or are you concerned that when you lose symptoms, you'll be frightened of them returning? Or something else?

I wonder about both of those things too, but I figure if I get to the point where I can knock the symptoms for a while, and keep successfully being able to knock them, then eventually they won’t scare me anymore because I’ll know what they are and how to make them stop quicker.

I already saw this happen with one of my symptoms last month, the first symptom to appear AFTER I had learned what TMS was. Basically all the muscles in my hands and forearms twisted and tensed up at the same time out of nowhere, and instead of panicking, I tried treating it like it was TMS and started talking out loud to it, that time and any other time I felt it pop up. I went “nooooo, stop it”/“no biting!!” like I was talking to a pet dog, “heyyy hey hey, it’s cool, we’re good” etc. like I was talking to a little kid, and one time I even (this sounds so stupid I’m almost mad that it worked but bear with me here) walked around the kitchen singing to it the chorus of my favorite song from Barney when I was six (I’m glad no one else was around to hear it lol):

Every time I did this, that symptom went away a little faster, and it also stopped happening as frequently until now in the present it rarely happens:)
 
I tried treating it like it was TMS and started talking out loud to it, that time and any other time I felt it pop up. I went “nooooo, stop it”/“no biting!!” like I was talking to a pet dog, “heyyy hey hey, it’s cool, we’re good” etc. like I was talking to a little kid, and one time I even (this sounds so stupid I’m almost mad that it worked but bear with me here) walked around the kitchen singing to it the chorus of my favorite song from Barney when I was six (I’m glad no one else was around to hear it lol):
Nice one! :) As you already know, Sarno said to talk to our brain. The trick is to experiment and find exactly what our particular individual brain will respond to, and you've done exactly that. With you it's a song from Barney and for me my brain responds to me telling it that it's 'being ridiculous'.
 
I haven't read all the posts on this thread, but to respond to your title plea for help:

My advice is to not try to make sense of it all. Just pick a TMS Recovery Program and "do the work" every day for a limited amount of time. Then put it aside and live your life the best you can without thinking about TMS. The work that you do will percolate through your psyche and change you and result in recovery eventually. This is the formula that has worked for me and many others.
 
I wonder about both of those things too, but I figure if I get to the point where I can knock the symptoms for a while, and keep successfully being able to knock them, then eventually they won’t scare me anymore because I’ll know what they are and how to make them stop quicker.

I already saw this happen with one of my symptoms last month, the first symptom to appear AFTER I had learned what TMS was. Basically all the muscles in my hands and forearms twisted and tensed up at the same time out of nowhere, and instead of panicking, I tried treating it like it was TMS and started talking out loud to it, that time and any other time I felt it pop up. I went “nooooo, stop it”/“no biting!!” like I was talking to a pet dog, “heyyy hey hey, it’s cool, we’re good” etc. like I was talking to a little kid, and one time I even (this sounds so stupid I’m almost mad that it worked but bear with me here) walked around the kitchen singing to it the chorus of my favorite song from Barney when I was six (I’m glad no one else was around to hear it lol):

Every time I did this, that symptom went away a little faster, and it also stopped happening as frequently until now in the present it rarely happens:)

Do you have any idea about how to make sound less loud? I noticed yesterday that i was feeling down because of some sound, i dont remember exactly what it was but it just annoyed me. I was like how do i get this any less loud? Then -- suddenly i had this moment of euphoric clarity. Every breath i took was more calming than the one before. I suddenly felt like the radical acceptance Jan talked about was within reach. I decided within myself that it may get worse or it may get better, but i need to seperate myself from the outcome, and it didnt just feel like words, it felt like i could maybe get a little bit better at being kind to myself every single day. This is easier said than done but i realized that there was no alternative at all. As I've said, my way out is becoming deaf, and thats hardly an optimistic measure. I felt ready to just be kind to myself, not because i want to get better, but because i actually want to be kind. This may sound so obvious but its really not to me.

I dont want to use big words because my mood is quite volatile., but I'll appreciate the good moments nonetheless. I felt at peace -- in a way that i havent felt for quite a while.

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To expand upon all this:

Very often I feel very much 'at the mercy' of my body. And that remains true, it might remain true for a long time. But -- if i cant force my body to something it doesnt want, perhaps i can teach my brain to live with it better. Not radically overnight, but slowly yet steadily. I realized i didnt have to get mad at myself for responding to noise, I would just say to myself: "maybe next time ill respond to this in another way. Same applies to everything else. I dont have to get mad at myself for just existing. It feels kind of mindblowing to me.
 
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The work that you do will percolate through your psyche and change you and result in recovery eventually.
I love this description, Ellen! The idea of the work percolating through the psyche feels so true — it really does happen slowly and naturally. People feel like they should be able to just jet-blast “the work” straight into their brains, but, of course, it doesn’t work like that. It’s more of a gentle percolation — maybe even a bit of filtration too — where things gradually seep through, the good stuff settles in, and the old patterns and fears slowly get filtered out.
 
I love this description, Ellen! The idea of the work percolating through the psyche feels so true — it really does happen slowly and naturally. People feel like they should be able to just jet-blast “the work” straight into their brains, but, of course, it doesn’t work like that. It’s more of a gentle percolation — maybe even a bit of filtration too — where things gradually seep through, the good stuff settles in, and the old patterns and fears slowly get filtered out.
I take great consolation in this wisdom coming from the two of you, great veterans of healing. ❤️
 
I love this description, Ellen! The idea of the work percolating through the psyche feels so true — it really does happen slowly and naturally. People feel like they should be able to just jet-blast “the work” straight into their brains, but, of course, it doesn’t work like that. It’s more of a gentle percolation — maybe even a bit of filtration too — where things gradually seep through, the good stuff settles in, and the old patterns and fears slowly get filtered out.
It's the "doing" and "not-doing" of TMS recovery.

I read this in the Nicole Sachs book Mind Your Body, and it provides a neuroscience explanation.

The nervous system perceives your desire to be different than you are as fear.

So being frequently fixated on recovery will only make things worse. This is definitely my experience.
 
As I've said, my way out is becoming deaf, and thats hardly an optimistic measure.

Heyy I just want to point out something I found out during my “sitting on the forums and reading every story there was out there at the time” phase. It sounds bad at first but it might actually make you feel a little more optimistic:

If you do what I suggested and look at the posts only tagged with “success story”, you’ll find a significant number of people who were able to get better by basically treating their ear issues as TMS (idk if they even realized that’s what they were basically doing because most of them never actually say “TMS” but their way of getting better involved nothing but mental training). Other people say they got on medicines that are supposed to be for mental conditions (like OCD) and then were able to get better.

On the flip side, there are some stories of people trying surgery to cure themselves (by surgically deafening themselves or cutting nerves in their ears) but out of all those stories, I’ve never seen one that worked. Most of them go something like “I woke up and had no pain and was so amazed that it worked, but a couple hours later it just turned out to be the numbing meds they gave me that just hadn’t worn off yet”.

Imo this is all very very good news, because to me it seems like all of it points to it being a brain issue and not a “broken part” issue. I think the reason medicine has helped some ppl is because it calmed them down/slowed their brain down enough to let them START the healing process and then they did the rest on their own. When you have a bunch of ppl sharing success stories, and there’s literally none that came from having surgery but a ton that came from treating it mentally, that’s a pretty damn big hint LOL
 
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