Please help me trying to make sense of this all

Have posted before so will skip the basics because the side business doesnt matter. I want to know how you would call my symptoms. Most of the time when i read about tms its about physical pain, usually from repressed emotions.

I've always repressed everything and have had a lot of somatic issues before, but never pain. It was ocd, anxiety, heart palpitations, stomach cramps, me/cfs. Also have a very high pain tolerance because i used to be terrible at feeling. I have always felt like my worth depended solely on my actions. Have always been anxious to handle everything perfectly -- or else they wont love me.

I was doing great the entire year though, was working 40h a week and doing great. I had changed some things in my life and felt stronger than i had felt in forever. Afterwards, I went on a trip to thailand and my ocd immediately sky rocketed. I was convinced i had contracted rabies and got so freaked out. I was fine during the day and then when i was alone at night my anxiety sky rocketed. I was so scared of dying that i couldnt fall asleep without being in a call with my folks.

After a month of crippling anxiety i decided that enough is enough, and went home. 6 days after going home someone blew an airhorn into my ear. Symptoms (hyperacusis and tinnitus) started right there and then but got better incredibly quickly. It was only after the second and third noise incident that i got worse again and from there on never had improvements.

What do I make of this? My doctor (who is very well respected in the tinnitus space), his programs are great and have a great success rate, says it is central sensitization, that I'm in a permanent fight or flight response and that i just need to learn to calm my nervous system again and that all will be fine. Its been more than a year now and my nervous system is not fine. I get startled incredibly easily, not just by sounds but also by movements. I physically jump up when someone appears in front of me. I look like a gazelle just discovering a cheetah.

People on this forum have called this 'central sensitization' BS. I'm trying to figure out: what else is it called? What lessons am i supposed to have learned? How will I ensure that I wont start suddenly spiraling again? I cant really explain it very well in one post, but i would just like to have a convo about what caused this, why its remained and how i can teach myself to not let it happen again. I have known it was TMS from the moment the second acoustic incident hit. Id just like to have a philosophical conversation about why i got TMS and what this TMS means.

Thanks a bunch. Would love to hear from you all.

 

"What caused it?" Answer: anxiety. (At its essence mind/body/TMS is anxiety.)

"How can I teach myself to not let it happen again?" Answer: deal with/reduce your anxiety...

Do this by committing to doing a mind/body/TMS program that will get you going in the right direction to lower your anxiety and calm your nervous system down, such as Tanner Murtagh's 3-steps totally free 30 day program on YouTube https://www.tmswiki.org/forum/threa...chronic-pain-other-symptoms-on-youtube.33091/

 

@JanAtheCPA is right, your auditory sensitivity = my back symptoms in that the mind simply finds its place to focus and get our attention. This is not the “issue” as your doctor points out and you realize to a degree that it is your anxiety driving the show.
The first thing that you experienced this time your TMS symptoms began was anxiety.
How did that feel in your body? Did you notice the sensations and kind of freak out? Judge them as “bad?” Or as unwanted? I’ll give you an example of my own anxiety sensations: I suddenly get cold, I often feel uncomfortable and want loose or stretchy clothes. I want to be alone. Thoughts race. Not nice feelings but.. if I just let them be and experience them, they pass. Maybe in a short time, maybe a few days.
Emotions are physical sensations and most often proceed increased anxiety, then you add the layers of sensations of anxiety. We try to push it all away mentally and it builds up even more and we get panic, like you did before you could sleep.
This is why I’ve recommended reading any book by Claire Weekes to you.
You can post on this forum about the symptoms repeatedly but until you can engage in the work: not just for a few weeks or a month or even for a few months, you are not actively engaging in doing it.
Choose a program: your Doctors program, the SEP write a daily plan to follow and do it every day and when you feel a bit better: keep doing it.
It’s like math - sure you can learn to count and remember those easy concepts for life but when you learn things like calculus (do they still teach it?) you have to keep using it or you forget. Then when you sense the anxiety etc return you use your skills instead of freaking out, and you won’t need to have as many episodes of TMS.
Your reactions to things won’t be perfect. You are human, you are going to feel things. Everybody does. It’s just that not everybody reacts in a way that keeps the nervous system in overdrive.

Instead of writing about your symptoms we’d like to hear about what you are learning by doing the work, the work you are doing (SEP or another method), the schedule you made for yourself, what you think of the Claire Weekes book etc.

 

Here is Nichole Sach’s teen component called Gen Z
I would suggest sending in the form and letting them know you can’t listen to the program because of symptoms and need a written transcription.
It is important they acknowledge your set of symptoms. I think what these younger folks have to say may resonate with you more.

https://www.yourbreakawake.com/GenZofferings (JournalSpeaking with Gen Z)

Also Dr. Schubiner has videos that explain your TMS to “make sense” of it. Turn off the sound, turn on the subtitles or CC so you can read the descriptions quietly. This YouTube channel has at least 5 episodes in this series of explaining pain.

 

Thanks for taking the time to answer thoroughly.

I'm dying to tell you and cactusflower(?) or bloodmoon or both this well whatever. I have done the ACEs, i think its a part of unlearn your pain which ive finished, but yes i remember writing about so called 'potentially traumatic experiences'. I felt like it missed the part that was so big for me personally. Let me give you an example:

I wanted to be the perfect child. I felt like not being a burden at all was all i had to do. My mom liked to tell me and my aunt and friends parents how well i ate fruit in kindergarten. "He always finishes his tray, so awesome so crazy" I was like 4 btw. I started feeling that my value was that i always finished my tray, that thats why i was so awesome. So one day i had pineapple in my tray and i found out i hated pineapple. I couldnt finish it. No biggie, or so youd think. But i had a full mental breakdown. I vividly remember this too. My anxiety wasnt about me not having fruit but it was about having to show my mom that i couldnt finish it, that i wasnt perfect. I thought my mom would love me less.

This is absolutely tragic to look back on, but this is how my childhood was. Me not wanting to be a burden also lead to me never talking about the things that happened. Can you imagine a 4 year old just fixing whatever comes to pass? Obviously not. I got lost a couple of times and had a panic attack too, also at the age of 4 and 5 (multiple times). I never told my parents about it because i was so ashamed i had lost the way.

These are my traumas and i have a million examples. This wasnt me or my parents being willfully ignorant, but its just the results of a mismatch in personalities. I never got the help that i needed. I had POCD when i was 6, you probably have to look that up. Can you imagine a 6 year old having POCD? It was absolutely tragic. It went on like this until i reached the age of 18. I have gone to a therapist and imo this should be like finding a big golden unicorn, like this is striking gold when a patient comes to you telling you this as a therapist. She never really understood what i meant. She just listened and started talking about other things. I'm using a lot of words but what do you think when you hear stuff like this. I feel like ive figured a lot of stuff out already but its really hard finding proper help. I have done a lot of emotional work and i feel like ive done quite well. But my symptoms havent lessened at all. I now know that fixing symptoms shouldnt be the goal. I'm changing my mindset regarding that.

 

Just imagine how youd feel if you started developing rabies symptoms while in another country without your loved ones. Thats exactly how i felt. My heart rate and body temperature went up, i started sweating, i had headaches, i felt like i would be dead within 2 days and i would be dying in a hospital where no one could even properly communicate with me. You might realize that the symptoms im describing are also the first symptoms of rabies. Please know that that did not make me feel any better lol. I just was so convinced rabies had started and that id be dead it was truly awful. My dad has always told me to just feel it, just let it happen and feel inside your body but i couldnt. It was just way too much to handle for me. I had gotten so much better at feeling inside my body but you cant imagine how i was doing. It was just a full blown panic attack everytime starting from midnight til 6 am. I was looking for buildings to jump off of for when i started feeling worse. Just way too much. I'd like to hear you respond ill go over the second part too.

You have no idea how much i appreciate you taking so much time out of your day to help me. I have always really struggled with asking for help and its just tremendously helpful for someone to just make me feel heard at least.

I'm currently doing the multimedia but because i felt like i just wanted to do some extra with no stress i also started with the other program. 'the educational whatever whatever'. I'm doing so much better than i was doing a week ago. Purely symptoms wise that is. I got kind of lucky that i started the self improvement thing just as my medication went into the higher dosages.

Also another thing id like to throw up. I always had heart palps every other day (pretty much without fail) but it didnt do anything. Just made me lie down and feel my body and itd stop after 10 minutes or so. I used to treat it as a sign that it was just my body telling me that i wasnt listening enough, but i dont understand why heart palps didnt make me freak out at all. In a way they almost felt nice or something. Is this considered tms too? What does it say that i eliminated that without a lot of issues but that hyperacusis just wont go away?

I will discuss claire weekes with my parents tomorrow. See if i can find a free pdf somewhere. schedule is hard when you cant shower, cant set an alarm and cant go outside. I have started incorporating multiple things though. I do these programs, i nap, i meditate. I feel like strict schedules force me into the ocd side which has never really done me good.

Other question: I used to do sprint training. I tried doing them too when my hyperacusis started. However, i always had to force myself to go there, it was never really fun or anything. Am i just not listening to my body properly? I really struggle because being too disciplined about everything I feel has only ever meant that i was less in touch and feeling worse. I just feel its the 'ignoring the body' with which i have a lot of experience. My symptoms were always worse after sprinting. I thought sprinting was good for me and i had to do it thats why i kept doing it. I was very conflicted about this. Should i be kind to myself and do more of what i feel like doing or should i be the disciplined army veteran i used to be? I find it very hard to navigate all this.

I mean, I'm trying to get to know myself better. Would be best if id become a better human after struggling for so long.

Thanks again. I really feel incredibly acknowledged. Its a great feeling and ive always missed it within my family

 

And also, even though this might not mean a lot to you, you're a breath of fresh air.

You know i watch a lot of videos on youtube with subtitles because it works. I have started watching dan buglios 'pain free you' too. After consulting with so many people, telling them my stories, only to then get sent back a voice memo or an audio file. I understand that its a pretty hard concept to grasp that i cant even stand digital sound at the lowest setting but its soo nice to have someone tell me: 'i know you cant use sound, just use subtitles.' At the same time it is so frustrating when people try to help you and you cant even listen to the advice and i feel so bad and i just yeah im sure you get what i mean
thanks thanks thanks


Im going on the nicole sachs thing right now. I really need to make sure i dont become too obsessed and put too much on my plate. I never know how to dose properly, always start doing too much. This is my opportunity to actually learn some stuff.

 

Approach things slowly.
You don’t wanna cram your brain and shove all this in your mind in one dose.
Your mind made up it’s process of how you handle to world, years ago as an infant and little kid. For 19 years it was doing its best and now you need to tell it that best no longer helps. This is where subconcious comes into play now.
It’s like your little invisible little kid screaming Noooooo! You’re wrong! We don’t do it the new way! I want the old way!!!!!! And it gives you more symptoms to keep you “safe” were it thinks safe should be. But you are older, that old way no longer works. However throttling that little kid and forcing it to learn and learn “now” is the opposite of safe. That threatens that little kid. It sends messages of you’re “wrong” or “bad” for the old ways. Think what influence that has on the nervous system!
Instead for an hour or two a day you gently introduce the new way. This is why you make a schedule and follow it. A little bit in your day and no more. You also add in learning to do things like meditate (all the things we’ve written to you about before). Then do other stuff.
Your mind might think doing more will help you “solve” or “fix” this faster but it does not. That feeds the obsessive, anxious and restlessness you feel. Your Dr. has well explained that there is nothing to “fix” but something to get back to naturally regulating. You can’t force it, pressure it, teach it by cramming etc. those are the old ways, and did not work for you.
Go back and re-read all your own posts and all the answers. Make notes on what speaks to you. Make your schedule.
If you don’t do these kinds of things we can’t help you along. This is up to you.

 

Heyy there! Hyperacusis is one of my symptoms too (one of the first ones that came up actually), but mine also shows up as actual nerve pain inside my ears bc of specific sounds. It’s so weird. My symptoms started after getting a virus at the start of this year, I’m almost sure it was Covid even though I never got tested. First I had dizziness for a month, then when that subsided I got the ear symptoms, followed by tons and tons of different and seemingly random issues one after another. Just off the top of my head here are some of the symptoms I’ve had:

-back/pelvis/hip pain
-a headache that lasted for a month
-sore abs like I had worked out when I had done literally nothing that could’ve made them feel that way
-stomach pain
-arm pain

and I got checked out by many MANY different doctors and none could find anything to explain all of this. I just finished Nicole Sach’s book tonight and now that I am about to be on Christmas break I’m going to finally force myself to try the TMS exercises. Something that’s been helping me is to remind myself that:

1) there’s no disease/issue that causes ALL of these symptoms at once. The only thing we know of that DOES cause all these symptoms at once….is TMS including long covid, which I’m almost 100% sure at least some of this is a form of.

2) what are the odds that after never having been the “something is always hurting or wrong with me and I’m always at the doctors” type at all my whole life, I would suddenly magically come down with almost a dozen completely different medical conditions each in completely different random parts of my body? This is actually what got me to first start accepting that it could be TMS - I could buy that I could be unlucky enough to come down with two completely different medical conditions in two completely different places the span of a year, but not three and definitely not TEN lol. (Seriously, this is the one that’s been helping me the most so far. Who could genuinely come down with headache problems, ear problems, stomach problems, tendinitis, TMJ, eye problems and dizziness all in one year after having been perfectly healthy/pain-free before that AND have no positive test results? Nobody)

I’m hyped to do the work and see what I notice. If anything it’ll definitely be good for my mental health! And I hope everything goes well for you too

 

We have very, very similar personality types, for me I think the biggest repressed emotion is fear and I’m tackling this big time at the moment (among with others!)

have you read Alan Gordon’s book The Way Out yet? That’s been a good one for me, albeit it’s my third reading given that my anxiety was so high the first two times I could barely take much in.

Tinnitus is one of my symptoms too, I empathise but you’ve got this. Being on here means you know you’re on the healing journey now.

 

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hey im sorry for not replying sooner. I was just um well not replying lol

I have started the structured educational program and i try to not do this in a perfectionistic matter. Thats why i try not to read 7 books at once. I got recommended a book by claire weeks so i think ill be doing that along the side. The way out will be next in line after finishing this.

I have always been quite a weird case cause my personality was wildly different at home than at school. At school i made sure to be assertive. I dont think im necessarily either passive or assertive but im not necessarily afraid to stand up for myself.

I wildly repressed everything at home though. Never felt like i was meant to be there and thus was always alone in my room. Felt wildly uncomfortable talking about myself at home which made me deal with all the shit happening all by myself. Whenever alarms needed getting set and schedules were compromised i always got the short end of the stick. No one felt like dealing with my very demanding sister. Its just a race to the bottom atp. Its funny cause i only needed the bathroom for 10 minutes, im really not hard to negotiate with. Well she always needed to be in there for a million hours. Was legit exhausting.

Everything went like this and i also always felt made fun of because my sister was also very jealous and needed affirmation herself. Well my childhood though not supposed to be traumatic was wildly uncomfortable and this bomb was ticking to explode which it did about a year ago when i forgot to take care of my OWN needs for the gazillionth time.

For my i feel like i repressed every emotion,, but mostly anger and fear. I'm sorry for trauma dumping on you it just felt like the proper moment lol

I havent spoken in a year, its kind of tragic. I'm still incredibly anxious about my future. I'd like to hear about your progress. If you ever feel like talking: shoot me a message. I'm in no position to really give advice but if you ever feel like going trauma for trauma: you know where to find me.

Thanks for your kind response<3


Edit: i just realised you didnt double text and youre a different person so i did in fact not wait a long time to reply. Im sorry

 

Maybe we could keep in touch You see i dont even have any pain but i just can no longer even talk. Think of all the things youre doing; probably zero things i could do without any ear pro. Writing about it kind of feels ridiculous in a way, I know how absolutely stupid it sounds but it just feels so overwhelming, almost any sound.

I'm quite sure nothings broken too. Problem is that my hyperacusis started off way less bad than its now. I was actually back to living life without plugs but had another really really stressful week and was back and thing sjust never got better after.

I'm always so anxious its gonna get worse, I legit dont know how to fix that. I have always dealt with problems by pushing through pain but that does not help. I really need to take care of myself but im terrible at it so far. Yeah im just so anxious, if it couldnt get worse id be better already. Im just terrified of setbacks. I need to be outcome independent but i have not found a way to genuinely actually be independent. Id love to hear how you are gonna tell yourself sounds arent dangerous. Its incredibly scary for me and some positivity would be a blessing.

Hope all will be well for you too obv <3 Chat to ya later

 

Makes sense! Try not be too perfectionistic about the SEP, I did this and got angry at myself for not following perfectly. Turns out, TMS healing doesn’t work like that, letting go is actually helping me. If I miss a day, I’m proud of myself for not punishing myself and letting me have a little break. It’s all good, takes the pressure off.

 

If it makes you feel any better, I wear foam plugs anytime I leave the house, so I’m not doing stuff with zero protection as you said.

I don’t have that many answers yet about getting cured because I haven’t gotten that far yet, but what I CAN give advice on is how not to actively make yourself more scared and worried.

The biggest thing you can do is NOT spend much time hanging out on the hyperacusis discussion forums like tinnitus talk or the one on Reddit. I did this in the beginning and it was the BIGGEST mistake I could have made. If you want to read some positive stories from ppl who got over their ear issues, type in “Reddit hyperacusis success stories” and you should only get the ones with the tag “success story”. This way you are basically filtering out the horror stories. You might think to yourself (like how I did) “well I have to read horror stories, so I know how careful I have to be” but that’s wrong. You’re probably plenty scared and careful already, you don’t need any more of that LOL.

What made me finally decide to step out of the forums was two things:

1) I noticed a trend where, anytime someone posted a success story, instead of being congratulated like they should have been, 99% of the reactions in the comments were: “oh lucky you. You must not have had it THAT bad. Meanwhile I tried what you did and I’m still stuck here” “be careful!!! I thought I was better and then I did X and now I’m even worse than I was before!!!” or even the person getting straight up banned from the subreddit. I noticed this was how the forums for a lot of the other issues I have/had (TMJ, back pain, etc) were also very similar.

2) I stopped spending hours there for a few days and noticed how much BETTER mentally I felt. That’s when I came up with the idea that I’d only go there to read success stories and not every single day. I told myself (idk how true it is but it helps me to think it) that those forums are only places for ppl who have completely given up on ever getting better to talk to other people who have completely given up on getting better and that I don’t belong there

Actually, this forum is the first one I’ve been on that DOESN’T have that weird negative energy

 

Really really good advice.

I was on countless of these echo chamber groups and forums convincing myself this was structural until it finally clicked that all the people on there also had TMS, and just hadn’t found the way out yet.

 

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...

 

TMS is a protector, if you don’t want to let it go - ask yourself what it’s protecting you from. Then look there at what needs to change.

My TMS protects me from self-punishment and anxiety. I know that once I convince my body I’m safe from myself. Me and TMS are going to be old friends.

 

Think psychological... It's not your body, with TMS it's your brain that wants to keep you where you are. To recover from TMS you need to gently persist with doing the mind/body psychological work.