Seeking guidance for hyperacusis

Dear reader,

I'm a 19 yo old. I have been suffering from hyperacusis for roughly a year and a half. It happened after a period of chronic stress, when someone blew an airhorn into my ear. It got better at first and i could go on vacation again. Some acoustic shocks and a hospital visit later, i was back at the start.

I read Unlearn your pain and i tried working on it. Sadly with christmas and new years last year i had so much stress and i wrote until i had nothing left to write about but it didnt get better. I felt completely exhausted from everything and over time it got worse and worse until i couldnt speak anymore, no more showers, barely going outside. I'm a living soul and theres a bunch of things im really passionate about but i can hardly do anything anymore. I've started clomipramine (am at 150mg), its doing something but sounds have not really gotten any less loud yet.

I dont know what to do. I cant go to a therapist, i cant do guided meditation cause i cant stand digital sounds. That also means i cant call a therapist. My parents are taking good care of me (thank goodness) but I've just not been able to find my way out. I have a history of TMS-symptoms, most notably: OCD, heart palps, anxiety, stomach cramps. All these happened for seemingly no reason at all and well ive just had a load of problems like this my entire life.

I know ive always repressed everything. I have an incredibly high pain tolerance which is just because i hardly feel anything. All my life ive known nothing but to ignore signals of the body and to push through everything. I felt neglected half the time and afraid I wasn't good enough the other half. I have always been way too hard on myself and pretty much nothing is going the way i want it toI went to a therapist when i could, but sadly i cant go any longer. I never spoke to my folks about my life and I went through all my problems entirely on my own.

I'm a broken individual. I have so much to live for, yet nothing seems to work. Since the clomipramine went up I've found some extra space to work on this again and i didnt wanna waste the chance. I have written books of letters to everyone telling them how mad and sad i am that things went like this. I still find myself holding grudges against my siblings for things they did 10+ years ago. I'm doing something wrong and this is my last chance. I have gotten way better at feeling my body. I am more in touch, I just generally got better at noticing myself; noticing what happens. Nothing I have done though, has lessened my symptoms. It got better at the start when i was so fearful and i didnt even know what tms was. After my first bunch of setbacks its just gotten worse and worse and worse. That was with knowing about tms and working on it and doing everything i can to get better.

I know my ears arent broken, yet my body does not agree at all. Ignoring symptoms doesnt help because they get worse. I have tried telling my body theres nothing to fear for longer than a year now and I'm still doing terribly. Can anyone please help me? Ask me some questions, give me something to work on, just something. Please

 

Hi Mani!

(assuming you’ve been checked out by a doctor)

Im sorry for what you’re going through! If we are living in fear, if our world is increasingly getting smaller and smaller then no amount of telling our brain that we’re safe is going to work. In fact it’s probably confusing the hell out of your brain, you’re saying one thing but your actions are saying the real story. Listen, I get how tough this is, I’m just crawling out of a really dark few weeks after having my best month back in October. It sucks, it isn’t fair. But we need to avoid falling into total victimhood. We can acknowledge that this is awful while simultaneously recognizing how much power we have to make positive steps. You are going to have to convince your brain that you aren’t broken. Because if we are ascribing to this TMS stuff then our brains are trying to protect us, whether that’s from emotion trauma, or from the outside world it deems is dangerous. Chronic pain is a perfect way to keep us locked away, removed from, the outside world, and distracted from emotional wounds. It sounds like you’ve done some emotional work, so I think it’s time to start challenging the symptoms, embracing the discomfort and doing things anyways, and if there is a flare then there is a flare. We may not have much control at this stage about when flares come but we have so much control about how we respond to them. If we have a setback and panic, then the brain realizes what it’s doing is working, it has no reason to change its strategy. But if we confront ours fears in regards to living and activities and move on in spite of the flares and pain then the brain will have to rethink its strategy. And eventually that strategy will become the cessation of chronic symptoms.

you have your whole life ahead of you, you’re so young, this is a blip, your brain is giving you a message about the dysfunction in your life and soul. You’re listening to it, praise yourself for that, now it’s time to cultivate some belief in yourself and reengage in life as much as is possible, maybe that’s baby steps to start but you need to start.

 

Thanks for your response.
I have tried doing that and it just has not worked for me, it just did nothing. Even if my symptoms didnt get worse after it was still stressful and not positive and just nothing. I cant control sound so usually exposure means im just able to do less later on in the day. Ignoring just does not help. If my body tells me im tired or raises my tinnitus, usually i would always ignore it but it just does not feel like the message my body is sending me. Its not: ignore us some more. that has always done you good. Just what would you have me do, i have tried and it was not positive and just nothing. I have tried when i was doing way better and i kept at it for a long while and it hasnt made me feel better just one bit.

 

"I'm doing something wrong and this is my last chance"

Here in is a lot of what is going on. SO MUCH pressure on yourself to get it "right" to get it "perfectly right" to no longer "hold grudges" on your family members...

@Rabscuttle is absolutely right that your brain is simply giving you messages of dysfunction because it feels that it's safer to keep you small instead of allowing yourself to be large and in charge. Don't believe it. You have FAR more control than you think you have, you've just been trained to think you don't have as much control (growing up especially in families, it's often easier for others to navigate their own way by controlling others. When we learn to allow others to control us, we get messages that we simply "can't" - which isn't true. Like Rabscuttle says, it's just the crap in our heads we listen to instead of seeing these things for what they are).
When you are writing etc. are you writing only about your conscious angers and grudges? Have you explored auxiliary and repressed angers? The things you might not have even realized or recognized *might* be possibilities for subconscious rage? Examples are the people who never protected our feelings - those who simply did nothing or were wrapped up in their own world (of personality traits or their own hurts) and did not recognize what was happening to us - eg. the parent who glossed over our feelings or let the other parent do all the parenting. The grandparent who saw how older siblings "teased" the younger more sensitive sibling but didn't ask us how we were feeling about it... - you don't necessarily need to write about this right now. You can also "have a meeting with yourself" to spend 15 minutes or half an hour considering and accepting the fact that you may simply have some inner rage, sadnesses etc. that you aren't aware of and that are normal and natural for all humans. Take stock of some of the personality traits you've employed and notice how they might harm you in some areas, while in other areas they could be of great benefit.
You can meditate without aural guides: starting with 3-5 minutes of simply sitting and feeling the sensations of yourself in your body, which you are beginning to feel some success with: feet on the floor, butt in the seat, air on the skin. Another method is to open your eyes and just slowly look around the room and gaze gently at things that draw your eye. You might choose to gaze at things of a certain color one day, or a certain texture. Go slowly and for short periods to begin to train your body that your senses are absolutely just fine.
Work on a few moments a day of LONG exhales. This simply helps your nervous system to get into a different state. You want it to be able to begin to flow though it's states instead of feel like it always needs to be on "high" alert.
Have patience with yourself, and THINK of the things you are passionate about. Maybe you can't do them right now, but can you visualize doing them? Imagine you do these things can really remind your mind of how enjoyable they are. This is how I started being able to get back into doing things. My own passion is gardening and in my mind I was able to re-design my own garden, to build imaginary gardens etc. Eventually I could spend time making lists of plants I imagine I might grow, and then to draw my designs out. This was hard for me as I could not sit nor stand. Looking at anything was difficult symptom wise. But it was a quiet activity (I did not have audible symptoms but simply could not stand noises).
Eventually I worked on not judging the physical symptoms and my own "state" of agitation, anxiety etc within those symptoms. Listening was difficult but I stopped thinking a day was "worse" because my hearing was more sensitive, or that I was getting "worse" because my visual stuff was getting more involved. Eventually I had someone tell me it was all related - a set of symptoms they termed as "dysautonomia" which simply means a disregulated nervous system and something in my mind just clicked. I began to simply let all these sensations go and eventually even laughed at how my brain could create such imaginative symptoms.
It was probably a year after this I was able to go to an EMDR therapist who helped me greatly. After several appointments (I didn't even go very often, just once every few weeks) and her describing what happens to the mind during EMDR, the anxiety began to settle somewhat and I began to feel there wasn't anything "wrong" with me.
I write this so you can see that sometimes things just take more time than we'd like them to, but you WILL get through this. The only way out is through it. Find one element you can work on now - like the breathing and do that for awhile. When you can do things like increase time you do it, or increase the frequency you can sit and do it then try the visual exercise. When you master that, try the silent meditation. If things don't work the way you want to - begin to let go of the judgements that you are failing at it because it's not true. You might just not be ready to do those things yet, and can find something else to focus on like expanding your tolerance to interests, or spending more time visualizing the good things that will be coming to you in your life.

You mention that holidays last year were hard. Have some kindness and patience for yourself and feel free to say "no" when you need to. In future years you'll be able to do all the things!

 

mani I never said anything about ignoring. Ignoring is not what you should be trying to do. It isn’t possible. You’re doing in spite of the symptoms. And while doing you should be talking to yourself/your brain, uplifting yourself. “I appreciate you looking out for me brain but Im doing this anyways and if you want to give me symptoms so be it.” and praising yourself for your resilience. Of course it’s stressful, if it weren’t stressful would you be in this situation? You need to prove to your brain that you’re okay. It’s how you respond to the stress, if you just fold at any push back then yeah nothing good is going to happen. But if you react to the stress with calm and clarity that what you’re dealing with is a tms then the ball starts to roll and you can make progress.

 

Thanks for your sweet words

These are all things I've tried doing. I know everyone keeps telling me to stay positive and to do this and that but I really dont have much more ground to give. It is just the honest truth that after a full year of working my butt off to feel my body, think of nice things, try to tolerate more sound, it has left me with nothing. I have done like 20 emdr sessions to go along with them. I have felt how exhausted i was before starting medication. I feel like I'm at the mercy of my body. When i feel exhausted, I cant handle anything anymore. Before I started clomipramine I was just done with this battle. I have really read all these peoples works and took them to heart, but still, being as dedicated to getting my life back as i was, it didnt do a thing. I could not get even a smidge better. It just made me believe that I must do something else, I must be missing something. I know everyone is going through hardship here and that I'm not a special case, but really life can suck a lot. It is nothing short of a miracle that I've been fairly happy this last year. I cant control sound, when i do some exposure i just cant do anything after. I rode my bike for 10 minutes (double ear pro) which was kind of nice but doing that for 20 or 30 minutes wont make sound less loud. I just cant seem to get sound any less loud. I need to notice that I can do something. I know you tell me that I've the wrong mindset but I have really really really tried. I couldnt take it anymore. It is only because of medication that i found some rest and spirit.

I will be doing breathing again, i will be doing meditation again, i will even be picturing how amazing my life could be but why doesnt it work. I know my ears arent broken but i just cant take it anymore.

 

I have tried doing all of these things. I try to not get scared and im pretty good at it im a stoic guy. The problem is that even when i dont catastrophise and maybe dont even get a setback, i just am not getting better. I was getting better when i was scared and thinking of how tragic my life good be. I just got better without even trying. I thought i was trying but in hindsight i really wasnt. I got better though. I know I must be so annoying to talk to. I just -- the ball I've tried to get rolling has just not felt like rolling. I feel like the way I'm doing this is just not it. I need a new insight, something. I can gaslight myself all i want but this is nothing short of a catastrophe. Acting calm, even though I've felt like I was awesome at it, has not made anything better. I barely get setbacks, I think that is because I dont catastrophize. Getting better however, just feels impossible. I know how to remain calm, but I hate sound. I need to do something and tell you what happens and I hope youll understand what i mean.

 

Mani I’m no expert. But if you think someone is going to type some words or speak some wisdom to you and you’re going to be on the path to healing, you’ll be waiting a long time. You’re already TMS aware, you’ve already cultivated a good amount of knowledge. It’s up to you how you want to proceed. Because I do get it, there is a comfort and familiarity with relishing in the misery of our symptoms. Do you think you deserve to be symptom free?

 

@Mani
You've made it your goal to have sound "less loud" - this is = to me having a goal of no back pain all the time.
You understand that you have some emotional pain, and you've tried facing it. You understand what being OK with being uncomfortable is emotionally to some degree.
However, what you must do is get comfortable with ALL discomfort. Even if sound is grating, even if it is physically uncomfortable. You must also get used to your anxiety being there. Just let it be. If you start with all the "I can'ts" it means you are allowing yourself to be a victim to all of this and say you have no control. That is EXACTLY what TMS is.
You need to do the "things" (like I said, choose one thing) and do it for weeks or months until you can do it and feel a bit less discomfort doing it. Choose the things that don't challenge your sound issues right now. Simply allow yourself to feel that creepy crawly discomfort, the feeling like you want to jump out of your own skin. When your brain says "AH NO MORE" after a few seconds just say "a few more seconds, you are just fine".... eventually you will do these things. Little steps, slowly, gently. However you must stop saying "I can't".
I suggest tomorrow that you sit down and have a "meeting with yourself" and draw up a contract. You decided who is in charge and you decide if you are going to do this or not.

Let that decision sit with you, and then the next day, begin drawing up a plan, or a schedule.
You start with 7am: Wake up.
Then you follow with 7:10 brush teeth
maybe then it's 7:15 have a shower
perhaps after that it's 7:45 change into clean clothing
perhaps after it's 8:00 eat breakfast
8:30 have a meeting with yourself - check out your schedule, decide if you will add anything today.
8:45: breathing for 3-5 minutes
9 am: visualize (in the meeting with yourself, draw up a list of your interests and decide what your interests are that you want to visualize) 10 minutes
9:30 free time
12 noon lunch
12: 30 breathing 3-5 minutes
12:45 free time
1:00 read a book - I suggest you try Claire Weekes Hope and Help for your Nerves (which is very old fashioned but good advice and she will talk about EXACTLY what you are going through now)
1:30 .....perhaps some sort of movement. You can do this in your home in silence if you need to: maybe 5 minutes of walking in a room or hopping on whatever you want to do.

Keep going with your schedule. Add in free time and whatever else you want to add. If you want to continue journaling once a day or maybe even just once a week - add it to one day during your week. You don't challenge yourself to do anything beyond this schedule for weeks at a time. Then when you do add something you don't do it once and then run in fear from it if it doesn't work out as planned. You schedule it in AGAIN on purpose in a few days, and you keep doing it over and over again until it has lost it's fright. and becomes BORING.

The repetitiveness of this schedule is purposeful. It's BORING on purpose. Keep to it, keep following it.

You are not a victim of your life, you are not a victim of your symptoms.