Sammy0225

@Sammy0225 thanks for replying I've got the same aching pain now which goes into my jaw

Hey @Sammy0225 is your TTTS still pretty much gone? I forget if you’ve answered this or not but how long did it take for that to happen? Mine is better than it used to be but comes back for a few days here and there for some reason.

@PennyCat hi Hun! Yes it took 8-9 months but it’s currently gone. I have days where it comes back but it never last more then 2-3 days

I tend to agree. While my T is bad I feel I can deal with it better than with loudness H. But I don't know how to help H. Overprotecting was making it worse. I do not overprotect, get plenty sound exposure at normal level (while overall living quiet life), yet H is getting worse it seems.

Same here man.
I didn’t see any significant improvements till about14 months into having loudness H. What a bullshit condition. And yea over protecting didn’t do me any favors also. I didn’t start seeing progress till I slowly started exposing back into sound

My condition is really weird, I've been exposing continuously since late May at least, while avoiding any traumas, yet while I saw some transient improvements, I am worse H wise. Not at the worst peak wise, but I think worse average wise.

Today i'm not to bad but maybe because its a friday and i'm having a few beers! :P Hope that limbic system of yours is behaving?? @Sammy0225

@Joe Cuber hey bud! Good to hear from you!!

Yea so definitely still cycling during July I was on 5 quiet days 1 mild day and 1 loud day! How’s yours been??

Glad to hear my friend!!

Hi love how you been? Yea it seemed longer lol haha July was a really good month for me :)

Good to hear it @Sammy0225 !! Have you been managing a lot better?
Mine is up and down and generally just that annoying person you just can't shake off lol had a nice holiday at the end of last month in which I didn't even think of my T, I need that again:)

Great to hear @Sammy0225 Creating new positive neural pathways is indeed the way forward in my opinion. This has worked for me as well throughout my journey. There are many ways to go around this, and it doesn't necessarily have to be the more "complex" routes like DNRS or EMDR - but both of those are optional routes.

Great stuff mate, happy for you. Just remember to stay vigilant!

Does anyone know if he’s still doing okay?

@ErikaS i miss you too! And I hope you are making decent progress!! I was reading u are trying new things and I’m very proud of you!! Don’t ever give up and don’t ever lose hope hun <3

I’m here for people supporting people! Here for random strangers reaching out and genuinely feeling for others! This is the definition of humanity! Good luck @Sammy0225 - your buddy @ErikaS is on a long break from here too! She knows you are with her.

Dat is puik om te horen;)

ja he ben ook blij om van zijn verberingen te horen

@Aschenherz coming back and reading this made me smile! My friend my heart is with you always you’re stronger then you’ll ever know <3

Wishing you well @Sammy0225 will be doing the same as you. Trying to move on with life. Will check in occasionally though if im having another bad wave :)

Positive affirmations for you and the weeks and months ahead! Days of healing in all areas, and if setbacks occur, pray you rebound stronger each time and setbacks become less frequent. Cannot thank you enough for your friendship and support on here! <3

Good luck

Thank you for sharing all of that, @Sammy0225 .. are there any ordinary sounds you still avoid or do in small doses, like phone, TV, driving, etc?

@ErikaS hmm I actually watch lots of TV lol I don’t avoid anything really anymore. I watch TV on a reasonable volume I also watch a short amount of videos on my phone. But I didn’t start any lengthy durations till I had calmed my body. Driving I haven’t tried yet cause my car is broken down. But last the last drive I took I did really good (:

That’s awesome @Sammy0225 ! My T is still sensitive to long durations of TV, it winds up to the high freq electric sound and that’s not fun but I am watching like an hour or so at night on low and with captions and I do ok. I am still to the point if a sound comes from my phone the T responds in some way so I guess I have a ways to go but gotta believe it can improve.

@gameover definitely can relate! I use to get depressed cause I couldn’t even yawn without the pitch changing! But wow I was a bad fucking case man and I’ve been making great progress I want you to stay hopeful man. I stayed living in my restroom 6 months only seeing my kid every so often. Last night we all watched fast X movie together. So chin up man it’ll get better in time (:

I completely agree with everything @Sammy0225 said! I've been using exactly the same methods & feel that they are helpful. In fact, I've noticed that even thinking about certain sounds can bring on symptoms for me, so I really do think keeping anxiety in check plans a big role here.

@MadeleineHope that’s 100% spot on! Continue what you’re doing! Imagine keeping this same way of thinking for 6-12 months. (:

A lot of what @Sammy0225 is practicing and sharing falls under brain retraining and resetting the limbic system and getting our brain out of a constant fight/flight response. Awesome job Sammy and thank you for bringing awareness to the importance of this as we try to heal!

My favourite tones are the ones that Shore's device will help with. Hope it's not too distressing.

Boh of our electrical hisses seem to be somatic. Come on Susan, take care of this sound (and maybe others!?) for us!
Do you still get any random beeps or mores code type sounds? In my R ear I have repeated low fast beeps that can change notes but mainly stay lower, and I just thought this was another common tinnitus sound but after reading it sounds like this could be typewriter tinnitus/different from normal ??

@gameover yup, like I was telling a friend on here I felt 90% almost recovered and something little as a plastic cup bouncing around in the sink sent me back into hell. My advise man give it a year from onset the reactivity did eventually slowly fade but this setback caused it to come back

Man, how all of us respond/react to things is so crazy. Hoping it calms down soon! I have learned quick sounds (<5 seconds) even if louder don’t spike or make me react. It’s a constant sound or longer exposure that I ramp up. Like I just got back from a 15 min walk in my quiet neighborhood, definitely spiked up some.

Sorry you’re struggling, all my tones and reactivity are destroying me… TTTs as well.

@SamRosemary thanks Sam I needed to hear that <3

@Sammy0225 Ive been doing alright. Trying to live some kind of life while balancing the ever present fear that I have ticking time bombs in my head. Ya know, the usual. My T&H seem to really feed on my TMJ, so that’s nice haha I’m sorry the reactive is back. Are you back to sound isolation or just pushing through.

@Moni97 do you have reactivity with your T or is your T stable with loudness and/or pain H?

Sorry guys I’m just in some type of mood lately I’m usually not this bad @ErikaS @SamRosemary I’ll be turning 34 soon and I was hoping this would have gone away or at least the reactivity

Thanks @SamRosemary <3 has yours settled at all from Covid?

Don't be sorry @Sammy0225 , I turn 34 on June 6th and I thought the same thing 5-6 months ago :( We are allowed to be sad, furious, scared, etc. This is a very scary and depressing condition that should absolutely have a true treatment by now, its criminal that it doesn't. If more "certain people" experienced it on our level, there would be a cure already.

Consistency would be fantastic, I share the feeling. I hope knowing that the whisper days will roll around keeps you motivated to push through the bad ones.

I was just telling my husband tonight that I feel like I need to just get away to a very quiet place where I don't know anyone or anything going on around me and focus on calming my whole mind and body, practice DNRS every day, and do controlled sound therapy with natural noises. Thought of you and the beach house :)

Hang in there @ErikaS things will get better. And getting away from everything sounds nice!! It definitely did do some good calming the reactivity. I wish I could post pictures on here. It definitely was beautiful! Your going to beat this, we both are (:

Hi @Sammy0225 sorry to hear the pain in the arse has reared its ugly head again. May you have a reprieve of it soon <3 :)

Gah I am sorry @Sammy0225 I hope it shifts to something more tolerable soon. I cannot stand how unpredictable this crap is. And I was on a walk with my husband and talking about a gentleman who was saying his recent nerve block procedure for his back went so well and he literally cannot feel the pain anymore. We need that but for our ears!

<3

Guess he was bitten on Wednesday.

Hi @Sammy0225 glad you're seeing improvements in H! if you don't mind my asking, what was your H like at its worst? Did you ever have pain? Looking for some hope today.

Great too hear @Sammy0225 having some normality in your life certainly helps with carrying on with this.

Thanks @ErikaS and @Strawberryblonde my thoughts are always with you guys <3

@yeezysqueezy I had pain also had H, ttts, Dysacusis, multi tone tinnitus, phonophobia and reactivity which I still have but at a much lesser degree. Things can and will get better just hang in there bud

Hi sorry the late reply I come and go, but yea it took me 6-8 months for TTTS and distortions to settle down I contributed a big portion of it to constant anxiety and depression as for the reactivity it’s still a work in progress I have good abs bad days but I’m laughing and smiling again so I’ve come a long way @PennyCat

@Sammy0225 I think it’s the same for me, the anxiety really reinforces everything. This gives me hope that’ll improve for me in time, especially the TTTS. Thanks for replying and glad you’re making progress!

Hi @Strawberryblonde good and bad days still just kinda powering through it still how are you doing my friend? I like the new profile pic

I'm pretty much the same as you, good days and bad days but the good are outnumbering the bad lately :) half habituated, hating it but excepting it lol Thanks @Sammy0225 I like to change things up, sometimes a pic sometimes not.

Yes I’m hoping we can get more good days! And same half habituated cause the bad days I can’t really function, yea I can see that lol haha @Strawberryblonde

@Sammy0225 @MindOverMatter thank you both for your input! The one thing I will say with my very high frequency electric stuff, it seems to be getting higher and higher in frequency. It started around 12.5k hz, but is now somewhere between 14.5-15k hz. A part of me is hoping it will just keep getting higher to where I can’t hear it anymore. @Jason C said that’s what happened to his T, so one can only hope!

@ErikaS hi my friend! I wanted to revisit this topic if that’s okay with you, how’s the tsss tsss sound been? Did it ever subside

@Sammy0225 hey! So I feel like that was the very beginning stage of my spike/set back. That did calm down, but then other things worsened/changed. I still have my ultra high tone/sound that easily spikes, but the electric shock characteristic of it seems to have subsided for now.

@Sammy0225 what is TTTS?

@SarahMLFlemmer sorry for the late reply! TTTS is Tonic tensor tympani syndrome. spasms in the middle ear

@Sammy0225 that sounds terrible. =(

@Sammy0225 If I am still battling my most destressing sound which is the ultra high frequency stuff that is also reactive (in my SSHL range from ear infection), I will definitely try the device for that because it has somatic components to it. If I could lessen or eliminate that, oh heavens what a miracle that would be.

I'd like to see how it pans out with others first and see how the reviews are for real. @Sammy0225

@Sammy0225 Mine has finally seemed to settlet down some, but it still goes up and down too.

I hope your return to work is smooth and stress-free ☺️
I also returned to my job lately, it's somewhat uncomfortable but my life feels more normal now, which is what I want.

@Sammy0225 - that's great to hear!

I wish every one the very best. When in doubt turn to god for guidance

Goodbye for now ~

@Strawberryblonde thanks for the tips strawberry weekend is almost here :3 hope u have a relaxing one

Cannot wait for friday night to get here!!! then ill be free for the weekend :) hope you have a good one too @Sammy0225

Ty <3{:

@ErikaS hormones play havoc on my ringing! Flares up once a month uggh lol I'm noticing a pattern ever so slowly.

I'm sorry @ErikaS don't give up hope I'm still rooting for you! Are you still planning your mini vacation trip? I probably won't ever have a success story. I had a few good weeks then relapsed then good weeks again then relapse. I feel it'll be like this till a cure is created

@Sammy0225 so sorry to hear of the relapses. But truth be told, you’ll hear that in success stories. Some saying “started to improve little by little, with setbacks for sure”. I feel like this could just be the next stage of healing that you’re in for some time, then you will make a notable bigger step forward. Hope that makes sense, wish it all for us <3

@Sammy0225 That’s amazing news!! Gives me hope that I can also improve. Do you mind me asking what you mean by controlled healing? My TTTS is my most bothersome symptom so I’m always looking for ways to help it get better. Do you think time, patience, and anxiety reduction played a part in your progress as well (regarding the TTTS)?

When I had H and T, it was because of overprotection. The only thing when you have H is to go slowly out. It will trigger T first and then nothing. That is what happened to me for H.

Yay @Sammy0225 im so glad to see you healing my friend :’)