Sammy0225
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  • Can't hit the lotto, but developed a rare form of Tinnitus. Ain't that a bitch
    ErikaS
    1-3 years hopefully this will all be behind for many of us. Praying for that every day.
    Wish I had better news; going back into Public places has re-activated the static electricity ⚡️hoping it passes * sizzling bacon*
    My right ear is 100% healed from H. My left ear is bouncing between 85% ~ 95%. Another year should add 5%
    Bimmerboy
    @Sammy0225 thanks for replying I've got the same aching pain now which goes into my jaw
    PennyCat
    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.
    Sammy0225
    @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
    How are you doing man?
    gameover
    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.
    Sammy0225
    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
    gameover
    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.
    :3 hello everyone! Just checking in hoping everyone is doing okay
    I know its only been a month off here for you, but it was always great to chat! :)
    Sammy0225
    Hi love how you been? Yea it seemed longer lol haha July was a really good month for me :)
    S
    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:)
    I'm doing really well! I plan on this being My last goodbyes if progress stays uphill. As predicted the limbic system is the final step!
    MindOverMatter
    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.
    Charburchar
    Great stuff mate, happy for you. Just remember to stay vigilant!
    stacey
    Does anyone know if he's still doing okay?
    Miss you, Sammy! I hope you are doing so well and enjoying the summer with your family <3
    Sammy0225
    @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
    H
    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.
    thank you for being by my side in my darkest hours. I will propably never meet you, but you have safed my life with the constant attention you were giving me. Always there for me. Always in the mood to talk about it. This is not normal. And this.. is especially saddening. everyone should have some anchor in the first months. They are the hardest.
    Sammy0225
    @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
    Bye friends. Moving into the next process of healing <3 maybe I'll come back with a success story or maybe not. Let's see
    S
    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 :)
    ErikaS
    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
    brixenbrixen
    Good luck
    Hey friend, you'd think I know this answer by now with how much we have conversed over the past months, but I want to confirm just given your improvement. When you speak about your reactivity that is improving, is this the reactivity characterized by T spiking/winding up to those constant sounds like fan, water running, rain, etc. OR is this more of reactive distortions presenting over certain sounds?
    ErikaS
    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?
    Sammy0225
    @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 (:
    ErikaS
    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.
    If I protrude my jaw forward I get completely new sound (ringing, rather high pitched) - and quite loud. If I open my mouth wide, same sound but quieter. The sound is not present with mouth shut. I think I might have had this - but super quiet - before getting my T. Not really sure, never bothered me. Now is amplified and can be annoying when eating. If it was my only T, I'd be just fine...
    Sammy0225
    @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 (:
    MadeleineHope
    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.
    Sammy0225
    @MadeleineHope that's 100% spot on! Continue what you're doing! Imagine keeping this same way of thinking for 6-12 months. (:
    ErikaS
    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!
    Hey bro, my palinacousis is back, i noticed it about 2 weeks ago, not entirely sure how i triggered it, yesterday i had to take a benzo to be able to fall asleep, it sounded like a Harley revving, it was loud, i thought i had MES, i thought i had a small set back but i guess not, also used ear drops i had left over and now my ears feel full, i also have etd at the moment
    If I Protrude my jaw forward my hiss becomes more electrical. I can also Modulate it by turning my neck to the left and to the right. Hmm
    Joshua Macleod
    My favourite tones are the ones that Shore's device will help with. Hope it's not too distressing.
    ErikaS
    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 ??
    I know what caused my setback. My kid knocked over a plastic cup into the sink. I was 14ft away but was loud enough to ramp my reactivity
    Sammy0225
    @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
    ErikaS
    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.
    stacey
    Sorry you're struggling, all my tones and reactivity are destroying me… TTTs as well.
    If you don't have reactive tinnitus, then count your blessings. It's a completely different ball game when masking isn't possible.
    Sammy0225
    Moni97
    @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.
    ErikaS
    @Moni97 do you have reactivity with your T or is your T stable with loudness and/or pain H?
    Bullshit ass,condition.
    Sammy0225
    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
    ErikaS
    Thanks @SamRosemary <3 has yours settled at all from Covid?
    ErikaS
    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.
    Still fighting
    Joshua Macleod
    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.
    ErikaS
    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 :)
    Sammy0225
    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 friend. Just wanted to drop a hello and that I hope you're having more better days than debilitating days :)
    S
    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 :)
    ErikaS
    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!
    Sammy0225
    <3
    gone back to shopping in person again and can tolerate 6-7 ppl in a room talking together. Living in my closet is a distant memory now
    Hey @Sammy0225 I hope you're doing well! If it's okay, I wanted to come ask about how long it took before you noticed some improvement in distortions/reactivity and your TTTS?
    Sammy0225
    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
    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!
    Sammy0225
    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
    S
    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.
    Sammy0225
    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
    Hey there friend :) do you still deal with the electric shock hiss "ssss-ts—ts-ts-sss" sound at all? I have been dealing with this for the past 3 days or so and I feel like I haven't heard the oscillating shock "ts-tsss-ts" factor now for quite some time (a few months) with my ultra high tone. Wondering if I am suffering a setback from my travels over a week ago :(
    ErikaS
    @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!
    Sammy0225
    @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
    ErikaS
    @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.
    Hi guys. Some days the noise is back at full force and some Days it's just a whimper.. we just gotta keep believing this won't be forever!
    ErikaS
    @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.
    S
    I'd like to see how it pans out with others first and see how the reviews are for real. @Sammy0225
    SarahMLFlemmer
    @Sammy0225 Mine has finally seemed to settlet down some, but it still goes up and down too.
    I've improved enough to return back to work I hope everyone is doing ok my thoughts are always with y'all
    RainbowCat
    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.
    DeanD
    Sammy0225
    I wish every one the very best. When in doubt turn to god for guidance

    Goodbye for now ~
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