CRGC

CRGC

Member From Montreal
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  • S
    Hope things are still improving for you as the months go by? :)
    CRGC
    Hi @Strawberryblonde! Yes, things are still going well on my side. H pain has mostly subsided and still T fluctuates but is much easier to manage than at onset. Still being careful and protecting my ears when necessary. Happy to hear you're doing OK too!
    makeyourownluck
    Hey @CRGC, lovely to see that you are doing better. Hope you're back enjoying music again. Give those tunes I posted a while back a listen to, think you'll like them.
    S
    How are you doing lately? :)
    CRGC
    Hey @Strawberryblonde, thanks for the message :) I've been managing pretty well since the new year. Back working, and seeing a therapist regularly which has helped a lot with the mental aspect of the condition. Tinnitus and ear pain are still present, although the latter has been getting better I feel. Still careful about what I expose myself to however. How are you doing?
    S
    Hmm I'm having a pretty bad time with it lately. For some reason I've got ooooo hum sound in one ear and morse code in another that seem louder than usual and/or has come back again. So feeling pretty crappy with that :( Glad the therapist is helping with the mental mind games which is T :) @CRGC
    CRGC
    H pain is constant but seems I stopped caring about it as much lately. I guess it's true that humans can habituate to most everything?
    View previous comments…
    CRGC
    @Nadia231 Of course, I always still protect in noisy situations and avoid very loud situations, but I feel more in control when I frame it this way. I'm also lucky that my T has been stable and (mostly) non-reactive.
    Nadia231
    @CRGC that's great. Both my T and H are out of control completely. No matter what I do, how much I protect my ears, they get worse, they change and they just cause me so much depression. My life is unbearable right now. So I'm going for a different approach and see what happens
    CRGC
    @Nadia231 I'm really sorry to hear that, and hope you find some stability eventually. Crossing my fingers that this change of approach helps you. We're here for you if you need us!
    CRGC
    6 months with T and H. Still struggling. So hard to grieve lost hearing knowing it will never come back. Such guilt for not protecting.
    View previous comments…
    CRGC
    @MindOverMatter @ZFire @aura Thanks for the positive comments guys. Working hard with my therapist to accept and move on, but it's difficult. What gets me the most is the several brief moments a day where I realize I don't understand speech around me the way I used to. I've always prided myself on being pretty smart and witty, and feel this condition is changing my personality. So hard to cope with that.
    ErikaS
    Although we cant gain back hearing, there's enough "noise induced" or some hearing loss T stories that DO improve. They just take much longer. I just discovered that my R ear does not hear 12k hz and above like my L ear does. I had a feeling I suffered some kind of very high freq loss in R ear from infection, but because they don't test above 8k hz, it was never detected. Thus, never got a shot.
    ErikaS
    I know this sounds "out there" but I started Neurofeedback last week that is specific to tinnitus. We are doing "with hearing loss" protocol as opposed to without because they see the best response w/ that. It's working with slow brain waves as well as memory because our brains "remember" what they heard before this and are still trying to hear it. Living on a prayer with this so we will see.
    CRGC
    AnthonyMcDonald
    This article doesn't mention whether or not they were acute cases, which could have had natural remission. Also whether or not some of these subjects had mild hyperacusis in combination with phonophobia, nor did it provide any information on different levels of severity
    AnthonyMcDonald
    P.S. I think the usage of the buzzword "central gain" when referring to hyperacusis is just the same as saying "because, because", or "neuroplasticuty" in reference to tinnitus. Reminds me of how clueless most "specialists" are.
    CRGC
    I'm considering trying acupuncture for ear/jaw/neck pain from hyperacusis. Does anyone have positive experiences to share?
    andronici
    I haven't tried acupuncture myself, but just wanted to say that I've read some users on here who have benefitted from it, others who it didn't do anything for. However, I wanted to warn that there are some people who have had bad worsenings from electroacupuncture -- so I would avoid any electric stimulation. Regular acupuncture I think is pretty low risk. Hope it helps if you do end up trying!
    SmallRonnie
    I forgot I need to try this too. I know Brian Newman does it and he said it was one of the best things to provide temporary relief from the pain.
    ErikaS
    Hey there, I am just about 3 months into my reactive T that started in R ear from ear infection. T is in both ears now, but R ear is worse as far as number of sounds and reactivity. I found an ENT who said he would do intratympanic dex shot if I wanted to to see if it would help anything at all. Do you feel the shot worsened your situation at all? I don't have H in terms of what you have, just T is super reactive.
    CRGC
    Hi @ErikaS, I don't feel the shots worsened my situation. The procedure was uncomfortable and I don't think they made much of a difference, as it had been too long since my noise trauma, but I don't regret trying. Good luck with everything!
    CRGC
    @Bambam0 I got mine last week, no effect on T or H. Worth it if you ask me.
    Bambam0
    TYVM!
    CRGC
    @Bambam0 no problem! Love your profile picture by the way. If the Shore device ends up working and helping with H, I might just get a tattoo like this.
    CRGC
    Been enjoying a few days with low H pain and low T. But right ear crackles every time i swallow/yawn/stretch my jaw. Does this go away?
    MindOverMatter
    This is quite common @CRGC, and normally nothing to worry about.
    CRGC
    Thanks @MindOverMatter . It's definitely not as distressing as other symptoms, but it's quite annoying nonetheless. I wonder what causes it.
    A
    it goes away. For me it did. It is caused by either the jaw or the throat. It is something, you normally blend out. Normally. H is a wonderful thing.
    CRGC
    Can't shake the fear of worsening. It's paralyzing. So difficult to manage the anxiety and depression resulting from this condition.
    View previous comments…
    ZFire
    I know the feeling all too well man and still struggle with it. But as times goes on, you'll start to feel relaxed little by little when you figure out which sounds don't make your T or H worse. You'll begin to establish a positive association with these sounds and then coupled with the fact that your ear symptoms will also stabilize(highly probable). Your confidence will slowly grow again. It's a very long process.
    ZFire
    But always remember to carry ear protection with you. If you're unsure and uncomfortable in certain environments, always plug up. It's gives you that reassuring feeling too that you're doing the right thing. That's all we can do at this point.
    CRGC
    Thanks for the kind words @Strawberryblonde @Aschenherz @SamRosemary @ZFire. I'll try and keep these thoughts out of my head although that's easier said then done for me. My custom earplugs have been my best friends for the last 3 months!
    CRGC
    Does anyone have experience with the curable app for hyperacusis? Just bought it but don't know where to start
    View previous comments…
    CRGC
    Hi @Samy , yes I've been using the app. I think it's helping me put my H pain in perspective and calm some of the anxiety around it. It's worth a try if you can afford it imo!
    Samy
    Thanks for the info!! I saw some good reviews about this app, I'm going to dowload it. I really need some help managing the horrible H…
    I'm also reading about DNRS
    CRGC
    @Samy let me know how you get on with the app if you end up purchasing it! DNRS indeed sounds interesting but if I understand correctly, it's a form of therapy which requires a lot of work with a therapist. Nice to know it's a possible option though! I hope you reach improvements with your H, stay strong <3
    CRGC
    Been reading a lot of H improvement stories happening over the span of 1 1/2-2 years...I wonder if there's a physiological reason for that?
    View previous comments…
    A
    I really don't know, how this happens. But i see progress for me. very little, but it made me re-consider my dark thoughts.
    CRGC
    @Aschenherz happy to hear about your progress!

    @volterra that's possible. Have you had your LDLs measured? And I agree about how many different facets or conditions are possibly lumped under the term H.
    volterra
    No but they aren't very high
    CRGC
    34th birthday today. Only present I want is a new right ear
    View previous comments…
    CRGC
    @MindOverMatter the best I can describe my pain is sharp pain when exposed to loud sounds, as well as dull aches after (what i think is) overexposure to moderate noise. The dull pain comes up in a delayed manner and is unpredictable. This is the pain I'm having the most trouble dealing with.
    MindOverMatter
    @CRGC I get you. So basically, based upon your description,.some sort of hyperacusis with pain. That is challenging to deal with, especially when its unpredictable. Are you being followed up by any professionals within the field of tinnitus and hyperacusis?
    CRGC
    Hi @MindOverMatter, sorry I just saw your comment now. Yes, I have met with several audiologists and neurootologists over the last few months. I have tried everything I could including intratympanic steroids. I am now trying to slowly desentize as per my audiologist's recommendations. The process has been difficult. I am also seeing a psychologist for the mental distress of it all.
    CW Dragon
    Bro we are the same age. I lost a little hearing (which turned to T) and feel the same way, I can't hear well noise in speech out my left ear, I used to be able to zero in on different dialogues (eavesdrop) but no more. I apologize to myself and ask forgiveness from my ear for being stupid.

    I used to feel encapsulated by outdoor sound like wind, now it just feels like a TV speaker with no real depth to it.
    CRGC
    Exactly how my right ear feels. So frustrating and saddening.
    CRGC
    The grieving/mourning process over my loss of hearing is so hard. I can't see myself being happy again. Feeling like my life is over at 33.
    View previous comments…
    CRGC
    @makeyourownluck hard to imagine hearing coming back after noise damage...

    thanks for the kind words though, big hug back your way too <3 hope you're doing ok with the infection and nerve pain
    Hamsti
    I am 34 and i am also losing my hearing because of unknown causes. You are not alone in this :)
    CRGC
    Thank you @Hamsti, I hope you are doing ok on your side.
    CRGC
    Ear pain has eased up some, but fullness is back with a vengeance now. Can't catch a break. Got my final injection on tuesday...related?
    View previous comments…
    CRGC
    @SmallRonnie agreed, although the fullness makes me worried about inflammation / further damage. Just finished a course of 3 IT steroid injections. No change on my HL so far, but hopefully I'll see some improvements on T+H. Recent pain and fullness could be the result of the holes in my eardrum
    MaxRabbit
    Hello. Came on to see how you are doing. How are you coping? Really sorry to see you have so far not had relief with the shots. Ive been off this site a few days as its depressing reading all the suffering and no damn relief in sight. Eh....hope you can keep a better mindset and are able to sleep well and get healing going! Best hopes to you for that!
    CRGC
    Hey @MaxRabbit, thanks for checking in. It's been a lot of ups and downs for sure. Trying to stay positive and take it one day at a time. Good on you for taking a break from the website, might try and do that myself soon. Wishing you healing as well!
    CRGC
    Second IT steroid injection scheduled today. No effect on hearing loss so far. All I wish for is stabilization of T and recovery from H…
    MaxRabbit
    I hope youll get results this time or the next. Sending support and hugs to you!
    CRGC
    @MaxRabbit thank you! Sending healing vibes back your way
    in_LA
    I'm sorry about your terrible H :(
    CRGC
    Thanks man, means a lot. Hope you're able to get your palinacousis under control! Stay strong.
    MaxRabbit
    Hi. You shared you had your first shot today. Other users said their ear screamed a bit after but then went away. Hope you had an easy time and that it may help you!
    View previous comments…
    CRGC
    (@MaxRabbit) The water that clogged my ear feels like it's drained out, but the Dr wants to me to use Ciprodex ear drops to prevent any possible infection. After reading the stories about them on here, I'm scared to use them. I'm thinking I'll monitor my symptoms for the time being and only use them if I start developing infection symptoms.
    MaxRabbit
    Hello again. Hows it going for you? Did the water clear out (shit happens even being ultra careful) and do you feel better? I hope to hear so!
    CRGC
    Hey @MaxRabbit :) water drained out and no signs of ear infection atm (knock on wood). Second injection scheduled on thursday, hoping for positive impact on my T and H. How are things on your side? <3
    CRGC
    Has anyone here had intratympanic steroids shots causing worsening of their T/H?
    View previous comments…
    CRGC
    @Forever hopeful that's fantastic about your loss healing! Unfortunately mine has stayed exactly the same even after 2 injections. Not holding my breath for improvement on that end. Just wish T and H get better!
    Forever hopeful
    @GRGC, You may have mentioned this somewhere but how long have you had hearing loss? Do you know what caused it? Was an acoustic trauma or a virus? Forgive me if you've written this before and I've read it. I'm like I remember my own name these days. They think mine was caused by a virus as or as unilateral.
    CRGC
    Hey @Forever hopeful :) my constant tinnitus and hyperacusis date back to June of this year. Acoustic trauma from loud club + intense stress / medication is the likely cause. Looking back, I think I had some warning signs in the months before (fleeting T, occasional pain). Unilateral HL might have happened in June, or might have been there before. I'm guessing noise induced in any case
    CRGC
    Absolutely hating my tinnitus today. Just stumbled on a picture of me a few days before onset. I miss pre-T life so much
    CRGC
    2nd neurotologist agreed to IT steroids in right ear. First shot (of 3) on Tuesday. Praying for improvement on HL.
    CRGC
    H pain from wind in my ear by the lake… can't even enjoy quiet nature without worrying about ear protection apparently
    roy1159
    Hey man, i seem to have the same threshold loss as you do at 6khz albeit i'm about a decade younger than you. Do you feel the loss there makes it harder for you to comprehend speech? in quiet settings in particular? TIA
    CRGC
    Hey @roy1159, I definitely noticed that speech is harder to comprehend in my right ear which has hearing loss. It's especially noticeable in noisy settings.

    Although my left ear is still healthy, I notice that I have a harder time concentrating on speech overall. It's as if the volume control on my right ear is broken and my brain can't tune it down or focus away from it.
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