Forever hopeful

Forever hopeful

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  • Forever hopeful
    Crazy. celebrated a birthday. Skipped a lot due to noise. Others no issues with volume. Clubs, music, their own screaming voices.
    S
    It's the luck of the draw with these things in life. It robs you of enjoyment and being carefree especially enjoying yourself at a party.
    AnthonyMcDonald
    Hey, my birthday was on the 24th. Happy belated birthday
    BrysonKingMe
    I did not answer your question about how i am tapering.
    I have a compound pharmacy make a .1mg/ml oral suspension and I use an oral syringe to microtaper daily.
    Forever hopeful
    Thanks. That is a good idea. Are you on the US? Did your doc order it that way?
    BrysonKingMe
    Hi,

    Yes I am in the U.S.
    My doctor is a complete idiot and told me there was no way to get a suspension made. I called a compound pharmacy and they told him how to write the prescription.
    Forever hopeful
    Planned this 40th birthday celebration for a friend. Woke up ears louder????
    S
    Maybe it was the stimulation of everything going on being it was a celebration? It should hopefully calm down soon.
    Forever hopeful
    I wore my earplugs constantly, which just made me focus more on my tinnitus because I could hear it louder. Just such a drag. 17 days out and no improvement. I am become so phonophobic, waking around with my decibel app constantly.
    S
    I notice my T more cause of constant ear plug (filtred) use when out and about. I think that's feeding my fear of the T cause I keep hearing it. It'll take a while to sort itself out and when the fear/worry subsides the T may go down to a more comfortable level once more. Just the it one day at a time :) sorry you are going through this.
    Forever hopeful
    What color noise do folks use for sound therapy for high frequency tinnitus? My crickets no longer work.
    View previous comments…
    H
    Since it's impossible to block out, I listen to nature sounds and birdsong and try to focus on those sounds instead of my tinnitus.
    tracyNYC
    I used crickets, but when those no longer worked, I turned to lower-pitch "babbling brook" sounds. Nothing high pitch to compete, but lower pitch to distract.
    S
    I still use my crickets at night. As much as they don't block out the reactive T completey. I still concentrate on it enough to distract me from my ringing ear and I managed to fall asleep last night and woke up once in the night. Chamomile tea and lavender spary was also used.
    Forever hopeful
    Had a great call with a tinnitus audiologist. Learned all is not as dire as I thought.
    View previous comments…
    Marshall
    But like what did he say?
    S
    @Forever hopeful do you feel more relieved now you have been given more information regarding your situation?
    Forever hopeful
    @Strawberryblonde Yes.He made no promises. He did alleviate my concerns around hearing protection, which helped my guilt as I didn't think I was getting enough protection. But he showed me I was based on his own testing of the same earplugs. He reinforced that my anxiety was perpetuating the spike because I wasn't letting my brain do its job to settle it.
    Forever hopeful
    Spouse told me to stop perseverating on this and get off TT. Only 2 weeks since increase. Jeez. So now I'm hiding my pain and anguish.
    View previous comments…
    Eliska
    This forum is double-edged sword.
    Forever hopeful
    @Eliska, I've been trying to stay on the success stories but now I think I've officially read every single one 5 times. It's all good till you see negative comments about someone having a success story.
    I've also started meeting with the audiologist who is a tinnitus expert and actually running information that's promulgated on the site by him. It is amazing that there is so much misinformation out there.
    Eliska
    @Forever hopeful I also mainly read success stories however its too easy to slip down to horror stories and negative comments. But I get it, most members here on this forum are suffering and desperate.
    For my mental health is better to stay away from forum as much as I can although my mind is occupated by T or by thoughts about T most of my waking hours.
    Forever hopeful
    Has T himself. Never uses ear protection. It doesn't bother him. And he describes it ad pretty loud - can hear it over most things.
    View previous comments…
    Forever hopeful
    He said he's had it forever. Even before he went to college and had subsequent concussions while playing football. He said it was far worse during college and has improved over the years. He still get spikes if he has a cold. But he can sit in a loud restaurant and if he listens for it, he says he can hear it.
    kingsfan
    Oh, so he has it from TBI and not from cochlear degeneration, so of course loud environments don't affect it at all.
    T
    Might be quiet high frequency T, than actually loud T
    Forever hopeful
    Husband completely unsupportive. It's been just about two weeks out and he has no patience for my suffering.
    View previous comments…
    Forever hopeful
    @makeyourownluck I have not really noticed any improvement. It'll be two weeks tomorrow since my T increased. I will also be finishing my high-dose steroids on Saturday. What strikes me is just how high frequency it is.
    makeyourownluck
    Some people report louder tinnitus when on steroids. Maybe things will calm down after they leave your system. I have my fingers crossed for you.
    Forever hopeful
    @makeyourownluck. Well, I've never had that problem before. But it could also be that steroids leads to increased anxiety and higher anxiety makes you more vigilant about listening for the noise. So maybe once they clear maybe the noise will reduce somewhat.
    Forever hopeful
    I really can't believe rude comments from others on the site. I was not irresponsible. I had ear protection and a solid plan.
    View previous comments…
    Michael Leigh
    We are all different @Forever hopeful, so give it time. Please read my post in the link I sent you: Can I habituate to Variable Tinnitus? As I previously mentioned to you, start using low level sound enrichment to help reduce your oversensitivity to sound. All the best.
    Forever hopeful
    @Michael Leigh, I have read your post and have been following your suggestions. I do find that the low level sound does spike my tinnitus. Or at least I feel like it does. Which has never happened in the past. I think it's the least noticeable when it's completely quiet. That is something I've never experienced before. So I goes this is hyperacusis.
    Michael Leigh
    Silence, quiet rooms and surroundings aren't good for oversensitivity to sound, hyperacusis or tinnitus @Forever hopeful. Therefore, I advise trying to use the lowest volume possible for sound enrichment even if it's for a little while. It's important that you persist with it and take things slowly as this is the only way to overcome what you are experiencing.
    Forever hopeful
    Still in a spike. Periods of loud vs almost quiet. Prob artificially lowered by my use of Klonopin.
    DebInAustralia
    Hey I'm so sorry to hear of your spike.

    I'm still dealing with this relapse. I think mine is related to the onset of menopause and possible MCAS.
    Forever hopeful
    I am so sorry. I know you have been dealing with this for a while. Yesterday I was looking through old posts from 2021 all the way back to 2015 of mine. Interestingly how many people are no longer on the site even from a year ago. Hopefully majority are getting better.
    DebInAustralia
    Don't be sorry. We are in this together X
    Forever hopeful
    Still struggling to mask. T is super high pitched like a tea kettle with a hiss. Crickets no longer work. Other ideas?
    InfiniteLoop
    They MyNoise app has many choices, and in many of them one can control the frequency band. Personally, I use the rain noise with just the two higher frequency bands on.
    Forever hopeful
    Thanks
    Forever hopeful
    @InfiniteLoop. Got the app. Surprisingly a blend of violet and pink noise seems to provide me the most relief. Which is really interesting because normally I don't like those sounds. I'm usually more interested in nature sounds. But today was the first day that I felt like I had a little relief with some masking and sound therapy. Thanks.
    X
    You might want to look at something like The Soul Resonance youtube channel. I have found their offerings to be very helpful. I personally use the Tibetan bowl sounds because they are very close to random noises and cover a wide spectrum of audible frequency without any jarring surprises. Very dynamic vs static noise machines.
    Forever hopeful
    Looking for a new masking or sound blending. My HF nature sounds are no longer working. Causing reactivity. LF ok but not the goal
    BrOKeN_1
    Somebody (I forget.. my bad) turned me on to the tinnitus calmer beltone app. Try it out maybe. I'm really liking the breathing/meditation exercises. Plus it's free!
    Forever hopeful
    Thanks. I appreciate it.
    Stuart-T
    You said you have musician's earplugs so i assumed you were a musician. Is it classical concerts you are going to or pop?
    View previous comments…
    Stuart-T
    OK that does sound positive. It is often hard to know what the case is with any degree of confidence. A lot of us are trying to help but a lot of the time we are just passing on information we have picked up somewhere. Personally, I irrigated my own ears 6 months ago and have no idea if I screwed up or not with excessive pressure - and I probably never will know whether I am the cause of my own ongoing T.
    Forever hopeful
    Well that may be true in your opinion. But he's a man who suffered from and studied tinnitus for over 40 years and is out living his life. He also has a medical degree. So far, I have met one person on the site who actually went to med school. And no audiologists. Just saying.
    Forever hopeful
    @Stuart-T, I am sorry to hear. It's hard to know sometimes what happened and why. My husband has tinnitus. He never protects his ears. It also doesn't bother him. I don't get it. I would be happy if it were lower pitched. Easier to mask.
    Forever hopeful
    Thanks for the support. Instead of forever hopeful I feel forever hopeless right now.
    Eleanor89
    Hello @Forever hopeful
    It will get better,,,, I'm so sad that this has happened to you….
    Just give it time x
    Forever hopeful
    I know that it takes time but is awful while waiting / not knowing. Hearing test in 3 weeks Hoping no change. I had no temporary hearing threshold change. None of the usual sxs you have after a concert because I was wearing ear protection. My husband, who has T, wore no ear protection. He had a 10 minute hearing threshold change He didn't even think the concert was that loud.
    Forever hopeful
    Wore my musicians earplugs. 30 dB filters. Use sealant. Confirmed plan with ENT prior to going. All good. Now my tinnitus is so much worse.
    View previous comments…
    Forever hopeful
    I do not. Why?
    Forever hopeful
    You'll be surprised to know that my ENT also has tinnitus. Their advice is always been go live your life and use noise protection.
    MaxRabbit
    I'm newer to this and if the T ever gets stable, lowers or goes im happy to abandon quite a few noisy things in life. Hearing protection doesnt stop heavy thrum, deep vibration sound. Goes right through. Hope you are feeling better. Hugs and support.
    Forever hopeful
    Miserable. Went to a concert with double ear protection. Had to remove the ear muffs
    X
    In my experience excess ear protection actually made my T much worse (I am a builder). Seems that what we view as protective noise reduction, our brains may well view as even more hearing loss which causes a spike/reaction, especially when used for long periods.
    Forever hopeful
    My husband's car alarm went off while I was standing behind it. Manage to turn it off probably in about five seconds. Perm damage?
    Forever hopeful
    Saw a well respected Neuro/Otologist in Boston. Said All people with hearing loss have Tinnitus. False. Now I question anything he says.
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