LostinTX

LostinTX

Member From TX
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  • SharonBell
    @LostinTX ,@Hottopic29,@KaleeTX, @Rockman,@Wrfortiscue,@Steph1710, @Orians Pain, @aura, does food, alcohol, salt, sugar, caffeine or any foods affect your tinnitus? Everything affects mine.
    View previous comments…
    Hottopic29
    Yea i find if i don't eat at all and limited for few days its lower
    L
    Salt , Alcohol make it worse but a couple good Dingleberries make it better .
    L
    People with Tinnitus should stay away from alcohol if they take regular medications cause the risk of ototoxicity doubles and there can be permanent worsening /damage . Alot of people say alcohol helps but that is only short term while your drinking
    LostinTX
    Did a self test this morning videoing myself turning left in bed and I still have slight nystagmus? Almost 3 years in?
    LostinTX
    I have checked the FDA site for medical devices awaiting approval 2x and have not seen Susan Shore's device there?
    D
    They simply haven't submitted it for whatever reason.
    SharonBell
    @LostinTX it's like everything they have has to go in your ears. That scares me because I can't even wear earplugs or headphones because that's all I hear is my T and then it sizzles so it gets so much worse and with their inventions I could not use it when it goes in the ears I hate it. Most people with T can use ear plugs some it makes their T louder, but mine it sizzles in my head.
    LostinTX
    Huge spike yesterday hormone change. In 2 years -4 light periods. Peri/Menopause. Oddly, started a heavy period. T was louder than traffic
    LostinTX
    Really down today. I am no longer the person I was and this constant buzzing in my head has destroyed me. Some good moments but I want peace
    View previous comments…
    LostinTX
    I keep trying but it's hard. I even try to see the bright side that it has gone down in volume monumentally from the beginning. But I started out severe/catastrophic and now completely feel I have PTSD from it knowing how LOUD it can go.
    LostinTX
    It's like knowing you have a grenade in your head that can go off anytime the rest of your life. I was that person that slept in complete dark and silence every night and you grieve all the moments you took for granted.
    SharonBell
    @LostinTX you said you have constant buzzing in your head. Mine is in my ears and head constant.Do you mean it's on like the top of your head or your whole head?
    LostinTX
    I have had 2 times now eating out that I could not hear T the entire meal! Christmas Eve dinner and I took my mom to breakfast this week.
    LostinTX
    Still not ok with T! But, I went from hearing over EVERYTHING to some days I can't hear in the store or driving. Another year maybe lower?!
    LostinTX
    Sleeping 8 hours nightly now with gabapentin, cyclobenzaprine and melatonin combo. I also take PNN NeuroAid I think is helping T/my brain.
    SharonBell
    @LostinTX I have been taking flexeril at night to help me sleep too. I have been taking it for a couple years on and off when I need it for my back, but lately I have taking it to help me sleep.
    LostinTX
    @SharonBell i no longer take it and haven't for maybe over 6 months. I now take one 300mg gabapentin and 10-15mg of melatonin and I sleep solid 6-8 hours now
    LostinTX
    I had a huge spike today. A few things- I stopped HRT 3 days ago to see how it would go? Then got a possible vestibular migraine
    BrOKeN_1
    Stress maybe? Anxious about what may be? Our brains are goofy goober for sure. Hope it recedes quickly for you.
    BrOKeN_1
    I would really like to taper off ssri myself due to the possible ototoxic properties but due to my obsessive compulsive nature I'm afraid I would end up spiraling.
    LostinTX
    @BrOKeN_1 it's hard to get off SSRI's for sure. I've been on HRT (hormone replacement for several months but I've gained weight easily and thought I'd try being off it and see how it goes. I guess it helps the T too though, maybe? Thank God today was better but I've had 3 possible vestibular migraines in the 22 months of T and they are debilitating when they happen. Thankful they are rare.
    LostinTX
    Just found out my OTO-313 was placebo! Kinda shocked. If I've been healing on my own I pray I continue to until it's mild or ignorable.
    J
    How did you know ?
    Wrfortiscue
    Oh my! Hopefully you continue that trend
    LostinTX
    @JPGL I reached out to the researcher. The study was unblinded and she was able to share with me what I got.
    LostinTX
    22 months. Yesterday went to a friend's for small get together. Could hardly hear the T. Last year there 10/21 I had to leave bc T was bad
    LostinTX
    Yesterday was a bad spike too. Went to flea market and could hear it over the mariachi music blaring. My mom's was spiked too Bar. Pressure?
    SharonBell
    Yeah I can't be around loud things. Makes mine worse and can't wear ear plugs because it makes my head sizzle.
    LostinTX
    Was let go from my job 8/24. I couldn't keep up my performance because of T and all the depression. Already have new certs for new jobs :)
    LostinTX
    Last night I watched a movie without phone next to me playing masking noises. Little victories.
    View previous comments…
    ZFire
    SharonBell
    @LostonTX I use my phone to all day for sound therapy. My problem is I can't sit there and relax because my anxiety is bad from the T, I'm not sure how to explain it, but I guess I'm scared of my T, I feel like a difference person and I havnt accepted it.
    SharonBell
    @LostinTX do you have any suggestions that would help me? My T is in both ears and my head. It buzzes-static electricity all day 24/7, mine is the same except when it gets louder.
    LostinTX
    Will Shore's device help only people that can modulate their T? Please say it will include regular T too! :(
    kingsfan
    I think several people have written here that Dr Shore stated it's likely it will, just that she isn't testing for it right now to keep parameters constrained.
    LostinTX
    The researcher for the OTO-313 study reached out to me and said they will unblind and I'll be able to find out what I got at an unknown date
    kingsfan
    Is it okay to ask what you think you may have been given?
    LostinTX
    @kingsfan i think i was given the drug but could be wrong. My T was loud over everything and i had horrible insomnia for a year no matter what i took! Ambien couldn't even knock me out for more than 2-3 hours. 2 weeks after the shot i started sleeping better and the volume went from severe to moderate over 2-3 months after
    LostinTX
    2 nights crap sleep again and my head is buzzing loud AF today. FML I am so sick of this. I can't do this the rest of my life. 20 months
    LostinTX
    @Joe Cuber I'm sorry and know how you feel. I had to take 3/4 of a .5mg klonipin today. It helped and I was then able to get outside and walk my dogs a mile which I haven't done in weeks due to catching covid and being sick 2 weeks. Hope your day gets better too!
    SharonBell
    @LostinTX did you do an experiment? I saw you talking about the oto313 study.
    LostinTX
    Still not 100% recovered from covid. The sinus congestion and crap coming up is just neverending. 12 days now. Hopefully it fully goes soon
    SharonBell
    @LostinTX I got my tinnitus from Covid. I had it twice in 2021-2022 and then had another really bad virus in January of 2023.
    SharonBell
    @LostinTX Did it make your t worse? My husbands brother-in-law had Covid and his T was worse, but I think it's gone back down now. I wear my mask everywhere I'm so scared of getting Covid again it terrifies me.
    LostinTX
    @SharonBell no it did not make it permanently worse. Every time I've caught it I've taken ivermectin and other antivirals like lysine, oil of oregano and cat's claw
    LostinTX
    Covid turned into MASSIVE sinus infection. Steroid shot, oral prednisone and amoxicillin. It's helping but I think I won't be 100% for weeks
    LostinTX
    AND it's COVID! Ugh! Last time I was asymptomatic. This time it's like the flu with a bad sinus infection like I once had13 years ago.
    BrOKeN_1
    Hang in there.. the body aches were the worse for me. Like getting hit by a truck. I lay in bed for three days!
    LostinTX
    My right (good ear) is clogged with fluid. Woke up last night hearing in that ear was like 40% less than right. if i do valsava it squeals
    View previous comments…
    Wrfortiscue
    @ZFire yeah I'm guessing. Usually it's the same story. Blows too hard, hears a pop then loud ringing
    Damocles
    Barotrauma, @ZFire.

    Ruptured the eardrum in my right ear when I was nine, doing it.

    And like @Wrfortiscue said, far too many negative anecdotal accounts around, in relation to tinnitus, for it to be something I would recommend.
    LostinTX
    Yeah I read those stories and made a point to not blow too hard, but the pressure was so bad
    LostinTX
    Yesterday wasn't too bad and then I got sick. LOUD AF last night and this morning all over head high pitch buzzing. Can't imagine this years
    Damocles
    Most viruses will decrease hearing + increase tinnitus (temporarily) = spikesville.

    I recommend Quercetin to speed up recovery from the infection.

    And try not to stress over the spike, as that's going to negatively impact your immune system.
    LostinTX
    @Damocles thank you. I think I have some in our medicine cabinet. Yeah this has made me spin out to a bad place today wondering how long I can continue with this loud shit and really not want to keep going. It also sounds like I have laryngitis from whatever this is.
    LostinTX
    Spiked bad yesterday, bath running could still hear it! Mom and daughter very sick! Theytook c19 test neg. Downing lysine to fight it off.
    LostinTX
    Read a story this person's loudness was 9-13db. No wonder they "hardly ever think about it" after 2 years. I was measured 56db 12/2020. F me
    Wrfortiscue
    How do you measure?
    LostinTX
    @Wrfortiscue an audiologist at UTSW here did. After the audiogram they play noises to mask. I guess they call it MML? where i've seen it mentioned before. My report showed 56db even though at that time I told them nothing masked during the exam? I know it's much lower than when i had that exam, but I still have horrible spikes!
    LostinTX
    the highly recommended audiologist I had a televisit with today said it sounds like a virus attacked my ear from my explanation of events
    Wrfortiscue
    Any treatment options they recommended?
    LostinTX
    only Widex hearing aids for sound therapy and the whole package with treatment expensive AF $5K after insurance
    LostinTX
    My sleep has been broken again the past 3 nights or so. I was doing so well for MONTHS. Please don't let me be on the rollercoaster again
    View previous comments…
    LostinTX
    @martinberryhorse I feel ya. I was on that horrible rollercoaster no sleep for a year from T onset. Thankfully, I got 7 hours straight before waking last night. Hope it holds! But I do heavily medicate to sleep :(
    MartinPihl
    I can totally relate to that. Do not fall into despair though. I have been through that countless times, but i always get back to the good sleep... though it may take som time.
    SharonBell
    @LostinTX how was your hearing test? Do you have any hearing loss? I saw you said, the audiologist thinks it was a virus.
    LostinTX
    Why couldn't I be someone with "minor" T?! Irks me when people say they're suicidal from hearing it at night. I hear it almost always :(
    Wrfortiscue
    Sucks huh
    BrOKeN_1
    It's frustrating for sure.. takes me all day to adjust. Then overnight it ramps up just to start the whole process over agian
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