LostinTX
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Gender:
Female
Location:
Arlington, TX

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LostinTX

Member, Female, from Arlington, TX

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 Jan 1, 2023

    1. LostinTX
      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
      1. Barry098, Nadia231, ashcash and 2 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        Agreed. I have been trying so hard to not let it take top priority in my brain. Allowed myself to have a more normal day yesterday, but went to bed anxious about consequences of doing so, and then when you wake up to it every day, it’s the worst reminder and immediate downer.
        Jan 1, 2023
      4. LostinTX
        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.
        Jan 2, 2023
        Barry098 likes this.
      5. LostinTX
        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.
        Jan 2, 2023
        Barry098 likes this.
    2. LostinTX
      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.
      1. ashcash, NYCGuy and Guywithapug like this.
    3. LostinTX
      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?!
    4. LostinTX
      LostinTX
      Sleeping 8 hours nightly now with gabapentin, cyclobenzaprine and melatonin combo. I also take PNN NeuroAid I think is helping T/my brain.
      1. aura, bobthebuilder, JPGL and 3 others like this.
    5. LostinTX
    6. LostinTX
      LostinTX
      Been using gabapentin regularly for sleep and my T is a lower hiss all day. I hope it keeps decreasing and disappears one day. Pray daily.
      1. CRGC, JPGL, NYCGuy and 7 others like this.
    7. LostinTX
      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
      1. JPGL, NYCGuy and Daniel Lion like this.
      2. BrOKeN_1
        BrOKeN_1
        Stress maybe? Anxious about what may be? Our brains are goofy goober for sure. Hope it recedes quickly for you.
        Sep 8, 2022
        JPGL likes this.
      3. BrOKeN_1
        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.
        Sep 8, 2022
        JPGL and LostinTX like this.
      4. LostinTX
        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.
        Sep 9, 2022
        JPGL likes this.
    8. LostinTX
      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.
      1. JPGL, NTV, Daniel Lion and 8 others like this.
      2. JPGL
        JPGL
        How did you know ?
        Sep 7, 2022
      3. Wrfortiscue
        Wrfortiscue
        Oh my! Hopefully you continue that trend
        Sep 7, 2022
        ZFire likes this.
      4. LostinTX
        LostinTX
        @JPGL I reached out to the researcher. The study was unblinded and she was able to share with me what I got.
        Sep 7, 2022
        JPGL, NYCGuy, ZFire and 2 others like this.
    9. LostinTX
      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
    10. LostinTX
      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?
      1. JPGL and NYCGuy like this.
    11. LostinTX
      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 :)
      1. JPGL, Marshall, NYCGuy and 1 other person like this.
    12. LostinTX
      LostinTX
      Last night I watched a movie without phone next to me playing masking noises. Little victories.
      1. JPGL, NYCGuy, Keith Handy and 5 others like this.
      2. View previous comments...
      3. ZFire
        ZFire
        I haven’t seen it, but do like Oscar Issac (met him once), so will keep this on my radar. Movies are great. I watch them as a form of escapism. It always feels good when there’s something in the film that becomes relatable or resonating.
        Aug 23, 2022
        LostinTX likes this.
      4. LostinTX
        LostinTX
        @ZFire Yes, I think he is a great actor! Haha we should start a positive/funny thread. "What celebrity have you met? " The only one I've met was Pauly Shore as a teenager hahaha. But my cousin's brother-in-law is Nick Turturro lol. I didn't go to the wedding otherwise would have met him. He took my cousin to the Oscars and a party at Elton John's. Lucky duck!
        Aug 23, 2022
        ZFire likes this.
      5. ZFire
        ZFire
        Aug 24, 2022
        LostinTX likes this.
    13. LostinTX
      LostinTX
      2 days in a row it's been pretty mild. Low level hissing. Took 2 gabapentin last night and dreams were crazy AF! Had watched Eyes Wide Shut
      1. Rockman, ZFire, NYCGuy and 3 others like this.
      2. Joe Cuber
        Joe Cuber
        Nice! Two mild days, a good flick, and crazy dreams to boot. Lots to be thankful for ;)
        Aug 17, 2022
        ZFire and LostinTX like this.
      3. Wrfortiscue
        Wrfortiscue
        What kinda dreams
        Aug 17, 2022
        Rockman, ZFire and Joe Cuber like this.
      4. LostinTX
        LostinTX
        Aug 17, 2022
    14. LostinTX
      LostinTX
      Will Shore's device help only people that can modulate their T? Please say it will include regular T too! :(
      1. NYCGuy likes this.
      2. kingsfan
        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.
        Aug 11, 2022
        LostinTX and NYCGuy like this.
    15. LostinTX
      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
      1. kingsfan
        kingsfan
        Is it okay to ask what you think you may have been given?
        Aug 11, 2022
        NYCGuy likes this.
      2. LostinTX
        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
        Aug 11, 2022
        Gabriel5050 likes this.
    16. LostinTX
      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
      1. NYCGuy, Joe Cuber and Wrfortiscue like this.
      2. Joe Cuber
        Joe Cuber
        I'm in the same boat. Last 2 nights weren't good for me also, and I'm paying the price
        Aug 11, 2022
      3. LostinTX
        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!
        Aug 11, 2022
        Joe Cuber likes this.
      4. Joe Cuber
        Joe Cuber
        That's great @LostinTX! That's a huge positive. I'm trying my best to stay distracted, doing a lot of family time with the kids
        Aug 11, 2022
        LostinTX and Steph1710 like this.
    17. LostinTX
      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
      1. ThomasF and NYCGuy like this.
    18. LostinTX
      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
      1. Wrfortiscue likes this.
    19. LostinTX
      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.
      1. NYCGuy and Wrfortiscue like this.
      2. BrOKeN_1
        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!
        Jul 28, 2022
        LostinTX and NYCGuy like this.
    20. LostinTX
      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
      1. View previous comments...
      2. Wrfortiscue
        Wrfortiscue
        @ZFire yeah I’m guessing. Usually it’s the same story. Blows too hard, hears a pop then loud ringing
        Jul 27, 2022
        Damocles and ZFire like this.
      3. Damocles
        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.
        Jul 27, 2022
        Wrfortiscue and ZFire like this.
      4. LostinTX
        LostinTX
        Yeah I read those stories and made a point to not blow too hard, but the pressure was so bad
        Jul 28, 2022
        Wrfortiscue likes this.
    21. LostinTX
      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
      1. NYCGuy and Wrfortiscue like this.
      2. Damocles
        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.
        Jul 26, 2022
        Steph1710, LostinTX and Wrfortiscue like this.
      3. LostinTX
        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.
        Jul 26, 2022
        Damocles likes this.
    22. LostinTX
      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.
      1. Wrfortiscue likes this.
    23. LostinTX
      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
      1. Wrfortiscue
        Wrfortiscue
        How do you measure?
        Jul 22, 2022
      2. LostinTX
        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!
        Jul 22, 2022
    24. LostinTX
      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
      1. Wrfortiscue likes this.
      2. Wrfortiscue
        Wrfortiscue
        Any treatment options they recommended?
        Jul 21, 2022
        NYCGuy likes this.
      3. LostinTX
        LostinTX
        only Widex hearing aids for sound therapy and the whole package with treatment expensive AF $5K after insurance
        Jul 22, 2022
    25. LostinTX
      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
      1. MartinPihl and martinberryhorse like this.
      2. martinberryhorse
        martinberryhorse
        Same boat. I was actually sleeping well a week ago and now it's lucky if I can get a couple hours.
        Jul 11, 2022
        LostinTX likes this.
      3. LostinTX
        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 :(
        Jul 11, 2022
        martinberryhorse likes this.
      4. MartinPihl
        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.
        Jul 11, 2022
        LostinTX and martinberryhorse like this.
    26. LostinTX
      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 :(
      1. Wrfortiscue
        Wrfortiscue
        Sucks huh
        Jul 9, 2022
        martinberryhorse and LostinTX like this.
      2. BrOKeN_1
        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
        Jul 9, 2022
        martinberryhorse and LostinTX like this.
    27. LostinTX
      LostinTX
      I hate sitting or trying to watch TV or just sitting trying to work I can hear T all the time. If I go to the grocery store though not much
    28. LostinTX
      LostinTX
      I have diagnosed MDD in all my medical records from mult dr's since this started. Wondering if I should reach out for the XEN-1101 trial?
      1. Wrfortiscue likes this.
      2. AnthonyMcDonald
        AnthonyMcDonald
        Yes. It would definitely be a huge help to the community (not to mention, yourself) . As long as you can tolerate a few MRIs (which they definitely will do). I think the MRI part is generally keeping most people away, though.
        Jul 4, 2022
      3. Hottopic29
        Hottopic29
        If its close why not try it
        Jul 7, 2022
    29. LostinTX
      LostinTX
      Trip was ok. Cried a lot first day spike from car drive and thunderstorms? Day 2 kept busy on the beach and kayaking.
      1. NYCGuy, makeyourownluck and ThomasF like this.
    30. LostinTX
      LostinTX
      Leaving this morning to the beach first trip since T 19 months ago. 6 hours in car with husband, son and 2 grandkids. Wish me luck!!
      1. Steph1710, JPGL, BrOKeN_1 and 3 others like this.
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  • About

    Gender:
    Female
    Location:
    Arlington, TX
    Tinnitus Since:
    11/2020
    Cause of Tinnitus:
    poss ototoxicity/unknown/BVVP diagnosed first then tinnitus