LostinTX
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Gender:
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Location:
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LostinTX

Member, Female, from TX

Did a self test this morning videoing myself turning left in bed and I still have slight nystagmus? Almost 3 years in? Sep 10, 2023

    1. A.H.M.
      A.H.M.
      Hi,
      I am a new member here today and am interested in your experience with OTO313.
      Is it a temporary or permanent solution to the volume/loudness of the ringing that you hear?
      Thanks
      1. JPGL likes this.
      2. View previous comments...
      3. A.H.M.
        A.H.M.
        Sentinel can I ask you about your experience with OTO313, did you have severe t? Bilateral? Any hearing loss? And no side effects?
        May 8, 2022
        JPGL likes this.
      4. Sentinel
        Sentinel
        @A.H.M. refer to the OTO-313 thread from page 30 onward. My posts there from April 2021 will give you the full picture.
        May 9, 2022
      5. Sentinel
        Sentinel
        @A.H.M. refer to the OTO-313 thread from page 30 onward. My posts there from April 2021 will give you the full picture.
        May 9, 2022
    2. LostinTX
      LostinTX
      Looking into getting SGB, not necessarily for T but for my insomnia and hot flashes. Would be an added plus if it helped T!
      1. SharonBell, JPGL and Wrfortiscue like this.
      2. View previous comments...
      3. LostinTX
        LostinTX
        @Hottopic29 sorry missed this question! Pain Dr's can do them here in TX. I read in a parosmia group that one lady's T went and another guy it went down by 50%. Their T was caused by rona.
        May 20, 2022
        SharonBell likes this.
      4. Hottopic29
        Hottopic29
        Let me know this shits caused all kinda pain in ears to jaw to neck for me nightmare i could definently use one
        May 20, 2022
      5. KaleeTX
        KaleeTX
        Hi LostinTX, I'm new here and found you because I searched the forum for Texas. Have you found anyone/anything helpful here in the D/FW area? Sorry for sort of hijacking this thread....Not really sure how to navigate the forum and feeling so desperate!
        May 20, 2022
        SharonBell likes this.
    3. LostinTX
      LostinTX
      Awake every 2 hours last night! SMH T and early Menopause is kicking my ass and making me feel crazy! Something has to give.
      1. Wrfortiscue
        Wrfortiscue
        Allow more time and try to find ways to relax until then <3
        May 6, 2022
    4. LostinTX
      LostinTX
      Has anyone got silence after their T turned into a low level static "fuzz"? I am at 17 months now.
      1. NYCGuy, Guywithapug and JPGL like this.
      2. View previous comments...
      3. LostinTX
        LostinTX
        @Steph1710 thank you for the encouragement! I am having more times if I'm out doing things I sometimes can't hear it and that's massive improvement. Just got back from Dr too and as I suspected I am in full force early menopause :( and will be starting creams/hrt to see how that goes before I jump to BioTE hormone pellets. I'm so hopeful the progesterone will help my sleep though!
        May 2, 2022
        SharonBell and Steph1710 like this.
      4. Steph1710
        Steph1710
        @LostinTX well I’m wishing you all the best! Hopefully the hormone pellets will offer you some relief. <3
        May 2, 2022
        LostinTX likes this.
      5. mylesm
        mylesm
        yes i did. i still have hyperacusis though
        Jun 30, 2022
    5. LostinTX
      LostinTX
      Please baby Jesus, let one of these treatments get out and work! I need it to go down more or GONE. Messed up sleep over a week now
      1. SharonBell, JPGL, Marshall and 7 others like this.
    6. LostinTX
      LostinTX
      If you had the opportunity which would you try out? Lenire or the Facial and Auriculotemporal Nerve Blocks currently being discussed?
      1. JPGL, Steph1710 and Wrfortiscue like this.
      2. Rockman
        Rockman
        Nerve blocks
        Apr 26, 2022
      3. Orions Pain
        Orions Pain
        Nerve blocks forsure
        Apr 27, 2022
        JPGL and LostinTX like this.
    7. LostinTX
      LostinTX
      Things I have been trying- microdosing mushrooms, trying low dose piracetam, HD turmeric -night time to sleep- melatonin, gabapentin & CBN
      1. View previous comments...
      2. Hottopic29
        Hottopic29
        Think you need to trial everything seperate so you know what works or causes spikes
        Apr 28, 2022
        Supersix, SharonBell and JPGL like this.
      3. LostinTX
        LostinTX
        @Hottopic29 I finally got the LDN filled. Well, 50 mg and diluted myself. Tried 1mg today and I think it got louder. Read up on one of my LDN forums and several people said made their T worse! So I've backed off piracetam and also this for now
        May 2, 2022
        SharonBell likes this.
      4. Hottopic29
        Hottopic29
        @LostinTX yea i read that too causes a spike for some im unsure about @jhonnykarate if he had spike have to read his story
        May 2, 2022
        SharonBell likes this.
    8. LostinTX
      LostinTX
      2 nights in a row no night sweats. Yay! I did get my emergency klonipin out the past 2 nights because sleep had been so shitty fr menopause
    9. LostinTX
      LostinTX
      I have to pull myself together for my granddaughter's 6th bday party at a trampoline park :/. Had to benzo myself hard last night, so groggy
      1. kingsfan
        kingsfan
        I remember having to attend my daughters 8th grade graduation at the football stadium. You'll make it through it okay. I made it with only foam earplugs that day.
        Apr 23, 2022
      2. LostinTX
        LostinTX
        I didn't wear earplugs, luckily we were on the quieter end of the building. I still got a db meter app and measured it was about 85 db where we were. Stayed about 2 hours. My T isn't noise induced so I don't get as nervous. In the beginning though I did have major reactivity and
        Apr 24, 2022
        SharonBell likes this.
      3. LostinTX
        LostinTX
        wore earplugs for a bout 3 months blow drying my hair, walking my dogs (as they bark a lot) and vacuuming. I slowly got more and more used to it so I have no reactivity any more.
        Apr 24, 2022
        SharonBell likes this.
    10. LostinTX
      LostinTX
      T and early menopause with night sweats galore now is truly fucking my sleep. God hates women. Periods, childbirth and menopause are proof.
      1. View previous comments...
      2. LostinTX
        LostinTX
        @makeyourownluck when I was getting my periods last year, yes it would get louder. Thankfully, I don't think menopause is impacting the T but it IS giving me more insomnia on top of it which is really breaking me! T has gradually been getting lower but I started out super severe. I didn't know everyone that gets it doesn't hear over the freeway and blaring inside stores etc. It was insane.
        Apr 22, 2022
        SharonBell likes this.
      3. LostinTX
        LostinTX
        I am praying it continues to go down and I can enjoy TV and other stuff again. I never had an IUD but could never take BC made me crazy
        Apr 22, 2022
      4. makeyourownluck
        makeyourownluck
        @LostinTX insomnia on top of T insomnia sounds rough. I hope it all resolves quickly. I am not looking forward to going through it.

        As far as the TV goes. Someone here suggested playing white noise on a speaker at the same time as watching TV. This tip has made it possible for me to enjoy films again. Almost like tricking my brain.
        Apr 23, 2022
        LostinTX and Steph1710 like this.
    11. LostinTX
      LostinTX
      Having a low T day with random beeps? Made me feel about 60% normal today. Had to sit with my kid in tiny dr's exam room and it wasn't hell
      1. SharonBell, Steph1710, NYCGuy and 3 others like this.
    12. Travis Henry
      Travis Henry
      I live in Dallas Texas and I am in a living hell with extremely loud tinnitus. I am about 7 months in and losing hope that my tinnitus will fade at all. It's driving me crazy. I hope yours goes down soon. Mine is noise induced I believe and I stupidly got only the first vac in September of last year and then started noticing tinnitus in Oct.
      1. SharonBell likes this.
      2. View previous comments...
      3. Travis Henry
        Travis Henry
        Mine is reactive to all sounds & I have to stay in silence pretty much. Was yours ever like that?
        May 12, 2022
        SharonBell likes this.
      4. Travis Henry
        Travis Henry
        Like I can't even talk on a cell phone and my own voice seems to be agitating it and people talking.
        May 12, 2022
        SharonBell likes this.
      5. LostinTX
        LostinTX
        @Travis Henry in the beginning it was reactive to a lot of things but not everything
        May 12, 2022
        SharonBell likes this.
    13. LostinTX
      LostinTX
      Who can watch TV without hearing T? I can't and it frustrates me so much! Constant high pitch hissing! I just want to relax again!
      1. View previous comments...
      2. aura
        aura
        Anyway,even though I struggled a lot back then it was a walk in the park comparing to what I have now. My T wasn't reactive and I didn't have H back then. Now I have around 6-7 tones.
        Apr 23, 2022
        Hottopic29 likes this.
      3. Hottopic29
        Hottopic29
        @aura mines awful to its same both ears and wavering tones in silence fills my head
        Apr 23, 2022
      4. aura
        aura
        @Hottopic29 I also had a spike after ENT tests, but it got better after a time...
        Apr 23, 2022
    14. LostinTX
      LostinTX
      Sleep is still not normal but I wonder if it's also early menopause causing havoc along with T. It completely sucks having double whammy ;(
      1. Hottopic29
        Hottopic29
        Ive heard people who got that under control with hormones there t went away
        Apr 19, 2022
        LostinTX likes this.
    15. LostinTX
      LostinTX
      17 months in. I have been having periods when I am upright or outside can't hear it. That's huge improvement over where I was 6 months ago.
    16. LostinTX
      LostinTX
      I don't feel like digging through threads. Someone update when Susan Shore results will be out? What does that mean for a timeline 2 market
      1. Travis Henry likes this.
    17. LostinTX
      LostinTX
      In 100 years people will look back and shake their heads and laugh at how barbaric tinnitus treatment was with hearing therapy and maskers
      1. Supersix likes this.
    18. LostinTX
      LostinTX
      Finally posted my OTO 313 experience
      1. Steph1710, Leila, Rockman and 3 others like this.
    19. LostinTX
      LostinTX
      Can I please be in that T club of "I only hear it in a quiet room or at night"? FFS
      1. JPGL, tracyNYC, Steph1710 and 3 others like this.
      2. View previous comments...
      3. Ava Lugo
        Ava Lugo
        I would LOVE to be in that club again. That was heaven! Nowadays i dont look for it to hear it in stores or other public places unfortunately.
        Apr 4, 2022
      4. Hottopic29
        Hottopic29
        Hows the microdose
        Apr 6, 2022
      5. LostinTX
        LostinTX
        I think it's going ok? I don't expect big differences microdosing at least for a few weeks. T has been "manageable" but I'd really like to not be aware of it in the day etc.
        Apr 6, 2022
    20. Hottopic29
      Hottopic29
      Hows the microdose
      1. JPGL and NYCGuy like this.
      2. View previous comments...
      3. Hottopic29
        Hottopic29
        I order the mushrooms online from BC in capsules lol
        Mar 29, 2022
        JPGL likes this.
      4. LostinTX
        LostinTX
        oh yeah i saw that post from Samantha and the LD Naltrexone! Good on ordering the mushroom capsules. Here in TX I had to source them on the DL
        Mar 29, 2022
      5. Hottopic29
        Hottopic29
        Yea its illegal in canada to not even sure how theuy able to sell them but the po stores on every corner were illegal back then but they still operated lol
        Mar 29, 2022
        LostinTX likes this.
    21. LostinTX
      LostinTX
      Came across an article a guy with ALS asked for a beer with his mind hooked up to a computer. And they can't fix this T shit why???
      1. Steph1710
        Steph1710
        Ahahaha! Brilliant! XD
        Mar 28, 2022
        JPGL, LostinTX and Wrfortiscue like this.
      2. LostinTX
        Mar 28, 2022
        Steph1710 likes this.
      3. JPGL
        JPGL
        well said LostinTX
        Mar 29, 2022
        LostinTX and Steph1710 like this.
    22. LostinTX
      LostinTX
      So, is NHPN-1010 available for compassionate use? I am ending a clinical trial April 1st and ready to jump
      1. JPGL likes this.
      2. Jerad
        Jerad
        @LostinTX what clinical trial are you ending April 1? Has it helped at all?
        Mar 23, 2022
        JPGL likes this.
      3. LostinTX
        LostinTX
        Hi @Jerad my time in the trial ends April 1st. I was accepted in OTO 313 for unilateral. I don't know if I got drug or placebo yet, but I noticed 2 weeks after that my sleep improved massively and yes my T has improved but I don't know if it was the drug or time as I am 16 months in.
        Mar 28, 2022
        SharonBell, JPGL and Jerad like this.
    23. LostinTX
      LostinTX
      When will Lenire be FDA approved? FDA crooked AF
      1. JPGL likes this.
      2. NYCGuy
        NYCGuy
        Lenire is the one that doesn't want FDA approval and they know they won't get it, they care about money.
        Mar 16, 2022
        JPGL likes this.
      3. NYCGuy
        NYCGuy
        Susan Shore device is around the corner and is a lot better option
        Mar 16, 2022
        JPGL likes this.
      4. LostinTX
        LostinTX
        @NYCGuy seriously? I thought they applied for FDA approval already? And is Susan Shore's device for somatic T?
        Mar 22, 2022
    24. LostinTX
      LostinTX
      Although the sound of T has gone down a lot the past 2-3 months, I feel like I have PTSD because I know it can be louder than a highway
      1. NYCGuy likes this.
      2. Hottopic29
        Hottopic29
        You and me both
        Mar 29, 2022
        LostinTX likes this.
    25. LostinTX
      LostinTX
      It's been almost 15 months. It has faded a lot but I can still hear it everywhere! Will it continue to fade?!
      1. JPGL, NYCGuy, Rockman and 4 others like this.
      2. buttercake
        buttercake
        Have faith, it's free of charge.
        Feb 22, 2022
        JPGL, LostinTX, NYCGuy and 1 other person like this.
    26. Damocles
      Damocles
      That episode of "Arthur" where D.W. became addicted to heroin was always my favourite.
      1. View previous comments...
      2. Damocles
        Damocles
        And I say, hey!
        Jan 6, 2022
      3. Damocles
        Damocles
        Steph, take a look at the dark circles under the eyes, and the look on her face; you can tell she needs a fix bad.
        Jan 7, 2022
      4. LostinTX
        LostinTX
        Oxycontin, but hey you were close!
        Feb 3, 2022
        Damocles likes this.
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  • About

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