LostinTX

LostinTX

Member From TX
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  • 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
    SharonBell
    @LostinTX I hear mine all the time it never stops. When I go to the grocery store all the noise of the machines makes mine louder when I'm finished.
    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?
    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.
    Hottopic29
    If its close why not try it
    LostinTX
    Trip was ok. Cried a lot first day spike from car drive and thunderstorms? Day 2 kept busy on the beach and kayaking.
    SharonBell
    Car rides are the worst.,wish I didn't have to drive and I know I definitely couldn't do a long distance drive.
    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!!
    DebInAustralia
    Have you tested your adrenals and thyroid as part of meno? Also look at histamine .. given it is attracted to estrogen
    LostinTX
    no, I haven't been back to the dr in a month or so :(
    LostinTX
    I've had no more improvements in months and now at 19 months total with T. Tried everything possible. This can't be the best it will be??
    Wrfortiscue
    Some improve years later but it's probably just the brain accepting it I don't know
    LostinTX
    Had a fleeting T episode today in my "good ear" that lasted about 20 min. Ironically, while applying at the passport office. Freaked me out
    LostinTX
    T is definitely not stress for me. My employer just laid off 8% of the company yesterday and probably more to come. Getting my backup plan
    SharonBell
    Is your Tinnitus in both ears and head or just your ears? @LostonTX
    Hottopic29
    Hey , im little dumb but whats the Differences with the korea shot and the SGB are they not both lidocaine shots just in different spots im sure one these pain clinics gotta know how to do it in spots they do in korea ..
    LostinTX
    SGB is lidocaine and steroid in your stellate ganglion block in your neck. The Korea treatments are acupuncture needles in the side of the face and around the ears with lidocaine
    DebInAustralia
    How are you?
    View previous comments…
    DebInAustralia
    I'm the same. Stopped hrt till further hormonal/adrenal results available. A kinesiologist said its borrelia .. inflammation .. and low estrogen contributing to my t. Restarted lyme herbs .. adrenal herbs .. nutrients .. probiotics ... still unchanged :(

    Did you stop ldn? If so, why? I'm still thinking I'll try it once I get all tests back
    LostinTX
    @DebInAustralia yes I took a break from LDN. I do feel it was a little louder on it for me possibly? I am happy with the HRT for now not experiencing any more night sweats, hot flashes or insomnia. I take my night meds and sleep a solid 6 to 8 hours now. I just hate waking up with T lol. I have made so much improvement since last summer though, it makes me hopeful it will continue to get better. fading.
    SharonBell
    I'm going through metapause. Had blood work done last year. I can't remember the month. The last time I had a period it was a lot heavier was benever like that before. My periods were light and the. Like spotting and then to not having one for a couple years.
    LostinTX
    Is my T reactive? When I lay down to sleep my T goes down as I burrow my head between 2 pillows, no sound gets in. Second awake it's louder
    Hottopic29
    LostinTX
    I replied on it. I am seriously thinking about ordering Flupirtine though
    Hottopic29
    @LostinTX thats natural product .. i worry about the eye shit with other
    LostinTX
    @Hottopic29 yeah I hear ya! I did also get coenzymated B-1 today after reading up on that too. I am just so hesitant to believe in the salicylate induced studies especially when it's a few days of that and then they administer something fast. I want to see studies they killed the shit with gentamycin for weeks on end and then administered something.
    LostinTX
    Soooo....Alopecia has been cured from a clinical trial. Cool. Hair loss doesn't kill people, but tinnitus does via S. When TF is a T cure?!
    View previous comments…
    Wrfortiscue
    Treatment hopefully soon!
    ThomasF
    It's easier to get peoples attention with something they can see. Hearing loss and T while ironically not silent is invisible. That's why its important to support the efforts already in play and spread awareness as much as possible.
    SharonBell
    @LostinTX what did the coenzymated-B1. What did this do to you?
    LostinTX
    I'm curious how loud everyone's T is? Although I don't have blaring over the grocery store now. It is loud while working and watching TV etc
    View previous comments…
    LostinTX
    @AfroSnowman I thought I saw in a thread you had tried Lenire and it had helped some?
    LostinTX
    @ThomasF I'm sorry to hear that. I don't have hearing loss either and ironically have never had even an ear infection as a child or an adult :/ My job relies on my ears so I have had an extremely difficult time with this. It was insanely loud for a year and now I can still constantly hear it but would say it's the high end moderate. Still praying for more improvement. This can't be my baseline :(
    SharonBell
    LostinTX
    T has been up and down since SGB but with my sleep meds now I'm not waking in the middle of the night at all. Sleeping 7 hours straight
    LostinTX
    I did 2 SGB blocks on Friday. Spiked that day, he used lidocaine and steroid. But yesterday I went like 70% of my day not hearing T.
    LostinTX
    and today I'm once spiking again. Can't win
    Hottopic29
    @Travis Henry is in Texas... i was telling him about this it may help with his Pain issues .. where in texas can he look into this
    LostinTX
    Bad spike today. Didn't take cyclobenzaprine to sleep last night, is that why? or that thunderstorms all night and barometric pressure?
    View previous comments…
    Travis Henry
    I wanna try cyclobenzaprine soon. Gotta find a doc for it. Also interested in the SGB by a lone star pain clinic in Fort worth. Any info or advics you can give is welcomed. T AND H are killing me
    Travis Henry
    I'm in Dallas.
    SharonBell
    I think the barometric pressure has something to do with it also. Has anybody taken trazodone before? I started taking it then I quit thought it was making T louder. Started it again, but also started sound therapy again with open ear earbuds and didn't know if that was making it louder. So not doing either one now just sound therapy on my phone and my sound machines.
    Hottopic29
    @LostinTX what are you taking now ? Anyhing help a bit ?
    LostinTX
    Having a shitty spike day. I just started Armour thyroid lowest dose possible (day 2). Is this why?? Drs been trying to get me on it a year
    LostinTX
    When I see people and kids with Bluetooth earbuds walking around all day I seriously want to knock them out of their head!
    View previous comments…
    Rockman
    I've tried. It won't happen to them is what they think
    Safari1999
    One time on the bus to school I passed by a local secondary and all the kids were filling in for class. At least 40% had earbuds in.
    LostinTX
    @Safari1999 that's sad. T has seriously impacted my life and now I won't let my 12 yr old son wear gaming headphones. He hasn't pushed back much because he saw me at my worst and suicidal at onset. They seriously need to run PSA's on TV about the impact on young people
    A.H.M.
    Why do you think that there are not more people who have done the OTO313 clinical study that have shared their experience whether it be good or bad? I find it odd that more participants have not come out and said what the results were for them? I am really leery of the intratympanic injection and not sure that I want to go through with it? Can it potentially cause deafness or make T and H worse? Just curious...
    LostinTX
    the researcher will give you a pamphlet about everything for informed consent. I read thru everything and then decided it was worth the risk as adverse events were minimal. I don't know why more people aren't sharing. I didn't want the study compromised so i shared because I thought recruiting was over from what the clinical trial site says
    Marshall
    I know a story who I will not name who made his H worse
    LostinTX
    Got a baby kitten rescued yesterday and husband says it screams". He picked it up and slept with it in his arm all night. I didn't hear jack
    kingsfan
    When my cat was a kitten I would hold it at night while I slept. Now, as an adult, it loves to be held.
    LostinTX
    @kingsfan my husband is a big guy that loves to bottle feed kittens and cuddle them falling asleep lol :)
    Steph1710
    @LostinTX aww that made me smile :) Your husband sounds great!
    LostinTX
    The past 2 nights I've taken gabapentin and cyclobenzaprine and it knocked me the F out! Got 7 hours straight last night :)
    Steph1710
    Good!
    Hottopic29
    @LostinTX Hey friend.. was thinking about you was going to message about this and searched cyclobenzaprine and you showed up .. lol .. how did this experience go does It lower or help any
    LostinTX
    I think it does make it lower, at least that was my experience at onset and a friend of mine that also takes it for her T. It's not my script but my mom's so I try not to take much but it def helps sleep
    A.H.M.
    Would you say that it was worth it to you that you had it done? You did not have any bad side effects from it?
    LostinTX
    Yes.
    A.H.M.
    I am still concerned about side effects. I would like to have improvement in the loudness of the noise that I hear. My T is really severe 24/7.
    LostinTX
    the only side effect I had was slight pain in my ear and my ear canal itched inside for 2 days.
    A.H.M.
    Thanks for your response. May I ask you some other questions?
    I am actually going for my screening next week and I have severe high frequency hearing loss with severe tinnitus in both ears.
    Do you think from your own experience that if I do in fact get the actual OTO313 that it will help in my volume (which is incredibly loud and shrill) being reduced to a more tolerable level?
    Thanks.
    View previous comments…
    LostinTX
    My situation was so bad that I figured I had nothing else to lose, so in the words of Hamilton "I'm not throwin away my shot" was going through my head on replay lol
    SharonBell
    LostinTX what was the trial you are talking about the Oto 313 and the FX 322 suppose to do with people with Tinnitus?
    SharonBell
    A.H.M. I also have severe high frequency hearing loss but not in the speech frequency mine is higher so it makes my tinnitus louder. Mine is in both ears and my head buzzing-static like electricity. Where did y'all have to go to get that done and did it help you? I know a lot of the ones I look up are so far away. I'm in NC.
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