_Shoto_

_Shoto_

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  • _Shoto_
    Every day I'm grateful for the supportive family. Mom mom and my grandpa. Beautiful people. I love them so much. They do everything they can
    _Shoto_
    Random bursts of sadness and loneliness make me cry every day since I got my T and H. I can't wait to finally habitulate this year.
    _Shoto_
    My tinnitus never was this loud before as it is today. Weird. This is the first time I can't sleep due to loudness. Maybe just anxiety?
    Tryn2BHopeful
    Benzo's can have a rebound effect if I understand correctly.
    _Shoto_
    Hi @Tryn2BHopeful, I hope you are right and it's just a side effect of Clonazepam. I want to believe this is all just anxiety in my head and nothing serious
    RunningMan
    @Tryn2BHopeful Yes, seems that's where you hear about the real struggles with benzos - trying to come off of them and interdose withdrawal effects of more anxiety. The hyperacusis and possibly T may improve over time after weaning off permanently.
    _Shoto_
    My hyperacusis is back. Can't open tea bag without uncomfortable ear flatterings. Ringing is louder than usual. Literally all out of nowhere
    Marina Moon
    SAME! My ears flutter with opening tea bags, plastic bags, utensils clattering, but paper is awful!
    RunningMan
    Ear fluttering sounds like TTTS rather than hyperacusis. I have both but experience TTTS myself sometimes to voices or typing and sometimes individual thumps spontaneously without external sounds. But, some sounds are perceived excessively louder than they really are due to hyperacusis.
    _Shoto_
    People born in 2050 and getting T late in their lives wouldn't understand the hell we are experiencing right now in 2024 with 0 treatments:/
    Lorca
    We will see. Hope that's the case for them. I think realistically the only way out of this is some sort of brain implant
    crescentsky
    at this rate, I feel like even in 4000, we are still doomed lol
    _Shoto_
    Well. Today is definitely a day...and not a good one. Anxiety fuels tinnitus as hell. Trying watching anime/play games to distract myself :c
    View previous comments…
    _Shoto_
    Hello @streifzug, I have a question, do you have severe hyperacusis? I play games without headphones with volume 20/100 and 5/100 if with headphones. Still not great because I can only hear main dialogues but can't enjoy the background music and sounds
    streifzug
    no. only mild hyperakusis. but near or catastrophic T left, right and center. my head is one loud fucking beep. I used to play with masking sounds in the background. now everything it gets drowned out by the t. no fun :(
    _Shoto_
    @streifzug I hope you'll feel better soon. It looks like your T may be worse than mine. I am so sorry this happened to you. I continue to play games and listen to music but I totally agree with you that it's not as fun as before. I can't enjoy many things now and probably nothing can do about it. I'm just hoping Auricle device will be able to help me...if I will have enough money to rent it
    _Shoto_
    I wish I were given a 2nd chance with tinnitus. Like If it was only for a week or month. I did stop listening to loud music. Life is unfair
    View previous comments…
    RunningMan
    Dr. Shore wouldn't or couldn't provide a price for the Auricle device, but Lenire is closer to $4K, so Auricle may be that much or more. We could have a lot of time to save up before it's widely available, though.
    _Shoto_
    @RunningMan 4K is insane amount of money for renting a device, wow. It looks like I should start saving up right now. But again, I hope they will be able to provide installment plans or something like this. Paying 4K in one go is too much
    RunningMan
    Well $4K was just putting it in perspective of what I've heard of Lenire. I think I've seen someone say $3500 total also. But, the Auricle device could come in above or below that since they haven't given any estimates.
    _Shoto_
    Already fully accepted I'll never know the true cause of popping in ears when I swallow/yawn. Never had this before T and H :c Hate it.
    View previous comments…
    Marina Moon
    I have effusions in both my TMJs (determined via MRI) so that leads to inflammation of the esustachian tubes because these structures are right next to eachother. Hence a build up of mucus, which throws off the pressure in the eustachian tubes, and why they're having trouble opening and closing properly. It doesn't hurt, but it annoys me greatly!
    Marshall
    thats all that noise is, just mucus around the membranes making a noise when opening and closing. If there is too much mucus like when you are sick or have chronic inflammation, that's when it becomes an issues bc you cant equalize properly. the noise when you E tubes are opening and closing is normal to everyone and part of normal function.
    Marshall
    @Marina Moon exactly, fluttering is a middle ear (bones) hitting your ear drum in response of stimuli such as noises and other things, could be internal as well like yawning/coughing
    _Shoto_
    Today's my tinnitus is 1/10 and I'm so happy. My stupid neighbors screaming loudly while gaming but my T and H still haven't spiked yet!
    Kiyomi
    I miss screaming while gaming or gaming in general. :(
    RunningMan
    I would love to have a 1/10 tinnitus. I don't think my tinnitus was that low in about 20 years.
    4Grace
    1 out of 10 / ohhhh man. Awesome
    _Shoto_
    I forgot to write here that Clonazepam "cured" all my symptoms of moderate hyperacusis for 48 hours. Not sure about T loudness though...
    _Shoto_
    It's been 3 days and my hyperacusis is still not as bad as it was before. Looks like some relief symptoms were permanent! I'm happy with that, but I will still wear earplugs outside of my house all the time with the exception of nature preserves and parks that are located at least 50 meters away from the road
    RunningMan
    3 days? But 2 days ago is when you said you took it, and you said it just made you sleepy and nothing else by that afternoon (Friday afternoon CST). Anyway, be careful with that benzo, especially with that much of a doze in one day. Typically benefit is temporary and becomes less effective with continued use.
    _Shoto_
    Took 0.5 Clonazepam half an hour ago. So far no reduction in anxiety and tinnitus loudness, but oh boy my eyes are heavy as hell. Will wait
    View previous comments…
    SamRosemary
    What route is it? Oral or dissolving? Make sure you're taking it correctly. Also 0.5 is the lowest dose I'm pretty sure.
    _Shoto_
    Hi @SamRosemary, yes. It's oral generic tablet. The first one I swallowed whole, the second one I took sublingually just in case. The third one I took orally again. So far 1.5 mg with nothing. Like a placebo effect. Probably I'll ask doctor to change it for something else
    RunningMan
    1.5 mg of Clonazepam would be equivalent potency to at least 6 of my Lorazepam 0.5 mg tablets! That's a pretty big dose. Be extremely careful. I won't even take one of my Lorazepam with short half life more than once every three days due to tolerance and dependency issues that build quickly with benzos. Works a little for anxiety.
    _Shoto_
    Why is my hyperacusis worse in the morning? Even the sound of running water causing discomfort :/
    _Shoto_
    I'm so proud of people who were able to habituate and forget about their tinnitus. It's so freaking loud today. Especially my worst ear. Oh.
    _Shoto_
    My T has suddenly spiked at volume. I'm not sure why. My laptop volume is 5 out of 100. I protect my ears 24/7. Oh well...I don't care tbh
    _Shoto_
    Had a zoom with my psychiatrist. She offered Lexapro and Busbar for tinnitus. I spent half an hour on her education about ototoxicity of all antidepressants and finally was able to get 15 Clonazepams. I hope it will mute tinnitus at least for 2-3 hours. I'm not asking for cure or anything. Just 2 hours of no panic attacks and ringing.
    streifzug
    _Shoto_
    Hi @streifzug. Benzodiazepines are usually ototoxic when you cutting them of after a long period of consistent use (withdrawal). Using them once a week or less should prevent this from happening. Thanks for the info and link though!
    _Shoto_
    The new hissing tone in my right ear appeared again. 2nd time. Last time it went away after 3 days. Not holding my breath but... please.
    _Shoto_
    Well. It's morning and it's still here. Wind sound in my good ear. Maybe... it's going to disappear before Friday lol
    _Shoto_
    It's disappeared. Well...have no idea what's going on in my middle and inner ears but some serious processes and they are kinda scary. Anyway, tomorrow I MAY be finally getting anti-anxiety meds for my panic attacks. I hope everything goes smoothly and I won't be prescribed one more antidepressant that was linked to worsening tinnitus in patients with already existing tinnitus
    _Shoto_
    I really think my T loudness and H pain are slowly decreasing, but that doesn't matter. I have 13 cavities. I need 13 drillings...Yeah. Yeah
    _Shoto_
    Tomorrow is 3rd month anniversary of my T and H. Gonna make pizza and maybe some spicy tacos to celebrate this disgusting turn of events lol
    _Shoto_
    XEN1101 and Auricle are the reason why I'm trying my best to continue living. A very small and phantom hope that is probably useless lol
    _Shoto_
    My 3rd month anniversary this Sunday. I'm still in denial phase to be honest. I can't believe I had everything in my life 3 months ago...
    Kiyomi
    Yep and now it's gone or atleast severly altered. Everytime I had bad things happen or was down, I had my hobbies and ways to cope. But now I have nothing. Basically reinventing myself is the only thing I can do now. :(
    _Shoto_
    Why do they put HVAC units right under the windows in so many apartments in my city? It's so loud inside of the bedroom...78-85 db...
    gameover
    Because fucking Murica. Land of cheap shit and loud noise.
    _Shoto_
    It's over. Doctors said not to come back bcz they did all they could. This is a new permanent reality. Severe H and T for the rest of life
    _Shoto_
    My last hope is an anti-anxiety meds. If they would be able to reduce my T and H even if only for a couple of hours it's going to be a win. I hope my new psychiatrist will not be as conservative as my old one ._.
    BellaMia
    I had bad hyperacusis in the beginning. Tylenol helps with pain and inflammation. Make homemade ginger and tumeric tea and add pepper to active it. This helps with pain and inflammation. Magnesium helps with anxiety, sleep and inflammation. Hope this helps.
    cjbhab
    imo their response should be that they are going to go to the ends of the earth to find a solution for you and won't be able to sleep at night until they do.
    _Shoto_
    I woke up at 2 am and my tinnitus is raging. I have no energy left to cry or fantasize about me waking up without tinnitus one day. Awful.
    View previous comments…
    _Shoto_
    At the very least I hope that strong anti-anxiety meds will help me for at least a few hours. I will not use them every day or even every week but god I just need one, ONE, silent day. I'm not religious but I pray it will help. At least 20% noise reduction IS a win to me!
    Tryn2BHopeful
    I felt the same way. Sometimes I wonder how this is even real.
    RunningMan
    20% reduction would be terrible, maybe not even noticeable, particularly with variable tinnitus. 50% reduction is 6 dB, which is noticeable but not that high, either. So hopefully Auricle will provide more than that over time for those it helps.
    _Shoto_
    My temporary hissing sound in my left ear is gone.I had it for like 3 days. Now my tinnitus is again just super loud high-pitched ringing
    _Shoto_
    3 months anniversary is very very close. I feel worse than in the beginning of this journey... It's so loud...man, I'm so defeated
    _Shoto_
    Physical therapist made my T and H worse while doing massage to make my T and H better... Unbelievable. I was shocked so I didn't left room
    _Shoto_
    I am literally praying rn before going to bed that everything is going to be okay and I won't woke up with a spike in H and T. I'm so scared. I am also only trying to get meds for panic attacks. I won't survive a flare up :c
    _Shoto_
    My physical therapist is so good at fixing my jaw. Literally 10/10 BUT she made my Hyperacusis much worse due to loud talking :c
    _Shoto_
    My allergies test was alright. I'm allergic only to mold and dust. No plants or food. But I'm worried about my hyperacusis so much. I think I'll refuse to see my physical therapist until my hyperacusis is totally gone. Or perhaps I'll use earplugs all session long. Can't stand loud speaking next to my ears
    _Shoto_
    Tomorrow I have an allergy test on my skin. I'll find out what I'm allergic to. ENT thinks it may cause tinnitus. It's 100% not but I agreed
    _Shoto_
    Also, I was able to get a referral to a psychiatrist who prescribes anything you ask him for. Well, at least judging by his prescription records from 2019. I am so close to get real meds for my panic attacks... finally no "take hydroxyzine or amitriptyline" BS!
    _Shoto_
    I was able to obtain not ototoxic migraine medication for my daily headaches, now I'm finally about to get not ototoxic panic attack meds. I'm finally ditching ibuprofen and antidepressants. Life is slightly getting better, even if only by 0.01%.
    _Shoto_
    I will not miss antidepressants, but ibuprofen is so so good in managing even above average moderate pain. It's such a shame I can't use it anymore safely. It helps with headaches and toothache 100% of the time. It was such a life-savior. Same with paracetamol and NightQuill syrups. That's unfair that all of them are extremely ototoxic! :c
    _Shoto_
    Tinnitus is deafening today + crazy headache. I did use THC but not sure if it's all related. I feel so bad, so so bad. Almost in agony lol
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