u/jacyndy99

I get so confused on this drug.. is it only meant for Ménières ?? Or is it possibly available (if available) for people who suffer from SSHL, &/ or tinnitus ?? I read conflicting answers..

Like it couldn’t hurt to try for tinnitus/ SSHL right?? At times i wonder is i was misdiagnosed. But two ENT’s said SSHL..

Man, i really hope this thing is available to market in 2026/-2027.. & i hope it would be available for us who have SSHL/ tinnitus :( we also deserve some relief.. i wish there was something we could do to get things rolling more urgently..

Be honest, has anyone had their tinnitus just disappear?? Or is the only hope to just habituate & avoid spikes ?? So far the only thing i notice to cause a spike was smoking cannabis, & a lack of sleep.

I’m hoping one day this shit just goes away. The hearing aid seems to mask some of it, especially in louder environments. But in silence it seems to still obviously be there, or if i try to listen to it, i almost feel vibration & a little dizzy. Ughhhh

Be honest, has anyone had their tinnitus just disappear?? Or is the only hope to just habituate & avoid spikes ?? So far the only thing i notice to cause a spike was smoking cannabis, & a lack of sleep.

I’m hoping one day this shit just goes away. The hearing aid seems to mask some of it, especially in louder environments. But in silence it seems to still obviously be there, or if i try to listen to it, i almost feel vibration & a little dizzy. Ughhhh

I mean, are they even working on a cure or treatment for CHRONIC SSHL??? Idk if anything sounds promising..

I am SO paranoid.. the other day (i believe friday night) when i got out the shower my good ear (L) started ringing really loud.. only lasted a few seconds. Thank god ! But the last time this happened it rang for a minute straight & then my R ear went deaf. Then weeks later i was diagnosed with SSHL.. last night i heard a ring almost like tinnitus in my good ear. It rang for a brief second then stopped. It was loud enough to wake me up in my sleep. But again haven’t been sleeping the greatest since I’ve been paranoid for days.. does ringing ever happen to you guys in your “good ear” or am i possibly getting UNLUCKY AGAIN.. ugh i pray to god it was just a brief episode. I am so stressed & depressed.. please give me feedback, or suggestions.. 😭 ENT hopefully tomorrow morning :,(

Has everyone given up drinking &/ or smoking since being diagnosed with SSHL? At events i sometimes would like a drink or in general to smoke (bud) but anymore im so paranoids about the what ifs. I feel like this phenomenon totally robbed me of my social life & battery. I feel so tired, depressed, hopeless.. all year I’ve stayed basically completely isolated, also trying to stay sober or clear of smoking.. i caved in today & hit my pen. My T seemed to have improved, it’s not AS intense as it was even when i did smoke today. That’s the only plus that I’ve noticed. I’ve gotten hearing aids & they do seem to help when I’m at work. But when i take them out, I’m reminded of how much hearing i have actually lost. It puts me back in a depressive episode. I find myself looking up cures/ meds that they may be working on almost daily. There seems to be no promises any time soon.. especially those of us who has chronic SSHL.. how do you guys cope? I’ve been feeling so down this past week

I’m starting to think cannabis may have caused my hearing loss. There’s been a mix of opinions & research suggestions.. but not long after smoking is when i heard a spike in tinnitus that lasted minutes long & then BOOM.. i went deaf in my right ear. Now i can’t smoke without it spiking my T.. can’t help but to wonder if i didn’t smoke so much or smoked that day would i still have my hearing.. this is truly a nightmare & the unknown makes me so anxious.. don’t know not to prevent it from happening in my good ear. The feeling of wanting to smoke so bad lingers in my daily thoughts.. but the feeling of wanting to keep my other ear healthy out weighs it. But I’d be lying if i said i didn’t miss it :/ I’m 26, & feel like i can’t have a smoke or a drink for the rest of my life.. no fun for me

When will this become available.. all the research I’ve looked into this says it’s passed phase 3 for clinical trials yet, still it’s an investigational drug 😫 i think it said mid this year it would be available for market.. man if this actually gets approved what a life changing thing this could be for others !! Do you guys think this will happen ?? I’m praying for all of us ! I would love to get rid of this tinnitus but if it could even restore my hearing i think i would cry & fall to my knees.. ❤️🙏🏼 i wish they would really push for this !! Prayers prayed prayers !! The 28th of this month will be 3 months since onset, & I’m trying to be hopeful.. but lord.. this is so hard

I use to be a daily marijuana smoker.. since I’ve been diagnosed with SSHL at the end of January i haven’t been smoking as frequently as i use to. There would be times i would stop for days, maybe a week. But occasionally still hit my pen, or eat an edible. I notice a spike every single time. Well I’m meeting my 3 month mark since onset & my tinnitus made little to no improvement. I’ve read every where after 3-6 months it’s considered chronic, & that just doesn’t sit right with me. I decided 3 days ago to go cold turkey & not smoke at all. Today, my tinnitus has calmed way down. Barely noticeable, unless I’m in a completely quiet room, or try to listen to it.. I’ve also revived my HA a couple days ago & it does seem to help mask it. Yesterday i could still hear my T over my HA. Today, it seemed like i couldn’t hear it at all. I can’t help but to wonder.. am i making improvement?? Is the weed causing my T? Or am i just having a “good day”.. will i ever be able to get a buzz again lol.. i really miss smoking.. im trying to wait it out to see if i make anymore improvement.. anyone else experience this??