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Supersix
How is everyone doing? Please share any updates or improvements in the comments section; inquiring minds would like to know.
ErikaS
Doing some better than 2-3 months ago from major spike in August. Last day of work is January 3rd, just trying to make it until then with so much paperwork and a large student caseload. Going to do my best to enjoy the holidays 🦃 🎄❤️
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ErikaS
@Nick47 I'm so sorry, the variability is maddening and would drive the most mentally stable person crazy. Give your ears some time from those ear plugs, first time I did that it took like 6-7 months. This time seems quicker but my job is so stressful and kicking my butt, which kicks up my T.
Cmspgran
@Nick47 your description of your last 3 years is a carbon copy of my last 18 months, it's soul destroying. @ErikaS keep us posted on clonazepam progress, have you considered combining with low dose Gabapentin?
N
@Cmspgran it's as if someone is wired up to the national grid and screaming in my ears today. Then I put the radio on and they scream louder over the top of the music.
orenge01
At least I have my peltors, but I don't really want to wear them in public.
Juliane
My peltors give me problems with my neck.
orenge01
@Juliane yeah I wouldn't say they are very comfortable either but I trust them at least to stay on my ears securely, compared to earplugs :/
delta784
Hello brother going through the same mine started after prednisolone injections from my arm before that i had mild tinnitus, now i have severe t, dysacusis, hyperacusis and burning pain in my ears hundreds of floaters i am only 29 whats your problems rn?
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delta784
no its just prednisolone injections from my arm i took after sound trauma i had no hearing loss but they gave me tinnitus, visual snow, reactive t, dysacusis all of them my tinnitus moderate to severe i hear everywhere except shower. i think you can call severe
2049v
@delta784, wtf man are you serious? I was regretting so much because I couldn't get the steroids at all. I was thinking if I had at the right time I would have gotten better already but you're saying that it made yours worse...
delta784
I am serious they ruined my life i am not even joking i took them from my veins intravenous methylprednisolone for my hyperacusis i got scared to catch nox but it was gonna go away eventually now i have vss,dysacusis,h,tinnitus,reactive tinnitus all from two dose injection worst mistake of my life i will never forgive myself i will lose everything that i've own because of this. even my mental health.
HighleyTall
I avoid speaking because it elevates my T. My voice isn't used to speaking anymore, it starts cracking after a conversation of 15' at normal levels. Yesterday I had a 45' conversation one to one and T is blasting so loud it hurts, left side of my head feels numb.
Cmspgran
Where are you up to old friend? I'm struggling at the minute, a variety of other health issues like you and no real tinnitus improvement. How you managing to cope?
Juliane
Sorry for my late reply. And so sorry to hear you are struggling 😔 Any improvements at all?

I am struggling too. I can't believe it's been almost 2 years of this. I am definitely not the same person anymore. Are you planning to take part in Christmassy events? I fear all the noise.

@Cmspgran
Cmspgran
I didn't go my works Christmas party and made excuses, having a really bad flare up right now and medication not working anymore. I honestly thought we'd be sharing success stories now and not the opposite ☹️
Alberte
Hello Nes! Does clonazepam help you?
Nes
Hello! So far I took only two 0.25mg pills. It does help me sleep. It prevents me waking up from the tinnitus. I still wake up but I don't notice the tinnitus so I fall back asleep. The first time I got a very quiet day, but since i also got my period on the same day, I'm not sure which caused which.
Nes
@Alberte also worth noting that I was prescribed clonazepam for my sleep issues and restless legs syndrome/muscle spasms. For those issues, the clonazepam is working perfectly fine
Nes
I'd like to apologise to the moderators who have to correct all my broken english posts. Sorry :sorry:
Believin' Steven
I am still here battling these afflictions. I will not give up. Everyday has pushed me to my limit, but I will continue to exceed them. I pray for everyone and anyone dealing with this, regardless of the difficulties that you face. It's been 5 years with nox and almost 10 with T. I love you all and hope that I can find the love for myself in the midst of tragedy and anguish.
Yellowblue44
Who knew plastic containers can sound like a bomb when opening them. And no I'm not on any drugs or alcohol!
L
I completely agree!! Until recently I had to ask my husband/children to take all the plastic wrappers off the food for me. Now I can just about manage them with ear protection on. How do you explain that to normal people?! 😂
tiniturk
Would increased intake of sugar and caffeine also increase the sound your tinnitus? Had a sweet tooth the last couple of weeks and have noticed a heightened volume. Curious if people had the same.
RunningMan
For some people, yes. Diet doesn't seem to have any effect on mine over the years.
orenge01
Earplugs keep falling out of my ears :/ idk if this is even viable, I might have to try different tip sizes. Kinda nervous to do that though since last time I went one size higher and it felt uncomfortable but might be because I didn't insert it correctly idk. This is annoying.
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orenge01
@weehiru Yeah I've heard of them but, I've also heard people thought they were uncomfortable so I don't know if I will be able to wear them for a long commute. But maybe I should still give them a try, it's at least cheaper than buying custom earplugs from an audiologist.
T
Buy custom-moulded silicon earplugs. I use GN Sleep plugs (Australia). Cost $152/pair. Knocks off ~40dB off ambient sounds. I have them in for most daytime hours.
orenge01
@trevl That's my problem, those are really expensive... Maybe someday but I can't afford that right now. :/
HighleyTall
Waking up with burning ears and going to sleep with even more intens burning ears. It's a constant torture. Really wouldn't mind not waking up.
weehiru
It's been louder for me for a few days now. I'm grateful that the anxiety isn't here towards it anymore - but it's still annoying to sit through and can be hard reminding myself to try and tune it out over and over again. I'm getting there.
delta784
how is your dysacusis now?
sandyknight
You asked me this 12 days ago. What do you expect to change in such a short time frame?
delta784
I am suicidal and impatient thats why even a slightest improve from your side will give me hope
R
Hi, have your symptoms got any better (Hyperacusis/recruitment etc) I've got very similar to you at the moment
BrOKeN_1
Feeling Raw today. Failure to distract or mask on all levels. Just a spike... just a spike. Hope all my friends here are coping well enough. Much Love!
Wouter De Blaere
Yes it can improve a lot. The first months my dysacusis was about over everything. Nowadays it is just shower and church bells. Those sounds are distorted.
delta784
Mine makes whistling sound on top of tv sometimes mostly in shower and ac fans its like morse code beeps or whistling i am only 29 how is yours
Pinhead
New tone today. Probably my 9th or 10th at this point. It's hard to keep track. This one is incredibly loud and in my left ear.
delta784
Can you describe me your dysacusis? I am 29 it beeps over the certain sounds vacuum cleaner shower ac fans and even watching TV sometimes can this improve i need it badly?
delta784
Hows your dysacusis brother
MatthewR
Everything pretty good. Still have annoying tinnitus, and it just seems like I can't hear perfectly. But I am fine. Kinda used to it now
delta784
happy for you brother reactive tinnitus kills me :(
N
Royally depressed. Hyperacusis has improved but reactivity is bad and variable. There are days I cannot listen to the radio at 50db without the tinnitus screaming over the top of it. How has your week been @Cmspgran
daydream
I'm new to the forum sorry if this isn't the right spot to reply, still learning how to navigate it.

I have a similar problem too Nick. My workaround was using an equalizer on my computer. I removed all frequencies higher than 5000 hertz so the offending frequencies wouldn't trigger the sound distortions. I use my computer for listening to all digital audio now as it is now the only viable way.
Cmspgran
Really sorry to hear @Nick47 , I know first hand the mental toll reactivity can have. Mines not great tbh it's so variable, you still trying a mix of treatments? Do you do any quiet hobbies that can try to take some of your mind off?
daydream
I got my reactivity to resolve. High quality fish oil, Magnesium malate and astaxanthin. I think these play a minor role in helping. Protecting my ears religiously and avoiding almost all sounds for a few months worked. had more to say. hit char limit, will make intro post. Does your own voice create the distortions?
N
Hi @ErikaS have you got over your bout of illness yet. My reactivity is still BAD and VARIABLE. How has your condition been over the last week?
ErikaS
Hey @Nick47 sorry I had a very busy week at work and wasn't coming on much. Yes illness is gone and thankfully no significant setback from that. All in all, I'm managing okay and better than 4 weeks ago. I have moments where it's a lot and reactivity is still super sensitive, but it's not nearly as constant.
ErikaS
@Nick47 last weekend I went out to dinner with a friend Saturday night at a medium level noise restaurant and was there for 3ish hours, then Sunday was at my sisters for a small gathering for her husbands birthday. Monday and Tuesday were exacerbated, but rebounded to more tolorable levels. I TRULY believe this is mainly me healing from the ear plugs and the effect they had on my nerves.
ErikaS
@Nick47 also currently doing .25mg during day and .5mg at night just from illness and very hectic work week. I will also say the mindset of keeping myself occupied/distracted very much helps me. Distortions are much quieter and crazy sounds that came on in August have calmed down a lot.
in_LA
Just wondering if anyone could fill me in with anything in research, any new drug companies trying to tackle hearing loss or tinnitus treatments
N
Hi @MAH1970 What's your dosage and strategy with the Gabapentin at the moment? You still going up & down on it?
MAH1970
Hi Nick, I have changed my Gabapantin dose quite a bit over the past couple years. Usually I have been on 300mg but have increased to get lower tinnitus but then it's always no fun having to back down. As well as deal with the drowsy side affects of being on a higher dose. There is always a tolerance issue with this drug as well I have noticed.
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