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DamagedJoe
Update: Something new. my lowpitch tone on my bad left ear is now louder than the high pitch one. I don't know why. It's now something like 980 hz. I wonder how i can habituate to this, if its fluctuating all the time. This is new. Does this mean, that im improving?
S
You're only a couple of months in if I remember, yeah? It does fluctuate for the first few months to a year, try not to read too much in to each and every change, it will almost certainly settle down.

I had a regular eee turn to an extremely loud siren & screams that's gone down to a gentle buzzing and hoovering noise over 4.5 months. Had physical vibration, fluttering, fleeting squeals, and all sorts along the way.
DamagedJoe
Thanks for your comment. if i understand correctly, you have also had your T since october 2024.

I honestly don't notice that "something is settling down". I envy your confidence. I'm happy about small changes. Unfortunately, I lack the imagination to believe that it can still improve. I've reached a point where I'm fed up with it. I'm going to get Noisers soon.
Nes
Trying to stop wearing earmuffs in my home. The psychological aspect is hard to overcome ! On a good note, my reactive tinnitus is a bit less reactive.
S
Try sticking some cotton wool in your ears, it's a little bit of defence without too much rebound when you take it out, plus it's a fairly comforting feeling.

But I'd still wear the muffs in the kitchen my self, better safe than sorry!
Nes
@Scruffiey thank you very much for the advice. Today I spent most of my day without my ear muffs. The cotton lets just enough sound so I can habituate to everyday noises without too much stress and pain
S
@Nes Glad it's working out for you! :) Before I knew what I had was hyperacusis (I thought the nasal steroid had just cleared my Eustachian's out and I just wasn't used to how good my hearing was...) I'd started doing it around the house and I attribute it to my natural recovery while keeping my tinnitus in check.
adpolandam
Yesterday was my "good day". From the morning riding on 3 boiling kettles plus star wars in my ears
vilebubbles
I have star wars too and headache and pressure. Plus a high pitched eeeee (this one comes and goes but alien ones stay). I'm glad you had a good morning.
ellees
hello, have you tried any other medication since getting T? what has been your experience like with taking other meds or vaccines?
just1morething
Something is still haywire in my left ear. I'm getting a CT scan of the temporal bone done. I wanted a CT scan done of my TMJ but am unable to find a Dr. to order one.
B
I just saw the neurologist today. He is now referring me to a surgeon and to an EMG test.
D
What are your issues? What are they looking for with that? I've also been having muscle twitches all over the body for many years, and the last 2 it also hit my ears with MEM/spasms/fluttering, so maybe a visit to neurologist or an EMG would be worth it.
B
@DimLeb I have multiple herniated discs and bone spurs in my neck causing moderate to severe spinal stenosis. About 15 months ago, I started to get constant twitching and vibrating on the left side of my body along with MEM with my left ear. Was finally referred to a neurologist and then an MRI and this is what was found.
B
@DimLeb I should add that I also have a history of neck pain and burning pain in my hands, arms and shoulders. The pain has been off and on throughout the last 5 to 10 years. The twitching and vibrating has been there constantly since it started in December of 2023. The MEM comes and goes. My left ear fluttered some yesterday but not today.
Sodlin
Been a really hard week with a loud spike that seems like it came after the change of wheelbearing on my car. Im also very tensed and i feel abit more sensitive to sounds. Im also VERY tired. on saturday its childbirthday...... Hate those birthdays with 7 hours of intense screaming children running around me......
Juliane
Cancel the birthday. With tinnitus there are things we cannot do anymore
Sodlin
Went to the birthday and it went suprisingly good! :)
HighleyTall
Had to raise my voice for 2 sentences at the glass screened bank counter. Now i'm left with a painfull left ear.
ErikaS
Haven't posted in a while but want to share this random and unfortunate effect of what I think is from licorice root extract. Started taking a supplement with this in it (dose is up to 350mg) with some other things to help treat gastritis. Ever since starting the supplement four days ago, tinnitus, reactivity, and inner ear vibrations have notably worsened…
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S
I can't imagine it wouldn't just be temporary or else we'd probably have heard of it causing tinnitus before!

Shame though... I've got a big bag of licorice I got at Christmas and now I can't risk eating it.
MindOverMatter
Sorry to hear this @ErikaS That being said, taking a supplement like this for just a few days, which in itself is harmless, won't leave you with a lasting spike. It might stick around for some times, at the worst, but I,m sure it will calm down again.
ErikaS
Thank you for the encouragement @MindOverMatter and @Scruffiey .. ears are still very exacerbated. They were somewhat heightened before this just due to life and a travel a little over a month ago, but notably spiked in all ways this week and it aligned with this supplement. Hoping it doesn't take too long to stabilize.
vilebubbles
Hope you're doing ok.
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AvidReader
Wait, so they're just expecting you to come off them without more tapering?!
vilebubbles
Yes :/
AvidReader
That is not good, I don't know why medical personnel don't seem to be aware of the tinnitus risks of some drugs. Standard antidepressants made mine spike, so did the antibiotics I had to take. Good news is, the spikes weren't permanent. Hope it is the same for you.
vilebubbles
Went to neurotologist. He said he can't help me. T is going crazy from car ride and talking, running out of benzos for taper. I truly feel like it's over for me.
Joshua Macleod
No, I had the same response from neurology, audiology etc.

My favourite bit of advice was to not think about it. You can tell that that person never suffered with T, let alone H or N.
Joshua Macleod
I'm sorry I can't give you amazing advice (I don't even know if exposure is a good idea, or whether silence is best...), but please hang on for symptoms to improve. Message me on here as and when you need; sorry if I take a while to get back to you.
HighleyTall
Because I couldn't handle the pain and burning sensations I took Tramadol. Of course this doesn't decrease tinnitus but it's been 2 days now and the burning isn't intense as usual. H is also still very bad.
Sammy0225
Haven't been here in months! Doing better going on small rd trips listening to music again going out again.
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MindOverMatter
Good to hear! Thats the way forward with reactive t @Sammy0225 Once you are in control of your own reaction pattern to it, things will slowly start to get a lot more manageable in regards to its reactive nature.
delta784
May i ask what caused your issues at first place Sammy thank you.
ErikaS
Only seeing this now- so so happy for you Sammy! I myself have made QOL improvements I never thought I would. Still deal with flares here and there, but my mental game is so much better than when we were in the trenches over 2 years ago.
PennyCat
Due to my mental health, I have to start taking the mood stabilizer lamictal/lamotrigine. I'm terrified that it's going to make my T worse. I have a friend who takes it and also has T and said it didn't make it worse, so that's good I guess.
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PennyCat
@henkess I've also seen incidents where it has helped people's T, and others where it has no positive or negative impact on it. It really is just individual. Hoping it at least doesn't worsen mine. I don't have much of a choice as I need to take this med.
PennyCat
@TheCapybara Thanks, I hope you are too! My T is ever present and still bothers me sometimes. Most of the time it's just a nuisance that I try not to think about but I do have moments where it brings me anxiety. An ongoing battle as I'm sure you know!! Hope you're hanging in there.
henkess
I tried paraflex its a muscle relaxant no drug or anything. Quite harmless. And it lowers my Tinnitus a little.
vilebubbles
I don't think I can do this :(
S
You can, I know you're scared but you'll make it through... it feels horrible and intrusive but it's not an actual threat even if your entire being is trying to tell you otherwise, it will get better.

Try and do something to distract (I bought a block of modelling clay and took up sculpting) & to de-stress, even if it's just for 30 seconds with a breathing exercise, we've all got to start somewhere!
DamagedJoe
I left my band today. I had to give up another thing that I loved. Everyone was outraged and no one could understand it. After all, nobody had T. Only me. T takes everything from you. Until there's nothing left of you. Just like listening to music, or sitting in silence. Or sleep.
S
Yeah, how dare you prioritise your wellbeing, health, and hearing over the band? That's messed up... I can't see how an unsupportive group would have worked had you progressed further together and by the sounds of it, some of them might eventually be joining you on this journey.

It does take a lot from us, it's cruel, but, I do think you will make some kind of peace with it within your self imposed time frame.
vilebubbles
Hi! You seem like you're improved somewhat. What was your T and nox like at its worst?
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vilebubbles
Also, about how long was it from debilitating to tolerable?
Joshua Macleod
I'm really sorry to hear you're going through it, @vilebubbles. It is a set of symptoms that people struggle to sympathise with unless they too have suffered.
Joshua Macleod
It was debilitating, for me, for maybe 6-9 months. This doesn't mean yours will be for as long, nor does it mean if you suffer for longer that it won't improve. I tried everything (except medication) to improve, and have subsequently been able to reintroduce many things back into my life (e.g. sitting in a car, attending meetings).
just1morething
I wonder if an infected tooth root can cause tinnitus? I just got my left lower molar extracted after a panoramic dental X-ray showed some issues with at least 2 of my teeth.
DamagedJoe
I made a decision today with a heavy heart. I'm not going to live like this. F*** you "god", or "universe" or whatever it is that has thrown us here into this torturous existence. I'm going to try to last a year, maybe I'll make it to 1.5. If it's not better then, I'm going to kil this useless scrap heap of a body.
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B
I started waking up at night with panic attacks and developed depression. I've had a lot of stress in my life in recent years which may be the reason for the panic attacks and depression, but I can't figure out where the tinnitus came from. At least four doctors have been of zero help. Like I said, I still have the ringing, but I simply don't notice it as much.
B
I came across something called Zenotone and tried to post about it yesterday, but for some reason it's not showing. I wasn't trying to advertise the stuff, but wan't to know if anyone here had heard about it or tried it. I posted a link to the website for information. I think it's about $100 for three months supply, which I'd pay $1,000 if it actually worked.
B
Are we not allowed to post links here? Maybe that's why it doesn't show up. I know most of the stuff advertised for tinnitus is BS, but this "seemed" to be more legitimate. (I had to break my post into four parts because of the 420 character limit. WOW! WHY?!)
Artemis2K
Last year I tried launching a Kickstarter, and then a hurricane hit my home and things derailed from there. Now that my business model has changed, I might actually get results. I'm so relieved.
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