Suicidal

I agree that volume (and to a degree fluctuations) is everything. I would be able to deal with mild stable tinnitus much better than moderate, hourly fluctuating tinnitus. (Guessing anyway, I have no experience with mild tinnitus).

Also, I do have a history of mental illness but I was stable and doing fine. I got tinnitus and it plummeted. Definitely a result of the tinnitus, not the other way around

 

And people, including people who have mild tinnitus, and even doctors and audiologists have to understand that there are varying degrees of tinnitus, as well as pain. And that is why the classification of the severity of tinnitus is: mild, moderate, severe, very severe and catastrophic.

 

Genuine question: where do these classifications come from, and how are they measured?

 

The Academic World™ classifies it as they see fit.

 

Volume and number of tones is everything. Plus, how those tones sound. Lack of fluctuation is also hell.
Some people say to just 'listen' to your tinnitus and I think that is insane. Even 10 seconds makes me want to off myself with something.

There's at least 3 tones. Three because three different ones are extremely loud and I can distinguish a difference between them.

I am supposed to believe that some researcher will come up with some treatment to 'cure' this?!? I hate every day and it's even loud when I wake up.

 

So... not a real classification system then? I see it on this forum all the time...

I thought it was a bit odd that an entirely subjective condition is being measured objectively on a scale. (And what medical profession would give someone the classification 'catastrophic'?)

I mean, what about people whose tinnitus is quieter but they have multiple tones? Are they higher up the scale, or lower?

What about if the tone of the tinnitus is quieter, but less 'mask-able'?

What about people with fluctuating tinnitus? Do we just move about on the scale every day, or do we get a higher rating because of the fluctuations? (Or a lower rating, because sometimes it's quieter)

If my tinnitus is higher than yours on the scale, but you are suicidal because of yours, is mine still worse? Should you shut up about yours because mine trumps yours? Are people who are 'mild' or 'moderate' allowed to belong here? What about 'severe'? I mean, if mine's 'catastrophic', why are you complaining about 'severe'?

 

Agree 100% with this, often thought about it when people have LDL tests done. All they do is present a snapshot on a scale of being from in unbearable pain to being in the 'recovered enough to deal with some of life' end of the scale. Depending on where you were on that scale your LDL now becomes your official score according to your doctor.

I could get an LDL test score of 90 today after a good period of recovery and then setback tomorrow (due to the LDL test) and then get an LDL of 20 (if I could even make it back to a doctor). Crazy test anyway, set me back so bad when I had it done, never again.

 

In addition, many patients with hyperacusis report pain at volume levels lower than their LDLs according to Hyperacusis Research. LDLs don't factor in the type of sound which IMO seems as significant a factor as loudness in triggering hyperacusis symptoms. So I think it's a very crude measurement and isn't really valuable for analysing how you cope with sounds in the real world.

 

I don't think I've ever been this depressed. Life seems absolutely meaningless. Nothing to wait for, nothing to enjoy, no hope whatsoever. Surviving, but for what.
I was depressed and severely anxious before, but then at least I could escape into sleep, now this is a constant waking nightmare.

 

Hi @Kriszti, I also have some moments that all is for naught. But if it makes you feel any better, current trials are underway with DBS to fix tinnitus in the same way that it helps people with Parkinson's (some say they don't even notice it). It has already helped patients tremendously (like in the Cheung study) and maybe in just a few years we could be fully enjoying our lives again. If that isn't enough, FX-322 and Thanos' RL-81 would surely make our lives better. Hope is on the horizon.

 

I wish I could give you a hug, @Kriszti or do something to help you out. Your message really gets to me, I feel the same way a lot of the time. I'm struggling to find meaning in all this. Life was pretty bad even before I got T, now it's difficult to imagine a future at all. Just know that you have my sympathies.

 

I was doing more or less okay with this but it’s been so long and I still feel horrible. New nerve pain has just been the cherry on top. Not sure why my body is failing me so much at my age.

 

Thank you guys. This really is one of the saddest place on the internet with the nicest, kindest people around.

I just feel so low. I know that there are treatments in the pipeline, but can't stop thinking about how I screwed up most parts of my life, because I thought that I had the time to mend it.

Now I'm over 30, alone, jobless, childless, flunking out of my education which I struggled so much with and so much for. There are time sensitive things which I won't be able to achieve even if I happen to make it out of this state.

And I'm just so tired, sleep deprivation just sucks the remnants of my willingness to not give up out of me.

I'm really sorry for venting here.

 

To bethadtr:

I call that two women interviewers on a morning TV show asked an ENT doctor why they heard changing tones. He replied that often such changing tones result from the brain's "recalibration", or it's neuroplastic effort to reach the correct level of reception. He implied that this was a healing method, just as a wound often itches as the flesh is growing over.

Harper's magazine in their lead article "Be Your Own Best Doctor" had an ENT doctor making the same observation when a woman patient reported Meniere-like symptoms.
My muscle massage therapist told me that he failed to use sound protection when he learned to fly, and the recurrent high pitched engine sound gave him tinnitus. You would assume that such resultant tissue damage would make tinnitus permanent, but he said that after 7 years it actually went away (and Medical Science still has no explanation).

Every numerous ENT doctor /audiologist I have seen over the last 6.5 years has mentioned such cases of sudden, bafflingly mysterious discontinuation of tinnitus.

 

First I'm thinking is that the hearing loss must have been evened out in some way, thus not giving the brain the need to fill in a gap in hearing. So actually, more hearing loss to get rid of tinnitus. You buy it?

 

Thanks for sharing that, Dave.

 

I had the same thing. Nerve pain everywhere, but particularly in my mouth, hands, feet, arms and legs. It went away after a couple of months. I *think* it was stress related.

 

There's nothing wrong with venting, there's a lot of times I've wanted to cry out in this forum, but I decided not to because I was afraid people would think I was being a crybaby. I just wanted to express how much I feel your pain. I'm in the same situation. Jobless, childless, alone, in my mid-30's and living off disability pension. I also had to break off my education because of tinnitus because I am so sleep deprived I can't get up in the morning. Your message actually made me shed a few tears. I really understand your situation. I wanted to send you a private message, but you seem to have turned off that option. But feel free to write me if you want more support.

I really wish that there was more I could do. I just want to help everybody. No one deserves this.

 

Honestly, this could be the case as I've been hearing random tones at night and my tinnitus is generally lower in the morning. Surprisingly, these recalibration sounds are basically what started my tinnitus. I kept getting fleeting tinnitus and eventually I noticed it had left a static sound in the right ear. I feel like this sound has been trending downwards although hard to be sure. Hoping I'll get another fleeting tinnitus episode and it'll just go back to the hell from which it came.

Last night was especially weird though. I couldn't tell if I was dreaming or I was awake, maybe I was half awake, but I kept getting these fluctuations in my right ear which would go from no tinnitus and then back to the static sound. It was the strangest thing.

Also, I've read a lot of stories here too where after years it either just went away or there was some temporary recallibration sound and the tinnitus basically disappeared. There is always hope so don't give it up guys.

 

I think mine is unrelated to my ear stuff as I have other health issues. Just so frustrating to deal with on top of everything. Did you ever take Gapapentin or Lyrica or anything like that? I’m in a lot of pain but I’m so worried about making my tinnitus worse.

 

I had the same dilemma as you -- I was in so much pain, with constant electric shocks all over, but had to be careful what to take because of my ears.

I took Amitriptyline, which is prescribed for nerve pain and is also sometimes prescribed for Tinnitus funnily enough. Some people find that it actually lowers their Tinnitus. I didn't notice a difference personally, but it stopped the nerve pain.

 

I’m so sorry nerve stuff is so scary! I have Gabapentin that I’m scared to take how long did it take for you to notice effects with the amitriptyline? Did you eventually stop taking it?

 

Me too! I take it for 2-3 days and then stop. Terrified to be depended on it.
But it helps anxiety and ear pain.

 

I don't have noxacusis or trigeminal neuralgia, but I recently tried Gabapentin, 300 mg daily for ~5 weeks. I didn't find it to be a particularly challenging drug. It definitely made me loopier, but it felt like a reasonable thing to try. You probably know this, but I would recommend gabapentin over pregabalin, since gabapentin is far easier to ramp up and down.

EDIT: I am about halfway through coming off of it. If I experience any obvious ear symptoms worsening, I will update this.

 

Thank you, but I seem to be OK now (touch wood ).

I noticed the Amitriptyline helping immediately -- the pain started coming and going instead of being constant, and after a month on it, the pain stopped completely. I took it for about 9 months then decided to come off of it, and have had no pain since. Been off it for about 4 months now.

It's not addictive and you can come off of it easily, but it is a sedative so it needs to be taken before bed.

Had a quick look at Gabapentin because I've never taken it -- it seems to be safe enough? You will always get the odd negative report with any drug because everyone reacts to drugs differently, but it does not seem to be a known offender for negatively affecting Tinnitus... In fact, some say it helps their Tinnitus.

It looks like the biggest complaint is that it's similar to a benzo -- very addictive and therefore difficult to come off of.

Perhaps you could speak with your Doctor about Amitriptyline and see if s/he thinks that might be suitable instead?

 

I see, well this is very helpful to know, thank you! I asked my doctor about amitriptyline and she said they prefer to prescribe Gabapentin vs Amitriptyline strictly for nerve stuff because the Amitriptyline is technically an anti depressant even if they don’t use it as an AD but it has more side effects because of that? IDK if I believe that because it seems like Amitriptyline is often prescribed as a lighter option as compared to Gabapentin and Lyrica but who knows.

 

Hi @acute,
How are you keeping?
Was thinking of you.

 

It's funny, because my Doctor said the opposite -- I swear it depends on which one you talk to sometimes!

Yeah, Amitriptyline is prescribed at very low doses for nerve pain (I was on 10mg), and it needs to be a much higher dose to be used as an AD (from 50mg to 200mg I believe). It does list some side effects -- I personally didn't experience any, but everyone is different.

It's so difficult to decide what drugs are safe to take when you have tinnitus, but I think as long as you stay away from the serious offenders like the SSRIs, you'll be fine. Let us know how you get on -- I've got my fingers crossed for you

 

Interesting perspective from an audiologist when asked why they don’t test hearing past 8 kHz. Apparently it doesn’t matter because there’s nothing they can do about it and it doesn’t make them money. Who is surprised.

 

Ahhh yeah very true! I tried the Gabapentin and it made me feel kinda feverish and I couldn’t fall sleep so I got scared lol but I might give it another go.