People Often Refer to Their Tinnitus Volume as X/10. How Do They Get the X?

[Cor]

Hey all, in the retigabine thread people often refer to their volume as X/10. I wonder how people get to their own X? 6 months ago I would have called my volume 9/10. It felt terrible. I was a wreck.

Now, my volume is on average much higher, and what was then a 9/10, is now maybe a 3/10. Im not sure if there is an end in sight with this increase in volume.

It seems to be a moving target, which can not be accurately used to track volume over time.

 

[Telis]

Yeah it's all subjective so no one knows what the other person is describing. I'm having a tough time with this as I'm not sure what to expect out of myself in the future. For me, my T started as a 1 (in my mind), I could mask with anything. It then seemed to be around a 5 or 6, loud and could hear it on and off depending on what i was doing (I was still functional, going out with friends socializing etc). I now consider mine a 9 or 10 as I can't mask it and it and it is always there (now with lots of different noises), not just on my mind, and it is painfully loud cutting into every thought I have and inflicting physical pain on my ears/head and has disabled me to the point where I can barely function, I'm now almost totally isolated. Maybe others would call mine a 5-6 and be able to go about there day, I have no idea. It seems so far fetched that this could be barable to someone else, but like I say, I have no idea.

On the other hand, I have talked to people and they say that they have 10 out of 10 tinnitus and it is livable and that they can relate. I don't know if they can or not. Their T could be what I consider a to be 2, I don't know. Maybe mine is unbearable for any human being alive, not sure, I will never know.

I don't know what is realistic, and this is very frustrating for me. It's been 14 months and I can barely make it through the day. Why is this, I don't know. I've been stronger and less fragile than 99% of people before T in regards to just about anything. Maybe it's just that I cant handle it as well as others and I am a underachiever when it comes to doing this, this is maybe the one thing that most are better at handling than I, OR maybe my T is unbearable for anybody, no idea at all. Totally lost when it comes to what I have and what others have.

For others in my life it is confusing as well. I can hardly make it through the day and people wonder why...after all, lots of people function and live with T, they can't figure out what is wrong with me. It's as if they think I'm being overdramtic, have a metal disorder (and not T). I've been told I am feeling sorry for myself, man up, threatened to be shipped to a mental hospital, enough is enough, lots of people have T and they are just fine etc etc. I have NEVER been this humiliated in my life, ever. Now I try and hide my disability, never tell people what is really happening, Im at a point now (even with close people in my life) I would rather remain proud (suffer on my own) than to be rediculed by them constantly and looked at like I'm some kind of moron, because after all T is T! Lots of people have it bad and live with it!!Do they? I don't know....No one knows!! What mind F@&k this is.

 

[Steve]

I've been told I am feeling sorry for myself, man up, threatened to be shipped to a mental hospital, enough is enough, lots of people have T and they are just fine etc etc.

That could actually be a big part of it for you. You're being told that you are no good at handling it rather than having a little understanding and that can easily send you into a personal spiral, you have to keep things inside and they can really build up the anger and frustration, which will male you a lot worse.

I've had T for a good while and I've been in a bad place with it before more than once. I honestly don't care now what other people think, whereas I used to keep it inside a lot. I've been ridiculed by some in the past about tinnitus but now I won't take any kind of trivialising about it and will confront them. But hey, that's me and I've been at it longer, you are where you are right now and it doesn't sound good. It's difficult to give advice as every person and their circumstances are different.

Getting back on topic..... @Cor

It's a bit of a notional thing to ask the volume, really down to the individuals own idea, probably needs to have some clarification on what each level represents. The important thing is that the volume is a baseline, each person who takes part should be able to say that they are at a level which is relative to that first rating.

There are questionnaires that you can use also but they take a bit more filling in. There is also the use of audio software but that needs to be controlled fully to be valid (needs to be the same equipment used each time and ideally operated by somebody else).