Shakey Mo's thread of misery

Thanks for the response -- yeah, I'll prob make a doc appt., anyway.

gah fuck you tinnitus

I dunno how many times I can listen to the same 200 bluegrass songs

Shakey I think I said it earlier - I mean, if your battle is to conquer tinnitus, all power to you. I learned to live with mine, and now, even though I'm certain it's louder than it was initially (I stand in front of a very loud drummer on about 1/3 of the nights I spend all year), I never notice it. "Adjust to this as reality and learn to be ok with it" was a winning strategy for me personally, and not one that I'm secretly resentful about or anything - I am cool with a ringing in my right ear. Doesn't bother me any more or cost me a minute of sleep. I got here through a process of "ok, this is reality, no point in being mad that the sky's blue no matter how I feel about blue." I recommend this strategy - I would/will do the same thing if I find myself facing, say, chronic pain, for which I feel tinnitus has prepared me in the nick of time, because my hand has not felt right for a year now.

maybe it's yr left hand :)

(sorry)

"Adjust to this as reality and learn to be ok with it"

yeah that's where I'm at and I'm trying, I swear. feel like I keep getting derailed by taking more tests to find out what it is (this MRI has definitely freaked me out), at this point I'm ready to accept that it's inexplicable and I just have to work through it. maybe it will go away, maybe I will just learn to deal with it, but I feel like that path looked a little clear/easier to me without worrying about some weird lesion on my brain nahmean

xp

clearER

like okay if we've exhausted all explanations for it, then the path forward is just management and goddammit I am strong enough that I will do that

and you will. obv extra "is there something physically wrong with my brain" stuff, that is a stressor you do not need. but I can seriously tell you: you will get to a point (quicker than you think!) where it won't bug you any more than, say, the callous that most of us form on our middle finger from using a pen. seriously that level of "I don't even notice it."

thx bro

The MRI is normal - there are NO tumors or masses. The area in question appears to be part of a normal structure called "choroid plexus" (this is the tissue that produces spinal fluid).

*whew*

It's not a tumor!

lol

Phew! I wasn't sure if you'd laugh or hate me for that.

Posey's been around slightly longer, yeah?

lol wrong thread

she has been around a little longer than late September, yeah

the saga continues urrgh

I can only echo aero and say you do honestly get used to it. in fairness I guess I've had a lot more time to do so, having had this since childhood but yeah mines worse than ever as well AND I have hearing loss and yet most times I don't find it bothersome. there are passing moments I feel like I have a tin head full of angry bees but its never constant. hang in there x

it's so weird to have gone through all these tests/medical rigamorole and come out the other side pretty much back where I started. there's been no change in my tinnitus, I still have these weird physical sensations in my ear associated with it, and I have no explanation... sort of feel like getting stoned, wonder if I'm going to regret this...

you'll have to tell us!

i wish we could at least record these sounds. i don't know, maybe then we could do a study of the different frequencies, volume levels and textures. we could do some sampling. we could play them through our stereos and thus have, at least for a while, our friends and family members understand, maaan.

i wish mine were in the key of C#, at least.

wondering if anyone here has read this:

http://www.zonebooks.org/images/books/SCHW_MAK.jpeg

i'm thinking of getting it. if i'm going to live with the phenomenon, might as well get some erudition out of it.

the grind continues.... so up and down from day to day. sometimes it's like it's not bothering me and then it comes back with a vengeance. really messes with my emotional state.

it will pass! those physical sensations in my experience are a side-effect of focusing real hard on your EAR - like, prior to this, you probably never asked yourself: "how does my ear feel?" now your focus in on your ears a lot, and there's a sound-prompt, so you feel like your perception is related to the sound. lol fuck the earth, just typing this I'm suddenly hyper-conscious of how my ear feels

physical sensations in my experience are a side-effect of focusing real hard on your EAR

it's entirely possible, given that the ENT + MRIs didn't show anything. I dunno what to think anymore really. it is weird how much it is tied to my mental state - if I'm not thinking about it, it's not so bad! but then I think about it, and it gets bad.

I wonder what they will have to tell me at UCSF. still two weeks away unfortunately :(

*sigh*

some days I think I'm getting better and then I think I'm just kidding myself

the inability to relax is really the worst thing, I just require constant activity

very much looking forward to a day I can just sit in silence

this is why you gotta focus on the relaxing and not on the ears. it is hard I know. do you play? playing piano basically saved my life.

I'm playing acoustic gtr around the house for like an hour each day, it's a pretty good distraction

time for my daily affirmations

fake it til you make it Shakey Mo you will get there

Lay in bed this mornin and noticed mine for the first time in a while. I then had a curious realisation: I spend a lot of time "in my head", like really thinking about stuff, daydreaming, silently talking to myself, whatever you wanna name it.

And when I'm doing that Im not noticing the ringing. I suddenly wondered if that was my coping mechanism and thus why Ive been so inner-worldy for much of my life!

music in my mental landscape helps a lot too

I usually have songs running through my head (pretty much always have ever since I was a child). and yeah if I'm focusing intently on doing a particular task I don't really notice it... but it's exhausting. I feel like time is the only thing on my side, but it feels like so long already (3 months!)

trying to think of each day as being one more day closer to being better

Focusing on a task is the oldest and best way to push feelings and sensations to the back of the line. Even if the task is just, like, 1200-piece jigsaw puzzles or knitting or w/e, it could be meditative and a great tool.

tiiiiiiiime
is on my side
yes it is

in the meantime today is sucking

my mom got me this. she is trying to help, in her way. what can it hurt I guess.

okay so I scrolled through that whole site, what the hell is it exactly?

it's... a book?

maybe you use it to smack yourself in the face, distracting yourself from your tinnitus?

it's a magical system in book form!

yeah I know

that's my mom for ya

aw man I was hoping it was some kinda herbal enema system or something, lol

so many testimonials though, shakey. i mean

I want to believe

YOU WON'T BELIEVE THE RESULTS

Aw, sweet of your mom to dig up this stuff for you Shakey. The link feels a little iffy, but I personally need to find something -anything- that even pretends to alleviate the symptoms. The ENT was very much "there's nothing to be done" about it, but I'd like to at least drink a daily herbal tea, or wear earmuffs to bed, or something, so that I can feel a bit more like an agent in all this.

Have been sick at home this week with flu-like symptoms and have noticed the tinnitus more than ever. I'm hoping some of the apparent increase in volume is due to the flu somehow, and will abate somewhat when I get better.

I'm feeling a bit sorry for myself, tbh.

aw man I feel you. I am very much in the same boat re: "nothing to be done", it's very frustrating. it's such an endurance test. otoh every single person I have talked to who's gone through this says "you get used to it"/"it goes away", without exception. so I try to take some daily solace in that.