Shakey Mo's thread of misery

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.

gah and now wife is super-sick (and super-close to delivery) gotta leave work to take kid to see Snow White so wife can get some rest. fuck. I cannot catch a goddamn break.

Hope she feels better soon (to extent possible, of course, if on the verge of delivery). Hang in there Shakey, we're rooting for you.

lol @ the LARGE PRINT of this book quel surprise

I have never tried so hard not to give a shit about something

LOL I will steal that. Super-OTM.

Had a very bad night last night. Very bad. Sinus infection has increased the volume, and this fed right into a nice little spiral of depressive thoughts I'd been having in past days and well... suffice it to say I was failing miserably at not giving a shit.

Spent today watching comedy youtubes with my son (who's also fighting a flu), Three Stooges, Marx Bros, Andy Kaufman, and then a bunch of music ones. Everything was funny and beautiful and I felt grateful that there is indeed still a respite, that the ringing doesn't ruin everything, and that there are truly far worse things to be afflicted by.

This is going to be hard, but we can handle it.

Oh, and I'm going to try leaving music or TV on tonight when I go to bed. I suppose when I get my tinnitus black belt I'll be able to do without such aids, but right now I'm glad to reach for anything that helps.

Best wishes to you both, I really know how hard it can be to cope with and can only re-echo myself and Aero and say it really will get better with time - it may not go away but your brain will adjust. It sucks massively that all we can do is "cope" with this insidious malady rather than cure it, that said. If I knew for a second the posited ear surgery I need would cure my tinnitus I'dve done it in a flash months ago, but the risks sheet suggested it could get worse! So, I'm reluctant to meddle.

Thanks Trayce, that's helpful to hear. Very helpful. And last night went better than the one before.

would be cool if this wasn't accompanied by stress/back pain

altho feel like I've been dealing marginally better with it over the last few days. I dunno if it's getting fainter or if I've just been trying more successfully to ignore it

No sleep tonight for me. It's just really loud tonight; has been this whole week. It's only in the last week or so that the volume reached this can't-fall-asleep level, so I'm really struggling trying to adjust, trying not to panic. This thread, though, Shakey, I must say, is a great help. It's a balm to my anxious soul.

I've been dealing with sinusitis the past couple of weeks so I went to my doctor today and, lo and behold, he found fluid in my left ear (where the tinnitus is). I was thrilled to hear that, because it suggests that maybe, just maybe, this elevated volume is a product of the increased pressure... and that with antibiotics it will subside.... Please let it be so.

I had such a great attitude all of today... wish it carried over into the night-time more!

I've been taking trazadone+ambien to get to sleep for the past 3 months. sucks and I hate it but otherwise I just don't fall asleep.

you need a prescription for those, obviously (and these drugs affect different people differently...)

fluid in the year is treatable, which is good news, so hopefully dealing with that will ease yr symptoms

thanks ... we shall see!

ok so today i got hooked up with some chinese medicinal tea, made from a variety of herbs based on my 'pulse diagnosis' (this is all very new for me). i also started researching some meditation/mindfulness trainings nearby. i do think i want to 'befriend' tinnitus as much as possible.

on the western front: i did book an appointment with a doctor who, i was told, is new england's only tinnitus specialist. only problem is the earliest opening she had was january 2014. meantime, i have the ambien on standby, but i've allowed myself a bit of leeway this week in terms of sleep: told folks at work i might just take the rest of the week to sort all of this out, and get my immune system strong again. i feel extremely fortunate that i'm able to do that.

January 2014?! Best healthcare in the world...

i know, right? this is why, in the meantime, i'm quite willing to drink this viscous, nearly black, bitter-as-fuck qigong potion.

(btw a coworker of mine suffered with migraines for years until she went to this herbalist... i gotta temper the expectations though!)

Shakey, wondering how your wife is doing (and you!). How far is she supposed to be from delivery?

Things that have been helping me sleep, at least a few hours per night, in the last few days:

#1. Relax around the tinnitus more; try "to make it my friend" (odd as that sounds). Just trying to accept it rather than fight it. (Note: this is very much a work in progress. I go through ups and downs, but I like to think the general overall direction is slowly, subtly, up).

#2. Not try too hard to sleep. If the ringing's feeling very loud when I close my eyes, and it's keeping me up, I'll sit up in bed, turn on the lights, and read a book or watch a slow, ponderous movie or something. Of course, background music or noise of some sort (e.g. vaporizer) helps.

#3. Drink valerian tea.

#4. Take some whiffs of some aromatic oil blend (no idea what it is except it's called Sleepy Time and I found it at Whole Foods), just to get some pleasant other sensory input. I think to do this properly you're meant to set up an infuser of some sort, but I'm doing this lo-fi and dabbing some drops on a bandanna, which I then clutch like Linus).

It's funny, I've never been particularly New Agey (in fact am one of those more than glad to poke fun), but tinnitus has me up against a wall and I'm willing to try anything, Cartesian intellectual pride be damned!).

yeah what's news with Babby Mo

Babby is doing good - it's only been a week, but so far he's much mellower than I remember babby #1 being (ie, will sleep for 4 hours at a stretch if we let him, feeds well, etc.)

had my appt with UCSF yesterday, which was good. they didn't give me a magic bullet or anything but talked to me about what is likely going on and what I am in for - basically aiding the habituation process. I am already doing a lot of the things they recommend, but I may check in with one of their psychologists to help with relaxation techniques etc. my doc went into detail about how tinnitus taps into the limbic system and perpetuates itself even in the absence of external stimuli on the auditory nerve etc. which was very interesting. I don't have any hearing loss at this stage - my tinnitus is around the 9000 Hz range (I haven't looked up what note on the scale this is yet, but high C is 4000 Hz iirc?), but I may be in for losing this frequency in my left ear. which I don't really care about, frankly, since it's so far on the high end it's not really in the range in which useful information is communicated to the ear. in the meantime my tinnitus is basically unchanged, just trying to ignore it, go about my daily tasks. and uh get over this cold I have. finding relaxing activities that distract me are still a challenge, I do really miss being able to sit in silence or walk in nature without noticing this goddamn sound but what can I do... it's a process. evidently a potentially long one.

yeah, the highest key on a piano is a little above 4000 Hz i believe