Shakey Mo's thread of misery

good luck, Shakey!

on a different note - bluegrass does not seem to be very popular on filesharing sites, unfortunately. if anybody has a bunch of shit they could, say, dropbox to me, that would be much appreciated

talked to my ENT again...

sinus symptoms – mild inflammation, likely not the cause of this type of tinnitus but who knows. Recommends Flonase (once or twice a day) + Oceanspray (throughout the day) which should reduce inflammation after a month.
MRI results – possible mass is not in an area related to hearing on the left side. Left side does not show any growths or damage. Neurologist input recommended in case there is anything being missed or there is some underlying problem. Main issue will be if mass is growing, which will require a follow-up in 6 mos. Is possible mass, if it’s there at all, has been there since birth or for years. If mass requires treatment, options are surgery and radiation, both of which require serious consideration of pros/cons.
Tinnitus in general – in cases where no direct cause is discernible, resolution varies widely. previous patient had it for roughly a year, over the course of which it diminished and faded, although was eventually accompanied by hearing loss. Follow-up hearing test recommended in 3-6 months

so yeah. off to the radiologist again in an hour or so

Good luck, bro.

Bee Gees today

god second MRI was so annoying, had to wait an hour in the waiting room. on the plus side, when it was done the radiologist said he'd taken the scan from three different angles and didn't see anything.

I'm sorry there's no magic wand I could wave nor an obvious & treatable physical issue your doctors could take care of for you.

But at least you have the Bee Gees.

I am trying very hard to maintain a positive attitude about the lack of a diagnosable cause, and that if I can just learn to cope with this it will get better/go away. trying to focus on the excitement of new babby, rather than my bullshit, even tho I am reminded of it every second of every day

new babby is a good thing to focus on

I'm gonna get through this goddammit

you can do it

the Bee Gees and Dolly and bluegrass will help you! and new babby!

I don't mean to hijack this thread -- much love to you, Shakey, and I hope you find comfort -- but lately I have been getting an irregular pulse (for lack of a better word) in my right ear when I have a couple of drinks. Not every time I drink, but only when I drink. Doesn't seem connected to my heartbeat. Googling suggests it might be tinnitus or similar. Anyone ever experience anything like this?

could be - tinnitus presents in a pretty wide spectrum, so who knows

in other news: another day with this bullshit! the usual 5 hours of heavy sleep followed by a couple hours of tossing and turning and weird dreams. trying to keep a lid on anxiety over this MRI thing. I sort of want this period of tests and questions to just be over so I can just focus on dealing with/enduring the tinnitus.

well not sort of, I definitely want it to be over

good luck, Shakey.
- a fellow sufferer

@jaymc: Pulsatile tinnitus can be a warning sign of bad things (increased intracranial pressure, abnormal blood vessels -- but in those cases it usually syncs with the pulse.

Weird auditory experiences are not rare among the wider spectrum of weird sensory experiences. As long as you're not losing hearing or feeling off balance I wouldn't expect a sinister cause. If it's something that doesn't bother you too much or too often, all the better.

Probably a good idea to mention this to your doctor but I doubt s/he'll get too excited.

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