Shakey Mo's thread of misery

when do you start the talk therapy, Shakey, or has that already begun?

I have a talking-therapy appt this Thursday - but it's just a regular therapist, not anyone that's specifically familiar with treating tinnitus. I honestly don't know what I'm going to talk about, beyond how irritating the tinnitus is. I am not someone who feels like I have a lot of issues to work out or anything tbh.

my appt with UCSF's tinnitus clinic is not until mid-January, right when the baby is due. so the odds of that being doable/helpful are a bit slim.

Kaiser basically has no support program for dealing with tinnitus. the last time I saw the audiologist it was basically "you will either get used to it, or it will go away. try not to think about it!"

thanks dude

what a bro

feel like the most sympathetic Kaiser doc I've seen has been the ENT. altho there were limits to his sympathy too. the others have all been eh what can ya do?

but I guess you don't go to doctors for sympathy right

seems worse today, probably the lack of sleep. feel like the yesterday I was coping a little better, that it wasn't as intrusive.

That's infuriating about the audiologist.

Really hope this clears up soon for you.

Whenever you go into one of those offices with a problem that ruins your quality of life but doesn't have a ready prescription you are in for some tough love. I just googled "acupuncture tinnitus" and came up with this fwiw http://dremilykane.com/2002/05/10/top-five-remedies-for-tinnitus/

I'm already gagging at the description of Eustacian Tube Drainage

"put your hand in your mouth. further. now, reach further. good. now further. if you can feel your lungs you've gone too far."

Using those Walkman-type devices with little earphones that go into the canal are particularly dangerous.

This frustrates me when I read warnings like this. Do they mean even at low volumes? Because the implication is that they'll cause damage no matter what.

I asked the audiologist about dangers of wearing my ipod in-ear headphones for like 6+ hrs a day and he said "eh as long as it's not too high a volume and you rest your ears in between a bit, not a problem"

Found another website where they were discussing that drainage section and also this gizmo: http://www.earpopper.com/

oh I've got no problem with sinus drainage stuff - had big sinus issues in the past and used them and they totally work. problem here is that I am not congested/my main sinus passages are clear. which is really weird, cuz I still feel like there's this pressure in my ear. of course, the head has a lot of sinus cavities, I suppose it's possible something got into one and has messed me up, but that would be pretty unusual/unexpected.

xp Thanks, good to know. I keep mine pretty quiet, and my earbuds are pretty uncomfortable, so I take them out for a rest anyway.

I use earbuds also, but try not to play too loud, take frequent breaks, sometimes only use one ear. Once I read something like that snippet, got scared and stopped listening but then in a few days there was a giant *pop* in one ear and I thought this is it, I've run off the cartoon cliff, looked down into the arroyo, where soon I'll be a puff of dust. But it wasn't the onset of tinnitus, just pressure from worsening allergies.

never heard of this before. sounds sort of scary (and not offered by Kaiser, of course)

Neural Therapy
An injection technique pioneered in Germany about 30 years ago, mostly for pain control. A very safe analgesic, usually 1 or 2% Procaine, is placed in specific “trigger points”. In the case of tinnitus, the trigger points will be similar to the acupuncture points, mostly around the ears. The idea is to “reset” and correct the nerve impulses which convey information from the outside world to the brain. Most doctors in the U.S. skilled in this technique were trained by Dr. Dietrich Klinghardt, MD.

of course, I'm getting an MRI next week, so if that turns up anything who knows what they'll suggest

gah it never ends

Ralph Stanley and Ernest Tubb today

buddy, i feel ya - dont have tinnitus but do have some other chronic conditions i cant seem to tame no matter what, and it is really, really frustrating

yeah, I vascillate between trying to be optimistic that this will go away/I will get better and just thinking well fuck this is how things are now, guess I should just learn to cope. the latter is sort of depressing.

it'll get better. I have faith.

so last night I smoked a little weed after dinner and while being high was actually really unpleasant/irritating when I went to bed (after taking my other sleep meds) I slept continuously for way longer (6.5 hrs) than I have in months. don't know what to make of that really. tinnitus still annoying as ever.

I got it while working in a CD store, doctor drained earwax and the t. vanished, for a while. But every sound was *so* clear, ears so vulnerable without the wax and I stupidly didn't wear plugs for a while. (George Martin also wrote about messing up his waxless, naked ears with headphones and studio monitors). Nevertheless, it's never been nearly as bad, since that drainage (which I haven't yet repeated; apparently the wax can provide some protection). The first drainage was 40-odd years of wax, so maybe I'll wait another 20 or so.

Also, cutting back on salt seems to make a difference.

another day of this bullshit

MRI appointment at 12:30 today

Good luck. Hopefully this will yield at least some useful information about what's going on.

^^^

thinking of u Shakey!

http://youtu.be/F_fmIQI-Y3o

grr

https://www.youtube.com/watch?v=F_fmIQI-Y3o

well that was weird

?

The MRI?

yeah they put my head in a tube for 20 minutes and then things spin around you and make really loud beeping sounds

Came across a couple of things that I hope will help:
http://www.vavsoft.com/Tinnitus_Tamer.html

Also, apparently head/neck position, particularly when sleeping, can affect/cause tinnitus (the 8th cranial nerve, or so I'm told). A visit to a chiropractor may help (and theoretically, the MRI would have caught this).

Wishing you the best of luck!

another hearing test yesterday. results same as the first, my hearing is fine all the way up to 8,000 Hz (which is the highest level they test for). saw psych on Tuesday as well, dude basically said I don't appear to have any issues apart from the tinnitus, which I seem to be dealing with as well as possible and said I could continue on my sleep med regimen with no problem. still waiting for MRI results... at this point feeling pretty despondent/cursed that I seem to have this thing that has no identifiable cause. just makes me feel like I'm crazy. 85% of tinnitus cases are accompanied by hearing loss, so I'm in that weird 15% range - but it also hasn't been caused by a head injury or infection or blockage so wtf. my fear is that the MRI will turn up either nothing or something terrible, and not relishing the prospect of either result.

god I'm so sick of this

fuck. they want me to get a follow-up MRI.

1. There is a question of a 6 mm mass at the right pontomedullary
junction. Further evaluation with contrast is recommended with
thin cut axial and coronal sequences at the level of the pons and
medulla. A repeat axial T2 fiesta sequence centered slightly
lower than on the current examination may also be helpful.
2. Mild mucosal sinus disease noted.

This could be good, though, right? It could and probably will be a totally fixable problem. And you won't have to feel like you're crazy anymore.

yeah at least they've maybe found 'something'? which is some kinda progress I guess?

ps - the only word that stands out in that is 'fiesta' :)

I don't know what to make of this news tbh. there are a lot of qualifiers in the e-mail from my doctor that accompanied this news (that they aren't certain it's anything, usually they're benign and no treatment is required/recommended, he doesn't say whether or not this is a likely cause of my tinnitus)

its very frustrating. and I'm freaked out, of course

that's a pretty understandable reaction

ps - the only word that stands out in that is 'fiesta' :)

Probably the least expected/appropriate word to be used in a medical diagnosis.

Really hope these findings represent progress (in the form of treatment, and eradication of tinnitus.)

The FIESTA (fast imaging employing steady-state acquisition) ultrafast pulse sequence provides high-resolution images with outstanding image contrast and high signal-to-noise ratio relative to the single-shot fast spin-echo (SSFSE) sequence. The purpose of this article is to illustrate the utility of the FIESTA sequence in oncologic imaging.

got the follow-up MRI scheduled for monday so at least there were no delays there. not really looking forward to dealing with neurology dept, altho at least my wife has lots of experience with them.

in a weird way I just feel like, somewhat angrily, going about my normal business as much as I can cuz what can I even do with this information, nothing really.

well that sorta seems like the only thing you can do. stressing yourself out isn't going to help you know any more than what you know now. but I totally sympathize, like how do u get to that place of not worrying, easier said than done, I know.

Wow, that's interesting. Amazing they didn't image the cerebellopontine angles and IAC's in detail the first time, given that tinnitus is your only complaint. About the only thing they could hope to find would be an acoustic neuroma or other small mass lesion there. Hope they're not charging you for the second scan.

Is the tinnitus right sided? Contact with nearby structures can sometimes sensitize an otherwise normally functioning cranial nerve. The commonest example of that is trigeminal neuralgia, in which the sensory nerve to the face starts to produce excruciating neuralgic pain without sensory loss or other dysfunction, usually because a blood vessel is resting against the nerve. The contact is enough to trigger hyperactivation of the nerve (and thus pain) but not to compress it and produce neuropathy (loss of function). By analogy I guess you could have neuralgic-type overactivity of the vestibulocochlear nerve, which exits at the ponto-medullary junction, producing tinnitus without hearing loss. I've never heard of that, but IANAENT.

If they end up blaming the nodule for your symptoms it should be treatable. Skull base surgery is a big deal in general but there are minimally invasive techniques available for trigeminal neuralgia at least. You'd need a subspecialist neurosurgeon or ENT.

Again by analogy to TGN, treatment for neuralgic pain might help your symptoms. Tegretol is usually first line, but gabapentin or other anticonvulsants might help. If I was your neuro, knowing what you've been through, I'd be willing to try if your symptoms are on the same side as the nodule. No guarantee it would help but might do.

oddly, the tinnitus is actually in my left ear

(really appreciate the additional perspective btw)

I feel like I am sorta back where I started with this - there is no explanation for why I have tinnitus, and as such my brain will either become habituated to it at some point (not yet, unfortunately), or it will go away. which is not really all that encouraging in my current state but wtf can I do.