Shakey Mo's thread of misery

i can't believe someone hasn't already invented something that you can stick in your ear that emits a sound that would counteract this. but maybe that's not how tinnitus works. anyway my wife has had this off and on for years, exacerbated by her cancer treatment (she was given a platinum based drug that seemed to make it worse)

yeah that's now how it works. there is no actual signal to counteract, it's more like a neurological disorder.

Aero otm. Its hard for me to know, bcz ive had it for so much of my life but its only during extreme stress/tiredness that it bugs me anymore.

working on reminding myself that this is not so bad and I have everything I could ever want (home, family, job, creative outlet etc) but ugh feel like my body is generating stress-pain to give me something else to worry about instead of the tinnitus

must... relax... somehow

Good luck.

had my first mtg with the UCSF therapist today. as would be expected, I did most of the talking filling her in on my history etc. seems promising tho.

basically the idea is to focus on improving my overall quality of life/helping me cope, and not on somehow "curing" the tinnitus

nice! sounds positive, which is huge with all the dismissive responses that have come before.

that's great, Shakey

I have recently discovered that I have a minor case of tinnitus, so I've been reading this thread with interest. It hasn't really negatively effected my life in any way yet, but I am concerned about it getting worse.

In any case, this is highly subjective and maybe placebo, but I try to do a short daily meditation practice for other reasons and I've noticed that it seems to help with the tinnitus.

but I am concerned about it getting worse

fwiw from what the pros have told me, tinnitus tends to not be a progressive thing

which is huge with all the dismissive responses that have come before

with the kaiser therapists, they mostly seemed concerned about identifying other problems that might have either led to the tinnitus or been stress factors in and of themselves. but I honestly feel like the tinnitus is the sole source of my problems (insomnia, upper back pain, depression, etc.) - I didn't have any of these problems before, and this therapist clearly grasped that, talked a bit about how any serious physical condition can be (and often is) the source of all these other problems, and that the key is learning how to deal with/cope with the physical condition itself.

which has obviously been a real problem for me

anyway, my "homework" is to make a list of things I enjoy doing despite the tinnitus (I guess this rules out "smoking weed" since I can't handle that anymore lol)

that sounds like the beginning of progress to me!

"ILXing" at the top of yr list :)

does commiserating count?

felt like I had a couple almost-okay days this weekend (there was even a brief period where I didn't think about it at all) and then ugh came down with a cold the last couple days and just feel fucked now. normally I would just take a day off and sleep and rest but I can't take ambien all day which means I basically don't sleep until nighttime and even then it's just the typical 6 hours or so agh

oh yeah man a cold will jack that shit straight up. but once you're well again it sounds like you're on the road to adjustment, which is awesome!

I hope so. I feel like having committed to therapy improved my outlook just by making me feel like I'm being proactive about it, that here is something I can do that will help me, over time. It was kinda demoralizing hearing so much "welp nothin we can do for ya" from various medical pros.

http://www.dailymail.co.uk/health/article-2278523/Pensioner-suffering-rare-medical-condition-endures-years-sleepless-nights-hears-How-Much-Doggie-Window-loop-head.html

so, could be worse I guess yikes

it's weird how I feel like I am consciously training my brain to prioritize sources of sound in any given environment. like I will be sitting on the couch and thinking "okay, I hear 1) my baby gurgling, 2) the traffic outside, 3) my daughter running water in the tub, 4) music from downstairs - ringing in my ear is at the bottom of this list, pay attention to all these other things first"

ugh my sleep has just been fucked for like a week now, waking up at 3am every night. makes every day seem so long. I know that I will (am getting?) better but I'm so tired of every day being an endurance test.

Saw MBV recently, and despite very great care with high end earplugs and fingers in ears, the "holocaust note" (ugh must it be called that) has ramped up my tinnitus a bit. I expected as much.

Re that daily mail article, Oliver Sacks mentions similar aural hallucinations/loops in one of his books "man who mistook his wife for a hat" I think, and possibly also in "musicophilia". It can be related to epileptic/stroke type brain activity iirc.

is it sad or awesome that sleeping for 7 hours in a row feels like a massive accomplishment

it is awesome without even the tiniest trace of sad, you need to embrace that man

yes embrace that man

(sorry)

baby steps, shakey <3 and sleep rules

I went to an ear doctor yesterday to talk about my tinnitus and it was such a huge waste of time. I want my 40$ copay back.

take 2 aspirin and never darken my door again

did yr tinnitus come back poly...? you mentioned it upthread but it sounded like a temporary thing. and yeah in my exp ear doctors not so good with this. personally, it's been much more productive to see a therapist.

Yeah it comes and goes for me but the last few weeks have been pretty rough.

oof sorry to hear that. doctors can be good at identifying causes and prescribing drugs if its warranted, but helping you cope doesn't seem to be their specialty. do you have any hearing loss or any other identifiable cause...? (not that that will make it go away, but it will help you get your head around it)

I've had a history of ear infections but so far I don't think hearing loss is a major issue. I mean, I'm sure I've fucked my ears pretty bad with headphones and loud music but I can still hear.

I've been told this could be a precursor to hearing loss - and I've fucked with my ears over the years too (performing, recording, etc.) - but so far none for me yet. does yours seem to be triggered by anything in particular? or does it get worse if you're listening to something loud etc?

I have some triggers. I think higher-frequency sounds exacerbate the problem. The specific frequency of mouse-clicking has this awful cumulative effect. Nasal congestion issues can send me into a week-long ringing session. Marijuana had been making things worse lately so I quit using. Trying to drink less coffee/caffeine as a test, get more exercise, etc.

well, back on the trazodone and sleeping 5-6 hrs followed by a couple hours of restless sleep. which tbf is much better than that 4 hours of sleep shit when I had that cold. tinnitus is unchanged but with rest it's a little easier to just do my daily shit and enjoy things. I do find myself continually wondering how long it will be before I can phase out some of these management things like taking sleeping pills and wearing earbuds at work and shit like that... something to discuss with my therapist I guess. on the plus side I don't feel as stressed out or anxious about it, but it does still occupy my thoughts more than I'd like.

gah 4 hrs of sleep the last couple nights. must remember: time is on my side

Oof. But it sounds like things are gradually improving overall, at least...?

so it's been a weird couple of weeks, lots of ups and downs. I went four nights in a row with four hours of sleep each, freaked out cuz the ambien basically seemed to no longer be working. my therapist told me to increase the dosage of trazodone and see if I could get to sleep on that, and then if I woke up in the middle of the night to alternate taking the ambien or ativan to get back to sleep. seemed like my insomnia was being driven more by anxiety than by the tinnitus... anyway after a few nights of that crazy drug cocktail it turned out I could get to sleep on just the trazodone alone, and even though I still wake up several times a night, I can get back to sleep without anything else and still feel rested in the morning. oh, and I took up jogging. since then my outlook has improved a lot, it feels a bit easier to deal with the tinnitus. Falling asleep was really the one remaining thing it was (and sometimes still is) really interfering with - otherwise I can do everything else I used to do before this set in. But man, yeah I need sleep to maintain any semblance of normalcy, it's really clear.

anyway, for those who were wondering. this thread is sort of like a diary for me.

That's a fine update. I'm happy to hear some normalcy is returning. Keep fighting the good fight.

it's weird... if I'm rested and busy I can keep it in the background to a certain extent, or if there's enough other sounds around me to drown it out. quiet situations are still kinda hard.

Your story has made me super paranoid, now that my husband is in a band - he's getting custom fitted earplugs in a couple weeks, but I'm still nagging at him about turning down their amps when they practice (I don't understand why it has to be so goddamn earsplittingly loud at shows, let alone rehearsals).

I hope things keep improving for you, shakey.

well fwiw my problem appears to be totally unrelated to hearing loss/noise exposure

Are you using any white-noise-generating thingy when trying to sleep?

I have it on "ocean night" setting right now or something... I dunno how much it helps really. probably some, just so my bedroom isn't totally silent when I'm trying to sleep.

don't get me wrong tho just1n3, noise exposure/hearing loss is a common cause of tinnitus. in my weirdo case tho, it's not related.

Hm, yeah, I was wondering if you found it helpful. I know folks who swear by them, but have had to struggle with finding the best frequency/sound.

xp

Xp yeah I know yours was just out of the blue, but it got me thinking way harder about this stuff than I had before, I just don't want him taking it for granted just bc its ”fun” to play loud and without earplugs.

Makes total sense that sleep is part of the key to adjusting. I know that even minor things like the floaters in my eyes become much more pronounced when I'm sleep deprived, so it plays that tinnitus would become more aggravating/less backgroundy

I'm glad you're finding some kind of normalcy, shakey! that makes me really happy for you.

fuck, another sleepless night. I seem to have bouts of these recurring every few weeks. just the worst. need better meds but have to wait until my next appt in April...