Shakey Mo's thread of misery

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...

arggh no sleep, I am losing it

Oh man, sorry to hear. No adjustment in meds?

Kaiser psych nurse just told me to take more of the trazodone, which doesn't seem to be doing much. find myself resorting to the ambien each night, but that only puts me out for a few hours now. and then I can't get back to sleep. which is weird cuz just last week I was sleeping better with a lower dose of the trazodone... I dunno what's going on with me, I feel crazy. I just know what I have now isn't working consistently.

it's like this self-perpetuating cycle of anxiety about sleeping, combined with the tinnitus, just won't let my mind switch off and go to sleep

I've heard that writing things down before you go to sleep is a good way to turn off your brain; dunno how well that'd work when the anxiousness is audible, but could be worth a try.

had an amazing experience at the ENT just now with aero jr - they're checking his hearing (just standard workup stuff) and what they do is play a tone and then after he looks in the direction of the tone a light goes on above it with a little stuffed animal. (pos. reinforcement for looking in the right direction, I figure.) he's getting them all and then at one point he looks to the right when there's silence in the booth, and I think, aero jr., please only look over in the direction when you hear a tone or it makes it hard to measure, only then the light goes on, and I say to the aud tech: "was that 4k?" and she smiles and nods. just absolute total nothing for me in the right ear at 4k. lol at loud music, A+ 4k eradicator would mosh again

well they've given me a prescription for seroquel now

xp

pitch 4k eradicator

ugh totally going through the pharmaceutical grinder here... the seroquel helped me get to sleep but the side effects were awful, felt like I'd been hit in the head with a hammer the day after, just totally slow and groggy. so stopped after two days. now they had me try a different benzo/sleep drug last night, restoril, which resulted in probably the best night's sleep I've had since this began, but this morning I'm super-agitated and hyper. I have an appt with BOTH therapists Thurs am to try and find some long-term solution that will help me sleep without heavy side effects. but I just feel totally discombobulated, going through so many drugs... when will I ever feel normal again :(

so now I am on remeron. so exciting. actually it's been good - my sleep is better, altho I still wake up multiple times during the night. the difference being now I can actually get back to sleep with no problem afterwards. so regular sleep has helped me be less crazy/out of it during the day, which has made the tinnitus easier to deal with. I seem to be going for longer periods where I don't think about it at all now (and by longer periods I mean, like, 15-30 minutes) but that's some improvement. And I don't feel constantly stressed out w/chronic back pain... so this is all good but progress is slow.

so I am now back to sleeping 8 hrs a night. huzzah! I have also resumed pretty much all my regular habits (playing music, smoking weed, etc.) That being said, my tinnitus is still exactly the same as it was the first day I noticed it, and I still find it hard to accept it and not be periodically irritated/depressed by it, but there's pretty much nothing I can do. *sigh*

sleep is an awesome improvement though, am so glad you finally cracked that

It's great to have you back!

congratulations, shakey!

Are you using Remeron to get 8 hours? That is a fantasy amount for me.

i'm glad you're feeling at least a bit back to normal! keep on keepin' on!

yes I'm on 15mg remeron. I take it at night... it's not like ambien where you are like *wham* asleep 15 minutes later but I don't have the panic/anxiety symptoms that were waking me up and keeping me awake.

tinnitus itself is still annoying as fuck, feel like I have to constantly make an effort to think about something else.

xp

what are the side effects of Remeron?

so I am now back to sleeping 8 hrs a night

! congratulations! I didn't get that back for four whole years.

Congrats on the sleep!

Is the Ambien you sometimes use the 12.5mg CR version? It's a dual-layer pill, some kicks in immediately (or within 15-20 minutes), the rest 3-4 hours later to help prevent waking up in the middle of the nite. I've been using that for the last year (after 8 years of taking the standard 10mg version) and it helps immmensely, although I do need to switch to something else temporarily for a week or two every several months so the ambien starts working again.

what are the side effects of Remeron?

I am, fwiw, apparently very sensitive to a lot of medications' side effects and remeron has a very mild side effects profile. the most common side effects are an increase in appetite and cottonmouth (hmm this sounds familiar), neither of which have really bothered me.