jimvee
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  • Bad day. Good day to keep practicing to not have any emotional reaction to all the sounds and pain. I've become quite good at it.
    SarahMLFlemmer
    I'm starting to, too.
    Tryn2BHopeful
    I need to learn how to do this better. I dont have any outward reaction to people around me, but inside I am screaming...
    4Grace
    @jimvee - I have only had that feeling for moment. @Tryn2BHopeful - no outward reaction is half the battle. I hold it in for a few days at a time but then it comes out. It's like a high pressure valve.
    3 months. Proud of myself for everything I've done and how I'm coping. Will soon try to get normal life back step by step. Looking forward.
    Just did some neck exercises/stretching. Now 5 min later really fast and high pitched TTTS that I've never had. Any experiences/explanation?
    jimvee
    Update: the rapid 'ticking' multiple times per second lasted about an hour, after which it started to break up into bigger intervals. Multiple ticks every 5 seconds, every 10 seconds, every minute, every 2 minutes, etc. Faded away completely about 12 hours later.
    DutchGuyMike
    You most likely stretched muscles "badly". TTTS is often from overly stretching/tightening of upper body muscles. Most tinnitus sufferers do the "clenching" of the upper body subconsciously, Clonazepam (Klonopin in the US) is helping me IMMENSELY with reducing the volume of the tinnitus (which had gotten worse), and is now softer now (and not merely the perception of it).
    DutchGuyMike
    There's some studies that directly combine the two together, but also the body's muscles constantly stopped being tight (AND sleep got way better). I know the horror stories that if you get off of it that the tinnitus/TTTS will get worse but if you taper extremely slowly (with weights and capsules) that effect should be very minor. Best is for a physiologist to help with the neck/jaw.
    Not much improvement as far as I can tell, still unmaskable and multitonal, but the amount of time I'm actively bothered has been declining.
    Laying in bed while a mosquito keeps flying near and onto my ear. Like come on bro: occupied! These ears already have a tenant.
    ECP
    I'd prefer to evict the tinnitus and then welcome the mosquito with open arms. No security deposit required, and the first month's rent is free.
    So grateful for the loving people in my life. Since my onset, friends, family and coworkers have been sending love, texts, cards and gifts.
    Juliane
    So happy to hear that! People with T should always receive love and gifts in abundance ❤️
    4Grace
    That sounds awesome.
    Still spiking, still abstract. Like electric radiation with hissing, a low tone, ringing and pulsating crickets. I can feel it and it hurts.
    Tryn2BHopeful
    I got that low bass like tone as well, but its not constant, but it is annoying you can feel it in your ears sometimes. I got the hissing as well...Hope you feel better.
    Tryn2BHopeful
    oh and I hear... that ice on the ears and ginger tea helps with the pain.
    jimvee
    @Tryn2BHopeful Thanks for the tips! I read your comment while laying with ice on my ear. Great minds think alike! :-)
    Many friends go to raves weekly. Not me. I was always the buzzkill that asked to turn the music down, in car or at party. Now the one with t
    Juliane
    Life is so so unfair :-(
    Mo8409
    Oh absolutely! I remember saying that if I ever had it that I'd kill myself. I never went anywhere that damaged my ears. Now I still have healthy ears and hearing and have T. If I only knew other things could cause it other then hearing loss. Ugh.
    Marina Moon
    Before my T started, the sink in the kitchen had a running faucet that made a constant hissing sound. It drove me nuts! I was so relieved when it was fixed, and then months later, boom i got tinnitus T_T
    For years one of my biggest fears was tinnitus. I couldn't even stand the thought. Never went anywhere loud without earplugs. Yet here I am.
    Juliane
    Same here. That and losing my hearing, which I did when I was in my early thirties - on my left ear. I wonder why that is. Seems so evil. So many other ailments I'd gladly take over anything hearing related.
    4Grace
    @jimvee that hits hard. I had no idea this existed. I don't think I would have protected because I would never think that I would get it. Never know how bad it is. Only when you get it, then you know. It sucks for sure.
    4Grace
    @jimvee for me it's not so much the noise. Well, it is the noise but impact on what I can and can't do is much worse. Worry that it's getting worse is hard too.
    And that's a wrap! Had my final injections today and then the long journey home. Time to get some rest at last. Then we'll see what's next.
    Final injections on Friday. Then, after treatment since onset, it will be out of my hands. Kinda scary, but let's see what the future holds.
    Debating what's worse: that NAC capsule flavor or a little dexamethasone leaking into your mouth while not being allowed to swallow.
    Back home after 12 intratymp. injections in the past week, after a month of HBOT. Treatment's been a fulltime job. Have a good weekend all!
    Had the most beautiful, spontaneous sunset hike, enjoying nature and life. Now back at the hotel with a hike-spike. Ups and downs.
    Mo8409
    Take the wins we're ya can though. A sunset hike sounds amazing.
    jimvee
    @Mo8409 Absolutely! It was worth it. The lake, the fields, the forest, made me realize I (can) still love life!
    So I'm out of the country, got some food and pulled over at a random lake. First time in ages I hear crickets, like in my masking video. Joy
    jimvee
    Maybe 50% of what I was hearing were my head crickets, but the other 50% were real and close to me! Unfortunately afterwards I also took them back with me, but I guess this was a good learning experience.
    DutchGuyMike
    Don't forget to PROTECT your hearing, if you have tinnitus from hearing damage is it imperative to protect the worse ear - the best tip I can give is to use a soft (sleeping ear plug) in one ear constantly, like I do. Which protects the ear but doesn't increase sound sensitivity due to the other ear picking up sounds normally.
    Typing this as I'm laying on my side with dexamethasone in my right ear. I have to say each injection has gotten easier and less painful!
    I have no affiliation but the Spectroid app really helps me verify if sounds are real or in my head! Sometimes good news, sometimes bad.
    Tryn2BHopeful
    There is a thought... I just keep asking my wife...
    Christiaan
    Yeah, sometimes it's hard to pinpoint what's real or not, especially if your tinnitus is multi tonal or just changes character.
    Past weeks I've been strong, positive, laughing. Now unexpectedly letting all tears out. Will be okay but what a rollercoaster this has been
    SarahMLFlemmer
    I get it!
    Tryn2BHopeful
    It's hard! We all have those days!
    DutchGuyMike
    Clonazepam in combination with Tramadol (for my lower back pain) does WONDERS for calming me down, improving sleep, reducing anxiety greatly AND softening the tinnitus (there's several studies that indicate that Clonazepam is quite effective against tinnitus, and that tapering off should be done VERY slowly, with NAC & R-ALA.
    Had my second round of dexamethasone injections today. Not as bad as the first! Will be getting them daily from now on.
    I'm in the car outside the clinic where I just had my first two intratympanic dexamethasone injections. Happy, but it was nightmarish!
    just1morething
    @jimve, they don't do them much anymore but I had those done in 2010 and 2011. Puncturing the eardrum sure hurts if they don't numb it enough. Laser for holes is less painful.
    jimvee
    @just1morething Sure did! It was a lot better my second time today, one ear at a time and longer time for the anesthesia. Did the injections do anything for you?
    1000mg taurine pills just arrived. May contain: eggs, milk, nuts, crustaceans, soy, wheat and fish. This will be a complete dinner!
    After two weeks of searching, emailing and calling doctors/hospitals for intratympanic injections, it looks like it will pay off very soon
    Anyone else ever struggle with pinpointing their T? Mine is loud but often indescribable and not a clear sound. It's the craziest experience
    Tryn2BHopeful
    Mine was like that for a while... it was a wavering breaking up static mess. Now its more of just static that breaks up here and there.
    Ondine
    Back when I had multiple and constant sounds, I found it so hard to describe it. Pure tones mixed with computer / modem sounds, wavering vibrations, wine glass... Madness.
    Sounds like quickly walking up my creaky stairs is one of the rare things that masks. Looks like I'm gonna be burning some serious calories
    Mo8409
    Record it and make it into a loop video for masking sound lol
    That moment when you're having the best morning of the week ('am I habituating?') but then sneeze and it becomes the worst
    Mo8409
    You're still early with this condition, it's gonna change a lot and not make sense for awhile. It will eventually calm down.
    kingsfan
    I always cover my ears when I sneeze at home. In public I usually have earplugs in so I can actually cover my mouth without worrying about my ears.
    5.5 weeks in: prednisone, jaw PT, vitamins, melatonin, ginkgo, NAC, magnesium, curcumin, now 2nd week of HBOT. Anything I *haven't* tried?
    Jammer
    Barium enemas take my mind off my tinnitus momentary. Don't recommend unless you're truly desperate.
    jimvee
    @Joe Cuber Thanks! I'm completely baffled that even though I have pretty unmaskable, multitonal, oscillating and 6-8/10 tinnitus, I have been averaging about 7,5 hours of sleep except for the first two hellish weeks (with 3mg melatonin!). I even napped like 3 times last month. Triggers: I seem to have slight reactivity and hyperacusis, but I consider the TV even at low volume and the PC fan to be the worst.
    jimvee
    @Wrfortiscue Thanks! Have tried as much silence (no *loud* noises) as possible. Sick leave since week 0.5 and only left house for medical appts, with earplugs. Dilemma as I don't want to become oversensitive to sound and plugs make T 2x louder, but I'd rather be too careful and give my hair cells some rest. ENT wants me to take em out more, but I'm not risking it, especially now it might undo any possible HBOT effect
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