kingsfan

kingsfan

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  • kingsfan
    Feel like garbage, f*cking f*ck f*cky. I just want stability again.
    View previous comments…
    kingsfan
    @Wrfortiscue I have found that it, with me at least, it doesn't even matter if it only rises in volume the most minuscule amount, my brain picks up on it and it becomes unbearable.
    kingsfan
    The biggest problem I have been having is I keep getting these new tones that come when I spike and then leave when it all settles down. After covid it started in cycles of about once a month, then every couple of week, and now it seems to be on a week then off a few days.

    It seems like the only way to mitigate it is to just stay home in isolation.
    kingsfan
    I was doing soooo good before Covid. it might spike up while I was out doing stuff, but it would come back down in a couple hours or overnight and it was just the 4k-6k tones in my left ear. I was living free, except I avoided loud places and yadda yadda.
    kingsfan
    alright well I guess I can't go out of the house anymore. Spiked up again.
    NYCGuy
    Sorry to hear that, lets hope it goes down soon.
    in_LA
    I'm sorry bro :(
    kingsfan
    I'm finding a correlation btwn my tinnitus being a little better when taking circumin. I wonder if neuroinflammation may be part of my issue
    View previous comments…
    MaxRabbit
    Heh...read your reply too and was thinking "whats he talking about?" Im there also buddy. Low sleep, alien signals in my brain, shit is mixed up now.
    MaxRabbit
    I see. You have 2 tones and one is helped some by the pills. Im glad, yes, any relief is amazing. :)
    kingsfan
    @MaxRabbit oh no I have around 6 tones. it's hard to pinpoint exactly how many since some are overpowered by others.
    Travis Henry
    Hope u are ok
    kingsfan
    Hey Im doing decent, knock on wood. Spike subsided a bit but is still hanging on... a little worse today than yesterday but still better than it was. I'm wary any noise will spike it back up though.
    kingsfan
    Ugh another day with this spike. FML. I really hope this isn't permanent. Same shit i've been dealing with on and off since Covid.
    View previous comments…
    Marshall
    I just dont understand why we dont have stable tinnitus like seemingly everyone esle
    in_LA
    Have u considered supplements, I sometimes feel, that as we get older our ear hair cells get worse, so I take supplements to at least try preserve what I have left over, quite a sad existence though lol
    kingsfan
    @in_LA

    I've been taking supplements since nearly Day 1.

    NAC
    Vitamins A, C, E, D
    Magnesium Threonate
    Zinc
    Fish oil
    Circumin
    kingsfan
    Even though I've been through this several times, I cannot seem to keep my limbic system in check.
    View previous comments…
    kingsfan
    @Wrfortiscue I did go to a funeral about 2 weeks ago and the organ and kids screaming were quite loud. I ended up putting in foam earplugs. I wonder if I just damaged my hearing more and the tinnitus was delayed.

    I avoid everything, but I couldn't live with myself if I skipped that funeral.
    Wrfortiscue
    @kingsfan even if you worsen because of that funeral you can't blame yourself. I imagine it's just a spike.
    kingsfan
    @Wrfortiscue I hope so. My exposure time was 2-3 hours, maybe more. I've never had that long of an exposure.
    kingsfan
    Struggling the last two days. Too many variables to figure out why. Maybe driving without strong enough plugs. electric hiss is devastating.
    View previous comments…
    Marshall
    I use my 27dbs musician plugs. They work well bc it cuts out occlusion
    kingsfan
    @Wrfortiscue I think it's my left ear that's spiking, though sometimes it's in my head.

    I wonder if I wear a foam plug in my left ear while driving, if that will stop me from spiking... or will hearing the road noise in my right ear still spike my left?
    kingsfan
    @Marshall I switch between 26db and 20db ACS customs. I prefer the 20db's as they allow the environmental sounds to mask my tinnitus a tiny bit. With the 26db I am assaulted by what seems like 80db ringing.
    MaxRabbit
    Hi! The UCI doc gave me the migraine story too! I never get headaches or migraines. WTF. Do I have 24/7 migraine cause the ringing is 24/7??

    I'm guessing you at least have migraines. Did you take any medications for it?
    View previous comments…
    MaxRabbit
    I felt very dismissed by him - never had a migraine in my life. Rarely get headaches. He was super late and fast and seemed to think the meds are a cure. Ive never heard of migraine meds stopping the T. Any feedback helpful!! Thank you and hope you are getting better!
    kingsfan
    @MaxRabbit Yes, his research is centralized around a migraine-tinnitus connection. He was also short with me, but he did give treatment options to try rather than telling me to just get used to it. I've been to a lot of ENTs in LA and Orange County and UCI is the only place that actually tried to help.
    kingsfan
    The nortriptyline helped with anxiety and depression - I was on the verge of suicide when I went to UCI - but I had to discontinue because I was getting increasingly worse heart palpitations from it (it raises your heart-rate).

    The gabapentin didnt' help the tinnitus, but helped with anxiety from it. I take it from time to time like a benzo.
    MaxRabbit
    Oh I see. Got it! So you are able to go out and do normal activities like shop? work? etc. How long did it take to get to that point after on-set? I realize I cant wear any in ear protection at this point. I see the UCI doctor this week. Did he give you oral steroids or injection ones into the ear? Curious if he offered any. Are you feeling better now? Lots of questions...sorry. Thank you and hope you are well!!
    View previous comments…
    kingsfan
    I have not had any intra-tympanic injections. I've taken oral steroids a few times, but I don't think it helps - only risks making things worse.

    I do take lower dose steroids every so often to get my asthma under control. I don't think I've had any negative effects from that.

    The only progress I make is through habituation/determination. I have never physically improved.
    kingsfan
    Going to stores, restaurants, etc has probably contributed to my worsenings, but I refuse to sit at home all the time.
    Wrfortiscue
    Damn your last 2 entries pretty much describe me
    MaxRabbit
    I get twitching too. I really think I have cranial nerve issues on top of the stress/earpods that killed my ears. I can handle a bit of hearing loss just fine, Its the rings, beeps, tones, and water faucet I now hear all the time that makes me....
    I read it twice, what does the shopping cart ref. mean?? Hope you are doing well!
    kingsfan
    Sorry, the shopping cart thing is sort of an inside-joke about my troubles with people slamming around shopping carts and my constant struggle trying to run into stores trying to avoid the cart area.
    kingsfan
    My right eyelid has been twitching for 3 months straight now.
    View previous comments…
    kingsfan
    Steph1710
    @kingsfan just before I developed T, my eye started twitching and lasted a good year. Luckily it doesn't twitch anymore - it was sure as hell annoying though when it did.
    kingsfan
    @Steph1710 Mine does it on and off. Used to be the top eyelid. Then the bottom started and that's pretty much the default now. I used to think Flonase helped, but I can't take it anymore. It's never lasted more than a couple weeks though, so this is new.
    Bart
    Hello mate, I am on doxycycline for a prostate infection and a resulting UTI , doc put me on doxycycline but on day 2 after just taking 3 pills my tinnitus spikes pretty badly, but the doxy works like a charm though, how was your experience with it and for how long did you take it ? I took 200 in one go yesterday evening and am supposed to take 2x100 mg/day for another 10 days
    kingsfan
    I don't remember what my dosage was, but it was a standard 7 day course. I remember my ears not feeling great after finishing, but I don't think it was too detrimental. I'm hoping I won't need it again any time time soon though.
    MaxRabbit
    Hair dryer? I cant even take flipping on a light switch. What kind of tinnitus do you have and how long have you been showing improvements? Sounds like a great sign!
    kingsfan
    It will be two years in September. I have recruitment with high frequencies. I also, naturally, have phonophobia. I just have many different type of loud ringing, static, hissing and other odd sounds and, since covid, reactivity.
    kingsfan
    Used my hair dryer today and didn't even realize I didn't have earplugs in. I think living with carpet has helped my sensitivity.
    kingsfan
    Any full-stack web developers on here? Which should I learn next? Express(node.js) or Ruby on Rails (ruby)? I am currently a js/react dev.
    Stacken77
    I don't work as a web dev, but have been involved in projects. I think Express is really neat and powerful.
    kingsfan
    I'm leaning towards express since it is all javascript, which I am familiar with, but I'm having a difficulty getting any idea what kind of job opportunities it would bring vs Ruby.
    kingsfan
    I have decided on node.js/express
    MaxRabbit
    Sorry you had to leave your job due to this madness and relocate. I have a spare room too. Not sure if that would have been an option for you but I realize the only people that understand this are the ones that have it. I thought of getting a roommate but how do I ask someone to pay rent and shut the fuck up? Plus I have a house rabbit. Hope you are felling better!!
    View previous comments…
    Flowergirl
    @MaxRabbit U are right nobody understands this. My husband just believes me b/c he's seen the changes in me. My cat Leo is super understanding he does not care if all I do is lay around the shack. (Old bluegrass tune) our old mobile home is paid for. I used to b*tch about living in a mobile home but now I know how lucky I am.
    kingsfan
    @MaxRabbit I was also living in orange county after splitting up with my fiance a couple years ago. I lived in south bay (hermosa/redondo beach area). I moved in with a roommate about 3 months into my tinnitus and didn't realize how much of an issue it would be. I mainly stayed in my bedroom and office - I had two smaller rooms while my roommate took the larger master bedroom.
    MaxRabbit
    Right, roommates are tough for this! I see how it went for you... Well had I caught you sooner you+ cat could have crashed with me+bun before deciding what to do. Seems though you are already doing better with the hairdryer post. :)
    kingsfan
    Feeling sick again, and I'm in foreign territory and not sure how my health insurance will work here.
    MaxRabbit
    Yes. I have so much going on with my ears I am unsure what he can do but I do there is a large research dept. attached and hope he can send me there. Do you have any other details to share? Did you get referred to any one after him for research/habituation or other testing? Any details would be helpful. Thank you for posting!
    View previous comments…
    kingsfan
    yea he had a whole entourage with him as well - an assistant and a bunch of medical students. He also has an audiologist that works with him as well as his PA. The PA was just for follow-ups and would consult with him. If you want real one-on-one time, then Dr Harrisson Lin is the doctor to make an appointment with. They are both colleagues, and great, but work differently.
    kingsfan
    Dr Djalilian seems to want to run tests and try migraine treatments, while Dr Lin will work more with medications such as Nortriptyline and Gabapentin.
    MaxRabbit
    Thank you for all the information! I am wondering (pretty sure I have hearing loss) if they work on brain pathways and other options. There is VNS that can possibly stop the sounds through electric stimulation, nerve stimulation, mushroom extracts, etc. I'm up for nearly any and all trials but medication (pure chemical) freaks me out. Really nervous to go but hope they can offer some options.
    MaxRabbit
    Sorry. The comment cut off. I have an appt, with Dr. Djalilian in early Aug. Your comment caught my eye of course and wondering if you have seen him too or just heard about them. Thank you!
    kingsfan
    Yes, I have been to Dr Djalilian. He is doing tinnitus research and is very thorough. Most ENTs in the area will just brush you off. His colleague, Dr Harrison Lin, is also a great doctor. He suffers from menieres and tinnitus and so is very empathetic.
    kingsfan
    Dying without my philips hue lights. I'm sitting in the dark because I can't be bothered to get up to flip the light switch.
    Matt G
    Lmao yup I haven't switched on a light in my place in years. Philips hue bulbs rock. Haven't had to replace some of mine for 6+ years.
    kingsfan
    messed up going to a loud restaurant (75-85dba). Can barely hear my car stereo over the road noise and ringing.
    View previous comments…
    Cory_
    I can't even imagine being responsible for a family with this mess. Maybe I'm lucky I got it so young.
    Ken219
    Hope all is well with you. Stop exposing your ears to loud noises. Know when to leave a place. Praying for better treatments or cure!
    kingsfan
    @Ken219 I thought I'd at least be able to go to a restaurant with ear plugs in.
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