3.5 Months Into Tinnitus — Scared and Tired

Discussion in 'Introduce Yourself' started by GBB, Nov 15, 2020.

    1. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Hi all,

      I've made many posts here but never an introductory post, and I'm feeling pretty down today, so figured it might be a good time.

      I've had tinnitus twice in my life, once from 2016-2019'ish, and again since July 25th 2020.

      The first time my tinnitus was mild and in my right ear only. It quickly faded from my daily attention, being masked by most noise, and over time it eventually went away. One day I stopped using the fan I had been accustomed to use for masking in my bedroom, and I heard silence. It wasn't really an event, it just sort of happened and I thought nothing of it. The tinnitus wasn't a big deal to me and I had almost grown fond of it - it sounded like distant crickets and lulled me to sleep.

      Fast forward to earlier this year, I had microsuction, and a very loud noise went off near me a few weeks after. It took a couple of days to crop up, but I've been in real torment since then.

      My tinnitus at first was an almighty EEEEEEEE in both ears, which changed after about 2.5 months to several different noises in each ear. On any given day I can have a rhythmic tch tch tch in either ear, a lower toned doooooooooo, another lower tone that sounds like wawawawawawa, or a number of other sounds from a grab bag, either tonal or atonal that are very intrusive. I've also had a couple of secondary "traumas", like being exposed to a fire alarm, which seem to elevate me back to existential threat status. I take precautions against this but it's hard when the threshold for re-injury appears to be so low.

      I've had a few times where the tinnitus seemed to be getting quieter, either due to medication, or I had hoped natural healing, but it never stayed quieter, and today although it is not as loud as it's ever been, it is quite loud and intrusive. Innocuous noise will often spike me, and I haven't reached a point yet where simple, everyday things like a shower don't pose a risk.

      I haven't worked since this all began, as I've been trying to just keep myself from losing it, and the tinnitus is an absolute torment and impediment. I would really like to go back to work, but this would involve speaking on the phone for long hours, and more importantly, would demand a level of focus and attention I am able to achieve maybe once a week or less. I had a dream job offer paying me roughly twice what I make now, but that will expire in February - I can't imagine taking a job where I have to travel cross country now, flying twice a week, when my ears are spiked just staying in my own home.

      At this point I am truly scared - I want to be able to enjoy time with my family again and do simple things without constantly fighting a mental battle.

      I've tried different antidepressants, other neurological medications, literally over 25 supplements, a Konftec laser, peptide injections, and a number of other things, but to no avail. I keep a spreadsheet of everything I've ever seen mentioned as helping, and am working my way through it to try everything.

      Every day I tell myself I need to keep hanging on, and that it will get better over time, or that eventually a treatment e.g. neuromodulation, FX-322 etc... will help me get things to a manageable level. I would take habituation, although even at almost 4 months that seems impossible, as my sounds change every day.

      Still on my list to try is extended wet fasting, a number of other medications and drugs, a gentler LED red/infrared light that some have had success with, and hopefully some of the pipeline solutions we often discuss, but I still fear I'll be this way forever, and remain a shell of my former self. I've noticed that most people who do improve seem to have signs by 3-4 months that things are getting better, but I've hardly moved in terms of volume.

      Anyway, I suppose that's it for now - this was cathartic for me to write, so I appreciate the opportunity to do so - this site has been a wonderful community and is one of the only reasons I'm able to keep going.
       
      • Hug Hug x 14
    2. TrevorSanders

      TrevorSanders Member

      Tinnitus Since:
      09/2020
      Cause of Tinnitus:
      Noise Exposure/Ototoxic Medication
      Glad to have you on this forum man. Your contributions have seriously helped many, including myself. My only advice would be just to take it day by day. We’re all going to have our silence relatively soon.
       
      • Like Like x 2
      • Optimistic Optimistic x 1
    3. simb999

      simb999 Member Benefactor

      Tinnitus Since:
      nov 2018
      Cause of Tinnitus:
      noise exposure
      Hang in there my friend, at 3-4 months mine seemed to be getting louder and louder. I didn't see any progress until the 12 month mark, now 2 years on and it's still improving ever so slowly.
       
      • Like Like x 3
    4. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      Mine is irregular. I have different sounds plus they go up and down in volume. It took me a long while, so I willed myself to get used to it. For a while everything bothered me, then slowly, it bothered me a lot less. I kept working, but I took a few extra breaks.

      You have to look outside the box to make it work.
       
      • Agree Agree x 1
      • Hug Hug x 1
    5. SoundB0und
      Balanced

      SoundB0und Member Benefactor

      Tinnitus Since:
      March 2018
      Cause of Tinnitus:
      Ototoxicity
      I'm sorry to hear you haven't had major relief from anything you tried. It sucks that the laser spikes you this bad. Because the spikes die down eventually, I feel that you're a good candidate for it working, but if the spikes are unbearable it's not an option.

      By now it seems you've tried more things for tinnitus than I have and I tried many. I had different frustrations, many things that I tried worked well right off the bat but I couldn't tolerate the side effects so I had to quit them.

      The laser doesn't have major side effects beyond possible dizziness and the spikes of tinnitus, so that's what I stuck with and I've had success. Plus I take some other things like vitamins, minerals and probiotics, things that don't mess with the body and brain too much.

      You're an outlier in the sense that you were willing to put your time, money and health on the line to get better. There are no guarantees in life as I've learned. At least you can rest assured that you left no stone unturned, even if you don't end up having success, which I hope doesn't happen.
       
      • Informative Informative x 1
    6. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Thanks - I don't consider myself an outlier necessarily in willingness to invest in a solution - my tinnitus is just insanely annoying, consisting of many tones in each ear and always changing, so if there is improvement to be had, it's worth just about any cost to me.

      I'm going to try a red light LED that a few people have mentioned, which ranges from 600-800nm. I am not anti-laser, it's just that for me it always seemed too harsh, almost like massage on an open wound - for others I'm sure it is of great therapeutic effect.

      If I habituate over time, great, but you only get one life, and this is the single largest detractor to the quality of mine, so I assume I'll keep trying things indefinitely.
       
      • Like Like x 2
      • Agree Agree x 1
    7. twa
      Busy

      twa Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      2017- mild /Sept. 2020-moderate
      Cause of Tinnitus:
      meds/acoustic trauma
      I hope you're feeling a little better. I know you've read through many of the posts on the forum. I would highly recommend reading posts from TomCnyc and jjflyman. They are both very encouraging. They both have had noise trauma/s and are doing much, much better. Something that they both stress is that healing takes time, usually a very long time. Patience seems to be difficult in this situation because progress is so slow. I try to redirect my focus away from the noise and symptoms.
       
    8. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Thanks, I have read their stuff. Honestly I have some good days and the others I'm just trying to cope and basically am suffering.

      If I had started to progress in a positive direction I'd be more reassured, but it feels more like a merry-go-round. The EEEEE I had at the start is totally gone but in its place I have other tones and rapid pulsing which is just as numbing.

      I'm just trying to put one foot in front of the other each day.
       
      • Like Like x 1
    9. twa
      Busy

      twa Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      2017- mild /Sept. 2020-moderate
      Cause of Tinnitus:
      meds/acoustic trauma
      I'm sorry, I know it is hard. I feel much the same way. I also have the EEEEE. Today, I was thinking it's been 3 months since this started.
       
      • Hug Hug x 2
    10. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      I'm going to record my Xanax doses in this thread as a form of catharsis.

      10.10.20 .5mg
      10.12.20 .5mg
      10.17.20 .5mg
      10.24.20 .5mg
      10.31.20 .5mg
      11.03.20 .5mg
      11.07.20 .5mg
      11.14.20 .5mg
      11.24.20 .5mg
      12.12.20 .5mg
      12.18.20 .5mg
      12.26.20 .5mg
      12.31.20 .5mg
      01.10.20 .5mg
      01.12.20 .5mg
       
      • Hug Hug x 1
    11. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      I need to post an update today for my own mental health reasons. I am coming up on 9 months - the exact date of onset was July 25th last year. Fortunately, there is some positive data and real change which has occurred. Unfortunately, my mental health continues to deteriorate and I still suffer greatly, but I want this to be recorded as data for anyone to see.

      The good: I have written about many bizarre symptoms before, and honestly I have to go back and re-read my journal to even remember some of them because they are either COMPLETELY gone, or so scant I forget they exist. Things which have disappeared:
      • Most of the time all direct tactile feedback and pain is gone. At the start I would often talk about a wine glass noise that would physically itch my inner ears and cause burning in my ear canals. This happens so infrequently now, I almost forgot about it. I remember sitting with my family trying to watch TV and my entire body was sweating because of how torturous this inner ear tickle was. I suspect this implicates nerve damage/hyper-excitability - it literally felt like my ears were being manually stimulated by touch at their deepest recess.
      • For the first few months I had ultra high pitched squeaking and nausea induced by mega high pitched tinnitus. This has almost completely abated - my tinnitus is now mostly low or mid pitched, though it is still very powerful. However, I suspect it was worse when it was high-pitched, because I was having mental breakdowns much more often, even though now I still feel like shit. This is a common theme for now - I still feel bad but I believe before it was UNFATHOMABLY bad.
      • For a few months after onset, I had 24/7 continuous rapid atonal pulsing - I remember listening to music and literally hearing pff pff pff over it without it abating whatsoever. I would listen to Mozart and have to focus on the music THROUGH my atonal distortions and tinnitus. Today even though I can still hear it 99% of the time, when listening to music the tinnitus is more in the midground, as opposed to completely occluding the music itself.
      • When driving I would get severe pain in my ears, like a raw, dull ache. While I rarely drive anymore, as it still causes a massive reactive spike, I haven't experienced this raw aching for 7 months or so.

      The bad:
      • My tinnitus is still often EXTREMELY loud in silence - now it is usually a low WAWAWAWA or DOOOOOO noise which feels like it is vibrating my head. It still is loud enough to hear in every environment and sleep is still interrupted by noise.
      • My tinnitus is still reactive to the extent I have to draw baths for myself with earmuffs and then leave the room - showers are largely out of the question.
      • I still can sometimes get a different, indirect tactile sensation - if I listen to moderate volume music, the area directly behind my ear lobe and jaw feels sort of fuller. It isn't pain but it is still sound producing some sort of somatosensory feedback.
      • All low pitched noise, especially fans or air conditioning causes my tinnitus to spike with metallic buzzing/cricket noises. I still can't run my air purifier or be in the same room as my desktop computer without paying a heavy price.
      • I've either developed visual snow or my astigmatism has gotten worse - most of the time text appears blurry now and I get after images very easily from bright light. I haven't had my vision checked for fear of confirming the blurriness isn't something that glasses could help. I prefer to leave the possibility open to remain hopeful.
      • Overall, tinnitus still dictates the course of my life. At 28, I fear my job return to the office after Labor day, as the commute scares the shit out of me, as does the thought of all of the air vent noises in my office. I am not a hypochondriac or prone to exaggeration - I fear sitting in my office and having a mental breakdown, or not being able to hold a conversation with colleagues due to reactivity - again I think this implicates some sort of nerve damage/hyper excitability.
      • Xanax use still trending at once every 1-2 weeks with a desperate urge to try more often.
      I really hoped 9 months in I'd be doing better, maybe at the fabled hiss stage or at least a large reduction in volume, but that isn't the case. As I've outlined, although the tinnitus has become less competitive with certain external noise, and the pitch has changed to generally be lower, the volume for most part is in the exact same range. This is my biggest disappointment. If I could lower the volume, every percentage point would be a point given back to my quality of life. I don't inherently enjoy most days, but I don't want to give up on my family and friends. Real or imagined, their investment in me is my biggest motivator.
       
      • Hug Hug x 7
      • Like Like x 1
    12. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Yes, these posts and other long term improvements are literally gold dust for me. Without that not sure where I'd be at the moment. Hope you are able to get through the days finding some joy here and there :)
       
      • Hug Hug x 1
    13. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Re: blurriness. Could be visual snow especially if you have a lot of static (or even an astigmatism as you said) but could also be a mild form of vestibular illness as your vestibular system is involved in eye tracking.

      I actually talked to a physical therapist not that long ago who specializes in vestibular rehab and she told me (this was in reference to a friend who had these symptoms and a work up so far turned up nothing) that some vestibular symptoms can be a hardware problem and some a "software problem" related to central neuro-excitability. She said for people with the software problem they can "reset" after a year or two of low stress.

      It does make me wonder though if Ebselen could help with that (visual snow too maybe).

      But if you can keep your head perfectly still and not type or scroll up, is it still blurry?

      I remember you saying bright lights bothered you too. I read a case study yesterday (wish I saved it) of a geriatric woman who developed hyperacusis and photophobia at the same time. It took 2 years to resolve her hyperacusis to a mild, fully functional level but her light sensitivity/photophobia resolved, too, at the same time.
       
      • Like Like x 1
      • Informative Informative x 1
    14. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      @GBB, you're almost 9 months in and you write certain things have improved, congratulations.

      You have approximately 5 months until Labor Day. Labor Day will put you at 14 months. The next 5 months should show more improvements.

      Stick with me. I know from experience it takes me 12-18 months to get to a good spot. I am 5 months into a spike. Let's ride this out together.

      Who knows, I have been praying for better treatments or a cure everyday for 30 years.

      G-d bless and keep posting.
       
      • Like Like x 4
    15. Keith Handy
      Dreaming

      Keith Handy Member

      Location:
      Rochester, NY, USA
      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Stress + sleep deprivation + noise
      Hang in there and thanks for the update.

      I'm just about at five months, and while I can spot changes that have occurred (February was its own special little nightmare), it's hard to know if changes are good or not based entirely on how much or little they distress us. So we can look at the elapsed time and say, fuck, this is not where I was hoping to be... but another way to see it is that if there is a forthcoming remission or treatment, it's that much closer.

      (I always look for the success stories that happen a little farther out, but not too much farther out, than my own elapsed time. I find them calming.)

      May the months ahead be better for you.
       
      • Like Like x 2
    16. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Thanks for taking the time to write this. My blurriness varies intra and inter day (weirdly seeming worse after sleep), and in response to your question, it remains even when I keep my head still. It's weird because at the onset of tinnitus I had VS symptoms I no longer have - for example, text would appear to briefly but intensely rapidly vibrate (imagine if a web browser had a rendering issue and the text was flickering back and forth between one position and a small offset really fast; I also had visual static against many surfaces like white painted walls). Both of these have abated to a large degree or completely, but my blurriness has gotten worse. I can't really draw any conclusion but the story you relayed is encouraging :)
       
    17. Matchbox
      Wishful

      Matchbox Member

      Location:
      BC Canada
      Tinnitus Since:
      August 2020
      Cause of Tinnitus:
      Noise Induced, Prednisone (drones), Barotrauma (distortions)
      I definitely noticed a sizeable uptick in my visual snow (which I had before) since getting tinnitus, especially 4 months in (it doesn't bother me though... not even close to what tinnitus and dysacusis is like).

      I decided to try heavy Ginkgo biloba & Carnitine again lately as I just feel like I'm progressively getting worse. I can say my lower bass tones are somehow even lower bass (still loud), ringing is the same volume (like I care about it), distortions still there too... BUT... a lot more hissing / static has joined the club since then.

      The distortions and thuds freaking absolutely suck no matter what time of day or what I do, and I as well dread the return to the "real world"... I can only go about 20 seconds out there before I start hearing tinnitus in objects. At this point I laugh at the ring I developed early on and freaked out about... I laugh and laugh... at this point it would be a joke to have "just that" in silence... when I hear it I literally think "ah, hi there."
       
    18. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      Thanks Ken, I appreciate the positive thoughts.
       
    19. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      Might be worth getting an eye/retinal exam just to be sure you don't have any mild papilledema or anything like that (you probably don't but just to rule that out). Does head position matter when you sleep? Ie does it matter if your head is elevated or flat?
       
    20. Poseidon65

      Poseidon65 Member Benefactor

      Tinnitus Since:
      1/2020
      Cause of Tinnitus:
      A loud live music show
      @GBB, have you tried hearing aids and / or wearable white noise generators? These have been a godsend for me.
       
    21. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      My tinnitus is really reactive - loud sounds make it louder, but I appreciate the suggestion.
       
    22. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      I'm not sure if head position is determinative, or at least I can't measure; I'm an all over the place sleeper who tosses and turns throughout the night, so I can't identify a correlation to positioning vs symptoms. Thanks for taking the time to ask though :)
       
    23. kingsfan
      Mellow

      kingsfan Member Benefactor

      Location:
      Southern California
      Tinnitus Since:
      9-17-20 / 10-20-20 / 3-31-21 / 5-23-21
      Cause of Tinnitus:
      turning everything up to 11
      My vision has been worsening as well.

      Do you rub your eyes a lot or put any sort of heat on them?

      Those can warp the cornea and cause/worsen astigmatism.

      I have chronic blepharitis and thought maybe my warm compresses (though I try to be very careful with them) were worsening my astigmatism. My optometrist thinks it's presbyopia, though at a pretty early age, but doesn't want to evaluate me until I get my blepharitis under control as, apparently, stress can cause presbyopia to fluctuate. Burning eyes is pretty stressful.
       
    24. AUTHOR
      AUTHOR
      GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      I rub my eyes but nothing dramatic. Last time I was at the optometrist about a year ago they said I could get glasses but didn't need them as the improvement was marginal. I may go back to get my Rx checked.
       
    25. Poseidon65

      Poseidon65 Member Benefactor

      Tinnitus Since:
      1/2020
      Cause of Tinnitus:
      A loud live music show
      FWIW the hearing aids do not necessarily have to play particularly loudly in order to help you. For example, the white noise I stream is roughly 40 dBA, which I think would be tolerable for most people. Even at this lowish volume it is substantially helpful.

      In addition, if you used amplification, this can be set to amplify only low-volume sounds, while leaving medium- and high-volume sounds unaffected.

      Just some things to think about, especially if your reactivity improves down the line (which I hope it does!).
       
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