Severe Tinnitus Since 1978... Please Tell Me There's Hope.

Discussion in 'Introduce Yourself' started by David Young, Jun 25, 2015.

tinnitus forum
    1. David Young
      In pain

      David Young Member

      Location:
      Torrington, CT
      Tinnitus Since:
      07/1978
      Cause of Tinnitus:
      Bicycle vs Oldsmobile Incident
      Hi...

      I found this site about 3:00 a.m. last night... up all night again... I haven't had a quiet moment since I "woke up" in a hospital bed in 1978 and there are days I think it's going to drive me out of my f*@#ing mind! I've asked pretty much every doctor I've seen ever since and been told there's nothing they can do every time...

      Guess I can't post a link as a new member, so I'll post part of my "back story" from my blog below... here's my intro...


      -- excerpt from Enduring Pain With Patience...

      OK, to start with, I’ve been in a deeply intimate relationship with Chronic Pain for over two decades and counting at this point… and, as I discovered pretty early on, Chronic Pain doesn’t work alone… along for the ride, CP’s Partner-in-Crime, the mind-bending Chronic Pain is joined by soul-crushing Severe Depression (in my case, re-diagnosed a few years back as a Major Depressive Disorder), but at least it helps break up the monotony of the constant pain. Also in my case, there’s a variety of other conditions and ailments, which all work together to make up the required daily pharmacopoeia that I manage to choke down and inject at various intervals every 24 hours.

      The roots of my Pain can be traced back to the summer of 1978 when I side-swiped an Oldsmobile while riding my 10-speed bicycle. As you might expect, the Oldsmobile won… I was thrown off my bike and landed on my right side about 10 or 20 feet away on the pavement… (missed the nice soft grass at the side of the road by about a foot, dammit!)… landed on my right hip, then arm, then head… it happened in the late afternoon but I can’t remember anything from about Noon through 9:30 pm… That little bumpy flight and sudden stop knocked most of my spine out of alignment and the violent meeting of head and pavement had two results…

      First, most of my early childhood memories are just gone — scrambled my hard drive apparently… some of them are there… hazy and a bit fuzzy around the edges, but there… quite a few I’ve been able to “rebuild” from family stories, old photos, and 8mm home movies… but there are still a considerable number of blank spots… whole voids of time between flashes of partial memory…

      Second, from then ’til now, 24/7/365, I’ve had and still have a constant, very loud, high-pitched, broad-spectrum ringing in both ears… and the old saying that the silence is deafening… well they got that one right! The quieter it is around me, the LOUDER it is inside my head… that’s why I always need to have a fan going or music playing or the TV on… or a combination… but no matter how loud everything is, the ringing is always louder… some say that constant ringing can be enough to drive one crazy… while it would be a fairly short trip in my case, the constant ringing… all day… every day… every minute of every hour… for 35 some odd years… I can honestly say that saying definitely has some merit…

      Alright, moving on from the beginnings to the here and now…

      Let’s see, from the top down… the ringing ears and memory thing from above of course, plus another little goodie, most likely left over from that concussion and two other lesser concussions, at least according to the Neurologist I saw… I was having these blinding, incapacitating pains, usually right at or very near my temples, left or right, didn’t have any rhyme or reason… all of a sudden it just hit… like someone driving an ice pick into the side of my head… My only option was to just stop everything and wait for it to pass, which was usually anywhere from 10 to 20 seconds to a couple minutes…

      It really felt to me like a migraine headache, time-condensed and compacted into one spot on/in my head. The diagnosis and sage advice from the Neurologist, after some scans and poking with nasty needles and chanting incantations while throwing old bones on the floor, was that they’re called “Ice Pick Pains” or “Ice Pick Headaches”… so-called because (DUH) they feel like having an ice pick driven into your head… he told me they can occur once or multiple times a day and they are a condition unto themselves… that is, there is no underlying cause for them, they are both the symptom and the condition. He also told me they didn’t know what causes them and that I’d just have to live with them… of course, that was in the very early ’90s, not too long after they were first identified and described by modern medicine, so maybe there’s more info now… but what I’ve read here and there indicates no, not really…

      -- end --


      After that the litany moves on to describe herniated cervical disks, torn lumbar disk, arthritis in facet joints, lumbar spondylolisthesis, lumbar spinal stenosis... blah, blah, blah... yadda, yadda, yadda... but the head trauma description is pretty much over at that point... The only other thing I should maybe add is about the three concussions...

      The 1st one -- slipped on the ice on the driveway... feet shot out from under me... landed flat on my back, back of my head whacked into the pavement... blacked out for about 20 - 30 minutes. (Cool story for later if anyone's interested - this is the only time I remember everything right up to the moment my memory went bye-bye... a very odd experience and sensation...)

      The 2nd one -- walking through the woods one night with friends... walked straight into a tree and gave my head another good whack... not sure if I hit it forehead on or temple on... blacked out for about 45 minutes.

      The 3rd one -- the "big one" described above... blacked out for 9 1/2 hours.

      Never lost consciousness during any of the three... I was "awake", up and walking and talking each time, I just have no memory of it. Now I live in fear of ice and snow and wet floors... I've asked a few of my doctors about the consequences of any further whacks to the melon and they've told me avoidance is my best bet... that if it were to happen again I could black out again for an indeterminate amount of time or I could slip into a coma...

      Believe me, I'd be lying if I said I haven't considered that as a viable alternative when my pain levels jump up by an order of magnitude or three... but for the most part I really try to remain upright whenever possible... which is unfortunate since I've got almost no sense of balance left, more than a few of my meds do cause extra dizziness, and thanks to nerve pain, neuropathy (peripheral and diabetic), and a mal-union tib fib fracture in my right leg, I spend a fair amount of my time fouled up by extra-thick carpet nap or extra-large particles of dust proving, as I hit the floor, that I aint nothin' but Gravity's bitch... Such is my lot in life... but I digress...

      So, please, if anyone out there has any bit of good news or tiny glimmer of hope, I could REALLY use it! Any and all assistance will be most gratefully accepted. Thanks for your time and attention.

      Peace,

      Dave
       
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    2. Sailboardman
      Frustrated

      Sailboardman Member Benefactor

      Location:
      Florida
      Tinnitus Since:
      04/21/2014
      Cause of Tinnitus:
      Sensorineural hearing loss right ear.
      Dave, you deserve a medal of courage! Man, survivng all those years of pain and T, you're my new hero!

      Wish I could say that a cure for T Is gonna happen immediately, but maybe in a few years? It's a slippery little monster, that's hard to nail down, apparantly.

      You should be wearing a "brain bucket" constantly, to avoid future whacks to noggin! I wear one when I ski, cycle and windsurf. Saved my bean from getting cracked open, many times.

      May the force be with you!

      Sailboardman
       
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    3. Man I was going to chime in as I started reading your story because I too have chronic pain and T..plus hyperacusis..but wow, you're a real warrior huh?! That's alot of hits to the noggin, no wonder you have T. I also was diagnosed with PCS that left me with "chronic atypical migraine" but I don't know if Neuro is right about that...anyways..

      Well yea you are certainly right on all accounts..CP = Depression and constant ringing or as in my case constant sound sensitivity plus ringing is enough to drive you insane but I am only 2 yrs in..You've been dealing with this my entire lifetime...literally..

      Well good news is there may be a drug on the horizon to treat T, but I couldn't tell you when or for sure. It is Autifony. Huge section about it here at TT. That's the glimmer. Otherwise you are doing what we all do, suriving however we can.

      Anyone suggest Trigeminal Neuralgia? The 5th cranial branch sits right above your temples and it's ice pic or lightning strike pain.

      Anyways...just want to say welcome..it's a great place to learn and share and all that...and yes, I'd love to hear your story! ( I like cool or interesting ones)

      So welcome again and sorry for all your pain! Maybe you will learn something here that will help your T at least. If anything we try to give eachother good laughs so to feel better about our crappy lot in life lol

      and some are mild and go on to get better and many habituate over time..
       
    4. barbara r.
      Balanced

      barbara r. Member

      Location:
      Florida
      Tinnitus Since:
      09/2009
      Cause of Tinnitus:
      prolonged loud noise
      I assume you're asking about the T. My ENT, before handing me back to my Audiologist for Widex hearing aids, said to come back to him in a year, because he may have a pill by then for T. Don't think you need another pill, but he's working with a British research company on a pill. Anyway, kudos to you for survival. Keep your sense of humour, and peace be with you.
       
    5. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      So I take it you have not habituated your tinnitis since 1978.?

      There is also a new epilepsy drug that can work to reduce T. It would be very interesting to see if it works on long term T - are you willing to give it a shot....

      ITS called........wait for it................................................Trobalt.
       
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    6. Ken219
      No Mood

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      @David Young Nice beard that must take up some your time? I believe modern medicine is advancing faster and shorter frequencies. I assume medicine is what helped you stay above ground all these years. I will admit without my current meds I could not handle day to day life. God bless and hang in hopefully the future is bright.
       
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    7. jimH
      No Mood

      jimH Member Benefactor

      Tinnitus Since:
      30 years+
      Cause of Tinnitus:
      Acoustic trauma
      Welcome to the forum, Dave!

      I too have had Tinnitus since 1978, Although, after reading your story, I haven't experienced anywhere near the degree of suffering that you have.

      Having Tinnitus for as long as we have, you'll really appreciate this forum. That's because you'll no longer feel so isolated and alone in having to deal with it. Additionally, there are a lot of decent people from around the world here that share their experiences, methods of coping and encourage one another.

      We have @Markku to thank for TT. As time goes on, I believe that you'll appreciate the forum even more.

      That said,......Welcome Aboard!
       
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    8. David Young
      In pain

      David Young Member

      Location:
      Torrington, CT
      Tinnitus Since:
      07/1978
      Cause of Tinnitus:
      Bicycle vs Oldsmobile Incident
      Thanks for the warm welcome... and the info... it sounds like there might be some real actual hope for the first time in my experience! :) As for my experience... yeah, I've had... let's call it an interesting existence thus far... it's gotten pretty rocky and pretty hairy from time to time... beard notwithstanding... The T, CP and MDD have made for some challenges... and some stretches of absolute Hell...

      A few weeks ago I hit a particularly rough patch... after 3 months of absolutely hideous pain from my neck thru my right shoulder down and thru my right arm and hand... aching, burning pain every second I was awake... which for me is about 22 hours a day... every day... trying to find any position that would provide relief... and failing miserably... After all tha,t time I just broke... and I spent one day chasing opioids (morphine and dilaudid) with Yukon Jack and moonshine... NOT a good combo! Woke up in the ER... spent a few days in the ICU... a couple more on a regular floor... scared the hell out of my wife and son... and myself...

      On the plus side, there's no more meds and mixology in my future... I learned my lesson... you dont have to hit me with a 2x4 more than four or five times for it to sink in... Weirdly, my first day home I found an anonymous quote online that read, "Today is the yesterday you worried about tomorrow." Pretty much says it all...

      Oh... and the weird story I mentioned in my original post... The first time I whacked my head, I slipped on the ice and the back of my head slammed into the driveway... I remember looking up at my friend looking down at me and feeling a huge headache starting... My friend held out his hand and I grabbed it and sat up... that's when everything went wonky...

      From what I've learned about concussions and head trauma, I can only assume that when I sat up my cranial fluid shifted and my brain bounced around a bit... and I clearly remember that's when I had a major reality shift... Everything in my field of vision just rotated 45 degrees clockwise, then slid off down and to the right... and there was nothing but blackness behind it... The next thing I remember, I was sitting on my friend's sofa and he was handing me a cookie... Definitely a fairly freaksome experience for a kid... I remember totally freaking out, running all the way back home, and climbing into the familiarity and security of my bed... and having a really bad headache for a few days...

      Well, that's about it for now... I need to go lay down for my daily couple hours of simulated sleep... I use a Brainwave Entrainment MP3 recording called "4 Hours Sleep In 40 Minutes" when I "sleep" and I think that has saved my sanity... such as it is... ;)

      Peace,

      Dave
       
      • Like Like x 1
    9. Thanks for sharing Dave :)
       

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