Opportunity Perhaps

Discussion in 'Support' started by SymphonSilencio, Jun 25, 2012.

tinnitus forum
    1. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      In my perception there are few things in this world that are more aggravating than being in tough situation that few take seriously. For some of us perhaps pity is what we want. Others want to be justified in what they're suffering from. While at least in my case I want emotional support that can sometimes only come from somewhat/actually understanding the pain I endure. The thing that has a resounding ring to it when it comes to this complicated situation is Tinnitus.

      I came on here to gauge my brothers and sisters in this plight we all share. You tell people you identify as close to you about this debilitating condition that haunts you in ways that no ghost ever could. Whats worse is that our loved ones normally don't have the capacity to understand what T is like or the level of empathy needed as we continue to attempt to be our best selves. Tinnitus tends to isolate you directly and indirectly until you succumb to its cold embrace.
       
      • Like Like x 1
    2. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      Just know that In the 4 years of having tinnitus I have screamed to the top of my lungs, I have cursed the world under my breathe, cried myself to sleep over loud volume sound that I shouldnt have exposed myself to, took a shower for 2 hours to artificially drown out the madness I knew would inevitably be waiting for me, sarcastically cringe at the advertised remark towards domestic violence/ bullying known as "Silence Hurts", withdrawn from interactions with people that could have become life defining friends or confidantes, knowing that even if I manage to have a wife and kids that one day that one day my always increasing T will be too much for her to handle as she dissolves our marriage while the kids end up traumatized by their father's decline, losing the only close friends I had because of my erratic behavior when I could bare my T no more.
       
    3. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      Each month that went by ate at me little by little until my body could not acclimate to the new found volume anymore. At that point I lost the sense of sleep in every aspect except for perhaps the act of lying down. By the time 6 months go by I had been emotionally, mentally, and finally physically broken. I lost anything I cared about at that point. My physicality consisted of what little walking I could do from the couch to the fridge and from the couch to the bathroom.
      My mentality consisted of mindlessly watching bad movies on TV while I munched on Kit Kat bars endlessly as my creativity had completely left me and my whole inner life was no where to be found. As far as emotionally speaking I could barely show any emotion as even getting angry or putting on slight smile wasn't within my power.

      I had finally become resigned.
      I accepted my fate.
      I gave up.

      But I had a contingency of sorts. Jiminy Cricket wasn't going to get any extra satisfaction from me. The human body is quite a work of art. Eveven though I hadn't actually slept fro the past couple months my body went into a power saving mode of sorts. When this power saving charade finally fell throughand my body failed my completely I was gonna be ready for it.

      Anyway one day I was at the doctors office looking about as miserable as always no matter my futile efforts to put on a somewhat happier facade. A older gentlemen chatted me up asking me why I looked so sullen. I told him that I appreciated his concernbut my problem would be outside his scope of expertise. He countered my remark taking it as a challenge as he said "Try me". I told him I had ringing in my ear and that I hadn't slpet in a very long time.

      He looked at me as he appraised what I had said. He told me never to assume anything about others.

      With that said 9 months later I'm still here. I'm back to more normal sleeping habits. My physicality is back, my energy is finally there again, but most importantly my mentality is stronger than I thought possible.

      You can call me Patient Zero
       
    4. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      With that said my benefactor wants to offer a trial to you all. The trial will be completely costless to the tester. Even shipping and handling will be paid for at his expense. You all can nominate up to 3 people. 3 users will be picked after we have fully evaluated each nominee through email and correspondance on here. The only requirements to be a tester for this trail are that you have to have had tinnitus for at least 2 years and 30 posts minimum on tinnitustalk. I will communicate in finer detail about the things we have to do before the trial commences in the coming days and weeks.

      Someone on here remarked about the idea of "Where are the real people with the actual testimonials on these so-called treatments". Hopefully we can do something to change that.
       
    5. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      All I can say is "Wow!" I read your first two posts before you had entered the last (third) one, and I was really concerned about you. After all, we're here for each other on this forum, because we all share a common bond --- the curse of tinnitus. No one else could possibly understand what it's like without experiencing it firsthand. I was pretty worried about you.

      But, after reading your third post, I was totally blown away! You are living proof of what most of us come to accept after living with T for awhile --- (1) we are much stronger than we think we are; (2) we must live today with what we have been given; (3) we will survive this thing; (4) with time comes acceptance and, possibly, habituation; (5) we should look at this thing as your subject line suggests: "Opportunity Perhaps".

      I especially liked your comment, made by the older gentleman, who said you should "never assume anything about others"!! So true; and, we should never assume anything about ourselves, either! You have proven how strong you really are -- you are sleeping again, your habits are regular again, your energy is back, and you have grown in so many ways.

      Patient Zero --- you are a survivor!!

      There is a lot of tinnitus research going on out there right now, some of which looks promising. Don't give up; go on with your life. One of these days, there just might be a cure out there!
       
    6. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      Unfortunately I do not qualify as I have only had this "curse" for 2.5 months but been suffering 24/7 since then....If you revise your requirements to include people who have had this less than 2 years and less than 40 posts (I'm working on it) then I would be interested....

      And Karen, you too, are a survivor!
       
    7. calin
      Inspired

      calin Member Benefactor

      Tinnitus Since:
      Oct 2011
      Why 2 years of tinnitus?
       
    8. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      By posts I mean message count so your certainly okay there =) I think we can be flexible on everything I was simply trying to keep things objective as many people can possibly go for the trial and after receiving are never heard from again as there is nothing binding when we do send the kit. My boss prefers a little seniority if possible at least in the beginning. If the first trial goes good with the first 3 we will do another wave with more people.

      It really is just a seniority thing. Anyway I have spoken with him and we've agreed its okay to keep this more open. As long as you have 30 message count you can nominate yourself and 2 others.
       
    9. calin
      Inspired

      calin Member Benefactor

      Tinnitus Since:
      Oct 2011
      Is this an at home treatment? How much time does it involve?
       
    10. Lorrie

      Lorrie Guest

      This sounds like a scam. Why not just say exactly what the treatment is? Why the secrecy?
      People are desperate for cures here.
      Teasing people here is not playing fair.
       
    11. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      Yeah its a at home treatment involving Sound Therapy. Well the duration isnt exact to any degree. I'd say you'd begin to see lowering of the volume in your T within 2-3 months of use give or take. Its completely non-invasive and hassle free so you shouldnt have any problem using it for any period of time.

      I expected this sort of response as well lol. Scams usually want money up front or personal information that will lead to money down the road. I'm not asking for any money at all in order to enter the trial. I have no interest in your social security number, bank account #, drivers license or any other identity stealing information.

      Secrecy? There isnt any secrecy here. I started my post off the way I did because thats the way I do things. Anyway like the many treatments that comes before it and probably after it, it is yet another Sound Therapy. I'm sorry to break this to you but cures don't exist even for most basic ailments that plague human life. You and others reading what I wrote about my story may think I am simply sensationalizing things for attention or to scam people out of their money. So be it. Skepticism is a valuable trait if executed well. Evaluate my messages and my actions (if at all possible) before you bring judgment on me. I apologize for the teasing as I did not intend to do such a thing.



      As I said before I'm looking for individuals to try out a newly developed sound therapy of which I've used for a long duration. Without trying to over hype it I would say it has stabilized my T to the point where I live my life normally again as of now where previously I had an unlivable volume that I dealt with. Now people are gonna say to themselves "How is that possible to have a unlivable volume". The volume that tinnitus can go has no boundaries. Added with the fact that I am probably in the higher percentile of hyperacusis affliction my tinnitus was raising volume at the drop of a hat. I knew that no matter how careful I was there was going to be a excessively loud noise somewhere in the world that not only would cause me pain but make my tinnitus that much worse by the end of the day. The human body is strong even in terms of putting up with tinnitus but even it has its limits. BUT for the record I'm not saying this a cure and I'm not gonna try and put down other potential treatments. All I can say is that it worked for me and the man who introduced this to me is my hero in more ways than one. If anyone has any other questions let me know.
       
    12. calin
      Inspired

      calin Member Benefactor

      Tinnitus Since:
      Oct 2011
      Well said.

      Some of us have tried treatments/measures that have temporarily increased T or added tones. Would this therapy be capable of such a thing? I have a feeling I know what you are going to say, but hey.... had to ask! ;)
       
    13. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      I can only divulge from what I have experienced as my boss won't let me read his notes in which I respect his stance. My ears themselves seem to have healed to some degree but during that process there were "readjustments" of sorts and I did have periods of time where I perceived my T as louder. I dont know how T works for others but in my case before doing this sound therapy it went like this. I'll put years of T in 4 levels.

      Level 1 - Tinnitus only increased in volume. Not much tonality or accent change
      Level 2 - Tinnitus increased in a more interval like manner and noticeable secondary accents added to current T
      Level 3 - Tinnitus straight volume increase was less but the nature of the T began to change and the secondaries kept adding on as if a symphony were being assembled.
      Level 4 - Tinnitus straight volume was minimal but the intensity increased. The thickness of the sound is what increased. Its as if the ecosystem of my ear becomes the T itself. My hearing became so bad it was akin to trying to perceive light at the end of a long, winding cave.

      I know promises are worth nothing on the internet but I promise that there wont be any actual increases in T as a result using this sound therapy. But Calin you are correct that during what I believe to be tinnitus reconfiguration that there may be a perceived increase in T. Many of the tones that I garnered in my increases during level 3-4 of my tinnitus have been rehabilitated at least in my perception.

      Does this answer your question well enough?
       
    14. calin
      Inspired

      calin Member Benefactor

      Tinnitus Since:
      Oct 2011
      I suppose it does.

      Sounds like this therapy is rehabituation .... sort of a remapping. yes?
       
    15. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      does sound interesting...
       
    16. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      I dont think any amount of explanation will really help in this scenario. You really have to experience it for yourself in order to grasp it. All I can say is that it isnt habituation of any kind. It wont give you the ability to tolerate it any better. All I can say is that my tinnitus had hit a point that IME wasnt TRT-able anymore. I was in a fatal insomnia sort of state for 5-6 months. No amount of rehabituation was gonna fix that. My volume of T was simply too loud for myself to "actually" lose consciousness.

      I'm glad you think so lol. If you guys are the only ones interested in even simply saying something in my thread I suppose you may have to be the testers anyhow if still interested. Dunno if Karen would even be interested and considering her main problem to be pulsatile I dont know how effective this therapy would be for that.
       
    17. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi --- I'm rather "gun-shy" about trying new things for my T, because certain things seem to exacerbate the pulsating. I've tried a hearing aid, with masking, twice, and both times it made things worse! That's why I haven't exactly jumped on the band-wagon. If there were any way you could convince me it would help my pulsating, I'd consider it.
       
    18. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      I'm game
       
    19. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I don't really understand the nomination part of it. Why? Wouldn't it be better if people could freely request to be considered for the trial and then you make the decision based on your requirements (duration of tinnitus, history, etc.) whether they make the cut.

      I'm interested in the details of this treatment, though. Does it differ from notched music therapy, or programs like Tinnitus Tamer, or the infamous UST.

      I understand you might not be able to give much information at this point, but in the future it'll be interesting to know what the specifics of this are.

      Initiatives like this sound good in general to me thou. (As long as it's not any form of bait-and-switch.)
       
      • Like Like x 2
    20. calin
      Inspired

      calin Member Benefactor

      Tinnitus Since:
      Oct 2011
      I have pulsing T.
       
    21. DezDog
      Angry

      DezDog Member Benefactor

      Tinnitus Since:
      01/2009
      > If you guys are the only ones interested in even simply saying something in my thread

      I think if you want a serious response, you will need to rethink your approach. My own suggestion (take it or leave it) is to delete this thread, and start a new one.

      Same or similar title (perhaps "Subjects required for new treatment"), but in your 1st post explain what you put in your 4th and 5th posts;

      1. that you have been receiving a new type of treatment developed by X
      2. that you now are employed by X
      3. the details of the trial (the 4th post)
      4. a FAQ that you can compile from the questions you've had so far. Keep this updated by editing that top post in the thread as you receive more questions.

      Personally, I think I'm managing, and I am lucky enough to be starting TRT treatment tomorrow (thank goodness for the NHS).

      DD
       
    22. Karl

      Karl Member Benefactor

      Location:
      Chicago
      Tinnitus Since:
      10/2011
      S.S. -
      You're a very talented writer. Ever consider writing a book involving a character with tinnitus?

      So, let me translate this into Chicago-ese: Ya met dis guy...I mean, you met this old man at your doctors office, and he gave you a cure? You're Patient No. 1, and you need others to try the old man's cure?
       
    23. exodus
      Cold

      exodus Member

      Tinnitus Since:
      05/2008
      hi there,

      i would be interested in it if there is any chance to reduce this infernal noise.

      let me know if i m in or not

      thanks
       
    24. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      The nomination thing was simply an idea to see if there was anyone in the background that needed this more in some sense or another. I understand what your saying and it probably will work better that way.

      Taking a gander at the notched music therapy and the tinnitus tamer I cant really say they resemble either. Tinnitus tamer seems more like TRT from what I saw. I think TRT is great if your very careful with your T rituals and don't have hyperacusis bringing up the rear. I acclimated to my T only using pink noise and using peaceful methods like meditation. The problem was that I couldnt keep acclimating to new volumes and tones. At a certain point of seriousness TRT seems absurd. Its a very different scenario when you have a T of something like 20-30db and a T of something like 70-90db. Cant say its like notched music either because it isnt personalized in any manner. There is no customized frequency of the users choice.

      Its hard to do actual studies recognized by the scientific community as it seems like many are not willing to be put in a situation where they can possibly be given a pill or a treatment that is placebo or not the main prize of the their work. Thats my opinion anyway. We are simply looking for users to try out his discovery so that when and "if" its a success we can eventually bring it to market in a cleaner package for a set price. Trust is of utmost importance even if in the clearing people find good results. What happens if people are cautious right when we bring it to market and we decide to bait and switch. The few users who decide to jump in head first will be the victims but then those victims will come straight back to tell you guys of our wrong doing. In the age of internet you cant treat anyone badly anymore as disgruntled customers can and will come back with a vengence.
       
    25. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      I tried to look into it but how do you delete a thread on this forum? I dont think there is any harm in leaving this thread up but I will make a new one being more specific towards the trial.

      I really appreciate the outline and will try to do my new thread with that outline. Btw how do you edit a post after a certain period of time? Doesn't seem to let me. I hope the TRT works out for you.


      Its hard for me to accept that compliment because I love conceptualizing but my writing is rarely up to par but thank you sincerely.

      Oddly enough I do have a character I conjured up that would have tinnitus in a futuristic setting (He would be one of the leads but T isnt the premise of the story) but told in a more interesting manner that a reader could find enjoyable hopefully. It is a little hard to imagine a person wanting to read about a main character with tinnitus though haha. Maybe you can give me some ideas

      Well he isnt old per se more like older 40's maybe 50's. I used to be and at times still am one of those "The world is out to get me" sort of individuals. The fact that I carry a negativity and paranoia of that magnitude while having things like T and hearing sensitivity I think I could give Vincent Van Gogh a run for his money. Fairy Tales don't happen I always have to tell my dreamer side. What happened to me after I met this "old man" might as well have been a fairy tale I always tell my realist side. But I cant really know for sure if I'm the actual first patient although it is my prerogative to get others to try out his creation.
       
    26. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      I will keep you in the loop. Thanks for the interest.
       
    27. Karl

      Karl Member Benefactor

      Location:
      Chicago
      Tinnitus Since:
      10/2011
      S.S. -
      If you want ideas, perhaps I can help.

      Before I got tinnitus, I was taking jazz guitar lessons. I wrote a song that I called "The Spy With Tinnitus", which was pretty cool. My teacher and I played this tune for a couple of lessons, then we went on to the next thing. I quite taking guitar lessons, because of my tinnitus. I still play, but at my own pace. My teacher is great, but he put a lot of pressure on me.

      I always hated the name of that song, "The Spy With Tinnitus", because I hate tinnitus. If someone wrote a book with a character who has tinnitus, it would probably drive down the sales.
       
    28. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      Yeah there seems to be quite a trend of songs being dedicated to tinnitus by people who suffer from it. Thing is most of the stories I found the most compelling whether from movies or books or anime are ones that have characters who have a glaring problem or flaw that is either a strength in disguise or something that has a sort of utility as the story develops.

      Even tinnitus could be turned into an ability of sorts fictionally speaking. Anyway that book idea i had for this particular thing is far from developed enough to write at this point.
       
    29. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      SymphonSilencio, what is the time frame is this "opportunity?"
       
    30. SymphonSilencio

      SymphonSilencio Member

      Tinnitus Since:
      10/2008
      I need some clarification as to what your asking please.
       

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