July 10 — Tinnitus Came Back / As of September 3, Tinnitus Again Almost 90% Gone

Discussion in 'Success Stories' started by heartohelp, Sep 5, 2016.

    1. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      That's a very interesting theory. I wonder if it's possible to get rid of the hyperactivity even when the hair cells didn't heal.. the way I was understanding it so far is that the damaged nerves cause a "glutamate storm" which brings the auditory cortex into an excitatory state... hence that's why drugs that enhance the activity of GABA receptors can reduce the volume of T for some and calm the "storm".
      But this would most likely only work as long as you are taking a drug.. but what happens when T naturally disappears? I don't think that this is just a "spontaneous" remission out of nowhere, I mean something has to cause this.

      So I think the question is 1) does the hearing loss persist, e.g. the hair cells are still damaged/dead and still the hyperactivity went away on its own for some reason. (the reason for this could be found in your hypothesis?!)

      or 2) the damage actually healed naturally and the hyperactivity is going away as a consequence of the healing processes and the now again working "communication", but this processes as this experiment shows, takes some time.
       
    2. Vinnitus
      Tired

      Vinnitus Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      28/04/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Hello Emmi,

      Yes, as far as my current understanding goes; you are right about the release of glutamate upon noise trauma. This glutamate, when released in excess amounts, irritates (hyperexcites) the neurons and initiates cell death (apoptosis). The glutamate is however only produced in the first few hours to days after the noise trauma, hence that steroids and other anti-inflammatory agents (Vit. ACE+Mg; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1950331/) often only work in the initial period after noise trauma (up to a few days), as they act on reducing glutamate-toxicity.

      The effects of glutamate-toxicity and resulting cell-death are down-regulated by the potassium channels (http://www.sciencedirect.com/science/article/pii/S001457931000061X). When these potassium-channels are not functioning well, I can imagine glutamate has the opportunity to hyper-excite neurons without many obstructions as the balance is disturbed. Maybe something genetic is at play here too, and maybe this could explain why some are more susceptible to contracting Tinnitus, while others are not.

      I am not sure how and even if the potassium channels play a role in Tinnitus disappearing after some longer time, maybe something else might be at play in that case, but seeing as the potassium channels calm down the neurons and the brain is ever-changing, we cannot rule out the possibility the potassium channels play a role in this and these balances might be restored after some longer time (unless some genetic components prevent this in some persons).

      Regarding your questions; I think Tinnitus can be seen separate from the hair-cell damage (but it is a trigger), as there are for example deaf people with no Tinnitus and people with noise induced hearing loss with no Tinnitus. Perhaps some gene inhibits the correct working of the potassium channels for us Tinnitus-sufferers, which makes us more susceptible to developing Tinnitus upon (traumatic) hearing loss. Any cell-death releases glutamate, which might explain why Tinnitus appears in so many scenarios (accidents with physical injury, or even idiopathic as cell-generation and death both happen all the time in our brains). If the potassium channels aren't functioning well, perhaps this results in the hyperexcitability and hence Tinnitus.
       
    3. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      Hi Vinnitus,

      this sounds quite plausible to me. At least I felt that most people who had noise-induced T and tried Retigabine had some success with it. Of course it's too small of a number to draw conclusions out of this.. but still it seems to have some effect.

      There are just so many question marks.. is hearing loss only a trigger? Is it important what kind of hearing loss occurred; sudden loss of considerable amount of input (what would cause T) vs. very slow loss of input gradually over a long time (which would cause no T) ? Would T resolve in any case, when the hearing loss is resolved or does it persist after a certain amount of time, cause the brain "learned" to produce T?
      Certainly people who develop T seem to have a vulnerability for it, as you said not everyone develops T, when HL occurs.

      I can look this up later, but do you maybe know where there is the connection between GABA and potassium channels? Both seem to have a benefiting effect on T, I guess because they both act on glutamate?! I don't really know.. but I was just wondering if there is a link between those two.

      Man, this is so complicated. I just wish I would have been given steroids. :meh:
       
    4. Vinnitus
      Tired

      Vinnitus Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      28/04/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Emmi,

      Those are indeed interesting questions, and I like to theorise about them. There are however so many unanswered questions still, that it's just that; speculation.

      I believe hearing loss is one of the many triggers of Tinnitus. I guess everywhere in the brain where cell-death is involved, hyper-excitation of neurons has a possibility to generate some excitation-related disorder. Perhaps it depends on the location of the cell-death and consequently the hyper-excited neurons what disorder will arise. Tinnitus is perhaps caused by hyper-excited neurons close to the auditory pathways and they are hence "audible".

      It remains to be seen what happens once hearing is restored (if thats enough to calm down the neurons) or if other processes need to be involved to calm down the neurons (and Tinnitus can be seen separately from the hearing loss). The more I read, the more questions I have. It is a diabolical puzzle indeed.

      I'm not too well-read into the role of GABA in relation to potassium channels currently, so I'm sorry to say I cannot provide any information on that. It certainly has my interest, but I will need to look into it more.

      On a more practical level; I see you have had Tinnitus for quite some time now, almost a year, right? Did you notice any changes/improvements/worsenings in your Tinnitus levels over that time?
       
    5. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      @Vinnitus

      Another connection, that is quite interesting.. Tinnitus and floaters. Do you have floaters as well? I do, first noticed them 2 years before I got T. Since floaters seem to stand in relation to potassium channels, I think this goes into the direction of your theory, that people who develop T are prone for it because the potassium channels might not work correctly.

      Another member of TT said his doctor explained him this is the reason why he developed floaters after using Trobalt:

      "If the increase of the drug is too fast your system can not compensate for the change. Then the drug has led to open potassium channels in a way too strong. This means that the vitreous humor has not received active substances which have ended in other parts of the system (probably neurological system). This means that your eyes have suffered an immediate dehydration process. You have not had a vitreous detachment, but an absence of key elements that keep the vitreous compact. This has resulted in an immediate dehydration in the vitreous humor and you have manifested floaters."

      Although I have to admit, I don't fully understand the answer of the doctor.. and it seems that Retigabine reduced T in some, but increased floaters, whereas I would think that floaters and T should act in the same direction, e.g. increase in T & increase in floaters or reduction in T & reduction in floaters.

      But somehow I don't think it's a coincidence that people with T often have floaters and both seem to be related to potassium channels.. it's a diabolic puzzle, in deed.

      In general I am doing way worse than in the beginning, but this is because I was stupid and worsened my T and I have a very hard time forgiving myself. I am sure if I would have known what I know now about T, my situation would be much better. But overall for the last 12 months my T in deed changed quite much. First 6 months it was very mild, then very bad for 1-2 months and after that it started to get slooowly better (but not back to the old base line) and the ring changed to a hiss. So I feel like something is changing, but it's SO slow. And you? Did you notice any change?
       
      • Creative Creative x 1
    6. Vinnitus
      Tired

      Vinnitus Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      28/04/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Hello @Emmi
      I do indeed have some floaters. They developed a long time before I got my Tinnitus. I am not sure if Tinnitus and floaters are directly related or if floaters are related to potassium channel malfunctioning. Hence I do not exactly understand the comment of the doctor.

      As far as I know, floaters are caused by detachment of the vitreous humor within the eye as a result of the ageing process. It is hence a quite common phenomenon for people to develop at least some floaters when they age. For most it's not troublesome and easily ignored (contrary to Tinnitus in my opinion), except when the floaters develop excessively or in very discomforting areas, like right in the line of sight. It could be that one of the side-effects of Retigabine influences this process (possibly speeding it up) and perhaps cause some form of vitreous dehydration, but I am not aware of a direct link with the potassium channels.

      Maybe there is some confusion with the "visual snow" phenomenon, which is seen as a visual variant of Tinnitus? I believe the visual snow phenomenon has to do with hyperactive neurons as well, but in the visual system instead of the auditory system. As we know neuronal behaviour is regulated by potassium channels, malfunction or imbalance can cause "visual tinnitus" manifesting itself as visual snow. (http://www.sciencedirect.com/science/article/pii/S0967586815006530).
      I know what you mean. I had a hard time forgiving myself for going to that one concert that changed my life. I had Tinnitus before (it went away), I should have known better... Yet here I am. You think it will not happen to you in some oblivious way as you see people having fun and going out around you all the time and many more times in a year than I do. Yet, I should have had the ear plugs on me and put them in, but the idea of visiting the concert was a rather spontaneous one. I went unprepared and now face the consequences of that decision. I have been through that phase.

      But hey, to keep things rational, I tend to think about it like this; apparently this is my vulnerability, and surely we are currently living in a noisy society. It probably would have happened to me anyway at some point in some way, because avoiding loud noise is almost impossible these days without locking yourself up in some way. That thought tends to comfort me and I have ultimately found forgiveness for my deed. Don't waste your time for too long in the "what if's", Emmi. It is a fruitless but immensely tiresome endeavor. I hope you will find forgiveness for yourself as well.
       
    7. Vinnitus
      Tired

      Vinnitus Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      28/04/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I see I forgot to answer the last questions. I find it very hard to say if something is happening. My perception of the Tinnitus changes almost daily, yet I think the Tinnitus itself doesn't change so much. I currently perceive it as a hiss though, while it was a high-pitched tone at first. Quite like yours actually. My audiometric tests returned within normal tresholds (one 20dB dip at 2Khz in the right ear) and I don't notice distortion or reduced hearing per se. How about your audiometric results?
       
    8. AUTHOR
      AUTHOR
      heartohelp

      heartohelp Member Benefactor

      Tinnitus Since:
      6/2008
      Cause of Tinnitus:
      Loud noise exposure
      @PrizeFighter23 @John Meyers @Vinnitus @Path Maker @Tom Cnyc and everyone else.

      Has anybody had an gains or loses in your recovery for T these past few months? Any positive or negative feedback you would like to share? Please update and share if you have any news. I have recently spoken to someone hear who PM me and said back in September his T came back, but as of recently (we messaged about a day ago) he has said his T has drastically improved within a 1+ month period.
       
    9. Vinnitus
      Tired

      Vinnitus Member Benefactor

      Location:
      Amsterdam
      Tinnitus Since:
      28/04/2016
      Cause of Tinnitus:
      Acoustic Trauma
      Unfortunately, there's nothing concrete to report for me. Sometimes I think I'm improving, only to get slapped in the face later when Tinnitus returns to it's former volume. Maybe overall my good days are improving over the bad ones, but it is hard to say really. I should keep a journal on it to get a better idea probably.

      This person you talked to had Tinnitus before? Was it also noise-induced? Are the improvements structural or is he or she just having some "good days"?
       
    10. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      My audio-grams show no detectable hearing loss (until 8khz).. so far I have not found out if the higher frequencies are affected or if it's hidden hearing loss..

      @jjflyman do you remember how your improvement developed over time? Like how did the T change? Was it just getting softer over time or changing its frequency? How long did it take until it completely subsided? Did you have other symptoms as well, and if so how did they develop? And were you just waking up without T one morning.. or in which kind of situation did you notice that it was gone?
       
    11. AUTHOR
      AUTHOR
      heartohelp

      heartohelp Member Benefactor

      Tinnitus Since:
      6/2008
      Cause of Tinnitus:
      Loud noise exposure
      @Vinnitus

      Hey dude. The person I spoke to also had a post here on tinnitustalk.com I think back in September of this year. Nobody responded to his thread so I did and also private messaged him. To be honest, I didn't think much of it because I felt like the person would not respond or had left tinnitustalk.com forums completely. However, I did receive a message from them earlier this month, and to my delight they too have gone into remission regarding their T and seen massive improvements over the course of several weeks.

      Quick update on my part. I think as of this moment, I am certain I am 99% healed from my second bout with T. I no longer have T after playing badminton or going to the gym and sitting in my car (in my previous post I noted how I would hear T after strenuous exercise for a couple of minutes before it would fade).

      More so, since this past Sunday, I came down with a really bad cold and I'm still very much congested as of this time. What I have noticed though is my T has not spontaneously returned even though my body is in a weakened state. My thinking was my T would somehow return slightly since I am fatigued and sick. Despite this cold, I have not had any return in T sounds. More to add; in the month of october, although my T had already progressed to about 95-97% healed, on days I was tired or lacked sleep, I noticed a very faint hissing sound that was present until I would fall asleep (it would be gone in the morning). That too has subsided thankfully.

      Wishing you all this upcoming Thanksgiving. Please let me know if any of you have had any breakthroughs in the meantime.

      GP
       
      • Like Like x 2
    12. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      Hey - just seeing your post now.

      I have DEFINITELY gotten better. I still have one or two annoying days a week, but I have some days I legitimately don't notice it unless I look for it. This is not just habituation. This is a unquestionable reduction in symptoms. (I just crossed six months).

      As some on this forum may know, I have long standing hip and groin injuries. It took about 5 years, but its 95% healed at this time. Why is this relevant? Because in the years of seeing a physical therapist, you get to talking. She has/had noise induced tinnitus from a Bouncing Souls concert circa 2011. My recovery is rather similar to her story thus far, which gives me a lot of hope. According to her it softened a bit at 3 months, and sleep resumed. At 6 months it went intermittent. Over the years since then it has remained intermittent, but to a point it's basically gone. She reports 10-15 min spikes that come 1-2 times a month. I'd consider that "healed" if I get there.

      My progress is as follows
      1st month - absolute torture. Like a ringing laser beam through my head. Somatic in every way, including visual. If I changed the direction I was looking, the pitch changed, as much as an octave. I could barely read it was so distracting. hyperacusis in left ear.
      2nd month - still awful, but the visual stuff faded. Hyperactive trigeminal nerve left me feeling as if my teeth were vibrating. sleeping 1-3 hours a night
      3rd month - started seeing an osteopath. specializes in the cranium / sinuses. this has helped the trigeminal problems IMMENSELY. I go every 3-4 weeks as its rather painful. Still no sleep at this point
      4th month - started sleeping 5-6 hours a night. some awful days, but many that I could focus at work no problem. hyperacusis is pretty much gone
      5th month - 1-2 bad days a week, 5 days of tolerable or mostly quiet
      Current - no issues sleeping at all. I can tolerate caffeine (and other stimulants). my "bad" days aren't as bad as they were but I still hate them. Still 1-2 a week. My "good" days are much better than they used to be.

      As next steps I plan on getting the laser treatment in Sarasota - either in Dec or Jan. I'm aware its potentially the most expensive placebo I'll ever buy - but I don't give a shit. If it helps it's the best money I ever spent. If it doesn't, I've wasted money on dumber stuff than that and a week on the beach with my wife isn't exactly a bad thing.

      I don't expect this to ever totally go away. I do somewhat expect to be one of the lucky few who fully habituates to the point I don't hear it at all unless I actively look for it and I have the good sense not to.
       
      • Like Like x 1
    13. Adam12ver
      Talkative

      Adam12ver Member

      Tinnitus Since:
      Started on August 23 2016
      Cause of Tinnitus:
      Unkown possibly medications/ no hearing loss
      Honestly, in my opinion T can go away. It really depends on the severity of the situation. Like most that have mentioned that diet and exercise can go a long way. Deep down in my heart I feel that any physical ailment can go away on its own and it takes time and patience. Also calming the central nervous system is KEY!!! This means meditation, taking nature walks or anything that calms the soul and central nervous system. My tinnitus is virtually gone but do hear it in very quite situations (dead silence). It is nothing more than a slight hiss or ring. I am grateful and hopeful for a full recovery. Honestly, I feel that I still need to further calm my nervous system because I intentionally look for the hiss/ring. I just need to live my life and be happy ,which I am :) For those who are suffering there is hope and you can rid yourself of the T. It may take some time so be patient. I feel the body can repair itself, so take care of it!!! Exercise, diet and be happy :)
       
      • Agree Agree x 2
      • Optimistic Optimistic x 1
    14. Stephen1144

      Stephen1144 Member

      Location:
      USA
      Tinnitus Since:
      1994
      Cause of Tinnitus:
      gun noise
      Very interesting opening post. I plan on trying some of the suggestions.

      Thank you!
       
    15. AUTHOR
      AUTHOR
      heartohelp

      heartohelp Member Benefactor

      Tinnitus Since:
      6/2008
      Cause of Tinnitus:
      Loud noise exposure
      @Tom Cnyc

      So ecstatic and thrilled to hear your T has in fact began to decrease in volume and duration. Like I mentioned during my initial postings here on tinnitustalk.com, I do feel that for certain types of tinnitus (noise-induced in particular) I really believe we can make the most of it by implementing lifestyle changes, mental outlook, and remaining positive that we can indeed recovery from a disease that robs all of us of our quality of life.

      Aside from this, I'm sorry I haven't been as active on this community. I have been very busy these past couple of weeks, but to update everyone, I have passed my licensing exam and officially a registered nurse! I will continue to read the posts here and try to update everyone as time goes by.

      In the meantime, I wish everyone well and hope you all have a great holiday season. Keep fighting T and don't give up!
       
      • Winner Winner x 3
    16. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      Thank you, @heartohelp ! You are one of my favorite posters! Thank you for starting and nurturing and tending to this very helpful, useful, and inspiring thread. Looking forward to hearing from you again.

      And a HUGE CONGRATULATIONS for becoming a registered nurse! Enjoy your new profession. Your great heart and compassionate nature will be a real help to many people!!
       
    17. Rick Brewer

      Rick Brewer Member

      Location:
      Florida
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Noise Exposure
      Hello Gian,

      I acquired T on Feb 20th, 2017 after using a power tool in a confined area. First, THANK YOU for your overall input onto this site. I know there are so many people who don't register on this site that read and re-read and re-read your posts to keep the HOPE alive. I'm one of those people.

      You mentioned in a post in this thread that you would experience alternating days of high frequency hissing and ringing, and some days with both. This seems to be the pattern that I now have. Did this happen for you toward the end of your tinnitus? My hissing has become more high frequency and almost metallic-sounding. On my no-hissing days, I have a faint tone in my head or right ear (sometimes with minor crickets).
       
    18. AUTHOR
      AUTHOR
      heartohelp

      heartohelp Member Benefactor

      Tinnitus Since:
      6/2008
      Cause of Tinnitus:
      Loud noise exposure
      Hello everyone,

      I wanted to check back in and see how everyone is doing, to wish everyone a happy post thanksgiving and get any updates on their tinnitus journey. I check this blog from time to time and felt it was necessary to come back and expand on what's going on with me since my last post. I would love to hear from everyone and hopefully a couple new people!

      Regards
      G. Penola
       
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