How Many "CURES" Have You Tried?

Discussion in 'Support' started by NeverLoseHope, Nov 15, 2014.

tinnitus forum
    1. OK I am slowly catching up on some of the posts. I have to say I have tried almost everything I have read so far. (and then some) Some are just so stupid painful or downright dangerous like Tinnex taken intravenously in India (I was talked out of that one) I did take the drug though. I could never list everything I have tried.

      The TENS Machine behind your ears was probably the most painful.

      The Inhibitor the most loud & a very strange idea, blast you ears with a sonic boom to stop it!!!

      The tinnitool (£5 laser pen) was the most stupid. One of my Dr friends laughed himself stupid when he saw it.

      The list of gadgets I have could go on forever. If it was for sale I bought it.

      First person in the UK to try Soundcure, my mate Joe who uses this forum was the 2nd I think? Total rubbish.

      Then we go do the drug/ vitamin route. (I am on the vitamin route again I have to say) Ginkgo, B12, Magnesium, tri-salts (almost killed me) Kwells, there was some tablets for athletes foot I used as well for some odd reason. Lucky I can have any prescription drug I want.

      Ok then there was acupuncture (used to sleep through it), cranial therapy (joke) But not as funny as the Bonham treatment. How I did not laugh on that one I do not know.

      £5,000 on private TMJ treatment I still have the gum guard 5k well spent (not)

      Oh some magnet around my head.

      My wife is so used to a "new cure" every other week or so. I have done so many others I have lost count.

      Call me stupid if you wish (but NOT a liar or a fake) But one thing I can say is I am NEVER going to give up trying. Thanks for reading.
       
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    2. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      try retigabine...see the lengthy thread...one guy totally cured
       
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    3. sal__K

      sal__K Member

      Tinnitus Since:
      2014
      habituation is the answer..
      try Cognitive Behavior Therapy or Tinnitus retraining therapy...
       
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    4. RaZaH
      Not amused

      RaZaH Member Benefactor Team Tech

      Location:
      Reykjavík, Iceland
      Tinnitus Since:
      2012/04
      Cause of Tinnitus:
      Benzo + loud noise
      Hmm, I went in a tank/diving oxygen thingy. I tried juiced cannabis.
      I am now taking LDN (low dose naxotrene) , not expecting anything from that with regards to T.
      Planning to try Retagabine.
       
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    5. mmacabre
      Ape-like

      mmacabre Member

      Tinnitus Since:
      2011
      get trobalt lol
       
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    6. UserID
      Lucky

      UserID Member Benefactor

      Location:
      Tampa, FL
      Tinnitus Since:
      05/01/1972
      Cause of Tinnitus:
      Artillery
      I've tried laser treatments. A waste of $1500. Also, a Neuromonics unit. Another waste when there are already loads of sounds one can use for mitigation. Cost? $5200. Now, I just wear my MP3 player, turn on cricket files of all sorts, including one generously made for me by Steve H.

      Also, in the past, I tried various supplements and drugs. The best of those was xanax, which I am still on, as it acts to calm the reaction and settle the volume at times. Overall, sound therapy is the key for me. Keeping my player handy makes life bearable.
       
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    7. Bart
      Balanced

      Bart Member

      Location:
      Antwerp
      Tinnitus Since:
      05/06/2014
      Tried hyperbaric oxygen therapy twice, accupuncture, osteopathy, steroids and ginkgo.

      Still have T.

      Following TRT at the moment.
       
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    8. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      It is incredible to me the different things that some of you have tried.... things/supplements I have never heard of. I have T for 3 years now ( Thanks Giving Day will be the exact day) How can I ever forget that!? I have tried Quietus and Lipoflavanoids for a month only, probably helped a little. I'm taking Bioflavanoids for 2 weeks now and magnesium, vitamin c 1,000mg. I will like to try NAC and Retigabine. I guess one has to try different things for at least 3 months in order to rate it appropriately. In 3 years I have had my ups and downs... the volume is always the same.... 1 1/2 years ago a hum decided to tag a long and never left me. Have had 2 episodes of H. I don't wish on my worst enemy. Can I get Retigabine in US?
       
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    9. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK, Fareham
      Tinnitus Since:
      5.6.14
      Decidedto giveginko a try. So far no difference.
       
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    10. Jarvik

      Jarvik Member

      Location:
      Dallas
      Tinnitus Since:
      10/2014
      My T is just over two weeks old. I am currently trying:
      • A variety of supplements (NAC, glutathione, green tea, omega-3 fish oil, CoQ10, benfontiamine, turmeric, sulforaphane, B12, etc.)
      • Prednisone from my ENT
      • HBOT (thus far, five 90-minute dives to 2 ATM on 100% O2)
      • Acupuncture
      Thus far, I haven't begun any retraining therapies like notch therapy because I don't want to further confound the treatment landscape and it seems that retraining therapies are probably less time dependent than those above.
       
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    11. erl115
      Balanced

      erl115 Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Maybe loud music or damage to the ears.
      Only, and best cure for me until now is: Workout (strength) - for example http://stronglifts.com/, healthy food and vitamins C, B12, etc, low carb with vegetables - for example use a slow cooker like this http://www.buzzfeed.com/christinebyrne/low-carb-slow-cooker.

      And to avoid social nights with too much loud sounds like loud talk, music, concerts etc. Do whats best for U. :)

      NOTE: I had my T over 2 years..
       
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    12. earsnothappy

      earsnothappy Member

      Tinnitus Since:
      May 2014
      I've tried seeing multiple ENTs which was no real help. I tried lipo-flavonoid, which may help people with meniere's disease, it didn't help my tinnitus (noise induced). I've tried NAC, zinc, vitamin b12, none seemed to help.

      My current effort is taking part int he AM-101 trial. First round seemed to help quite a bit, second round increased my tinnitus, but it's now in state of flux and I hope it either returns to the level before the second round or lowers it more or ultimately eliminates it. Time will tell on that.
       
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    13. gary
      Transparent

      gary Member Benefactor

      Location:
      Macomb, MI. USA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      Who Knows
      Lipoflavanoid, that's it. Started them after getting T over two years ago, I never did stop taking them & still have T. My T comes and (thank God) goes, does the Lipo work I doubt it, but I figure it can't hurt. I am habituating, and now that this thread has started, looks like it's time to stop the Lipo and see if there is any difference.
       
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    14. Kelli
      Question it

      Kelli Member

      Tinnitus Since:
      07/2010
      Cause of Tinnitus:
      viral infection
      I've tried everything as well. And like you I'm never going to stop trying to find a cure. This sound in my head is maddening!! What caused yours? Mine was sudden hearing loss. I'm on the prowl now for CBD oil to see if that will help. I've read it helps with epileptic seizures and I see tinnitus being a form of sensory epilepsy. I'm still searching for a legit place to buy it or enough evidence to send my dr to write me prescription for it.
       
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    15. rtwombly
      Bookworm

      rtwombly Member

      Location:
      Southeast USA
      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Unknown
      I've been to three different chiropractors and consulted two more, one in connection with a clinical trial of a sound discrimination training program. Did magnesium, zinc, ginko, lipoflavonoid, NAC, and ALA. Tried a course of diuretics. Acupuncture (trying a new practioner this Friday). Did the Whole 30 diet to see if it was food-related. Off caffeine. Stopped exercising for a period of several months in conjunction with my chiropractic care. Bought and have worn a Q-link.

      Recently ran out of my $100 essential oil and still have the $70 worth of other stuff.

      You need a prescription, best to prescribe is a neurologist. It is expensive if your HI doesn't help. Read the thread for details. You can search for posts by Mpt, Benryu, and Markku to get something of the gist, or read the user experience thread.
       
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    16. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Thank you rtwombly. I have a descent HI. I did go see a neurologist a year ago who said there was nothing wrong with me...he suggested I go see an Infectious Disease Specialist, which I didn't. I guess I can try again. I went to 6 different ENT ,(in 2yrs period) yes 6, had 2 MRI's. One of them diagnosed me with severe allergies, inflame eustachian tube and rhinitis. :( Gave me some nasal sprays (dymista), prednisol and sent me home. Also went to 2 different Audiologists and said no hearing loss. Anyways, so many threads here, I feel a little lost... but I'll find my way around. How can I find Mpt, Benryu or Markku's postings?? Enlight me please.
       
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    17. rtwombly
      Bookworm

      rtwombly Member

      Location:
      Southeast USA
      Tinnitus Since:
      01/2014
      Cause of Tinnitus:
      Unknown
      The most useful trick I know on this forum is the simplest. Up in the top right corner of any thread, you can click into the search box, go down to Member, start typing, and it will offer you member names to search by. I usually combine this with "Search this thread only". Using that you can follow somebody's posts from start to end on a particular thread. If you try it with Mpt on the Retigabine thread, you can get his whole story in one place. Then you can try Benryu's posts for the technical explanation.
       
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    18. OnceUponaTime
      Facebooking

      OnceUponaTime Member Benefactor

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Thank you!!! That helps! :)
       
    19. Nick J.
      Approved

      Nick J. Member

      Location:
      Denmark/Malta
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      Could u explain what kind of lasertreatment u got...did u go to a clinic or bought your own laser and for how long and what was the wavelength and power?? Thx

      Cuz im having great succes with laser ATM! And i almost just started!
       
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    20. sal__K

      sal__K Member

      Tinnitus Since:
      2014
      u will have 2 learn to live with it...
      adapt to it...
      medicines may give temporary relief but habituation is the key..trust me..
      cbt or trt are worth giving a try...
      u have to train ur brain to tune the noise out....
      the key is to stop thinking about the noise 24/7 and treat it as any noise which one may hear everyday in our lives...
      if by using these therapies u stop noticing the noise 70 percent of the time it should be perceived as a triumph..even if the noices are heard it won't be bothersome..
      my biggest advice would be once u start to habituate or get habituated don't come back vising tinnitus forums..
      celebs like william shatner don't hear the noise 95 percent of the time....

      sometimes i am against visiting forums a lot....
      8 months ago my blood pressure shot up and i was having irregular heartbeat..
      blood pressure increased because of my lifestyle..
      i visited many forums and i read many posts where they said they have had palpitations for years...it does not got away..
      i thought for a moment how can i live like this...but in three days i was normal
      my bp is control and have no irregular heartbeat..

      same is the case here....
      some are very positive but many are too negative...i mean just reading their posts make u feel depressed..
      if u have condition u have to do something about it..
      Comic con 2012 MTL - William Shatner speaks...

      william shatner had tinnitus before i was born..if his life can improve why can't mine..
      my noise is mild ...sometimes it increases to a level where i feel irritated..so i get out of my house and go for a walk or plan evening out with my friends...
      i told my mom i may not be able 2 experience silence again....she told me hardly anyone does...some have there fan or ac on in their rooms
      if u go out in the night u will be hearing crickets..
      remove negative aspect out of your life ..everything will become better...
      google and find out about cbt or trt and try them out...
      have patience and think positive u will get habituated
       
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    21. WOW that is a lot to take in over night thanks for all your posts and some good ideas that I will try, once this patch thing is over. Habituation @sal__K as you rightly say it the only real hope ATM.

      @Nick J. I I only used this rubbish http://www.tinnitool.com/en/therapie_moeglichkeiten/ totally useless.

      @Kelli I have had mine 11 years after a very sudden unexpected premature birth of my son who thankfully is now a happy healthy 11 year old. can,t go in to anymore detail sorry.

      @earsnothappy I have posted about AM-101 trial on my page. and I wish you every success with it. it does sound good and maybe the way forward.

      @Jarvik only 2 weeks you might only be short lived with luck, many people only have it for a short time. Have you been tested for thyroid problems for a start?

      @angelic I am also on magnesium, 250mg slow release twice a day with B12 and Aloe Vera atm Oh and the patch !!!

      @ape-like Trobalt is something I need to look into

      @john2012 retigabine I will look into that for sure TY

      And thanks for everyone who replied some good new ideas a I am going to look into.
       
    22. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK, Fareham
      Tinnitus Since:
      5.6.14
      Best post i've read in a long time. I enjoy coming on this forum to get advise, offer help and speak to people with a common problem. And when i first got tinnitus it really helped me from feeling lonely. But now i'm coping pretty well, thinking about the website, or visiting the website acts as a reminder of my tinnitus. It also seems louder while on here. I think i may limit it to once a month.
       
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    23. john livingston
      Cool

      john livingston Member

      Location:
      Pinehurst NC
      Tinnitus Since:
      03/1974
      Cause of Tinnitus:
      football contact
      Wow just reading about all these exciting sounding and expensive remedies blows me away since I've not tried hardly anything. It looks like there are an endless line of folks out there peddling all kinds of crazy stuff to profit from the misery of T suffers to no avail. In the early stages some things might mask the problem for a temporary time but if your T is for real it wont last. I'm not trying to be negative because a good attitude is always good to have. And it helps to see what others have done to keep from making the same expensive trials. For me just keeping my anxiety level down is all I can hope for the only thing that works for me is cannabis. Since there are no side effects compared to all the pharm remedies. But since prohibition has screwed a lot of good folks out of some type of relief that pills cant give its just not right. Not saying that its for every one but that's the way I deal with it. It does not make the noises any better but for me it settles the nerves a bit.
       
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    24. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK, Fareham
      Tinnitus Since:
      5.6.14
      I don't smoke weed anymore due to the fact it demotivated me and i believe it causes long term mental problems. But that's me and perhaps i'm wrong. But if it works for you then great.
      It's funny how people find alcohol acceptable but not weed. people drink, fight, chuck up, urinate on the streets, damage peoples property and end up in A&E is ok. but getting stoned with your mate and watching a film at home makes you a loser. Funny world.
       
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    25. UserID
      Lucky

      UserID Member Benefactor

      Location:
      Tampa, FL
      Tinnitus Since:
      05/01/1972
      Cause of Tinnitus:
      Artillery
      A guy whose story I read in the local paper is a weight lifter who, when he bench pressed, took deep breaths and sometimes rather than let out the breath as he lifted, he held it in. One day he held it in too much, I suppose, because his ears sorta "burst" from the pressure and caused him severe tinnitus. So be careful. Breath right.
      David
       
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    26. UserID
      Lucky

      UserID Member Benefactor

      Location:
      Tampa, FL
      Tinnitus Since:
      05/01/1972
      Cause of Tinnitus:
      Artillery
      I drove to Daytona Beach, FL, a 2.5 hr. drive from Tampa, where I stayed for four days and was given treatments twice daily. The whole thing only aggravated my condition, so I dropped out and drove back home. My brother was kind enough to drive east to give me support when I was feeling so low. You might do a search to find them, if they're still in operation.
       
    27. john livingston
      Cool

      john livingston Member

      Location:
      Pinehurst NC
      Tinnitus Since:
      03/1974
      Cause of Tinnitus:
      football contact
      For me T has caused more than enough mental problems just trying to cope with the daily changes. If my meds have caused anymore mental problems I haven't noticed them ha ha. With 40 + years of the same meds I guess I will keep on keeping on. With the onset of T you think you are going crazy anyway. Back in the eighth grade mine was so loud I was afraid to get real close to people because I knew they would be able to hear it coming from my head. When I finally realized that I was the only one that could hear it that was a relief. For the first 35 years it kinda stayed like one loud tone but for the last 5 or 6 years its been ever changing pitches and tones. Last nite I had sirens going on one side of my head and dog barking sounds on the other side. So I try to imagine being in a alaskian dog sled race. then wake up the race is over but the dogs still barking away! Its bad to say but I would give up an arm or leg just to have peace and quite. But I would not give up eye sight that is the only way to communicate with lip reading.
       
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    28. Nick J.
      Approved

      Nick J. Member

      Location:
      Denmark/Malta
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      Yes iv heard that story before i think.
      Problem is many ppl dont know anything about how lasers work before getting the treatment!
      The T going up in volume and even more noises starting to pop up, is how its surpose to be!
      The worst that could have happened, was that u had no reaction at all. That means your earcells will not start producing energi and regenerate and thereby increase your hearing over time, which again leads to lower T, since that (most cases) comes from a big drop in hearingcapasity!

      Before i started with lasers, i had constant very high pitch T, that would be clearly heard beside a busy highway with trucks and busses tailing each other.
      I also had sudden burst of very high cricketnoises, like if u had a handfull of them in the same room your in.
      After only 4-5 treatments, these cricket stopped and have since only come back very faint when i do treatment and this is to be expected.
      Also the high pitch T is now only on the bad days. I would say 3 days a week now, after 5 weeks treatment.
      The rest of the week, the sound in my ears are like this noise u hear if u put your head under water and u can hear the propella from a boatengine. But often so faint that it feels like my T is gone.
      So to me that is huge progress and i keep getting longer periods of the good days.
      But i did 10 days of clinic treatment in the begining and yes, that was pure hell most days, with very high T and crickets all over the place some days!
      But i kept my shit together, cuz i knew this was part of the symptom on the road to recovery!

      Some ppl in here tells other to just not pay attention to the T...well guees what!?
      That is not gonna make your hearing any better!! Laser is!!
      That is not gonna make your T go away forever... Laser might do this!
      The reason why T might come back, is that u might have more damage from noise in your ears and at some point, the T can become so bad, that u cannot block it out!
      Iv had it since i was a kid and i could back then also block it out, cuz it was not bad T like now!
      But T like i have now, is not really possible to just forget! Its there every day!
      But if u dont start protecting your ears with earplugs when u are in noisy places, your hearing is gonna keep beeing reduced, whit a potential of u getting a hole Zoo full of noices in your head.
      Just ignoring your T, is like ignoring skincancer. U can tell yourself its nothing and u might even forget u have it, but i can promis u its not just gonna go away.
      Im the type that rather wonna treat the skincancer before it gets any worse!
      But we are all different ofcourse.
       
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    29. Two things that do work me and and keep me sane. One is a digital hearing aid I had it specially tuned up, so I can almost have bionic hearing if I wish in my left ear. The other is just a basic white noise masker I have used for about 10 years in my right ear.
       
    30. Viking
      No Mood

      Viking Member Benefactor

      Location:
      Italia
      Jenuary - 2006 - Hospitalized - 15 days of intravenous Soldesan and glycerol (partial relief)
      February - 2006 - At home 15 days (Glutadione 2400mg) intravenous (no results)
      February - 2006 - At home Intravenous Lidocaine with partial response then adviced to use Tegretol (carbamazepine) with partial relief but a train of very bad side effect.
      March - 2006 - Lioresal (baclofen) + Alprazolam at night - Partial relief with minor side effetct in comparison with tegretol but quickly addiction and tolerance.
      April - 2006- TRT.....pure shit (sorry for my expression) totally useless and irritating
      May - 2006 - Acopuncture and herbal remedies - improvements momentary. Probably placebo effect
      June - 2006 - massage chiropractic and psychiatric consultation + paroxetine (AVOID IT). psychotherapy was good but just to have a chat with someone who can understand the negative impact of a phantom sound in your life
      July - 2006 - Fly to UZA (Belgium) and try with De Ridder: 1) Transcranial magnetic stimulation - 2)Promomntory stimulation 3) Trans cranial direct current stimulation. All this non invasive treatment no gave result but De Ridder and his team found on my MRI scans 2 important vascular conflict. The most important is on the left side and evidence of a bloodvessel impact directly on the nucleus cochlearis. The we try many pharmacological combination
      September - 2006 - Flupentixol (morning) Solian (lanch) Rivotril 1mg (after dinner)
      I my opinion only rivotril give relief.
      Stopped in november due to the adverse effect of solian.
      December - 2006 - Deanxit (morning) Rivotril (night) 2mg. The same results. Only rivotril help
      February 2007 - Stellate ganglion blocking in order to evaluate some benefit with surgery. Partial result with a response on the ABR (auditory brainsteam response)
      The hypothesis of surgery seems to be the best choice even though there is no guarantee. So I continue only with rivotril valerian and melatonin. During the year 2007 I make several attempts with different medications but with bad results: the worst of all is the lyrica. Gabapentin, and other various mood stabilizer are unuseful.
      December - 2008 - The final decision. Surgery on the left side. Only on the AICA artery was found 3 conflict separated with spongostan (instead ivalon or teflon). After 1 month after surgery the results are important. The tinnitus on the right side totally disappear. I had only a minimum residual on the left side (where there was the most important conflict bloodvessel/nerve).
      I was slowly returning to a normal life with a single sided tinnitus 40db 6000hz not costant. A situation livable enough to eliminate benzodiazepines and only occasionally take a few drops of rivotril but mostly slept with valerian and melatonin.
      Incidentally i found that cannabis improve the general conditions, then i use it only before going to bed and remove benzos. I'm free!!!
      In the year 2013 i make terrible mistake in good faith. Hearing aids for my sensorineural hearing loss in the high frequencies. This problem I've always had from birth, but without attention problems, social or otherwise. Many doctors since the onset of my tinnitus suggested to use hearing aids, saying that they would help to disappear tinnitus. I had always refused, but I had come to think that maybe I should listen to him ... I was hoping that the implants could help to make the final leap. Delete the last remnant of tinnitus .... I had not ever done .... now I'm suicidal.
      July - 2013 - i'm using the hearing aids I begin to notice that tinnitus worse ... I think it is a normal adaptation of the brain. Nobody tells me I can get worse. They all say that it is my "impression".
      August - 2013 - i must go to the hospital on the 21/08/2013 because the situation is degenerated. I had (have) MONSTERS in the head. I can not even understand most of which side they come. Intravenous lorazepam without results...i'm scared.
      I return on rivotril (high dosage 2mg night and others during the day).
      Remove the damned hearing aids but the situation don't bring back.
      I have to start all over again. The doctors advice me about Tinnitus Maskers and SSRI like Escitalopram, Sertraline ecc....
      ANOTHER TRAGIC WORSEN! i'm unable to have a conversation with a friend. The strange fatct is this: after the most worse day.... they suddenly disappear for some hours and return in the night when i'm under the rivotril effect! how is possible!?!!?!?!
      July and august 2014 i have had an improvement using the Trobalt but discontinued due to important side effect on my kidney :°°°°°°°°°°°°°°
      Now I'm praying to resist until February 2015. I have an appointment with Dr. Jeanmonod. Hoping that we can still do something. In the meantime I have a suspicion: those rare days of sudden silence and hearing improved make me think of an imbalance of fluid in the inner ear. I could benefit from intravenous glycerol better with cortisone? Intratympanic steroids? who knows .... I'll try also caroverina to try to resist.
      I accept suggestions. The suddenly deterioration was caused sure from hearing aids. Perhaps there is still time.
      I already have a gun and a grenade fragmentary ready but I would avoid
      Thank you
      Best wishes
      Ivan
       
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