Idea About Lowering Certain Types of Tinnitus: Taking Riluzole. Ignorant, Stupid, or Worth a Try?

Discussion in 'Support' started by JasonP, Sep 12, 2016.

    1. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      No, I just wish I could get tinnitus to the point where I can't hear it outside or watching the TV or listening to music. Would you ever take it?
       
    2. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006

      I found info about Riluzole on Drugs.com:

      Riluzole works by decreasing your body's levels of glutamate, an amino acid that affects nerves that send messages from your brain to your muscles. People with amyotrophic lateral sclerosis may have very high levels of glutamate, which can damage these nerve cells.

      Is it possible that if there is too much glutamate in the nerves that controls the ear muscles that this would help people with tinnitus in which the Tensor Tympani muscle is causing it?
       
    3. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Another article I found said this:

      "BHV-0223 is the glutamate modulating compound riluzole, contained in the tablet formulations Zydis ODT fast-dissolve technology. The drug will be produced under an exclusive worldwide agreement with Catalent, which makes Zydis.

      Glutamate modulating drugs are of interest for a number of diseases in addition to ALS, such as Alzheimer’s disease, Rett syndrome, dementia, dystonia, tinnitus, anxiety disorders, and affective disorders."

      Source: https://alsnewstoday.com/2016/03/04...-and-expedited-development-path-for-bhv-0223/
       
    4. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Hey, I am just curious, did you talk to the doctor about Riluzole? If so, what did he say? I called my doctor's office today to see if they would prescribe it off label. I am not sure they will but I figured I would try.
       
    5. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Hey John, I was just curious does residual inhibition caused partly by affecting glutamate or is it caused by something else?
       
    6. Cityjohn
      Inspired

      Cityjohn Member

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Scombroid food poisoning.
      As I understand it, it shortly depletes the supply of glutamate in the synapses and it takes a second before the same synapses can fire again.
       
    7. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Wow that is very, very, very interesting. According to Wikipedia, Riluzole:

      Rather, its ability to stimulate glutamate uptake seems to mediate many of its effects.[20][21] In addition to its role in accelerating glutamate clearance from the synapse, Riluzole may also prevent glutamate release from presynaptic terminals.[22] These effects combined could significantly reduce glutamate signaling and cause indirect antagonism without acting at glutamate receptors themselves.

      It would seem that this could help lower glutamate and lower tinnitus. Of course we need glutamate for other functions but I find it interesting that this drug is used off label for OCD, depression, and anxiety. I saw a youtube video where this girl took it for OCD and it helped her tremendously. I wonder if a low amount would help reduce T some without causing too much side effects. Thanks for all your help with residual inhibition because I had no idea what was going on!
       
      • Agree Agree x 1
    8. Cityjohn
      Inspired

      Cityjohn Member

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Scombroid food poisoning.
      I agree, this is very interesting. Can you get some?
       
    9. Emmi
      Not amused

      Emmi Member

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

      unfortunately my doctor was not cooperative at all. He even got kind of angry with me for researching T further.. he wants me to not concentrate so much on it, and "learn to accept" it. To me it seems to be very difficult to find a doctor who really wants to help and work with you and doesn't suggest TRT as solution. I am very disappointed cause he is an expert in T, but he really wasn't a great help.. so I did not ask him. :(
       
    10. suze

      suze Member

      Location:
      Seattle
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      unknown
      Excess glutamate is supposed to be removed by the brains glymphatic system during sleep. The mouse MRIs showing activation of this brain drainage system are amazing.
      Astrocytes (a type of glial cell) are also supposed to regulate fluid. My own personal suspicion is that a dysfunctional glymphatic system results in glutamate, fluid, and waste build up. When I push on my head, the T gets louder, then almost silent immediately afterward. Maybe there is some edema from lack of glymph drainage? Anyway.......this sucks and I always have a headache.
       
      • Informative Informative x 1
    11. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      I don't know. I called my doctors office Wednesday and asked if she could prescribe it to me off label for depression. I don't think she would prescribe it for T. She said she would talk to her son in law about it since he is knowledgeable about this kind of stuff. I hope she will prescribe it. If anyone else tries it let me know. I found a coupon for it on goodrx.com. it's expensive but I hope I can try it.
       
    12. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      That is ridiculous. He should at least be helpful about the depression. I wonder if you can call around or email some doctors. I wish we knew of an expert we could email about trying Riluzole for tinnitus and see what he thought.
       
      • Agree Agree x 1
    13. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Bad news. My doctor's office just called and said they don't feel comfortable prescribing it for me. I have no idea who would prescribe it for me. This is what sucks, you think you find something that might help that is not something common and then you can't get it prescribed even though there has been plenty of off label testing. In this case it was tested for depression and anxiety and I can't get it prescribed off label. I guess they are too scared of prescribing something that is for ALS.

      If anyone tries this or finds a place that would prescribe it, please report back on this thread.
       
    14. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Hi Emmi.
      I am also from Germany and was in Bad Arolsen clinic. Doctors here just want you to habituate. They have no interest in a cure or reducing the volume. They all go the psychological route of habituation or recommend hearing aids or maskers. It is not worth talking to them anymore. Waste of time.
      Grüße aus Essen,
      Martin
       
    15. Jkph75

      Jkph75 Member

      Tinnitus Since:
      2/27/16
      Cause of Tinnitus:
      Otosclerosis
      This drug lowers your white blood cell count and weakens your immune system. That's why they won't give it to you.
       
    16. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      That could be it but it is a shame because I don't know if it would do that for everybody or if it would only be temporary if it did. I guess I could ask, but that could definitely be the cause. I wish they would be willing to let me try it because the nurse practitioner psychiatrist said she has people with depression who are treatment resistant.
       
      • Funny Funny x 1
    17. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Well guys, its been a while but unfortunately, my doctor would not prescribe this for me. I thought it really might be an interesting drug to try based on my completely amateur research (what do I know? Just a layman here and this idea could be "out in left field"). Does anyone out there think it would be worth it for them to try this? Would it make sense? If so, do you know a doctor that would prescribe it for you? Here is another thread that goes into more detail:

      https://www.tinnitustalk.com/thread...iluzole-ignorant-stupid-or-worth-a-try.17437/
       
    18. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Okay, long story short. I found this drug called Riluzole a while back and after asking about it on here, thinking about it, remembering the past, and some experience with other drugs I think this has a chance at lower my tinnitus. I believe most of my tinnitus was caused by excitotoxicity which is caused by too much glutamate (simplified answer). I believe this happened when I took some medications and was under a lot of stress. Riluzole inhibits the release of glutamate

      According to Wikipedia:

      Riluzole preferentially blocks TTX-sensitive sodium channels, which are associated with damaged neurons.[15][16] Riluzole has also been reported to directly inhibit the kainate and NMDA receptors.[17] However, the action of riluzole on glutamate receptors has been controversial, as no binding of the drug to any known sites has been shown for them.[18][19] In addition, as its antiglutamatergic action is still detectable in the presence of sodium channel blockers, it is also uncertain whether or not it acts via this way. Rather, its ability to stimulate glutamate uptake seems to mediate many of its effects.[20][21] In addition to its role in accelerating glutamate clearance from the synapse, Riluzole may also prevent glutamate release from presynaptic terminals.[22] These effects combined could significantly reduce glutamate signaling and cause indirect antagonism without acting at glutamate receptors themselves.

      Okay, I believe I have damaged neurons which Riluzole works on and I believe I have excess glutamate in certain neurons due to damage which I think is causing tinnitus. I could be way wrong but I would love to give it a chance. This medication has also been tested for psychiatric problems such as OCD and depression and has helped some people who were treatment resistant. It is expensive but the drug company that makes it said if I filled out some paperwork saying I couldn't afford it and then had the doctor write me a prescription they would mail it to me for free.

      The problem is it is only approved for ALS so it would have to be off label and the doctor I think is either scared or doesn't think it would help. I am pretty sure it would have at least one side effect for me BUT if it reduced the T and helped with depression it might be worth it or I could take a low dose or something. It may not do anything.

      The question is, what doctor could I go to that would prescribe it to me? I doubt an ENT or regular doctor would and the doctor that won't prescribe it to me works for mental health.

      Secondly, does anyone know of a natural alternative that would do something like this drug does? Does anyone else think this would help them or is my idea a pipe dream? Comments appreciated!
       
    19. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Note: This post was a separate posting but the moderators combined it with this thread. That is why it may seem repetitive.
       
    20. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Do you know of a doctor that would prescribe this?
      Hey, is this medicine something you would try and if so, do you know a doctor that would prescribe it?
       
    21. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      @Cityjohn
      I was reading where Vitamin C had an extremely short half life but then other places where it had a lot longer half life. Very confusing. According to Wikipedia:

      Biological half-life varies according to plasma concentration

      Very confusing. Can you explain that to me? Also, would it be better to take a slow release form of Vitamin C?
       
    22. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      No
       
    23. Cityjohn
      Inspired

      Cityjohn Member

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Scombroid food poisoning.
      I see your problem after pulling up a paper reading "The average half life of ascorbic acid in adult human is about 10–20 days". Which is a ridiculously meaningless, wildly broad, and incorrectly spelled statement. Nobody should ever trust a research paper with crap like this in it.

      The half life of Vitamin C, a.k.a Ascorbic Acid is only 30 minutes in the human body. I'd just take less vitamin C over different times of the day. The 70mg pills I have are like a tiny piece of candy. A half life means exactly that; after half an hour has passed there is only 50% of the stuff left in the blood plasma, then after another half hour there is 50% of 50% = 25%, and then 12,5%, 6,25%. It keeps halving every half hour.

      The body uses some of that vitamin C so as long as you have some in the blood, and the rest of it is dumped. The problem with vitamin C is that the body can't really store it in fat but has to do so in the adrenal gland where I've read it could remain for months, which is of no help because you can't ask your adrenal gland how much it has left, and in those quantities it will only keep you from getting scurvy for a month.
       
    24. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Thanks for letting me know. Can your body get used to higher doses of Vitamin C at once without causing diarrhea? Or is it best to just take 70mg multiple times a day?
       
    25. Cityjohn
      Inspired

      Cityjohn Member

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Scombroid food poisoning.
      I don't think Vitamin C is a laxative unless you ingest more than 2-3 grams of it. I take 70mg because they're easy to chew.
       
    26. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Thanks, that makes a lot of sense. I may have taken 1250mg to 1500mg at once the other day, possibly more. I can't remember, but I know it was quite a few tablets.
       
    27. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      doc prescription
       
    28. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Are you saying you got a prescription for it?
       
    29. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      you want to buy a box? i am using it 50mg per day
       
    30. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Wow! Thanks so much for the offer but I will decline for now. Is it helping you with tinnitus, anxiety, or depression or anything? How long have you been taking it for?
       

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