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

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

tinnitus forum
    1. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      WARNING: I AM NO SCIENTIST OR DOCTOR. PLEASE DO NOT CONSIDER THE FOLLOWING TO BE ALL TRUE. I AM IGNORANT IN MANY WAYS ON HOW THE BRAIN WORKS. I AM JUST PUTTING THIS OUT THERE AND HOPEFULLY WILL GET SOME FEEDBACK. IT COULD BE WAY OFF BASE. NEVER TAKE MEDICINE WITHOUT A DOCTOR'S PERMISSION.


      As has been mentioned before, some people say that a "glutamate storm" (excitotoxicity)
      that can come from benzo withdrawal can cause tinnitus. According to Wikipedia:

      Excitotoxicity may be involved in spinal cord injury, stroke, traumatic brain injury, hearing loss (through noise overexposure or ototoxicity), and in neurodegenerative diseases of the central nervous system (CNS) such as multiple sclerosis, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), Parkinson's disease, alcoholism or alcohol withdrawal and especially over-rapid benzodiazepine withdrawal, and also Huntington's disease.

      Source: https://en.wikipedia.org/wiki/Excitotoxicity

      Interestingly enough it says hearing loss through noise overexposure or otoxicity can cause excitotoxicity as well. According to Wikipedia:

      Excitotoxicity is the pathological process by which nerve cells are damaged or killed by excessive stimulation by neurotransmitters such as glutamate and similar substances. This occurs when receptors for the excitatory neurotransmitter glutamate (glutamate receptors) such as the NMDA receptor and AMPA receptor are overactivated by glutamatergic storm.

      So after doing a little research I found a video of a man explaining how glutamate works:

      Astrocytic glutamate uptake


      What I wonder and this could be completely ignorant is that if some of these nerve cells are damaged by a "glutamate storm" they might not uptake glutamate and leave the cell overexcited. Also, another idea of mine is that after glutamate reuptake, perhaps some of that glutamate could be converted to GABA during the glutamate decarboxylase process which then could later be used to inhibit neurons. (Not sure if that is the way it works because I am not a scientist, but just putting it out there)

      After doing some research I found a drug called Riluzole that stimulates glutamate reuptake:

      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.

      https://en.wikipedia.org/wiki/Riluzole#Mechanism_of_Action

      Interestingly enough it also says:

      A number of recent case studies have indicated that riluzole may have clinical use in mood and anxiety disorders.[4] It has been shown to have antidepressant properties in the treatment of refractory depression[5] and act as an anxiolytic in obsessive-compulsive disorder[6] and in GAD.[7]

      This is an off label use, as the main use is to treat ALS. (Another disease that may be involved with excitotoxicity - Please see third paragraph from the top) I do not know the long term consequences of someone taking this drug. I highly doubt this would get rid of tinnitus but wonder if it would lower it some or if it would help some people with depression and anxiety (or possibly obsessive thoughts?) about tinnitus.

      I don't think I have read anywhere of people trying this drug out for tinnitus but I didn't really look that much. Also, this drug is very expensive (at least for me it is) but there is now a generic available. What do you guys think? Is this a stupid idea? Is this idea ignorant? Is it worth a try?




       
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    2. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      I found a video called "Riluzole as treatment for Spinal Cord Injury". It seems they are using it due to "glutamatergic excitotoxicity". Thought it was interesting.

      Riluzole as treatment for Spinal Cord Injury
       
    3. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
      @JasonP

      How much does the generic version cost?

      Do you think a doctor would prescribe it for a tinnitus patient?

      What are the bad effects? Usually these drugs have harmful side effects.... :(
       
    4. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006

      Unfortunately, in my area the lowest I can get it is around $170 for 60 pills at 50mg and that is generic!! I wouldn't know the dosage to try. You might be able to get a psychiatrist to let you try it off label for depression, anxiety, or OCD. I found this site where they did some clinical studies on the drug. You can read about the adverse affects or check that wikipedia article about the drug.

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958461/table/T1/


      You can check this site out and put in your zip code to find out the prices in your area. You might be shocked at the name brand price!


      Generic:
      http://www.goodrx.com/riluzole?drug-name=riluzole

      Brand name:
      http://www.goodrx.com/riluzole?drug...antity=60&days_supply=&label_override=Rilutek

      I have no delusions that this will cure tinnitus. I was only wondering if it would lower it. Do you think this whole idea makes sense or is it "out there"?
       
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    5. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Hey I found this...read paragraph 0004. What do you think?

      https://www.google.ch/patents/US20020004516
       
    6. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      That sounds interesting! I was having a look for the side effects, they mention asthenia (18%), nausea (16%) and vomiting (3%) .. for me this doesn't sound too dangerous. At least way less dangerous than Trobalt and maybe worth a try. Good find!
       
    7. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Thanks so much! I appreciate the feedback. Although, I am no expert, it seems to be metabolized in the liver so people who have liver problems would have to ask their doctor about that. I know a person who has liver problems and says he can't take Tylenol because of it. By the way, where did you get those stats from? I am very interested in finding out.
       
    8. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      True, I later read that with the liver too. In a clinical trial they did, it was said that 8% of ALS-patients, who were treated with this drug had elevated liver values afterwards..and the tendency for an increase was higher when the patients already had liver problems. I read that on a German page, so I am not sure if the link helps: http://www.infomed.ch/pk_template.php?pkid=349
       
    9. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      That is really cool that you can read German and found this information! I had to translate the page but was able to understand it! Thanks!
       
    10. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      Upon brief examination, it seems that the drug prevents secondary neuronal damage due the decreased regulation of glutamate. I could see this working for an acute injury, but what about an injury quite far removed from the inciting event?
       
    11. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Yeah, I know exactly what you are saying. Do you think if the neuron was damaged it might help but if it was dead it would not? I wish there was a neuroscientist on here.
       
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    12. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      That would require true regeneration. I'm not sure to what extent damaged nerves can heal themselves.
       
    13. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Hey since you are German I was wondering if you would want to get into contact with Dr. Winfred Shlee and see if he would think this would be a worth a try. Maybe he could talk to you about tinnitus treatment. I am not sure. I don't think I could afford the long distance phone call though ;) By the way, in your tinnitus is above 8khz ask for an extended audiogram. I got one for up to 12khz and had some loss. I tried out a pair of hearing aids which can be programmed up to 12khz, the Siemens Primax 7px (another German company I believe). I think they are changing their name now to Signia. Anyways, they were the best hearing aids I have ever tried. Also, they have maskers that can be programmed for specific frequencies and they had sounds like beach waves or something as well. I decided not to buy them though because they were very expensive for me. Contact info for Dr. Shlee is on this website:

      http://www.tinnituszentrum-regensburg.de/htmls/tinnituszentrum/winfried_schlee.php

      Part 4/4: Do You Believe Tinnitus Will Be Cured?
       
    14. Cityjohn
      Studious

      Cityjohn Member Team Research

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Food poisoning.
      Jason let me first thank you for your effort, if we get enough people with the same hard heads to put them together we can make a difference. I think you made a great find.

      When a neuron dies through excitotoxicty it will very likely permanently lose its ability to function. A tiny portion of neurons have been shown to restore some functioning but it's really insignificant. No amount of glutamate antagonism can help you after the fact.

      This drugs would be very useful if someone would take it during a stroke, during a concert, or during a benzodiazepine withdrawel episode when large amounts of glutamate is released. But I'd have to note that a large dose of vitamin C is quite effective in preventing neruon damage through glutamate toxicity, so this may be a cheaper and perhaps even more effective method. I have uploaded a paper, MSG and glutamate are essentially the same molecule, the body treats them in exactly the same way.

      As for lowering the tinnitus already present, I think you have a good shot at doing that if what I've read quickly is true. But it isn't just tinnitus that uses glutamate, there's going to be other brain functions that will be impaired, it is worth taking that into account.
       
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    15. Emmi
      Not amused

      Emmi Member

      Tinnitus Since:
      November 2015
      Cause of Tinnitus:
      Noise Exposure
      @JasonP , funny I am actually already in contact with him, I will ask that as well. Right now I am in a clinic close to Munic and will have an appointment on Friday with the head physician Dr. Langguth.. he has published a lot about Tinnitus and he and Dr. Schlee are both in the Tinnitus Research Initiative. They focus mainly on rTMS, which is why I am in the clinic as well, but they surely have a lot of knowledge about it and it would be interesting to hear what they say to this theory.

      Another thing I was wondering.. we do know that Lidocaine given intravenously suppresses Tinnitus, because of the side effects it can't be used therapeutically, but wouldn't it be possible to assess the matter here. I didn't look that up yet, just a thought.. but there is something where we know that it works, why not try to use this mechanism somehow.. also I noticed when I take Zolpidem (sleeping pill) the volume of my T. gets way less to nearly not noticable.. so in my case it definitly has to do something with an overactive nervous system.
       
    16. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Thanks so much for critiquing this. I did not know about using a large dose of Vitamin C to prevent neuron damage. That is very interesting. I think what you said makes a lot of sense.
       
    17. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Wow, what a coicidence that you already in contact with the doctor! It's cool you have done so much research. There is a good chance that if Zolpidem can lower your T, something else can too. Just be careful though, certain drugs can be very addictive and cause dependence and hard withdrawals. The doctor can tell you more about medications though. I am not sure about how to use Lidocaine mechanism with something else but that would be a great question to ask Dr. Shlee.
       
    18. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      This may be too much for the system and cause too many side effects but I was seeing about how some might benefit from Magnesium Threonate which is supposed to cross the blood brain barrier. According to this video Magnesium can block some NMDA receptors at rest but if glutamate activates a nearby AMPA receptor, the magnesium will be dislodged. Therefore, I was wondering if glutamate had increased uptake and someone were to take magnesium threonate (have to make sure this is safe to do from a doctor. I would also think this would have to be a safe dose and no more than recommended) to affect the NMDA receptors could this reduce a little bit of the NDMA action of the nervous system and possibly reduce T for some? Like you said though, I am concerned about this causing other side effects because glutamate is needed in the brain for many functions. Here is the video:

      Glutamate Animation Scene02 NMDA Activation 072312
       
    19. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
    20. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      The only way I might be able to get it is to ask a nurse practitioner I see sometimes for depression. I would probably have to ask if she would prescribe it off label for depression. She might prescribe it for me but might not. At any rate, I guess I could give her some information and she might look into it.
       
    21. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      I gave her the information on it. She said her son-in-law and a doctor who I believe is her husband will look into it. She's pretty nice..she actually gave me a drug that theoretically would make a lot of sense for tinnitus but didn't work. That's okay because she tried and I appreciate that.

      Hey John, what is the dosage you recommend for vitamin C? For example, how much? Also, could Vitamin C lower tinnitus and is it similar to bioflavanoids?
       
    22. Cityjohn
      Studious

      Cityjohn Member Team Research

      Location:
      Amsterdam
      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Food poisoning.
      I don't think it will help against tinnitus because there is absolutely no connection there. I take 140 mg in the morning, if I would be worried about noise exposure or Chinese food I would take 140 mg just before the exposure. If I was tapering off benzodiazepines I would take 500g twice daily in the form of a water tablet.
       
    23. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      That's some nice research there, @JasonP.
      This medication is basically indicated for MS and is quite expensive. I'd give it a shot since it's available where I live.
      But the price is sort of ridiculous, well over 100 euros for a box of 56 tabs at 50mgs (off-label).
      And since there is no way of knowing the proper dosage for T, I think some doctor should suggest how and when this medication should be used.
       
    24. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      If you do use it please let me know. It might be worth it to give it a try. I may call my psychiatrist and ask about it. I don't know if she would prescribe it for me but I guess it might be worth a try. I found this article on how it works by reducing glutamate and also works on NMDA and AMPA receptors.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580837/
       
    25. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      I did a little research and found a generic in my country at ~50 euros.
      Problem is, I called some pharmacies and apparently it's being withdrawn from the market.
      The only form of the drug available is the "official" one and it's only designated for hospital use.
      So it's a no go for me.
       
    26. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Wow that is weird...did they say why it was being withdrawn?
       
    27. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Probably because I didn't ask. :whistle:
      The reason, I would guess, is poor sales caused by the price tag and the low to non-existent prescription rate. I'd bet that 99% of doctors wouldn't even have heard of it.
      Just to be clear: the particular generic version is being withdrawn in my country. It's not a worldwide-retigabine type of situation.
       
    28. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      Found this:

      "The pathways causing activation of the middle ear muscles converge on the motoneurons as synaptic terminals. Stapedius motoneurons receive five types of synaptic terminals (Lee et al., 2008), the overwhelming majority of which contain vesicles that are round and are likely to provide excitatory input mediated by the neurotransmitter glutamate (Uchizono, 1965;Örnung et al., 1998; Torrealba and Carrasco, 2004; Rubio, 2004)."

      Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896885/

      I really wonder if I could get this prescribed just to try out. I don't have ALS though. Think it makes sense or am I totally out in left field here?
       
    29. gotyoubynuts

      gotyoubynuts Member

      Tinnitus Since:
      10/1990
      Cause of Tinnitus:
      Concert
      Would you rather have ALS than tinnitus, Jason?
       
    30. JasonP

      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?
       

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