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. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      Here it is some 25 euro pack of (240,15 SEK), I took 11. It gives me heartburn but to take pantaprazol I can't cos it damages hearing and I lost my hearing. Tinnitus is so loud now that if I wake up even with meds I can't fall asleep.

      I use trobalt, and melatonin, and 50mg of trazadone but I am losing hearing badly on left ear, right is ok. why left I don't know ;((((((((((((((((((((((((((((((((((((((. I am desperate:

      I checked LTD LSA levels in blood does my liver function ok and they repeated tests from last year and they say all is perfect: hormones, electrolytes, reumafactors, vitamin levels, well 4 pages of blood results, there is over 100, sight is same. They say I have +0,50 and +0,95. I can be astronaut. Yet I am dying and I will be selling trobalt to those who wanna try it, cos I think I will maybe last up to new year maybe even less, my story is same as Gabby's story

      I did not leave house in the last 40 days but 3 times to pick medicine

      "I have tinnitus and I want to die"
       
      • Hug Hug x 2
    2. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Oh no :( That is horrible. I feel so bad for you. I hope there is some way you can get help fast. I know you said a while back your hearing was getting worse and worse. :( :(
       
    3. Scared111

      Scared111 Member Benefactor

      Tinnitus Since:
      6/2016
      Cause of Tinnitus:
      Unknown
      How did this start? How did it get worse?
      I can't believe this can happen to people.
      Is there anything anyone can do? the hyperacusus is worse than the tinnitus? can you try that round window reinforcement procedure that bill is trying? or how about the meds he's taking?
       
    4. fhs
      Fine

      fhs Member

      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Gun range
      All of this is pointless if the drug isn't approved to treat tinnitus. Since the patent for the drug has expired in the US it means that there is no incentive for for-profit drug companies to test it and get it approved to treat something else. Even if it did work 99.9% of people wouldn't be able to get it without it getting approved. Also it's important for a clinical trial where there is a placebo group to really know for sure if it works.
       
    5. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      I got it sep 1 2013, from then it went up 31 times, thease last are terible, I am lousing hearing on left ear i dont know why... as it is worse tinnitus is worse.

      As it is progressive it grows and I just am finished, I cant go out, I went out of house 3 times in last 40 days, i got 17 kg from last May... well i dont know who is bill and i just know i am finished...
       
      • Hug Hug x 3
    6. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      What about a custom ear plug that blocks out external sound but that is also attached to a hearing aid that can fix your
      Hey Christian78, did the Riluzole have any effect on your tinnitus at all? :(
       
    7. Christian78
      Alone

      Christian78 Member

      Location:
      Gothenburg
      Tinnitus Since:
      (Sep 2013)
      Cause of Tinnitus:
      progressive tinnitus, time of expiring in next 3-6 months
      i dont know
       
    8. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      I found a decent diagram of what a synapse looks like (the one on the right below) when exposed to excitotoxicity. It also shows astrocyte to the right of the synapse. The little dots represent glutamate. In the normal synapse, there is a lot less glutamate in the synapetic cleft. In addition some glutamate has also gone inside the astrocyte next to it. From what I understand, Riluzole supposedly lowers glutamate and increases glutamate uptake into astrocytes and glial cells therefore reducing it in the synaptic cleft (too much glutamate in the cleft can over-activate the neuron). As I understand it, once glutamate is taken up into a glial cell through the glutamate transporters, the glutamate can be converted into glutamine which then can be used to convert into GABA in a GABA-ERGIC neuron.

      tumblr_m3rltkaqkr1rvt2wao1_500.gif

      GABA%20metabolism.jpg

      Do you all think this drug would be worth trying in benzo induced tinnitus?
       
      • Good Question Good Question x 1
    9. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      I found an article from NPR that talks a little about Riluzole. A man who took it had treatment resistant depression before. At the time of the article, he was depression free for a year. I saw a few stories where it also helped people with OCD and depression. Anyone on here take this medication for depression? If I was to get it, I would probably have to use coupon from a website like lowestmed.com because it is really expensive. It sounds like it might benefit me because it works on OCD and treatment resistant depression. At this point, I have not been able to get it prescribed for me.

      The article is here:

      http://www.npr.org/sections/health-...epression-drugs-offer-hope-for-toughest-cases
       
    10. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Okay, I was finally able to try Riluzole (100mg) and it took away my benzo induced tinnitus. I don't know for long..perhaps it will come back. I actually had it gone for a long time but then did something stupid and took it again with some other meds and it came back. I was putting up with it the whole day and then I took it and within 30 minutes to an hour it went away. Other types of my tinnitus that were caused by some other means did not go away. There may have been a possible lowering of another one of my sounds but it may just be placebo.
       
      • Useful Useful x 1
    11. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Okay, I want to give update on pricing here. I found a website lowestmed.com that has the drug for around $62 in one of my area pharmacies. This price was found on 7/8/18 so it could change. That is a heck of a price difference though compared to the other lowest discount price I found at $170. I would like to add that if you ever get a prescription check out lowestmed.com, wellrx.com, or goodrx.com. These sites require no membership at least as of 7/8/18 and you can look at various pharmacies for the cheapest price and print your coupon. Then turn in the coupon. It's very easy and I have saved a lot of money doing it. I even got drugs cheaper than a co-pay price which means even if you have insurance, check them out at least once.
       
    12. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Oops update here...the price I quoted was for 30 tablets instead of 60. The 60 tablets was $115 locally which is high but still cheaper than $170. I also checked goodrx.com on 7/8/18 and found a price of around $132 so another store has dropped the price since I checked it a while back.
       
    13. J.Hartog
      Worried

      J.Hartog Member Benefactor

      Location:
      Netherlands
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Life
      Hi jason, Is this stuff still working for you? My T is still bad during my benzo withdrawal. I need to do something... Does it give you any side effects? And is it safe to take with a benzo?
       
    14. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Well, unfortunately, I only have a few left so I figured I would save them in case I took a small dose of klonopin or had some alcohol and the certain type of "static type T" came back. So far I have been dealing with other types of tinnitus (which were caused by different ways than benzos). As far as the side effects go, I remember taking it and got a little tired for a bit and then it went away. There may have been a couple of places on my skin where I had some small wounds (not from the drug) and a mild pain would come briefly from them and go away but I'm not sure if that was the medication or not. Other than that I don't remember anything else.

      The Riluzole only seemed to help with my benzo induced static tinnitus and not any other type of tinnitus I had.
       
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    15. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Hey J.Hartog, did you ever try this out? It's supposed to help some with OCD but I never had enough to try it out long term. It was mostly just take it for one or two days max. I would be very interested if someone has tried this long term.
       
    16. Bobby Sinatra

      Bobby Sinatra Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Ambien Windrawal Suspected
      Do you recon that glutamate neurotoxicity and subsequent tinnitus caused by benzo withdrawal is permanent if neurons do not regenerate?
       
    17. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Good question, some people say you always heal even if it may take years, others talk of permanent damage.
       
    18. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Chinmoku I remember you mentioning that your tinnitus does not fluctuate at all. Another time you had mention it increases when you bend over.

      You could have later developed a somatic input. If there's somatic input it would probably be small nerve fibers close to a cranial nerve. VIII or XI and maybe even X. I doubt that it's occipital nerves. If the cause of T was vestibular, some transfer could have been made to a cranial area, so it's possible that a vestibular source has improved.
      https://www.ivyroses.com/HumanBody/Nerves/Cranial-Nerves.php

      How is your balance when you bend over and do you get dizzy? Any vision problems? I think I remember you saying you do.

      I know that you have lots of knowledge and it's obvious that you research.
      Two areas that you may have considered:
      https://www.sciencedirect.com/topics/neuroscience/vestibular-system

      Second area - hypertension or meds used for anxiety.

      Wonder if warm or cold compress therapy around ears and neck would help by 2-5 percent.
      If so, a working therapy model might give you a little improvement.
       
    19. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Greg, you are an angel as usual. I'll check the link and will try compress therapy, even a little relief from this 24/7 torture would help. There is definitely a somatic component, but it is now so loud and high pitch that I perceive it less in relative terms. When it was a little less distressing but still bad, bending over and laying down would increase it more perceptibly.

      You have an enormous culture on the subject. What do you think of the Gaba hypothesis? My tinnitus started with a cold/virus, had balance problems as well (now resolved), so I would say very likely a vestibular attack, hearing up to 8khz did not worsen with the virus, so the standard audiogram does not explain such a monster tinnitus. Transition to somatic could explain things a little, yes, but I'm wondering whether the GABA withdrawal and /or tolerance could explain it, and would it be permanent or could it go back a little once I have been off for a while? I can think of nothing else that may be causing the constant worsening. Trying to come off clonazepam now and stay off all drugs but I don't know if I can do that and stay alive. I have been helped already a lot by FGG and Star64 on this, but would value your opinion too.

      Also, I would like to ask you, do you think there is any scope in IT steroid injections at this stage (21 months in). The reasoning of one of the doctors I talked to is that one of my old ECOGs showed borderline hydrops and also I had a positive otoblot blood test, still a while back, and he says that both suggest I could benefit from IT steroid injections. I know it is advised to have them earlier on, in the beginning I had oral steriods/prednisolone without effect.

      Thank you for all your help Greg.
       
    20. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I can't see your doctor reasoning on this.
      https://www.dizziness-and-balance.com/disorders/autoimmune/otoblot.html

      One of the better articles steroid injections. Read page 127 - second column
      https://e-hmr.org/Synapse/Data/PDFData/0130HMR/hmr-36-125.pdf
      ------------------------------
      Still researching the b-nucleus of the inferior olive - GABA and other stuff.
      There may be some chemical treatments that might help you, but vitamins are useless.
       
    21. Chinmoku

      Chinmoku Member Benefactor

      Tinnitus Since:
      10/2018
      Cause of Tinnitus:
      Unknown, possibly medication
      Looks like the injection might not even reach the site at all. So the risks (balance problems, hearing loss, worsened tinnitus) outweigh the benefits? I'm desperate. I'm tortured and need to do something :(
       
      • Hug Hug x 1
      • Optimistic Optimistic x 1
    22. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      I see this thread came back up. Has anyone on here taken this drug long term? If I remember right, I think I only took this maybe one day or maybe two days in a row at a time and then went a while before trying it again.
       
    23. AUTHOR
      AUTHOR
      JasonP
      No Mood

      JasonP Member

      Tinnitus Since:
      6/2006
      Okay, a little update. I took one 50mg pill this morning. I hadn't had one in a LONG time. I think I have only one pill left. I took it this morning while laying down. It may have affected me differently if I took it standing up due to my dysautonomia (pulse is higher when standing, blood pressure can change, etc. - I have no idea because I have always taken it in the morning laying down)

      Anyways, it may have reduced the small amount of static from my tinnitus but didn't reduce my whistling tone. It was calming and made me a little sleepy. I was laying down on one of my sides and one of my nostrils became clogged up (possibly after I drifted to sleep for a bit, I can't remember). That must have been due to the medication because that isn't normal for me. I think when I flipped to other side, that nostril became clear but the other nostril clogged up.

      Other than that and making me sleepy, I didn't notice any other side effects. I think it also had a little anti-OCD affect on me thinking about the tinnitus.
       

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