Low Dose Naltrexone (LDN)

Discussion in 'Support' started by Coyotesheaven, Sep 29, 2016.

    1. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      Multiple
      My naturepath is considering starting on me on a very small amount of naltrexone on the suspicion that I have an autoimmune disorder, because the drug has been used, with some efficacy, in many autoimmune disorders (MS, fibromyalgia) and seems to decrease inflammation.

      I have heard accounts, however, that even low doses of this medication can exacerbate tinnitus (it interferes with so many chemo-receptors, so I am not surprised).

      Has anyone been prescribed this to treat an autoimmune disease, or for other reasons? If so, have you noticed any increases in tinnitus spikes or other hearing problems?
       
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    2. The Red Viper
      Curious

      The Red Viper Member

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Neck injury (Tendonitis @ trap/SCM junction)
      If you have an autoimmune disorder, have you done any antibody tests? Also, why are you seeing a naturopath? They're not real doctors.
       
    3. AUTHOR
      AUTHOR
      Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      Multiple
      @The Red Viper

      My antibody tests, as of March 2016, were negative for lupus and rheumatoid arthritis, and any autoimmune ear disease. My current tests, which came back a week ago, showed that my immune system is ok for the most part. However, there is a particular leukocyte count that is abnormally low in me as my September tests have showed. I also have one of four markers for an autoimmune inner ear disease, although I am unlikely to acquire the condition because of that alone.

      The people who performed the autoimmune tests were naturopaths, but among them were also licensed medical professionals (MD degrees). My general practitioner is essentially a naturepath.

      All I can say to your comment regarding naturopaths is that my naturopaths have helped me far more than any neurologist or ENT I have visited, actually care about me as an individual, and are very open minded. They have pointed me down many avenues that everyone else has failed to consider. They have also started me on hormonal therapies that, for periods of time, have saved my life and gotten me out of suicidal depression waves.
      Without their help I would presently be in the dark corners of a psychiatric hospital because the vast majority of other specialists I have seen have told me I am nuts and that my health problems are all in my head. And, without my naturopath's advice, I could have been made sicker by many of my medications prescribed by all the 'real doctors' I have seen.

      Do you have any answers to the actual question I posted?
       
    4. The Red Viper
      Curious

      The Red Viper Member

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Neck injury (Tendonitis @ trap/SCM junction)
      Fair enough, I would just say don't put too much faith into alternative medicine. While it does help people sometimes, it may just be a form of the placebo effect. I have no love for regular doctors either, I as find that they completely lack empathy, but I wouldn't jump to alternative simply because they lack empathy. Science is real whether or not there is any empathy present, though empathy should be a requirement for doctor training.

      Check this (go to 6:30, but whole video is worth watching):

      Richard Dawkins exposes homeopathy for what it is
       
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    5. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013

      Hi

      Im in the same boat as yourself.

      Did you end up using LDN? If so, result?
       
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    6. AUTHOR
      AUTHOR
      Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      Multiple
      @DebInAustralia

      I haven't yet, because nobody knows what's wrong with me. I may have a neurologic autoimmune disorder, but I think some of my problems are due to mechanical abnormalities that have developed in my head/ears/neck from repeated minor injuries.

      I'm not going to consider anything like this until it is confirmed that I have an autoimmune disease.
       
    7. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      I see its used for chronic pain states as well ie fibro.

      If it helps you, it could be diagnostic of autoimmunity
       
    8. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      I've been taking it on and off for six months. It caused some spikes at first. Taking a couple days off it sometimes makes things very quiet.
       
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    9. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      Hey linearb,

      I'm having another setback and having trouble getting 'back on the horse', and considering LDN for myself.

      Do you think the spike was dose dependent?

      Are you sure it was the LDN?
       
    10. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      I'm not really sure of anything, no.

      Any negative effects, if they occurred, were minor and very short term (hours to days).
       
    11. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      Hi linearb,

      Do you recall what dose of LDN you took?
       
    12. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      I think various doses from 0.25 - 3 mg.
       
    13. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      Thanks for that...

      Did you benefit in anyway from the LDN? I know you mentioned spikes at one point?
       
    14. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      I felt like I was to some extent but it was within the realm of what could be placebo or a real effect enhanced by placebo.

      It was not a dramatic, obvious difference like my current cocktail (Klonopin 2 mg + Gabapentin 600 mg, for nearly 3 years now.)
       
    15. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      Thanks linearb,

      Thank you for your input.

      I'm wondering what would have happened if you continued with the LDN (neuroinflammation), alongside Klonopin and Gabapentin (to correct GABA/Glutamate imbalance, resulting from cortical and/or cochlear inflammation)?

      Is that a daily dose you're on linearb?

      I have never trialled benzos, outside an occasional small dose of Diazepam years ago for fear of tolerance.

      I know you're very knowledgeable regarding benzos from your posts.

      Can you explain how you reached your current strategy?

      Kind regards.
       
    16. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      No idea; I'd rather be on less drugs than more, and so adding another one into the mix when life is basically fine doesn't seem wise to me.

      Yes, generally combined with some amount of cannabis (legal here).

      I was basically railroaded onto them as an 18 year old with an anxiety disorder who probably would have been better served by being forced to live in a Zen monastery for a year, but, that's water under the bridge. I am, however, somewhat suspicious that being on Klonopin from the ages of ~18-24 primed my brain to want it, in a way that would not have happened without that exposure during years important for cortical formation. On the other hand, I already had some tinnitus by 18 when all this started, so, can't really blame it on the drugs.

      I withdrew from Klonopin when I was 25, blasted my ears with noise when I was about 30 and got much worse tinnitus which suddenly became a serious functional problem. I went briefly back on benzos, which seemed to work, but I wasn't comfortable committing to them so I then withdrew again and spent a mostly miserable 6 years trying everything under the sun, in as scientific a way as possible.

      By the time 2017 rolled around, I had a small child to be concerned with, I had experimented with as-needed valium enough to have some suspicion that benzos were still somewhat effective on me, and so at some point I just stopped fighting the idea. It was actually kind of rocky until I got back up to my full original dose of 2mg/day.

      The gabapentin was added on the basis of so research by a Dr. Shulman in NYC who thinks it's an effective combination for tinnitus; I do feel like there is some added benefit, in that when I have attempted to cease the gabapentin, the tinnitus becomes much more difficult to ignore. As for the Klonopin, I think it's doing as much to make it possible to ignore the noise, as it is to actually suppress it.

      These are dangerous drugs which can be incredibly difficult (even fatal) to withdraw from, and which do not necessarily work at all for most people with tinnitus, and if so, there is no guarantee they work long term. I considered this cocktail a weapon of last resort for a long time, but, finally just got sick of waiting and having long stretches of life that were just absolutely miserable.

      It's certainly possible there will be a price to be paid for this, sooner or later. There's not much point in worrying about that in 2020, everything is uncertainty right now.
       
    17. Bill Arsenault

      Bill Arsenault Member

      Location:
      Boston.
      Tinnitus Since:
      Permanent and intrusive since 2017.
      Cause of Tinnitus:
      Medication / Noise Over Exposure
       
    18. T Toledo OH

      T Toledo OH Member

      Tinnitus Since:
      2/26/20
      Cause of Tinnitus:
      Likely loud noise and earbuds
      Do you take the full 2 mg and Gabapentin at one time or space throughout the day?
       
    19. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      Old post I know, but at end of my tether...

      Seriously considering LDN.

      What dose were you taking?
       
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    20. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      10 mg, maybe?

      This was many moons ago

      Whatever the effect was, it was laughable compared to Klonopin + Gabapentin. Of course, I am basically stuck on these now...
       
    21. danielthor

      danielthor Member

      Location:
      Denmark
      Tinnitus Since:
      04/2020
      Cause of Tinnitus:
      Unknown
      @linearb, what’s the mode of action of Klonopin + Gabapentin? Is that Dr. Dirk De Ridder’s protocol?
       
    22. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      I think that's Abraham Shulman's protocol.
       
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    23. Jerad

      Jerad Member

      Location:
      Ohio; United States
      Tinnitus Since:
      2002
      Cause of Tinnitus:
      Medication ototoxicity
      @DebInAustralia, are you considering LDN? I have been experiencing the hissing/static tinnitus that is not maskable and varies in intensity. It also has zaps in it that hurt physically at times. Is your tinnitus like that? And if so, do you think LDN could help us? My tinnitus was caused by an ototoxic reaction. I’m not quite sure what LDN aims to do. Thanks for the help.
       
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    24. UrbanBubblegum
      Bugridden

      UrbanBubblegum Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      HP-bacteria treatments
      My tinnitus went through the roof 15-20 minutes after taking 0.75 mg of LDN. It also caused severe headache, dizziness and ear fullness. I tried it for 3 days and threw in the towel.

      I still have super loud tinnitus (now both hissing high tone and low bass tone) in addition to the dizziness, headache and ear fullness.
       
    25. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      A few questions:

      - Did your tinnitus ever fluctuate? Is it chronic or new?

      - I've heard of headaches with LDN but not dizziness or ear fullness. You might have something else going on there?

      - When you say you still have super loud tinnitus, do you mean you are spiking days into stopping the LDN with new tones? How can you be sure it was the LDN?
       
    26. UrbanBubblegum
      Bugridden

      UrbanBubblegum Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      HP-bacteria treatments
      Hi @DebInAustralia.

      Thanks for replying. Prior to starting LDN, my tinnitus was a very subtle high tone (hissing). Quite manageable compared to my current state.

      LDN was the only thing I introduced, so I am 100% sure LDN is the cause of spiking my high tone (hissing) and introducing a new constant bass tone. The latter is an absolute mare.

      I haven’t taken any LDN since Thursday night, so this is my 6th day without LDN. I am really frightened and scared that LDN has caused permanent damage :-(
       
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    27. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Hall of Fame Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      12/2013
      I wouldn't worry it'll be permanent.

      At worst, I think it can cause spikes because of the way it interacts with the NMDA receptor.

      If it has activated the receptor, maybe try Magnesium and Zinc; which are known to inhibit the NMDA receptor from releasing Glutamate.

      What dose were you taking?
       
    28. UrbanBubblegum
      Bugridden

      UrbanBubblegum Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      HP-bacteria treatments
      Thanks for taking your time to reply, @DebInAustralia :) I really appreciate it!

      I took 0.75 mg (1/4 of a 3 mg tablet) for three days last week (Tuesday, Wednesday and Thursday). Immediately after taking the first dose I got like "a rush of blood to the head". Really weird feeling.

      I talked to my GP today (he prescribed it) and he told me not to take it again :(
       
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    29. Diego LR

      Diego LR Member

      Tinnitus Since:
      2020
      Cause of Tinnitus:
      Unkown
      @UrbanBubblegum, did the spike subside after taking LDN? How are you doing?
       
    30. UrbanBubblegum
      Bugridden

      UrbanBubblegum Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      HP-bacteria treatments
      @Diego LR, the spike eventually subsided, but my balance is worse than before, and I’m now struck with lots of headaches :cry:
       
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