LDN (Low-Dose Naltrexone) Experiences and Effect on Tinnitus, Anyone?

Discussion in 'Support' started by marxxx, Dec 7, 2017.

    1. Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Hi Malin,

      I am on 1 mg.

      I am currently pregnant and under the guidance of my doctor increased 2 mg as I noticed the tinnitus ramping up again over the last week or so.

      My tinnitus has always fluctuated with my hormones, I suspect my hormones cause inflammation at various times in my cycle (before menstruation and for a few days after).

      Obviously at 26 weeks pregnant, my hormones have gone crazy.

      Surely enough, I’ve responded to 2 mg and am enjoying my silence again while coping with my pregnancy.

      I have had no issues with sleep either way, and I’ve noticed maybe more vivid dreams since being on LDN but that’s really it.
       
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    2. Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      I wouldn’t go to a GP. They know little about Naltrexone at low doses. It’s just not mainstream sadly.

      I’d seek out an integrative doctor.

      I can recommend Jenny Bromberger.
      She’ll do a phone consult I think, her practice is in Woolloomooloo, and she sends her scripts to Kingsway compounding pharmacy in Sydney.

      I found a doctor closer to home, so I see her.
      but I spoke with Jenny beforehand and she was happy to prescribe LDN.

      I pay just under $100 for 100 1 mg tablets, a dollar a day - totally worth it!
       
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    3. Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      thank you! I had gotten used to my tinnitus, so it wasn’t the main focus of my life BUT I still needed to mask at night and it irritated me when trying to watch TV at night.

      I barely think about it anymore and I feel like myself again, or at least 95%.
       
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    4. twa
      Busy

      twa Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      2017- mild /Sept. 2020-moderate
      Cause of Tinnitus:
      meds/acoustic trauma
      Have you ever stopped the LDN and had the tinnitus increase?
       
    5. AliasM
      Depressed

      AliasM Member

      Location:
      Australia
      Tinnitus Since:
      09/2020
      Cause of Tinnitus:
      Botched lumbar puncture, CSF leak
      I have my script for LDN. I don't think I am going to start now though. The overwhelming majority of people in the LDN Facebook groups said that LDN either increased their tinnitus, or caused it. :(

      I read 1 maybe 2 posts over the course of several days of reading, where they said it reduced tinnitus. No one really had anything to say about hyperacusis.

      I can't risk an increase to my tinnitus volume. I wouldn't survive it.
       
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    6. Mentos

      Mentos Member Benefactor

      Location:
      Cracow, Poland
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      Noise induced, loud rock concert
      I just got 28 tablets of 50 mg Naltrexone. Would you recommend me to go with a low dose of 5 mg a day or should I try a high dose of 50 mg a day?

      I have tinnitus, no hyperacusis.
       
    7. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Single 25 mg dose of (anticholinergic) drug Promethazine
      Hi @Mentos -- I would suggest you start out at a lower dose. I've heard of people getting pretty major reactions at only 5 mg. starting out, but got a lot of good benefits from starting much lower, like about 1 mg. or so, and then gradually increasing it to about 3-4 mg. Some people are ultra-sensitive to it, and it only takes a small amount to make a big difference.
       
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    8. lymebite
      Vegged out

      lymebite Member Podcast Patron Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      My understanding is that the low dose (1 to 5 mg per day) and the full dose (50 mg per day) produce completely different effects. The low dose tricks your immune system into producing extra endorphins. The 50 mg dose does not do that.
       
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    9. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      In a nutshell yes. The verdict is still out whether or not full dose has anti-inflammatory effects. Definitely LDN has anti-inflammatory effects and as such, is helpful with autoimmune diseases on many levels.

      I wouldn’t start with more than 1mg. Many people start at 0.5 mg and increase weekly or biweekly until they get to a typical maximum of 4.5 mg. My understanding is that Naltrexone at 50 mg will help the “perception” of tinnitus but LDN will help the perception and inflammation (if this is potentially the underlying cause of your tinnitus). Good luck and let us know the results.
       
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    10. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      Hey @Samantha R, I hope you're still doing well.

      Quick question: did you continue on the diuretics during LDN or did you stop after starting LDN?

      I'm wondering if there was a synergistic effect happening.
       
    11. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      Just started taking it last night for Sjogren's. I am at 2 mg and will be amping it up to 4 mg in a couple of weeks. Have read good things, fingers crossed.
       
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    12. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      Any update? I know it’s only been a few days but have you noticed any change?
       
    13. Malin

      Malin Member

      Tinnitus Since:
      01/2018
      Cause of Tinnitus:
      Unknown
      @Marin and everyone on this thread, how are you doing?

      Have you found a doctor willing to prescribe LDN and, if so, have you started trialing it? How’s it going?

      I’m seeing my GP tomorrow and will discuss it. Quite anxious about trialing LDN though as it might affect/disrupt one’s sleep. Is that something you have heard / read?
       
    14. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      LDN can disrupt sleep though it’s almost always transient. Usually after 2-3 weeks the side effects subside and sleep usually improves overall. A lot of people report vivid dreams but even that usually goes away.
       
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    15. Marin
      Happy

      Marin Member

      Tinnitus Since:
      06/2020
      Cause of Tinnitus:
      SSNHL (probably previous noise exposure, too)
      I’m going to preface this with I am the worst tester in the world because my ears react poorly to EVERYTHING including many supplements that other people take with no problems.

      I took a small dose (0.25mg) of LDN for three days. Thankfully, it had no impact on my sleep. The first day I had less ear pain, yay! Then over the next two days the ear pain got worse and worse. Same thing happened to me with other anti-inflammatories like PEA (Palmitoylethanolamide) and Chinese herbs for inflammation. So, I’m an odd case and don’t let my bad experience dissuade you from trying.

      I might try again in the future at even a smaller dose to see if I can still get the benefits without the rebound pain that I usually get.
       
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    16. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      This is really strange. Anti-inflammatories seem to help the majority of sufferers, regardless the cause of tinnitus. The fact that yours gets worse is really odd and might be a clue of another underlying condition causing your issue.
       
    17. Marin
      Happy

      Marin Member

      Tinnitus Since:
      06/2020
      Cause of Tinnitus:
      SSNHL (probably previous noise exposure, too)
      Agreed that it’s very odd. Sadly, no doctor wants to help me figure out the problem, and so far my functional doctor/nutritionist hasn’t been able to figure it out either. It’s quite an awful and frustrating position to be in.

      I’ve read a couple random comments from people who said pain could get worse for a while once swelling goes down because there is less “cushion” in the affected tissues, but I haven’t been able to find any medical literature that even mentions that happening.
       
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    18. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      Ya, I don’t know about that but I would say maybe try it for a little longer and see if it gets better. Typically, LDN can take quite a while to work properly. Sometimes up to 6 months. I can only say that if your tinnitus is getting worse while you’re on it, maybe you just need a little bit more time to reap the benefits.
       
    19. Marin
      Happy

      Marin Member

      Tinnitus Since:
      06/2020
      Cause of Tinnitus:
      SSNHL (probably previous noise exposure, too)
      Thanks, I’m certainly tempted.

      My tinnitus was unaffected by LDN. It was my hyperacusis ear pain that got much worse... like I’d been punched in the ears making them ache horribly and I couldn’t get out of bed for a day or two. It was rough.

      Maybe starting a MUCH lower LDN dose would help.
       
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    20. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      .25 mg is pretty much the bottom starting dose.

      Out of curiosity, have you tried taking high dose Thiamine? I found that B1 (Thiamine) about 600 mg per day seemed to help with my hyperacusis.Other than that, Magnesium, vitamin D and MSM.

      The B1 seems to spike my tinnitus temporarily but since it acts on the peripheral nervous system, it’s possible that there is some healing happening and my tinnitus spikes as a result. Who knows.
       
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    21. Marin
      Happy

      Marin Member

      Tinnitus Since:
      06/2020
      Cause of Tinnitus:
      SSNHL (probably previous noise exposure, too)
      Yeah, I thought 0.25 mg was pretty low, too. I have seen comments from people who needed to start even lower, though.

      Oh reeeeeeeeeally? Thanks for the tip! I do have some Thiamine that I’ve been too scared to try because a Vitamin B Complex seriously inflamed my ears. Maybe I’ll get brave and give the Thiamine a try.

      I really appreciate your input!
       
    22. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      Look up Dr. Lonsdale or Dr. Constantini and Thiamine. Lonsdale pushes TTFD (Thiamine Tetrahydrofurfuryl Disulfide) and Constantini says Thiamine HCL works just as well. I know the dosage seems high but it’s also water soluble so shouldn’t cause any problems or overdose.

      Have a read and of course see if you feel comfortable. You can start around 100 mg, then move up from there if you see benefits. Good luck.
       
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    23. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      I'm on 3 mg of LDN and was on 2 mg for like 10 days. It's unclear if it's helping consistently yet. Some days I feel better and others are meh. The only main side effect it gives me is fatigue.
       
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    24. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      Too bad you’re getting that side effect. If anything it should be the opposite. Over a few weeks time the side effects should subside. Hopefully they do and you’ll report back with some improvements.
       
    25. Zugzug

      Zugzug Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      Yeah, we'll see. I'm starting Methotrexate in a few days so if I see improvements, it may not be clear what's helping. I really don't care if I'm improving. It could take a variety of things like immunosuppressants, immunomodulators, anti-inflammatory supplements, low salt, good sleep, etc. I really don't care. I would genuinely have a limb cut off to improve my hyperacusis by even 50% consistently.
       
    26. Marin
      Happy

      Marin Member

      Tinnitus Since:
      06/2020
      Cause of Tinnitus:
      SSNHL (probably previous noise exposure, too)
      I think it’s completely acceptable to “throw the kitchen sink” at an illness that causes so much suffering. I know it’s not scientific, but that doesn’t matter when you desperately need relief. I sincerely hope any combination of those things help you.

      And yeah, I’d happily cut off my own limbs to be rid of hyperacisis.

      P.S. I forgot to mention that I had serious fatigue on my last day of LDN, too. People say it can sometimes take months to see a benefit so I hope it helps you in the long run.
       
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    27. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
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    28. jb1014

      jb1014 Member

      Tinnitus Since:
      05/2021
      Cause of Tinnitus:
      LDN
      I developed my tinnitus after taking LDN.

      I would not take it because it works by shutting your immune system down. If you have something attacking you, it will get worse.
       
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    29. Lukee

      Lukee Member Podcast Patron Benefactor Ambassador

      Location:
      Toronto, Canada
      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Wim Hof Breathing Exercises
      This is not an accurate statement. LDN does not “shut down” your immune system.

      It’s very possible that LDN triggered your tinnitus, it has happened to others as well though usually it’s transient and goes away once they get off. It usually is able to help with tinnitus especially in cases where neuro inflammation and/or inner ear inflammation or hydrops are involved.

      It’s unfortunate that LDN did not have a good effect for you but I doubt the mechanism you describe in your other post is correct. Anything is possible but in general LDN doesn’t allow for viruses to “proliferate” instead it only dampens the inflammatory response to the virus. If in fact your problems were caused by a virus or bacteria, then you should consider the appropriate course of antibiotics or antivirals.

      You mentioned an ear infection, did you take antibiotics for it? Have you tried antivirals? Lysine and Monolaurin are both great for fighting viruses particularly HSV, so if you believe this is your issue I would get on them both immediately.

      How long were you on LDN before it caused tinnitus? Are you still taking it and what is/was your dose?
       
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    30. Clemery76

      Clemery76 Member

      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Unknown
      Hi everyone...

      I stumbled across this forum today after looking up Low Dose Naltrexone, which I have just been prescribed as a possible treatment for my tinnitus. Although LDN was previously mentioned by my audiologist (one of many), it was actually a medical nutritionist who prompted me to try it and give me a prescription for it.

      However, she says that I should be on a gluten-free diet if I am to try LDN, as it can inhibit its effectiveness... so I just wanted to see if those of you who have found positive results using LDN were on any kind of gluten-free diet or any other notable dietary regimes?

      For background... my tinnitus started nearly two years ago as a very high pitched squeal (14,000hz) that seems to be central the back of the head (occasionally veers slightly to the right). I have had MRI's, CT's, cerebral angiograms, and every test comes back normal, although I do have dehiscence in both ears (thinning of the bones to the point of holes appearing in them). This apparently is neither the cause nor a threat to the ringing that I hear though.

      I have tried various sound therapies, jaw physio, hypnothepary... all to no avail. I have also tried Melatonin 3Mg which was also suggested to help tinnitus patients, but after a month I gave it away as it seemed like my tinnitus was getting even worse quicker.

      So I am now going to try the LDN, but was just curious as to whether anyone could comment on the relationship between gluten and LDN.

      I understand that LDN has caused vivid dreams for some people, however I have had multiple vivid dreams ever since my tinnitus started (where previously I rarely remembered my dreams), so I guess I am used to that.

      Thanks in advance!
      - Clemery
       
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