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

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

    1. marxxx

      marxxx Member

      Tinnitus Since:
      1/14
      Cause of Tinnitus:
      unknows
      Hello,

      Does anyone have any experience with low dose naltrexone?
      I have a myriad of problems that probably aren't worth diving into right now, but my doctor has suggested starting me on LDN. I have been bat sh*t crazy about not taking any med that cause or exacerbate tinnitus. I have stopped stuff I was on, and refused other meds. However, LDN reportedly can help with numerous issues that I deal with, and potentially keep me off several other meds in the future.

      That being said, I am terrified to take it.

      Can anyone here weigh in with experience?
      Did it aggravate your tinnitus? If so, did your tinnitus remain elevated while you took it? Did it remain elevated after stopping?

      Thanks in advance!
       
      • Like Like x 1
      • Good Question Good Question x 1
    2. mjroth

      mjroth Member

      Location:
      California
      Tinnitus Since:
      2000
      Cause of Tinnitus:
      somatosensory
      Assuming your doctor wants you to go on LDN because you have some inflammation condition (not related to your T). Since T is often. but certainly not always, caused or aggravated by nerve inflammation (making your nervous system hypersensitive), there is a chance 30% or so that it will decrease your T symptom. If nerve inflammation is not the cause of your T, it is very unlikely that LDN (be such a small dose) will make it worse.
       
    3. Sharman

      Sharman Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      digoxin
      I've taken LDN for over a year, 4.5 mg. No effect on my tinnitus. Does make you dream like crazy, tho--I now take it in the morning instead of evening, too exhausted by all the dreaming. Good luck
       
      • Like Like x 1
    4. lymebite
      Vegged out

      lymebite Member Podcast Patron Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      This link seems interesting, with a report of a small clinical trial with apparently really good results. Of 14 patients, tinnitus improved in 9 of them:

      “Improvement of tinnitus (according to CGI) was reported by nine patients. In five of these nine patients tinnitus remitted completely during the naltrexone treatment. In one patient the tinnitus stopped after few days of treatment, in one patient after 2 weeks, in one after 4 weeks and in two patients after 8 weeks of treatment. After stopping naltrexone, tinnitus started again in one patient, however on a lower level than before treatment. The complete remission of tinnitus was reflected by a complete or near complete reduction of the scores in the different used assessment instruments (Figures 1 ,2). The tinnitus duration in those patients in which tinnitus remitted completely ranged between 3 months and 9 years.”

      https://patents.google.com/patent/WO2011145062A1/en
       
      • Like Like x 3
      • Informative Informative x 1
    5. Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Hi Guys. LONG POST AHEAD. PLEASE READ.

      Hope all is well in these crazy times.
      It’s lockdown madness in Victoria Australia, incompetence abounds in our Government here.
      Anyway COVID-19 aside, I’ve had a rough couple of months.

      I’ve self diagnosed myself with Endolymphatic Hydrops, potentially triggered by an IVF cycle (hormonal).

      It started with myoclonus in my right middle ear, which eventually became worse and I had a sudden low frequency hearing loss, not noticeable except for a sudden onset of diplacusis, low frequency roaring tinnitus heard over everything, shocking reactive tinnitus/hyperacusis, ear fullness so bad my ear felt like it would burst and feeling like I had a swimming pool in my ears. Confirmed on a hearing test I’ve lost 45db at 250 and 500 and 35 dB at 1000.

      Three ENTs - one diagnosed SSNHL, one said a transient hormonal shift and the other Meniere’s.
      I start a low salt diet and already had myself on high dose Prednisolone.

      Death is looking pretty appealing at this point.

      Agony to be around my kids as every noise has a robotic echo attached.

      I think I need diuretics at this point as I’m thinking Meniere’s without the vestibular symptoms.
      No damn ENT will prescribe, so go to emergency and beg the doctor in charge for a diuretic. He says it is unlikely to work, but prescribes anyway. 24 hours later, roaring tinnitus gone, no diplacusis and no reactive tinnitus. Still have on/off myoclonus, but still better than I was! Hearing test confirms all low frequencies are back to normal.

      Anyway, I still feel like my right ear is wet, there is fluid building up and one night, my left ear feels full and wet and I just know I have bilateral Endolymphatic Hydrops / Meniere’s (?).
      Anyway, lots of research - bilateral Meniere’s almost always auto immune. Must try something to settle my immune system.

      My dear friend @DebInAustralia suggests LDN (low dose naltrexone). She has saved my life at this point, I’m about to discover this is my magic pill.

      I find a doctor to prescribe this, not easy. I start at 1mg taken at night.
      Within three days, I can tell the ‘wet’ feeling and the minor ear fullness is improving.
      5 days in, the ears are completely normal. No symptoms at all. It continues this way at a month and counting now.

      What’s more, I have no tinnitus at all, my head hissing is gone, barely audible in the quiet.

      I just wanted to share my story and what helped me with not only my Hydrops, but my regular hissing tinnitus.

      Might be something to add to the list of potential treatments.
       
      • Like Like x 4
      • Winner Winner x 3
      • Informative Informative x 1
    6. Thuan

      Thuan Member

      Location:
      California
      Tinnitus Since:
      05/2018
      Cause of Tinnitus:
      Ear infection right ear 2018. Sound trauma left ear 2020.
      @Samantha R I've read your story before and I'm so glad you're improving! You are such a fighter to get treatment when your normal ENT docs would not help you. Regarding your hissing and wet/full symptoms being gone, did ALL your tinnitus sounds go away? Will you be following up for some auto immune testing to confirm?
       
      • Like Like x 1
    7. LilSass
      Loved

      LilSass Member

      Location:
      Ontario, Canada
      Tinnitus Since:
      November 2019
      Cause of Tinnitus:
      Likely ototoxic medication
      • Helpful Helpful x 1
    8. twa
      Fine

      twa Member Benefactor

      Location:
      US
      Tinnitus Since:
      2017- mild /Sept. 2020-moderate
      Cause of Tinnitus:
      meds/acoustic trauma
      I'm thinking about taking LDN. Are you still taking it? Is it still helping with your tinnitus? Any info would be helpful.

      Thank you,
      Twa
       
      • Like Like x 2
    9. Malin

      Malin Member

      Tinnitus Since:
      01/2018
      Cause of Tinnitus:
      Unknown
      @Samantha R, are you still around here on the forum and can let us know how you are doing these days? Are you still on LDN and if so is it still working well and helping you with the tinnitus? Thank you greatly, I was so happy to read about your success!
       
      • Like Like x 1
    10. Samantha R

      Samantha R Member Podcast Patron Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Hi @Malin, I do check in from time to time.

      I am still on LDN and it’s still working its magic. My tinnitus is barely audible unless I think about it in a quiet room. I still take 1 mg.

      @twa, see my post to Malin above. Still using it and it’s worth a try. It’s a safe drug at low dose so no harm in trying.
       
      • Like Like x 2
      • Winner Winner x 2
      • Agree Agree x 1
      • Friendly Friendly x 1
    11. Malin

      Malin Member

      Tinnitus Since:
      01/2018
      Cause of Tinnitus:
      Unknown
      @Samantha R, that is so great to hear! Thank you for your answer!

      May I please ask, what’s the dosage you are on? Morning or night? Did you experience any side effects, I’m especially thinking about if LDN affected your sleep at all at first, and/or still is affecting your sleep?

      Thank you greatly!
       
      • Like Like x 1
    12. AliasM
      Depressed

      AliasM Member

      Location:
      Australia
      Tinnitus Since:
      Dec 2020
      Cause of Tinnitus:
      ? Autoimmune, daily headaches, Ibuprofin, BP meds, Virus?
      Hi, I am in Australia too (Central Queensland).

      How do you suggest I approach my GP about getting a prescription for LDN? What was your angle?

      I just read it is not available on the PBS and you have to get it compounded by a chemist. How much do you pay? Just out of curiosity. I'll pay whatever it costs if it helps my symptoms.
       
    13. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      I’ve been dealing with a neuro researcher (friend of a friend) who has some experience with tinnitus through his research. One of the things he mentioned as a possible treatment was LDN. I already knew quite a bit about it as I was researching it for other issues as well as for a friend suffering from some autoimmune disorder so it wasn’t at all surprising.

      He believes that LDN works on multiple levels but that its anti-inflammatory effects, especially in the brain, are likely the reason why it helps with tinnitus and related disorders. He has seen compelling evidence that LDN works for a variety of neurological and physical symptoms especially those related to immune function and inflammation.

      I will likely try this at some point but it’s a little difficult to get doctors on board with the idea (not sure why, it has a great safety profile) unless you are on your death bed.
       
      • Like Like x 1
    14. BrStan@

      BrStan@ Member Benefactor

      Location:
      London
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Acoustic trauma
      How come more people here haven't tried LDN?
       
    15. lymebite
      Vegged out

      lymebite Member Podcast Patron Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      There is another thread about LDN with a couple more reports.

      LDN (Low-Dose Naltrexone) for Hyperacusis Ear Pain?

      There is also some discussion about LDN in the various tinnitus and hyperacusis Facebook groups. And also in the various LDN Facebook groups, if you join them and search on "tinnitus" you will find a lot. Spoiler alert - LDN does not seem to be a miracle cure in most cases for tinnitus.

      My opinion is that trying it out can be a good idea for anyone to consider, for these reasons:

      1. Many reports of improvement of many conditions

      2. Low risk / side effect profile

      3. Very low cost if purchased in the 50 mg Naltrexone tablets and diluted with distilled water to achieve the specific desired low dose. For me it was pennies per day.
       
      • Like Like x 1
      • Informative Informative x 1
    16. DebInAustralia
      No Mood

      DebInAustralia Member Benefactor Advocate

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      If you've got an open minded gp, print off info from here for your GP to consider:

      LDN Research Trust

      Read Linda Elsegood's book:

      The LDN Book: How a Little-Known Generic Drug ― Low Dose Naltrexone ― Could Revolutionize Treatment for Autoimmune Diseases, Cancer, Autism, Depression, and More

      If you get nowhere with your GP, try an integrative doctor, who are more likely to be familiar with prescribing it (try Lyme literate integrative doctors).

      If you still can't find someone, contact your nearest compounding chemist, and ask them who your prescribers are in your area.

      Dosing: start low eg., 0.5 mg. Not recommended to exceed 4.5 mg. If you struggle with sleep, take it in the morning.
       
      • Informative Informative x 1
    17. Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      @AliasM just shared with me that there have been studies that found that high doses of Naltrexone (50 mg) were shown to be more effective in treating tinnitus than the lower doses. Does anyone know if the larger, 50 mg, dose has any beneficial effect on the immune system and pain like the low doses do?

      @lymebite, @DebInAustralia, @Lukee, thoughts?

      @AliasM, I hope you don’t mind me sharing this here, too. I’m not trying to steal any thunder! My mind is just kinda blown from this information.

      The effect of naltrexone on the perception and distress in tinnitus: an open-label pilot study
       
      • Like Like x 1
    18. lymebite
      Vegged out

      lymebite Member Podcast Patron Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      I think that's a great question. My primary care physician who agreed to prescribe the LDN actually suggested it might be worth trying the standard 50 mg dose. But I haven't done that yet.
       
      • Informative Informative x 2
    19. Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      Well, that’s interesting! I’m also jealous that you have such an open minded GP.

      I know this is a tinnitus forum, but my main concern is ear pain relief. I also feel like I’m developing some level of CRPS from being in constant pain for so long, and I have read about how the lower doses help modulate glial cells thus helping with pain and central sensitization. I’ll have to look around to see if I can find any information on the higher doses and pain/glial cell activation.

      Please do let us know if you ever decide to try out the higher doses. I’m such a wuss with medication that I have no choice but to start out low.
       
      • Like Like x 2
      • Agree Agree x 1
    20. FGG
      No Mood

      FGG Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      That's really interesting considering the link between chronic stress and axonal dynorphin (which is an opioid like peptide) release in the inner ear, which sensitizes the NMDA receptor to more glutamate induced inflammation. Which is theorized to be part of the stress/tinnitus link.

      I do wonder if that degree of blockage with the higher dose might make pain worse, though (blocks endogenous opioid receptors) in the case of noxacusis. I guess you could stop if it did.

      Conversely, LDN might have competing effects for tinnitus. Lowers overall inflammation but increases endogenous opioid production, apparently.

      Might be something that is ultimately a "trial treat" and see what dose helps and what doesn't.
       
      • Informative Informative x 1
    21. AliasM
      Depressed

      AliasM Member

      Location:
      Australia
      Tinnitus Since:
      Dec 2020
      Cause of Tinnitus:
      ? Autoimmune, daily headaches, Ibuprofin, BP meds, Virus?
      I can't wait to try it. I am getting my hopes up a bit though so trying to remain grounded. I'll start low I think, 1 mg. I am just printing out journal articles now that I can present to my GP.

      Marin, how long have you been waiting for yours to be made?

      That link was really useful DebinAustralia. Turns out there is a doctor in Chermside (Brisbane) willing to prescribe it. I have an underlying autoimmune condition too which might bare weight on their willingness to do so. I am happy to travel to Brisbane, or even better if he does Telehealth. I can see me coming to a dead end with my doctor. I can hear her voice now 'no darling... that won't help'. Everything I ever say to her e.g. headaches caused my tinnitus, Ibuprofen is ototoxic, the sky is blue, it's always 'no darling...'.
       
    22. Marin
      Depressed

      Marin Member

      Tinnitus Since:
      6/18/2020
      Cause of Tinnitus:
      SSNHL... probably previous noise exposure, too
      Over a week now, but my insurance provider has pretty poor customer service. I’ll be following up with the pharmacy tomorrow to see if they have an ETA.

      I’m in the same boat about trying to not get my hopes up. Nothing else has worked for me and I could really use a break!
       
      • Like Like x 1
      • Agree Agree x 1
      • Winner Winner x 1
    23. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Single 25 mg. Dose of (Anticholinergic) Drug Promethazine
      This link is to a thread on another forum that discusses in depth various opioid pain medications that helped people with ME/CFS, with some improving substantially.

      The reason I think this is important is because I've noticed many overlaps between tinnitus and ME/CFS, so it would not surprise me in the least that naltrexone or any number of other opioids could help tinnitus. Below is the initial post from the above linked thread:

      "I also find it very odd that narcotic pain meds relieve some of my neurological symptoms. Not talking about pain....I get relief of other me/cfs symptoms like brain fog, clarity and memory, visual disturbances, tinnitus, and energy......even some of the PEM. It's not a cover up due to euphoria, it actually relieves some of the symptoms.

      As far as I understand, opiates would only affect those receptors and have nill to do with other neurological problems.....but they do for me. Must be some downstream effect like on endorphins or something. And it wasn't a fluke because I've had this happen years past as well. NSAIDS don't do this, so it's not an anti-inflammatory effect. I dunno, but I'm not willing to live on narcotics for this purpose. Gonna see what my me/cfs doc has to say about this."​
       
      • Informative Informative x 2
    24. AliasM
      Depressed

      AliasM Member

      Location:
      Australia
      Tinnitus Since:
      Dec 2020
      Cause of Tinnitus:
      ? Autoimmune, daily headaches, Ibuprofin, BP meds, Virus?
      I really look forward to hearing about your progress Marin. Please keep writing in here about your progress — good, bad or indifferent.

      I will see my doctor on Wednesday and a different one on Thursday. If that doesn't go the way I want it to, I am fully on board with giving this a try and won't stop doctor shopping until I find one who will give it to me.
       
      • Like Like x 1
    25. GBB

      GBB Member Hall of Fame

      Location:
      NYC
      Tinnitus Since:
      2016-2019 (Mild, Cured) 8/2020 (Severe)
      Cause of Tinnitus:
      Virus / Microsuction / Acoustic Trauma
      This specifically notes no reduction in intensity however, just distress, right?
       
    26. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      I wanted to say the same thing that @GBB mentioned. The study points to perception and distress. I think in the case of full dose Naltrexone, the effect is only related to it being an opioid antagonist whereas with LDN, there is a case for anti-inflammatory effect as well as the rebound effect under which many doctors and researchers believe LDN works. Basically, since the dose is low and not taken throughout the day, the idea is that LDN acts completely differently to full dose Naltrexone.

      The other issue I see with the study is that technically, someone would have to remain on the full dose of Naltrexone indefinitely to reap the perceived benefits. I don’t know what the long term consequences of Naltrexone are so I don’t know if it’s even viable if you wanted to. It’s a pretty amazing phenomenon how the exact same drug works completely differently based on dosing. As @Lane has suggested, there seems to be a lot of overlap with tinnitus and CFS and I agree. If you read some of the forums and studies, you will also see some anecdotal evidence that many people’s tinnitus has resolved by using LDN, though tinnitus resolution was not a primary endpoint (so I think it’s underreported).

      My opinion, which is pretty useless, would suggest that LDN is best suited for people with metabolic or drug-induced tinnitus though it has worked for noise-induced trauma. The other thing I found interesting from my friend is that for some people, once they were in remission of tinnitus, CFS, other autoimmune disorders, etc. they did not need to continue to take LDN. One of the 3 tinnitus sufferers got off LDN after 6 months and the tinnitus never returned. I don’t know if that’s coincidence or something to consider.

      As a final note, I know this forum doesn’t like people like Liam Boehm very much but my friend has seen tinnitus remission after subjects used fasting. I even have a distant relative who cured/controlled his lifelong migraines by using a five day fast (after trying literally everything). I don’t want to get off topic but I feel like it might be related to the same way LDN works in some shape or form. Fasting induces autophagy as well as rewires the brain by creating new neural pathways as I understand it. I have read some research suggesting that LDN does the same by regulating the immune system and in turn the body promotes healing because it is no longer burdened by an over/under active immune system.

      Hopefully we can get news back of success from some of the members here.
       
      • Like Like x 2
      • Informative Informative x 2
    27. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Single 25 mg. Dose of (Anticholinergic) Drug Promethazine
      Thanks for your post @Lukee -- I too believe fasting has a place for at least some people with tinnitus. I had a "curious" experience a few months ago: I was doing a short fast, and after about 40+ hours, I was lying down doing the Egoscue Tower exercise, which in itself is amazing in how it can rebalance a person's posture and their nervous system at the same time--see links below.

      After going into a deep relaxation from the fast and doing the tower, I all of a sudden experienced what felt like a mini-explosion in my right ear. It made my whole body jerk, and then it was all done with after a fraction of a second. I'm mentioning this because I think what happened was a result of my body being able to go into a healing mode, and "begin" to correct things that are amiss.

      One thing about fasting that I think is good for anybody to know: When you begin a fast, it's normal for the body to start experiencing various kinds of pains and discomforts. This is usually represents the weakest parts of our body, and is an indication of what we may be facing as we age. But fasting brings these things to the surface much more quickly than aging, and if we continue to fast, then a lot of healing can take place, and prevent a lot of future problems.

      My understanding is that LDN is often prescribed for autoimmune diseases, which is in line with your comments on it regulating the immune system. My own take and understanding is that whatever affects the immune system affects the brain and vice versa. And whatever affects the brain can affect tinnitus. It's all connected.

      And here are those links (which I made up several years ago) to the Egoscue "e-cises" that I think could be an important adjunctive therapy for anybody with tinnitus trying to calm their nervous system by fine tuning their postural and structural misalignments. Sometimes even a little bit of tweaking can make a huge difference.

      ..........................................................

      Non-video introduction and description of the Egoscue tower and supine groin progressive:
      Embracing the Tower

      5-minute video -- very good introduction and description:
      The Egoscue Tower - Supine Groin Progressive

      13-minute video which goes into greater detail:
      Egoscue Tower

      Series of about 30 Egoscue videos covering a wide variety of very specific topics...
      Series of Egoscue Videos
       
      • Informative Informative x 1
    28. Lukee

      Lukee Member

      Tinnitus Since:
      01/2021
      Cause of Tinnitus:
      Breathing Exercise
      Awesome info.

      I agree what you said about fasting bringing defects “to the surface.” I think that sometimes why people stop their fasts early and/or don’t continue with the fasts as they feel worse than when they started. This is a paradoxical effect of getting worse before getting better, commonly seen with many forms of treatments. I believe for some people LDN has the same paradoxical effect and it does take some time to see it through.

      My biggest issue is not my tinnitus. It’s relatively low in volume (though I wish I didn’t have it), the accompanying ETD like symptoms bother me much more. I have done some IF in the past but not since getting tinnitus, so I was looking toward some for of inflammation and autophagy type repair for my ears. I was leaning towards LDN and/or fasting to accomplish this. I was also considering a grape fast or dark berry fast. In fact, one of the ways to unblock a chakra is by doing a berry fast, and this is related to inflammation (but that’s another discussion).

      I think whether LDN works for someone will depend on two things: Can inflammation help their tinnitus? And will the LDN appropriately work (by way of the rebound effect) to properly promote anti-inflammation and immune response? I think if prednisone has a positive effect on symptoms then LDN might also work well, but I have nothing to back up my idea other than what would seem like common sense.

      Going to check out your Egoscue stuff and maybe give it a try. Thanks.
       
      • Like Like x 2
    29. Lane

      Lane Member Hall of Fame

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Single 25 mg. Dose of (Anticholinergic) Drug Promethazine
      @Lukee -- I think it's a discussion that's sorely needed on this forum, as I can't imagine anybody having tinnitus and not have some kind of associated chakra blockage or disruption of some kind. I think the people that do the best after getting tinnitus are those who begin to intuitively do things that repairs their energy field(s). I truly think many of the Egoscue "e-cises" accomplishs this. -- You may want to check this out as well:

      Balancing the Cortices Technique

      How to "Tap Out" your Cortices
       
    30. BuzzyBee
      Jaded

      BuzzyBee Member Benefactor

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Not Sure
      Amazing, I know you've been struggling with this for a while. So glad you found something that is helping!
       
Loading...

Share This Page