Low Dose Naltrexone (LDN)

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?

 

If you have an autoimmune disorder, have you done any antibody tests? Also, why are you seeing a naturopath? They're not real doctors.

 

@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?

 

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

 

Hi

Im in the same boat as yourself.

Did you end up using LDN? If so, result?

 

@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.

 

I see its used for chronic pain states as well ie fibro.

If it helps you, it could be diagnostic of autoimmunity

 

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.

 

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?

 

I'm not really sure of anything, no.

Any negative effects, if they occurred, were minor and very short term (hours to days).

 

Hi linearb,

Do you recall what dose of LDN you took?

 

I think various doses from 0.25 - 3 mg.

 

Thanks for that...

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

 

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.)

 

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.

 

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.

 

Do you take the full 2 mg and Gabapentin at one time or space throughout the day?

 

Old post I know, but at end of my tether...

Seriously considering LDN.

What dose were you taking?

 

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...

 

@linearb, what’s the mode of action of Klonopin + Gabapentin? Is that Dr. Dirk De Ridder’s protocol?

 

I think that's Abraham Shulman's protocol.

 

@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.

 

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.

 

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?

 

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 :-(

 

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?

 

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

 

@UrbanBubblegum, did the spike subside after taking LDN? How are you doing?

 

@Diego LR, the spike eventually subsided, but my balance is worse than before, and I’m now struck with lots of headaches