Restless Legs Syndrome (RLS) Discussion Board

I'd agree with QyX. It starts getting so murky when you have multiple things, especially neurological.

For what it's worth, my WED/RLS is primiarly in my thighs. I thought everyone felt it that way until I came here - my mom, sister, uncles, etc. all feel it there. Mine feels very electrical. When I first felt neuropathy (I'm 99% sure caused by pramipexole, oddly enough), it was VERY similar to how I experience WED/RLS. The difference, to me, was duration and degree of "stinging." The neuropathy was more like a bug sting. Not as severe as a bee, but similar. It was FAST! The WED is slower, builds up - like an electrical charge.

Not sure if that helps you in ANY way - just how I distinguish those two things (which may not be at all what you are feeling!).

pjmccoy1 wrote:Anyone familiar with low dose naltrexone (LDN) for use in restless legs syndrome treatment? I know it is used for auto immune disorders, as well as, fibromyalgia and some neuropathies.

I have had a wonderful response of my RLS to naltrexone. And totally unexpected. I have had RLS for 20 years and in June 2015 I tried to get off Mirapex, as it was causing daytime augmentation, impulse control problems and was losing effectiveness in the evening. I tried for 6 months but I couldn't get off Mirapex as the alternatives I tried (gapapentin encarbil, gabapentin, lorazepam) did not do the job. I ended up at 0.75 mg of Mirapex for 5 night and 1 mg for 2 night a week, which is only slightly less that the 1 mg dose nightly I had been taking that caused the above problems. It was not a great solution but my neurologist did not want to go to opioids.

In November I was diagnosed with osteoarthritis and my doctor put me on Contrave to loose weight. Contrave in composed of naltrexone and buproprion (Wellbutrin). Immediately I noticed a reduction in my RLS symptoms, i.e. daytime augmentation and impulse control. They I tried lowering the Mirapex dose and am now able to sleep WELL with NO augmentation and NO impulse control issues on 0.5 mg of Mirapex. None of my doctors can explain why Contrave has an effect on RLS or possibly on the effectiveness of Mirapex. (NOte: I have also been taking 300 mg of gabapentin for several years because it increases the quality of my sleep.) I am extremely pleased with this unexpected result.

I would love to see someone using Mirapex who has either augmentation or impulse control issues try naltrexone to verify that this result is not specific to me only. I was taking Wellbutrin prior to going on Contrave so it is the addition of naltrexone that produced the result. It is possible there is an interaction between naltrexone and Wellbutrin so if naltrexone only doesn't work it would be worth trying both naltrexone and Wellbutrin. With Contrave I take 16 mg of naltrexone and 180 mg of Wellbutrin in the am and again in the pm. I once missed my morning dose without impact on RLS so it may be that only an evening dose of naltrexone is needed.

Naltrexone is used by alcohol and drug addicts to help then stay off their drugs. It does this by blocking most of the opioid receptors so the addict won't experience the high that (s)he craves. So I can see how naltrexone can reduce or eliminate impulse control issues. But an explanation for the impact of naltrexone on augmentation and/or the effectiveness of Mirapex is apparently not known. It would be nice to replicate this result in others.

Richard

Fascinating, Richard.

Hi Ann. The fact that my docs and even Dr. B can't explain this leads me to believe that naltrexone is a good area for research. Might reveal new insights into RLS or the effectiveness of dopamine agonists.

I'd love to hear some more anecdotal cases where it worked - see what they have in common. Hope others reply. I'm all for anything that can make any of our existing drugs work better!

Aipulu wrote:
I have had a wonderful response of my RLS to naltrexone.... .

Richard

I'm currently on neupro but have been on mirapex in the past. I have some naltrexone tablets and may try them on a day I have breakthrough symptoms.

I am going to test naltrexone today. Contrave has 8 mg of naltrexone. Did the RLS got better with just one tablet? How soon? 1 hour? One day?

Google search shows anecdotal reports of good improvement in RLS symptoms scattered throughout the cloud. However, LDN has a large cult-like following making getting good info hard. Some claims it cures HIV and cancer. Most common use that seems believable is for MS.

The naltrexone discussion really should have its own thread. I will start one.

Hey Richard,

how come that the positive effects you having from the Contrave are the results from the Naltrexone when there is also Bupropion in it? It also could be the Bupropion / Wellbutrin, a combination of a Bupropion / Wellbutrin and Naltrexone or just something random.

Were you able to maintain the initial positive response?

I moved cities and didn't pay attention to this discussion thread until now. I am going to publish a more lengthy reply soon. My answer to you is that I was already taking Wellbutrin when I added Contrave so I deduced it was the Naltrexone that made the difference. I continue to have the positive response. I just recently saw someone write about the possible role of inflammation in WED. I looked up Naltrexone and found out it is an anti-inflammatory. So this may be the explanation of the positive response I got, and still get. It has been over 2 years and I am still in good shape. I did not have to go to opioids and I am taking 0.75 mg of Mirapex and 300 mg of Gabapentin. And I have no augmentation even though I have been taking Mirapex for at least 10 years and once had severe augmentation. I have experimented with reducing the dosage of Naltrexone and found that 1/4 the dose I was taking for weight loss was still effective with WED. I recommend that WED sufferers who are considering going to opioids try this first and see if it works. Of course others can too. Next month, after I finish moving houses, I am going to go on an anti-inflammatory diet and lifestyle to explore whether reducing inflammation can allow me to reduce the dosage of WED meds I take. all for now. Richard

I wonder if it's only effective if taken in combination with a DA, or if it would be effective on its own. I was reviewing what you'd said earlier, and your comment that it stopped your daytime symptoms (augmentation) and impulse control issues made me wonder about it.

I do believe the inflammation is an issue for some of us, especially with secondary RLS. It often occurs with diseases where inflammation is an issue. Just not sure that is always the case. That said, always worth trying, especially as we get older and are almost sure to have inflammation issues somewhere from something!

I just posted a lengthy description of my success in using Naltrexone to eliminate augmentation and avoid going to opioids in the "Augmentation, Delaying the Inevitable?" discussion thread. I appreciate your caution, ViewsAskew, on attributing this to Inflammation. My recent google of low-dose Naltrexone revealed its success in fighting autoimmune and neurological disorders such as lupus, multiple schlerosis, Krohn's disease, and some cancers. I don't know the mechanism, whether it is reducing inflammation or strengthening the immune system that might explain its "possible" efficacy in WED, but I just hope others give Naltrexone a try.

I get concerned when people are put on antipsychotics like Seroquel and Zyprexa for sleep. If I remember correctly, these meds are associated with significant weight gain and increased risk of diabetes. I know sometimes they're used to help severe depression. Obviously a decision to make with one's doctor. I work with psych MDs who are adamant about the over-use of those meds and serious side effect profiles.

I take trazodone for insomnia. Minimal side effects for me, often works fast. Been around for decades.