I’ve noticed a few posters (kayak Carole and Ibrosa to mention two - probably mis-spelled - examples) who are using ldn successfully to treat their rls. I am trying it also, as is LotteM, but we are at an earlier stage. It is an unusual treatment and there is a degree of inconsistency about how it is taken so shared information is likely to be useful.
I would be interested to know:
What dose people are on when they find it effective;
What dose they started on and how they titrated up (by how much and how frequently) if they started lower than the final dose;
At what time/times of day they take their ldn;
How long before they noticed an improvement that they think is referrable to ldn;
What other drugs they were/are taking;
Side effects;
Any other observations.
Also, if you tried it and it wasn’t successful, how long did you take it for and at what dose?
I am on a cocktail of drugs at the moment - all low doses. I have been taking ldn for at least two months but titrating up slowly from 0.5mg initially to 2.25mg currently. I haven’t noticed any particular improvement yet. I am taking it at about 8pm all in one dose. I have been on 2.25 for a few days - was on 2mg for about a week before that. LotteM suggests it can take up to 6 months for it to start to take effect and that it may take longer when original symptoms are more severe so I intend to persevere.
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LDN is low dose naltrexone and it was originally developed to get people off of opioids. Some people now use it for pain control and RLS. If you are interested, just search the RLS and NRAS and maybe even Sjogrens forum (if you are members of those) by LDN and it will give you tons of information.
I started LDN at 1.5 mg , then 3 and now 4.5 all in three month increments . I'm finding the 4.5 is working best for me now that I've been on it for about 2 months . I am hoping it will get even better with more time . I am not symptom free but symptoms are lessened to the point to where I can get to sleep . I take the LDN right before bed I go to bed , drink tonic water , and rub down my legs with magnesium spray . and the thing with magnesium spray is to wipe it off 20 minutes after you apply with warm water and a wash cloth .
Hi Brightone, would you mind giving a more detailed account of your first weeks/months at LDN? What other meds you were taking, how your symptoms improved and how you reduced the doses of your other meds? Maybe it can help guide me.
I am having a somewhat difficult time at the moment, with relatively - given the bad nights - very good days, but nights with mostly two long out-of-bed periods due to RLS symptoms. Exhaustive. Althought these nightly symptoms are not at all fierce, just enough to prevent me from staying in bed and sleeping. I am a bit at loss of how to continue. My current LDN dose is 1,5 mg. I have been on that dose for only a week now after building it up from 0,25mg and upping with 0,25mg at weekly intervals. We decided on that schedule because I am very sensitive to meds. Any good advice for me?
Sure LotteM , the only drug for RLS I am using is LDN . It is my understanding that you can increase LDN dosage up to 4.5 mg without side effects (according to my ND ) . I went from 1.5 to 3.0 to 4.5 in three month increments . I have been on 4.5 mg for almost 3 months now and getting the best results . My symptoms vary quite a lot depending on my stress levels and how much tea I have consumed .
This is how I make it through the night . I supplement with magnesium , calcium , and a multivitamin drink it down with Tonic water . Right before I go to bed I take valerian root and rub my legs with magnesium spray . If symptoms are still keeping me from sleep I take an advil or Tylenol and that seems to do the job.
You have a experiment with the amounts of supplements you take until you find the correct amount . Hope this helps , Good luck !
Hi parminter. Here is a link from a dr/researcher (Weinstock) who specialized in it. I haven’t read his scientific papers yet, so from my part it is not a recommendation. But surely interesting enough to look in to.
flower-girl (Imogen) also has been using LDN after augmentation on pramipexole and using pregabalin - if I recall correctly. Anyway, you can read her experiences in this post from Aug 2017: healthunlocked.com/rlsuk/po...
As ID said, I am also trying out LDN. My meds combination of gabapentin (100-300mg) and tramadol (50mg) work up to some point; the symptoms are definitely much less than without meds, but I still wake up 1-4x a night and have to move and walk around for 10-30 min, sometimes more than an hour, to be able to go back to bed and fall asleep again. In addition, even at these low doses I suffer from side effects, such as exhaustion during the day (and at higher doses both meds separately affected my behaviour negatively and I tended to feel depressed). LDN is reported to have few and mainly slight side-effects.
My experiences with LDN so far:
A few weeks ago I started out with a dose of 0,25mg (fluid, 1 drop), upping the dose weekly and having now arrived at thet 'standard' starting dose of 1,5mg. I took it initially at 1800hrs, because the LDN interferes with tramadol (and all opioids), which I take at 2100hrs or later. Since about a week I switched to taking it in the morning. I was optimistic and almost immediately started to reduce the tramadol (my GP switched me to the liquid form of tramadol as well to enable a reduction below 50mg).
Since the LDN, my symptoms have in a way worsened, resulting in worse sleep. Although I have the impression that my symptoms are less strong, they still prevent me from staying in bed and the time to calm them has increased. This may well have been the result of the reduction in the tramadol (to 25mg). After a while I increased my tramadol dose again, and two days ago I went back to taking 50mg of tramadol. I also went back to taking my 'old' dose of 300 mg gabapentin as I decided I'd better be a bit more patient a wait and see whether the addition of LDN improves my RLS symptoms and sleep.
A really positive effect of the LDN is that my daytime exhaustion has been lifted. This has markedly improved my quality of life (although, of course, still far away from what I want it to be). I now try to be more active during the day - the fair weather is helpful as well! - which I think enhances my ability to sleep.
I will keep taking the LDN. Not only because of the positive daytime effect, but also because my doctor reported that things may continue to improve for at least 6 months. Also because I learned from others here (Brightone, see above) that they took it slow and continued to improve. I shall report back later.
I’m really glad you posted your experiences because I hadn’t registered the improvement in my daytime self but now that I think of it I do feel less exhausted in the daytime. In fact, I feel comparatively well which is surprising as I am taking a mini-break from mirapexin at the moment and having mild but sleep-preventing symptoms through the night as a result (it’s 3am).
I definitely still need the same dose of all my other medications in spite of ldn. Hopefully this will eventually improve and I can reduce the others. I would love to get rid of pregabalin and it would be great to reduce dipyridamole also - though solely because of the small but scary risk of internal bleeding - otherwise I really like how I feel on dipyridamole.
I had forgotten (again) about the opioid interfering effect of ldn and I wonder is that why Kratom isn’t cutting through the symptoms at all at the moment, in spite of me having taken a long break from it recently. I will take the ldn earlier tomorrow.
Based on what I read here I think it will continue to up my ldn dose, gradually, to as high as 4.5 eventually.
My LDN dosage is different from what you and LotteM describe. I take 2 capsules a day of 2.5 mg each totaling 5.0 mg daily. I take one mid afternoon and one about 9 pm. I started at this dose and did not work up to it. I took half of my Mirapex dose for 3 weeks along with the LDN and then just quit the Mirapex. It has taken two months but now my symptoms are the best they’ve been in years. I also take one Ortho Molecular Reacted Iron capsule ( 29 mg of Ferrous Bisglycinate Chelate) with one Vitamin C cap ( 120 mg) daily
Hi. I tried LDN for two nights. It was total hell. Full body RLS that would not subside. Had to wait out the 4 hours for the LDN to be metabolised and then dose with Codiene to recover. Was so stuffed after day 2 that I had to take a day off work. My normal med is 100mg slow release Tramadol once per day at 6pm which works well for me. In my case, without any opiods hitting my brain receptors, the RLS went crazy.
Still believe that LDN is a great therapy as you are re-balancing your immune system for a period every time you take a dose.
My motive for taking LDN was to see if it would help with other autoimmune issues that I have. If I can find a way to manage the RLS, I am still keen to give LDN ago.
Please don't take this post as a negative for LDN. Just did not work for me. Made RLS unbearable.
I initially posted about my LDN dosage 5 years ago. Since then, I have dropped my dosage down to 2.5 mg taken in the evening. I no longer take any dopamine agonist drugs due to augmentation. I now take 300 mg Gabapentin ( I have no desire to increase this amount as every Functional medicine provider I have seen cringes when I mention Gabapentin and wants me to stay as low on that drug as possible) along with 1200 mg of Delta 8 tincture, 5 mg thc/CBD/CBN gummy, and smoke cannabis flower in a vape pipe in the middle of the night every 3 hours or as needed. I am currently getting 6 to 8 hours of sleep each night.
I have only one cup of coffee daily ( half is decaf) don’t drink alcohol and avoid refined sugar. This is the best I’ve been in years. If I miss any of the items in my regimen my sleep suffers.
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