Restless Legs Syndrome
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FIRST NIGHT ON LOW-DOSE NALTREXONE

As I posted last week I am still trying to wean off of 0.25 Pramipexole after having suffered for a long time with augmentation from first Ropinirole and then Pramipexole...no more dopamine agonists for me...a painful lesson painfully learned!!!! Last Thursday I was able to get in to see my new Neurologist and I LOVE him...he listened and even tho he was not familiar with using LDN for restless legs he gave me a prescription for Low-Dose Naltrexone 1.5mg. I had to find a compounding pharmacy which was not easy...but, last night was my first dose of LDN. At 6ish PM I took 1/4 tablet of Pramipexole and 7ish PM my first LDN...that is all! (For about a week I had been taking Gabapentin 600mg along with the 1/4 Pramipexole...hopefully no more Gabapentin for me...it made me feel drugged). OK...I went to bed about 9:15 PM and slept thru to 1:15 AM ...up to bathroom and could not go right back to sleep so got back up at computer for about 45 minutes then back to bed and slept until 5:55 AM...a very GOOD night for me! I am HOPEFUL it continues!

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Keep us posted! I have a meeting with a doc soon too about using LDN - to replace my current tramadol and gabapentin. I think it is the gabapentin that makes me feel drugged and dopey too.

What kept you awake in the middle of the night? Legs restlessness? Or some sort of habit? I had that too on night when the legs didn’t play up. Took some behavioural adjustment.

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Maybe just an unhealthy sleep habit that I have ...there was no pain and my legs were completely quiet and still...I just could not go back to sleep. Leg restlessness as well as often pain have been present in my life now for a few years causing frequently waking up or being awake...I am hopeful that being off drugs that were contributing to sleeplessness will help me get back to "normal" sleep habits! I have tried Tramadol several different times and found it to cause me even more drugged and dopey than even the Gabapentin...I am hopeful that I NEVER have to take either of them again!

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That sounds good!!! Keep posting. I hope it will work out the same for me.

If there will be enough others, I might hazard writing a scientific paper about our results with LDN!

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I have been taking LDN for about 6 months and has improved symptoms of RLS a lot . I do not take any big Pharma drugs at all with the exception of Naltrexone . I try to go as natural as can . The symptoms for me get better the more I up the dose . I went from 1.5 to 3 , and now I am trying 4.5 . I also drink tonic water and rub magnesium oil spray on my legs at night before I go to bed . seems to be working pretty good so far . I am hoping the change to 4.5 will improve symptoms as well .

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Hi Brightone your post gives me hope! How long did you wait before going from 1.5 to 3? My dr thought i would need to increase but since he had not used LDN for restless legs he said i might just need to try . He had wanted to start me at 4.5 but after reading up i told him i would rather start low and work up! Good luck with 4.5 i hope it brings you the desired results!

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I waited about 3 months to change dosage each time . my doc told it could take 3 to six months to get the full effect from LDN . from reading statistics on the inter web best results were when given the 4.5 .

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Lbrosa, how are you doing with the LDN? I would really like to hear your experiences.

I have LDN prescribed and take it since a few days (only 0,25 mg, as my doc likes to start easy and I am sensitive to meds) in addition to my other meds, gabapentin and tramadol. As one of the latter two, or both, make me feel exhausted during the day, I have started to lower their dose gradually. First the gabapentin, as I thought it is least important in controlling my RLS.

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Good Morning LotteM...I have purposely hesitated posting about my experience with LDN as I am still working on dose. My Dr. started me at 1.5mg and told me to increase (he felt I would need at least 4.5mg before doing any good) after about 1 week. Unfortunately, he only wrote my prescription for 30 caps and it was difficult for me to find a compounding pharmacy. My local privately owned pharmacy can get them...but they have to send off for them. SO...I took 1.5 mg for about 10 days (the first few days I was also ending my taper off of Pramipexole and that is done FINALLY)! Then I increased to 3 mb by taking two caps and I did begin to feel better...better sleep and just felt better and no RLS. Then I realized I was about to run out of caps so called my Dr. for a new prescription and I decided to send off to Belmar Pharmacy in CO as the price is MUCH less than I was paying at my local pharmacy. In order to stretch my caps until my order arrives from CO I cut back to 1 cap (1.5 mg) and so far that is holding off the RLS. LDN is the only thing I am taking so I am hopeful it will continue to keep the RLS away! Last night I felt kind of like the RLS was going to start right after I went to bed and I got up and walked around and was then able to return to bed and go right off to sleep...NO RLS! YAY! My new prescription should arrived from CO in a couple more days and I will work back up from 1.5 mg to 3 mg. Belmar is making me tablets so that I can cut them if needed! That is all I can report at this time...but, all in all, I am pleased with the LDN! I will post more in a couple of weeks after being back on 3 mg for a couple of weeks! Best of luck to you...I had used Gabapentin after getting off the Pramipexole and am now off it also...it did help my RLS but it did not make me feel well and caused swelling in feet and legs...glad to be off it! Also had used Tramadol and am off it too...YAY!

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Lbrosa, that is really good news! I am really happy for you. I read your account with increasing elation. Although I do realise.... WAAD ( we are all different) and that you haven’t taken it long yet. But still...

May I advise you to find your lowest effective dose, rather than up to the suggested dose by your dr? Drs usually go for the standards, but - again - WAAD and a lower dose may be effective for you.

Please keep up posted. And meanwhile: enjoy!!!

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Lbrosa, Congratulations on your successful deletion of Pramipexole from your life!! Thank you for taking the time to post about LDN...I have been searching for information about mixing a larger dose of Pramipexole and LDN. I have successfully cut Pramipexole from 1.5 mg to 1 mg. (over two and a half months) and the goal is to slowly get to zero. I have some LDN being shipped from Thailand because I cannot convince any of my doctors to prescribe it. Here are some questions I have... based on your experience...`

1. Did you find any information about taking the two medicines together?

2. Did you purposely wait until you were almost weaned from Pramipexole before starting the LDN?

3. Did you notice a difference those few days when you were taking both vs after you had completely stopped the Pramipexole?

Thank you

Beth

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Hi Beth,

1. No...I did not find any information about taking the LDN along with Pramipexole...but in the literature from the LDN site states the only drugs to stay away from are opioids...so I gave it a try with no side effects!

2. No...I did not purposely wait...it just happened that way! I was already weaning myself down from the Pramipexole when I heard about LDN and my neurologist was kind enough to let me try it even tho he did not have any experience with it along with RLS.

3. While I was weaning off the LDN helped stop the RLS but it did not seem to help keep away withdrawals from the Pramipexole, i.e. feeling generally crappy, not sleeping, crying, aching all over, depression! Thank god I did not have the restless legs on top of all of that! As I recall the withdrawal lasted a couple of weeks!

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Thank you lbrosa! And again...Congratulations!!! You are an inspiration for me. Be well.

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LotteM...It is truly WONDERFUL not to feel the horrors of RLS...especially during the night when all are sleeping...but it is still so soon that I nearly panic if I feel a twinge! I will also watch for your experience with LDN...yes, I will keep the dose just as low as it is helping! Best wishes to all of us who suffer this affliction and may we all find relief!

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I'm so glad to hear that you're having success! That is wonderful news!

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Thank you for all this helpful detail Ibrosa. You say you cut down to 1/4 tablet pramipexole. Does that mean 0.065mg? You cut your prami tablet into four, and added 1,5mg Naltrexone?

I too have augmentation, (plus hyper-insomnia and compulsive behaviours) at a low dose of prampexole (the drug from hell).

Your example is a good one to use.

When you consulted the neurologist, what references did you take to him? Most doctors need solid information to cover themselves if they are operating outside their comfort zones.

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Yes Parminter...I cut the Pramipexole so that I was taking 0.065mg plus added the 1.5mg LDN and it took me a couple of weeks...the last week I took the 1/4 tablet Pram every other night plus the LDN and then I was off the Pram...but I did have some withdrawal for about a week after going off the Pram altogether! When I went to my neurologist we discussed how severe my RLS was as well as the meds I had already tried. I think because of the fact that he was prescribing LDN for his MS and Fibro patients he was willing to let me try it for RLS. I go back to him tomorrow...will report his thoughts on my present condition...I am doing well with the LDN and want to continue using it and nothing else!

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That is excellent news. No idea why it works though!

Thank you for the detail, I shall record it for my doctor.

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Good Luck! My GP said she will write my prescriptions for LDN in the future IF the neurologist says for me to continue with LDN!

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Do keep us posted. And ask for a simple explanation as to how it works.

I do know about the gut-brain axis, but still, this is new and rather odd.

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Hello Ibrosa

Are you still doing well on the LDN?

Does anyone know how it works for RLS?

I am a stranger to opioid antagonists, and therefore a bit puzzled.

And for those who are having success, do you have primary RLS, or secondary to another condition?

I am aware that the ankle-bone is connected to the knee-bone, and the brain-bone is connected to gut-bone. But still.......

We know that much of our lovely brain chemistry is made in the bowel, and that before anything else we should get our gut flora into shape. Hippocrates said it first, but this is still odd.

SIBO seems strongly associated with low stomach acid, and stomach acid is much reduced the older we become. So, why not add Hydrochloric Acid to your regimen in order to (perhaps) keep your LDN dose down? It is available at any health store.

I think I shall do that first.

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Hi Parminter...sorry I have not been on for awhile...I guess I am feeling better and get involved in other things! YES...I am still doing well with the LDN. I worked up to 4.5mg dose like my neurologist suggested but did not feel as well with that so dropped back down to 3mg and it seems to be my "spot"! I do occasionally have a bad night...but nothing like I was experiencing while on the Ropinirole or the Pramipexole and augmentation! A hot bath usually gives me relief and I can go back to sleep! There is no RLS during the day time hours or evenings now! I can not explain why the LDN works but I am thankful I gave it a try! As to "primary or secondary" RLS...I am not sure...I have had RLS off and on all my life and my Dad had it and our sons have it also...so I guess "Primary"...but it MUCH WORSE as a result of various medications I was prescribed! I hope all this rambling helps! I definitely think LDN is worth a try for anyone suffering from RLS...I wish I had of found it years ago! Best wishes!

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Thank you Ibrosa.

Yes, it is primary, like mine.

I googled LDN, as a result of your information, and have just posted on it.

It is a very interesting medication, it seems to help everything and the kitchen sink.

I shall certainly run it past my doctor, he is open to most things.

I am still doing battle with the awful pramipexole, and I doubt I will do well on gabapentin, so I am lining up other possibilities.

Gosh, but we have to work hard!

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