Hello everyone, I was recently diagnosed with RLS and have had a good response to Gabapentin. The side effects are not severe, but I have read somewhere that Pregabalin does the same job as Gabapentin but with a much smaller dose and even fewer side effects. Has anyone had experience taking Pregabalin for RLS?
Also, I tried to get a prescription for medical cannabis, but the Neurologist could not prescribe it for RLS. Has anybody heard about studies testing medical cannabis on patients with RLS / PLMD?
One last thing. Is there a RLS / PLMD charity in Northern Ireland?
Than you for reading my message.
Regards,
RestlessNinja
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RestlessNinja
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There are abstracts of a couple of studies by Imad Ghorayeb et al on cannabis and RLS linked below, but unfortunately the full texts need a Springer subscription to read:
Welcome to the forum. You will find lots of help, support and understanding here.
Yes gabapentin and Pregabalin are basically the same except you have to split the doses with gabapentin.
Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
I always recommend one start with gabapentin rather than pregabalin as it can be increased in smaller doses (100 mg). Once you find the correct dose you can switch to pregabalin if you like or stay on gabapentin.
As far as side effects they are basically the same, some people find that the side effects that bother them on one doesn't bother them on the other. Divide the gabapentin amount by 6 to get the correct equivalent dose. You can switch back and forth. A few studies have found that there are fewer side effects on pregabalin. I have taken both. In my case I had less side effects on gabapentin.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile your gender.
My iron level has been checked by my GP and Neurologist, and it was always ok. I will see if I can find out what it was.
I have been taking 300mg Gabapentin before bed for 3 weeks now. The leg pain is almost gone and I can now sleep much better. My restless legs are not waking me up anymore. If I need two separate doses of Gabapentin, I will most probably switch to Pregabaline. A second dose during the day would make me feel too tired.
Yes do find out. Ask specifically for your ferritin. And what is OK for others is not OK for those of us with RLS. Ask specifically for your ferritin. It may not have been tested as the usual test for iron does not include this.
I am the same as others here that have posted. I tried Pregabalin first and it gave me bad side effects. I'm now on Gabapentin and feel it helps my RLS without the yucky side effects. I also take cannabis oil before bed to help fall asleep. I can buy it anywhere here in Canada fortunately, however when I travel I'm SOL...shit out of luck!
This won't help at present but the RLS Foundation in the US made a research grant last year to Dr Mark Boulos, University of Toronto, for “Using Cannabis to Treat Restless Legs Syndrome: A Safety and Feasibility Study.” This was to be a double-blind, randomised trial of 30 participants (15 each in two groups) due to run from September last year until August this year.
I cannot understand that Epilepsy patients can get a prescription for medical cannabis, but a RLS / PLMD patient can "only" get an off-label prescription for an anti seizure medication. My Neurologist said that he wasn't allowed to prescribe medical cannabis for RLS. He even tried to talk me out of it claiming it would cause addiction. But at the same time, he had no concerns prescribing opioids.
Medical cannabis is only available in the UK on private prescription.Try Lyphe or Sapphire clinics. It's expensive. I can't even get it on the NHS for my MS. Most epilepsy patients have to pay privately as well.
Medical cannabis with THC definitely helps with sleep, it can send you into a deep sleep for around 3 hours and you don't notice the RLS. But it didn't stop my severe RLS.
Unless you have symptoms in the daytime there is no reason to take gabapentin in the early afternoon. Take the 600 mg 1 to 2 hours before bedtime. Since you need more than 600 mg as it is not as well absorbed above 600 mg take the 300 mg 2 hours before that as it is not well absorbed above 600 mg.. If you need more than 1200 mg, take the extra 2 hours before that. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
For information/balance, I took pregabalin 300mg a day and found very few side effects, the main one being a slight “cognitive fog” which was most noticeable when I came off it. Basically a feeling of being very slightly inebriated like after one or two drinks. It didn’t seem to help the restless legs but at the time I was taking it for something else (neuropathy) and wasn’t that clued up on RLS.
I take a THC gummy (Delta 8 or Delta 9) one and half hours before planned bedtime and it puts me right to sleep though I also take Oxycodone and CBD 100 mg capsules. Totes of THC using a vape pen takes away the restlessness almost immediately but only for a short time.
I just upped my pregabalin to 100 mg from 75 and I take from .25-.50 klonopin. My fear is that I build a tolerance and I was told I can only go up to 150 pregabalin. Not sure what is next if that happens. my only side effect from the pregabalin is a bit of tiredness in early day. and not sure but anyone else have dry eyes?
Why can you only go up to 150mg pregabalin? The average effective dose is just over 300mg nightly. Are you taking other medication apart from the clonazepam (Klonopin)?
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