Back again for further advice. Like so many of us, I've had to project manage my medication pretty much from the start. General practitioners know next to nothing about RLS and/or PLMD. So I'd appreciate a couple of pieces of advice from this excellent resource.
1. I've been on Gabapentin to good effect twice before and I'm on it again now following reaching tolerance to Pregabalin at 450 mg. I'm currently on 1400 mgs, taken as a, single dose an hour before sleep. It's not working and I'm averaging 4/5 PLM sequences a night, necessitating between around 15 and 50 minutes-worth of walking to neutralise the flexions. I'm ready and willing to titrate up to 1600/1800 mg, but wonder whether I can continue with the single doses or at these levels should begin to separate them out. As with the previous two Gabapentin regimes, I'm experiencing no debilitating side effects so am minded simply to proceed as before.
2. I'm awaiting feedback from a night's polysomnograph reading at a sleep clinic. I shall ask for a low dose opiate (the only medication source I have yet to experience) and anticipate getting decent advice and guidance. But I'd appreciate a few thoughts, empirical or academic, as to what the best options might be plus their common attendant side effects.
Thanks in anticipation.
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dickJones
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When you say you were on Gabapentin before, at what dose? And secondly, when you say that you currently on 1400 mgs, taken as a, single dose an hour before sleep, and it is not working, how many weeks have you been doing this for?
Hi. I was on 900 mgs until about 18 months ago. (Shifted to Pregabalin at 450 up to a month or so ago). And the Gabapentin this time around at 1400 for about 3 weeks. But I've just titrated up to 1700 taken in 2 doses of 800 and 900. Yes, I'm making it up as I go along, but not without some prior experience of project managing my own condition.
Hi Dick ... would be interested to know when the Gabapentin finally "kicks in" this time, as I am on week two ... slightly less dosage than you, taken at 7.00pm and 9.00pm. Still get RLS for 3 hours when I go to bed at 10.00pm but by the time the morning comes, am still dead to the world at 8.30am (when usually I am bright eyed and busy tailed at between 6.00am and 7.00am). With thanks, Sally
Hi Sally. I'm now on 1700 mg split into 2 doses and I'm seeing a positive difference in the number and intensity of PLMs a night and the general length and quality of sleep sequences. I shall now divide daily dosage into amounts below 600 a time and hope that the PLM suppression will increase accordingly. All the best, Dick.
You should not take 1400 mg in one dose as the absorption is less if you take more than 600 mg. Therefore for 1400 mg you would take 200 6 hours before bedtime, 600 mg 4 hours before bedtime and 600 mg 1-2 hours before bedtime. Then follow this guidance: If you take 1300 mg but less than 1900 mg take 600 mg 1-2 hours before bedtime, then 600 mg 4 hours before bedtime and the difference 6 hours before bedtime. However, if taking 450 mg of pregabalin which is equivalent to 2700 mg of gabapentin didn't work, it is likely that you will not get relief from gabapentin at the levels you are taking.
Thank you, Sue. I'm currently taking at 1700 mgs, 800 at 20.30 and 900 at 20.30. Only done it twice, but a positive shift in PLM numbers and intensity and an increase in REM sleeps. Too early to call, but promising.
Hello Dick, I have just read your 2-year old post, and is exactly my predicament now. I am on 1900mg Gabapetin for my PLMs at night, and it was working and now, not so much. I recognise what you describe as the walking about to neutralize the flexsions. I sit on the floor and massage my legs. I wonder if you continued with that quantity of Gabapentin, and are still taking it, and how, or have found another way to combat the PLMs?
"Which is the best way to take gabapentin if one is taking 1500 mg at night?
1. 300 mg 6 hours before bedtime, 600 mg 4 hours before bedtime, then 600 mg 2 hours before bedtime or
2. Split the dose 1/3, 2/3 which would be 500 mg 4 hours before bedtime and then 1000 mg 2 hours before bedtime."
This is what he answered:
"The issue with gabapentin is that most people (like 75%) do not absorb doses of this drug in doses above 600-900 mg. When you take more (in a single dose), you absorb only a part of the extra (above 600-900 mg) so the extra does not add that much. As such, your first plan is better but you may not absorb a significant amount of your second and third doses as they will likely compete for absorption with the earlier doses."
I then sent another email to DrBuchfurer and asked him: "If one wanted to stick with gabapentin, would perhaps 600 mg 4 hours before bedtime, then 900 mg 2 hours before bedtime be better than my first plan below? " He answered: "Unlikely"
Thanks for this, Sue. So if I'm on 1700, a workable breakdown would have me taking 3x500 mgs +1x200 mgs with the first two at 2-hour intervals leading up to bedtime and then the last at bedtime, assuming an absorption rate of approx 2 hours. I'm crap at maths so this at be nonsense!
I'll see how the 800/900 mg go tonight - who knows, I might be inside Dr. Buchfuhrer's 25% of high absorbers! But your breakdown makes sense and I'll mve onto it when tonight's cocktail has no effect. Thanks for the suggestion.
_ on RLS/PLMD, you are right: you has to be on control, otherwise very little chances;
_ not know much on medications, except for very poor experiences with Pregabalin and Pramipexole (both never more again), and very good experience with Clonazepam to complement self successfully techniques (0.4 mg is enough for me);
_ You might be interested on my strategies on managing well RLS, PLMS, and UARS elsewhere in my Replies in this Forum;
_ I am very much interested on your PSG outcomes. Please, let me know. As I already said elsewhere, my first PSG was also my rebirthing some 4 years ago (after some 45 years of suffering), both for the understanting of RLS and my UARS;
Yes, I will do very soon.... I just need to prepare some illustrations, both from the PSG's (two of them) themselves. As well as follow up observations from my bilevelCPAP data set, trying to show how intrincated are relations between SDB (sleep disorder breathing; any type and signficance) and RLS ..
Hi. I've just seen your earlier post. I know it regarding Gabapentin but notice you mentioned you were taking Pregabalin previously. I have just been prescribed Pregabalin in 50mg capsules and started taking I per evening. Can you help me with how to increased it gradually please? Hope you don't mind me asking you.
Hi Cicek. Your Pregabalin titration should be managed by your doctor. Has s/he not notified you as to a planned dosage increase? You're on 50 mg now, which is a low dosage. Here are the NICE (the UK National Institute for Care and Excellence, which guides NHS practice) recommendations concerning Pregabalin dosage:cks.nice.org.uk/topics/rest...
Hi. Yes thanks I had seen those guidelines, just needed confirmation I guess. I have only been given 50mg because I am "of the older generation" so after a week I will go up by another 50mg. It's still a low dose and I know if necessary I can go up to 450mg. Just have to be guided by own common sense and you guys as my GP had no idea what to say.
We're at the mercy of a.) what our GPs/primary care physicians know about RLS/PLMD already, and b.) how much they're prepared to research beyond the back-of-an-envelope generic nonsense provided by internet sources. If in both instances it's a.) nothing and b) not at all then one should change one's doctor!
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