I need some advice my RLS is getting worse instead of better. I’ve been on Gabapentin 800 mg for about 9 months , my RLS wasn’t completely controlled I was woken generally once a night but paracetamol would stop the discomfort fairly quickly and I could go back to sleep. For the past 8 days I haven’t slept more than 3 or 4 hours, I take the dose split , 200 at 7.00 to 7.30 and 600 at 9.00 to 9.30, bed 10.00 to 10.30. By 11.00 ish my legs start and I need to move them, paracetamol has very little effect now if it works it takes over an hour to kick in, all my usual coping strategies don’t work either. Eventually about 1.00 ish I fall asleep to be woken again by about 3.00 to 3.30 am and legs are usually worse, I’m dancing by the side of the bed, flexing and shaking them in bed, eventually through sheer exhaustion I fall asleep around 5.00ish only to wake at 7.00 am. Sometimes my legs are still uncomfortable still for another hour or so. I increased the Gabapentin to 900 mg 3 days ago and if anything legs are worse. What do I do now?
problems with Gabapentin : I need some... - Restless Legs Syn...
problems with Gabapentin
If your RLS seem worse when you increased the gabapentin, it is not the result of that but something else .Gabapentin never makes RLS worse. Can you think of anything else you changed. 900 mg is still a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin. I would increase it by 100 mg every couple of days until it controls your symptoms. It is common to have to have to increase the dose during the first year.
I don't think you can make the statement that gabapentin never worsens RLS symptoms. The interdose withdrawal I had on it had the effect of giving me RLS all of the time, except for a couple hours after taking it. I was on 3600mg which is the highest recommended dose. That caused problems with my memory and in general and it was hellto come off of.
The gabapentin doesn't cause worsening symptoms. Withdrawal does and it should always be done very slowly and if so there will be no withdrawal symptoms. I'm sorry your doctor didn't know this and advise you and you had to suffer.
always the best advice, Sue. I agree.
Try one 900mg (300mg x 3) as soon as it starts. Worked for me. But Gabapentin totally destroyed my near memory very badly. I take Pramiprexole now. Seems to work 99% of the time. That 1% is taken care of by 3 x 300mg Gabapentin.
I'm glad it works for you. Just be aware of signs of augmentation from the pramipexole.
I second that. Also watch out for psychiatric side effects pramipexole can have, even after a long time in which nothing happens. I was fine for about 8 years and it thus took me a while to realize that I was suffering from side effects rather than my mental health rapidly deteriorating for no apparent reason. I wish someone had warned me that might happen.
As Sue Johnston says, you’re on a pretty low dose of Gabapentin. But also, there are some other things you could try. Clonazepam is good for keeping you asleep once you have got to sleep. The Mayo Clinic algorithm recommends something milder, I forget what, but I have found Clonazepam to be excellent for that purpose. Also, have you tried yoga stretches? They are very good for getting the “electricity“ out of your legs once it starts at night.
The problem with clonazepam is it has a half life of 40 hours so can cause daytime sleepiness. I'm glad it works for you.
Thanks very much for this information, Sue, I had no idea. Is there anything else which does the same job but with a shorter half-life?
Ambien or Ativan
Tramadol is a Godsend. I have posted about this several times here, as have others. I stumbled on posts years ago as I was in bed for 2 days with a terrible bout of RLS. It was relentless. Heavy legs, pain and no sleep.
I read about Tramadol being a Godsend so I dragged my weary body into the medicine cabinet and found an old RX for tramadol. I took one and within 45 minutes I was pain free and feeling energetic. It was, for me, a miracle.
The next day, I called my Dr and she prescribed me tramadol (off label). I started taking more than I do now. I now take about 3-4 50 mg per day. I’ve never increased my dose. Just decreased. Without it; RLS returns with a vengeance.
I recall the posters that use Tramadol only found it when they were prescribed Tramadol for an injury, say a sprained ankle or broken arm. It did nothing to help that pain; but they noticed their RLS was gone!
I hope this helps.
Hi Elsie,
I'm really having to watch what I eat and drink. Caffeine, alcohol and sugar really make my RLS flair. Working out too hard really gives me problems as well. I used to be a runner but now am relegated to walks and lifting weights that aren't too heavy. I also will take a very hot shower before bed and let the hot water run on my legs. As hot as you can stand. I have RLS throughout my whole body and I look like a lobster when I come out of the shower at night. But it helps me combat the sensation. Increasing your gabapentin will help as well. If you are in the US and can get Horizant instead of gaba I find it works better than the gabapentin. If none of that works you need to press your doc for an opiate. Buprenorphine or Methadone seem to be the winners. Hope this helps.
YOU'RE JOKING! Heat AGGRIVATES my RLS 10 fold!! Heat agitates the nervous system exacerbating the uncontrollable jerking. Every single year, as the weather gets warmer, my legs are on fire! I can't cool down. Submerging in cold water to pull the heat off my legs is the only thing that helps. I had a friend who had MS and she had to wear a vest that was a giant icepack to keep her symptoms from worsening in warmer weather. I'm completely blown away that heat relieves your symptoms. Yes, I agree, caffeine, alcohol and sugar greatly increase the symptoms. How are we ever going to find what to do for this insane disorder if we're so conflicted with results?
The 2.7g is the recognised maximum dose daily. That was not a suggestion it was a comparison with NICE stating this is the highest dose and a different site stating that the maximum benefit was at 600mgs and after this further doses did not help as much and increased side effects. They suggested a maximum of 1.2g at 5pm but it looks like this would be too early for you. I would suggest increasing the 9pm dose to 800ms.
Response from my GP re advice taking Gabapentin. Is 2.7g equal to 2,700mg? His response to the Mayo algorithm was also negative , he suggested content was not accurate and not applicable to uk.
Hi. I have these problems too, but I never went to the doctor, having seen some of the problems other people have had with the prescribed medication. I take a half dose of panadol before going to bed. This usually works but I take another if it doesn't, and so on through the night but not exceeding the recommendations on the packet. I have also become aware that being constipated makes it worse so I try to make sure that I eat with that in mind eg, eggs are binding, so I will have dates or prunes after eating eggs. It's not a complete answer but I find that it is not so bad with what I am doing. I hope this helps in some way. Good luck anyway.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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 advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.
I really do know how you feel. I out of 3 nights i just dont sleep. Im trying to eliminate any negative variables: no glutamine, taking magnesium 2 hours after gabapentin, taking anti inflamatories as pain generates RLS, trying to adjust the doseage because in the morning i am super groggy with a horrible backache. It remains to be seen that Gaba is helping me go off Requip. The reduction is minimal. I share your pain....if that helps.
Hi. Perhaps you should take more gabapentin, too? Also, order some red vein kratom powder for the bad nights. No need for you to suffer so much and without sleep!
I have Kratom ...afraid to use it. The while point of the exercise was to get off drugs! I have a video apt with a neurologist from the Mayo Clinic next month. In the mean time...im praying alot!
Yes, I am taking it instead of full-on prescription drugs. If prayers did the trick, I highly doubt we would have this forum.
I would at least up your gabapentin until your appt. Best of luck.
Hi. Order some red vein kratom powder for the bad nights. No need for you to suffer so much and without sleep!
Thanks for all the help my GP won’t prescribe anything else. He has referred me to a specialist but that will be a long wait.
Not what you're looking for?
You may also like...
Gabapentin not working
Insomnia on Gabapentin.
My Gabapentin Dilemma
Is it withdrawal or augmentation or just ineffective?
New to gabapentin
Related Posts
taking trazodone with Gabapentin 
question for Sue re: gabapentin
Gabapentin - advice on dose schedule and drowsiness?Moderation team
