Hi there! I’ve never posted but have found lots of useful information on here. I’m hoping someone can help me with a question.
My dosing of gabapentin is 300mg x 3 times a day. I’m working up to that because it has caused nausea and dizziness so I am not at this dose yet but have seen little benefit so far. The half life of this drug is 5 hours so can anyone explain why we take this during the day? Why not just a larger dose at bedtime?
I’ve spent almost two years actively trying to treat restless leg after the severity increases after having kids and after the 2nd kiddo never really subsided. I took Ropinerole to begin which was wonderful and provided relief and regular sleep. However I just spent a year totally scared and confused because I started having daytime symptoms and the severity of the symptoms were off the charts. If only I had read about augmentation I could have saved myself a year of distress and being dismissed by my doctor who was irritated when I tried to explain that my symptoms were better but also worse.
Now i’m Back to no sleep and a manageable amount of pain andni’m scared to be taking another drug that so far hasn’t helped. Weaning off of Ropinerole was horrific, and I would imagine gabapentin will be the same and am anxious to have more information this time around.
Thanks fellow crazy leg sufferers. I actually love that everyone seems to have come up with a nick name for this condition amongst their families because it’s so hard to explain. It’s “crazy legs” in my house. 😂
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jvanw918
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I take 2700mg of Gabapentin plus using a 2mg Neupro patch and have 200mg of Tramulief. This is a lot but in addition to RLS I have Neuropathy. Using GABA drugs with dopamine agonists has been recognised as being potentially beneficial, and something is working as my legs are under control!
My dose is 300 mg at bedtime only. And I have been on 600 mg at bedtime or earlier in the evening. Gaba works for some, even at fairly low doses like mine, but not for other, even at doses much higher than yours.
You don’t say, but have your daytime symptoms disappeared? I truly hope so; mine did some 4 weeks after stopping ropinirole. If so, you may try to take your gaba in the evening only. I also wondered about taking gaba during the day; I think that is because gaba is not specifically for -nighttime - rls. Maybe switch to a lower dose because of taking it all at one and take it some 2-3h before bed and wait until you are really sleepy.
I haven’t gone all the way to find out whether gabapantin in any dose would work for me. O asked for and got prescribed tramadol to take alongside. I think the trama is the more effective one for me. Started out with 50mg in the evening, now after a few months, take one 50mg between 6-8PM and a second before bed together with the gaba.
Please try and find something that helps a bit better. Sleeping badly and having pain or rls-symptoms is awfully exhausting. I am still very low in energy because of that.
My daytime symptoms are more or less gone. I some times get ‘dead arms’ in the late afternoon and I can actually sit through a movie again! Yay! I think part of my exhaustion is just that it has taken so long to get back to more or less where I started. I do understand it’s trial and error to find something that works but I having a really difficult time staying positive at this point.
We've all been at that point. Hang on in there. Ask your GP for a sleeping pill to take maybe 2 nights a week to give you a couple of hours sleep. Zolpidem doesn't make RLS worse.
Gabapentin used to make me very dizzy and I had double vision for a few hours in the morning and terrible diarrhoea. I get slight double vision with pregabalin, but it passes quickly.
Also, it took me about 8 months to get over the trauma of Ropinirole withdrawal and I'm sure that adds to the fatigue.
Things will get better.
There's always someone on here if you want a chat or a whinge.
Thank you. I honestly have no idea how I found this forum but it has been encouraging. I’ve spent hours reading medical journals and online resources trying to figure out what might be wrong with me when I was being told I *should* be feeling better and was feeling so much worse. I am so much better without the Ropinerole. I’m angry that I took it for so long and that I didn’t find another doctor sooner. Spilt milk and all that though.
When I started reading answers on here I didn’t realize this wasn’t an American forum so this has been a double blessing because i’m English in states so it helps with my homesickness too! 😊
Well done for getting through the withdrawal from ropinerole. Horrific is too small a word! I am currently titrating up on pregabalin which is in the same family as gabapentin.
What I have found is that it took nearly a month for the drug to start covering my symptoms so it can be hard to know when you have achieved the correct dose as it takes so long to start to really be effective. I am hoping that I have about arrived there now - I am on 200mg. I notice that there seem to be many differing regimes reported on here as to when and how much to take of these drugs. My symptoms are also mainly at night time so I take my dose in the evening (I believe they take a while to get into my system). I used to split the dose so that I took about two thirds in the early evening and the final third at bedtime but now my prescription is for a single 200mg tablet and I take it about one to one and a half hours before bedtime. I'm not really sure why you would take it through the day but it might be to prevent an overload if you are experiencing side effects. All the same I think I would be inclined to weigh the doses more towards the latter half of the day with a view to covering night time symptoms. You should probably run it past your GP though.
Although I have heard some scare stories about coming off gabapentin/pregabalin I am hopeful that they will not be quite so awful as the dopamine agonist.
Incidentally, my rls came on first in each of my pregnancies and sadly did not go away after the last one. I sometimes wonder if I had made more of an effort to keep my iron levels high would it have gone away as it did with the earlier pregnancies. I also suffered from double pneumonia, a collapsed lung and pleurisy during that pregnancy and wonder if the triple whammy of low iron levels, pregnancy and the illness were what caused it to bed in permanently.
I was put on Gabapentin after withdrawal from Ropinirole ( like you I found the withdrawal horrible). I only took Gabapentin at night, because it didn’t make sense to take it earlier. I was on 900 mg in 2 doses, 300 at 7 and 600 at 10pm. It didn’t help so I asked for tramadol in addition. I took 50mg at night. After 3 months of little or no sleep I switched to OxyContin.
I’m now on OxyContin and pregabalin and managing some good night’s sleep.
Most people do well on either OxyContin or Pregabalin alone.
Pregabalin has fewer side effects than Gabapentin and so if the Gabapentin isn’t working for you after a few months, switch to Pregabalin.
I didn’t think about withdrawal from Gabapentin ( stupidly after going through Ropinirole withdrawal) but I didn’t have any problems.
Often a combination of meds works better if one alone is not effective.
I used Gabapentin in conjunction with tramadol for about a year, when I concluded that the gabapentin was not doing much, and that most of my relief from symptoms came from tramadol.
I switched to rotigotine (neupro in the UK) patches and experienced immediate relief. I still take a low dose of tramadol too. I have had no significant side effects after 18 months on this medication. However, as I am in my eighties, I do not worry too much about possible downsides. It will I think be very different for a younger person.
Thank you for the responses. It’s comforting To know i’m Not alone but frustrating that my experience has been typical. I don’t understand how something so benign sounding can be so soul crushing. I’m hopeful for some relief but i’m Kind of sick of it all. How is this so hard to fix?
When I took Pregabalin which is related to Gabapentin I just took it at night. In my experience side effects of these things don't wear off though.
My best so far, now off Pregabalin is Codeine 30mg with Paracetamol once at night, avoiding sugar, not eating late and having a small quantity for evening meal and trying to raise Ferritin to over 100 ( will find out next week how far it has got )
I think the sugar is very important though we are all different. i also think that when you ie me are on a prevention it might be easier to take the risks of eg sugar thinking the prevention will make this ok!
The above does not render me symptom free with symptoms every night around 3 times but most nights I am getting 2 or 3 hrs sleep in a row which makes the world of a difference.
I’m now back on Gabapentin after Tramadol became ineffective (Tolerance). I thought Gabapentin max dose was 2700mg but my GP said it was 3600mg (for Parkinson’s). I was prescribed 1200mg/day in 3 doses but have upped it to 1600mg and after reading a post on here now split it between 2pm and 10pm. I only get RLS at night now, get up as soon as it starts and can be back in bed in half an hour (3 times a night) - not too bad. I tried adding 50mg Tramadol at 8pm and had 9 hrs sleep a night for a week! Bliss! Having only been off Tramadol for about 6 weeks it started to lose effectiveness again so am giving it a rest. I will save Tramadol for when I am desperate, for now, but eventually would like to use minimum doses of Gaba+Tram.
Usually i agree with Madlegs 1 but i have to differ on the maximum
dose age of gabapentin. I’m pretty sure that 900 is not the max dosage. I know it’s at least 1800. I take 300 mg in the am and 900 mg at 8:30 pm (per my specialist at John Hopkins.) i do know that it does take a little while to get into your system and the side effects should subside.
I went to Dr. Walters at Vanderbilt after having a miserable year or so when nothing seemed to be working. I’ve had RLS pretty much my whole life but was diagnosed about 15 years ago. I’ve been on all the dopamine agonist drugs and am currently on a 4mg Neupro patch. My Dr here had me on 300 mg of Gabapentin at bedtime and it was useless. Dr. Walters had me titrate that up to a maximum of 1200mg. He said I could go higher but he wanted to see me again before going above 1200. He also said to stop increasing if I got relief. The other thing he said was that I would need to play around with what time to take it and that it would probably need to be earlier in the evening because unlike some other drugs it takes some time to work. I have found that if I take 900 mg at 7:30 in the evening I can go to bed at 11:00 with no trouble. He didn’t take me off the patch. Because it’s a 24 hour patch, it seems to help with the breakthrough RLS during the day. So far this combination has been perfect for me. The only problem I have is if I forget to take the gabapentin early enough. I know everyone is different and there’s no one treatment for everyone but this has been great for me!
The more Gabapentin you take at one time the less percentage wise is absorbed so you want to break up the dosage. I was prescribed 600 mg tablets. I cut one into quarters of 150 mg and took only 150 for a few nights at bedtime until no side effect. Then I took 150 after dinner and another 150 at bedtime, again until no side effects. Added another 150 at bedtime and slept 6 hours. Now I take 300 after dinner and 300 at bedtime and get enough sleep to get by. I take a day or two off each week or two and use 1/4 mg Klonopin if I can't sleep. Experiment but break dossage into two in evening and bedtime. I would not take during the day if RLS not bothersome during day. Axiom is testing making gabapentin more effective by adding CBD oil. Clinical trials should be over soon. Stay tuned.
This is so helpful. I feel so much relief hearing from others. I just wanted to share a miracle - I slept all night last night. Not only that but my oldest son stayed in his bed all night, something he hasn’t done since 2015 at least.🤪 I’m sure it’s all a one off but it felt glorious and I will take the win!
I have Gaba and also Trama. I've had this problem for months but I did take 1 x 100mg of Gabapentin now my GP has reduced this to 1 x 100 per day at night and have been up all night with pain and jumping leg. I am seeing next week and definitely need either more gapa or higher dose. I also take tramadol and first took 50mg now on 200mg. Its the most painful ailment you can have. I also have Ketoproven gel for my legs. So tramadol,gagapentin and gel still can't sleep!!
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