Anyone taking neurontin for their RLS? If so, what dose?

Hello, everyone, I hope you all had a nice weekend (and wish a belated Happy Father's Day to those applicable). I was wondering if anyone is taking neurontin for their RLS? And if you are, how much do you take and when do you take it? I've read conflicting reports: some say take it in two doses, but others say take it in three doses. I'm currently titirating to get up to taking 900 mg in the morning and 900 mg in the evening (let's say, 8:30 am and 8:30 pm). If i find 900 mg dose effective, I'm wondering if it would be better to keep two doses of 900 mg, or three doses of 600, or should I be doing thee doses of 900? Or maybe even just one dose of 1,800 mg? Also, before anyone suggests asking my doctor: 1. I'm not allowed to talk to my doctor unless I retrieve three magical keys and the last ray of a dying sun; and 2. my doctor has already said to "play with the dose" until I find what works for me. Also, I know what works for one doesn't always work for another, but this is the best place for any sort of real guidance. Anyway, thanks for reading. Hope you have a good day.

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  • Hi, i used to take it and found it worked better in three doses, but mine was 300 at a time, if i took it all in the evening, it made me unsteady on my feet, staggering about like i had been drinking :)

  • Thanks for responding. I think three doses really is the way to go. Everything says not to let 12 hours go by between doses and it's really hard for me to take it at the same time every day. I wonder if it has to be equal doses? Or if you just need to keep some going in your blood stream. I find that the 600 mg dose isn't quite enough - it takes the edge off so I can fall asleep, but it doesn't help much for just sitting and relaxing. I'm hoping the bump up to 900 mg will be the sweet spot. But will that mean I have to take 900 mg three times? Or would 900 mg in the morning and night with just a 300 mg in between be enough? Or is 1,800 mg the magic number and 3 doses of 600 mg will work? I guess I'll find out. I'm at 600 mg morning and night right now. I was going to go up to 900 mg tonight, but maybe instead I'll add a mid-day dose of 600 mg for three days and see how that goes. If there's no change, maybe then I'll bump the evening dose up to 900 mg.

  • Hmmm. Maybe this is where I have gone wrong with the Neurontin! I may not have taken it long enough before I began taking it strictly at bedtime. I'm so lost trying to study and research this. Each of our bodies react differently to medications. So many people just can't take Neurontin. I do fall down, walk into cabinets and walls, sleep walk, sleep cook, have zero balance and I think the Neurontin is probably effecting me in that way. Requip works perfectly along with Clonazipam, however I noticed my symptoms have become severe moving up into my arms and chest. As I said before; my recent studies on Requip state that the longer it is taken for RLS, the worse the symptoms become and that is very true for me. At this point, for me, the cure seems worse than the original problem. DOES IT EVER STOP??? Because I am exhausted and do not know which way to turn.

  • Hi ookla, i am going giddy just reading your doses...LOL. I guess you will find your own best time in taking them which suits you. Sometimes, just playing around with our meds we find what works best for us as an individual. I couldnt take Neurontin, it made me want to sleep all day and that was just taking 600mg at night. :)

  • Thanks for responding. Neurontin makes me sleepy, too, but I'm hoping if I take it long enough I'll get used to it and that will go away. I really think it's my best hope right now. And I'm really glad you didn't get mad at me for playing around with my meds. I was a member of another message board (before I knew I had RLS) and they would always chastise me for doing that. I got a stern warning from the mods about them not condoning recreational use of meds. I just want my pain to go away, but they made me feel like I was just a drug-seeking addict (which I'm not - I'm actually afraid of drugs... I was only taking 100 mg of tramadol once a day when one doctor told me I could take it every six hours). I greatly appreciate your support.

  • Now, what IS tramadol and how does it work for RLS??? Looking that one up now!

  • Tramadol is a pain med, it acts like the opiates. I've found the pain meds are the only ones that work for me. Tramadol worked great at first, but it has a few problems. One, it can cause or worsen sleep apnea (all the pain meds do that). Two, it lowers the seizure threshold, so the highest you can go is 400mg per day. I started out at 50 mg and was up to 100 after 3 months. After another 3 months, I was up to 150. Tolerance was setting in too fast and I was going to run out of room pretty quick. It seemed like a good idea to find an alternative sooner rather than later.

    And three, while acting like an opiate, it also acts like an SSRI. So when you get off it, your brain thinks you're withdrawing from two drugs instead of one and it's quite hellish.

    It's funny that you happen to respond to this post today. I was just thinking last night about giving neurontin or tramadol another try. Or maybe even morphine sulfate.

  • WOW, really, i think maybe things have moved on recently regarding taking meds for RLS, Alot of things have changed for RLS, they experts used to say, never nap during the day, when you havent slept at night...well i am sure none of them had RLS, otherwise they wouldnt have been saying that.... Everyone should nap if and when they can if a bad night has been had. I would never get mad at you or anyone when dosing to get relief, I get concerned when i see people take more than the recommended dose of any med. The dosage is set for a reason, I used to be afraid of taking meds as i am extremely sensitive to them, and mine used to sit on the side in the kitchen til i got brave enough to try it. I was scared of what the side effects would be like. Tramadol, i wish i could take, but i took one 50mg one night and it didnt work, so the next day, i took one 50mg then another 6 hrs later, thinking i would be ok by having the 6hrs space, in the night i woke up feeling weird, and when i got up, i was violently sick, i thought i was dying...lol..

    I took the Neurontin for a month, it didnt work at the dose of 600mg and after a month, and sleepy during the day, i gave up on that one. I wanted to sleep during the night, but not all day too.

    Good luck with finding the ideal dosing for you and i hope the sleepiness goes away for you....

  • There seems to be a lot of wiggle room with neurontin. Hopefully I won't come anywhere close to the maximum recommended daily dose (I think it's 3,600 mg). 2,700 mg is as high as I'm willing to go (three doses of 900 mg).

  • Hi ookla -I've been taking Neurontin for 9 months now, and so far [we have to say 'so far' with RLS don't we?] the small dose I'm on seems to be holding it at bay. It hasn't completely gone, but I'm afraid to alter the dose until I actually have to. I only take 200mg at night, which compared to your dose is small. If I don't take them by 9pm I know about it though.

    I am often sleepy -I time out at 2 pm approx for an hour. I don't know if it's the Neurontin or any of the rest of the cocktail of stuff I take [ACE inhibitors, Beta blockers, aspirin, statins, plus daily insulin for diabetes] which is making me sleepy, but without my nap I turn into a homicidal maniac.

    So at the moment it's a case of 'if it's not broke, don't fix it' . I realise I'm very lucky to have found the formula. I really wish you luck in your search for yours...

    [TeeHee -"wiggle room" when talking about RLS ! :-D

  • I'm so happy you've found the formula that works for you. I admit, the more neurontin I take, the foggier my head feels. At this point, though, I'm willing to trade my head for my legs.

  • Thanks ookla - I'm fortunate [?] enough to be retired and so don't have to worry about a foggy head at work. I also will rather put up with foggy head than no sleep and RLS legs.

  • I take a small amount of Mirapex (.25 mg) around 7-8 pm and supplement this with 600-900 mg Gabapentin (the generic version of Neurontin).. This works well for me because the 2 together put me to sleep..i have a slight headache upon wakening but this quickly goes away with the first sip of coffee..

    If things really get out of hand, or if i am coming home late, i will take a tramadol instead of the Gabapentin

    I believe that if one has RLS in the evening then one should take medication in the evening..what is the point of taking medicine in the day if the legs dont start to shake until around midnite?

  • Mirapex (and all the other dopamine agonists) don't work well for me. Tramadol, on the other hand, is a knight in shining armor. I have RLS all day, though, that's why I need round the clock care. I think if I follow someone else's suggestion of taking neurontin 3 times a day, I'll have a continuous supply in my blood stream and get full coverage. I just need to find the right dose now. I'm going to give 1,800 mg a try for three days before bumping up to 2,700 (if necessary).

  • I can't help with any answers but I just wanted to say this thread has made me chuckle!!! Magic keys and dying suns and wriggle room....brightened my day....Thankyou....it's solstice and I'm going to Avebury. Will a rising sunbeam work!!!!!

  • Glad we could give you a laugh. RLS may take away our chairs and our couches and our beds, but it will never take our humor.

  • I love your sense of humour !!!!!

  • Thanks! :)

  • i take 900 mg at three doses a day. at this level im able to sleep and havent felt the pain and jitter of my rls.

  • I started on Mirapex but was really afraid of taking it, though it worked. So my PCP then put me on Gabapentin - 300 mg at bedtime to start and then I am supposed to increase to 600 mg still only at bedtime. Started 2 nights ago and was up til 4 am both nights with the worst RLS in my legs and hands that I ever experienced. Finally took another 300 mg. - no change. Had to take an Ativan and .125 Mirapex to finally stop it. Somebody please help!

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