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

[ookla]

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.

[Hidden]

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

[ookla in reply to Hidden]

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.

[Nj_s in reply to Hidden]

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.

[SueJH1963 in reply to Nj_s]

I had a wonderful remission of RLS for, like, a decade and it started coming back last year little by little, so I got Requip. Now, all of a sudden, it's constant and severe at night and moving up my body. I had no sleep for a week until getting some Neurontin the other day and taking 900mg two hours before bed, sleeping finally some four hours later. I am so disheartened reading that RLS gets progressive with age and never actually goes away. So you have my sincere empathy if no useful information.

[Hidden]

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.

[ookla in reply to Hidden]

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.

[Nj_s in reply to ookla]

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

[ookla in reply to Nj_s]

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.

[alps779 in reply to ookla]

Pain meds work better after the onset of RLS. The Gapapentin help prevent onset for me. Also, I found that Diazapam works well after onset too

[Hidden]

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....

[ookla in reply to Hidden]

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).

[dangermouse]

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 !

[ookla in reply to dangermouse]

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.

[dangermouse in reply to ookla]

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.

[Stephenr]

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?

[ookla in reply to Stephenr]

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).

[thedragon]

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!!!!!

[ookla in reply to thedragon]

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.

[thedragon in reply to ookla]

I love your sense of humour !!!!!

[ookla in reply to thedragon]

Thanks!

[nelito563]

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.

[Grammieof4]

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!

[Bigtimetorifan27 in reply to Grammieof4]

Ahhh 2:37 am & im up w/ the maddening rls!! Went from managing it well w/ gabapentin 1200mg at bed. Tonight ive arrived at a grand total of a whopping 2400mg!! One very important thing i want to mention is that the information ive come across repeatedly says for rls relief needs to be Horizant vs neurontin(gabapentin). Not sure what the difference is & my prescribing neuro poo pooed that when i told her. However Im pushing for it at my next visit. I tried mirapex for several days, worked perfectly in controlling my rls BUT on day 4 or 5 i was having major difficulty swallowing!! Pretty bad side effect. Scary stuff

[Grammieof4 in reply to Bigtimetorifan27]

I used to take 900 mg gabapentin at bedtime but after iron infusion, I now only take 600 at 9:00 pm. The specialist I go to said it must be taken enough time before you go to bed for it to get in your system. He also said you shouldn't or get in the bed until you are very sleepy (NOT just tired.)

[Bigtimetorifan27 in reply to Grammieof4]

Ok thanks so much for the info!

[genny in reply to Grammieof4]

I have had rls for over 50 years. It began following a pregnancy. i was given some gbabapentin by my son who told me it helped his legs. For a while 600 mg worked great. but reading the comments here i have discovered why i have had a bad case of the cry's lately and the 600 is not working as well as it has previously. I do not want to take more because i have been miserable crying so much. Does anyone else have that problem?

[AMBj23]

There is only one med that treats ELS, it's called tequila I researched it I have RLS too and it really works

[dimpep]

Hi!

I was just been prescribed Neurontin 3 days ago,as the Neupro patch was not working for me. I have Restless limbs along with hoc jerks and skin sensory issues throughout the body. My doc is trying to cope with my skin sensitivity issues. My dosage is 400/per day at night. We discussed the possibility of one in the morning as well,but decided to start with just the night one. Till now nothing much on the sensory issues. The jerks have slightly improved though. Will have to wait some more days to see what happens.

That's all from me,

Cheers

Dim.

[ookla in reply to dimpep]

Good luck, I hope it works out for you. I'll keep my fingers crossed!

[dimpep in reply to ookla]

Thanks!😊

[alps779]

Yes Ookla, I found that when I take Gabapentin is the key. I take 600mg before each meal and again at bedtime. RLS was keeping me awake all night!! It now is under control when I take Gab at meal time. This leads me to believe that the RLS is being caused by my Diabetes