Neurontin?

[ZanyZanne]

I've been taking Neurontin for 2 months 900mg/day and I've been very disappointed with the results. It's not been very effective for my RLS, although my back pain from a car accident I sustained has been better.

In addition, I had gastric bypass surgery and I was losing weight pretty steadily until I started the Neurontin. Now I've only lost 9 pounds in 8 weeks, rather than the 20 pounds I was losing monthly. Granted, I'm sure I was due to slow down on the weight loss, but my surgery was in December, only 6 months ago, so I should still be on a pretty "good "losing streak."

Anyway, this thread has shed some light for me, Thanks!

[Hos]

Emily-
I've been on neurontin for about 2 years now. I have slowly gone up over the years from 100 mg at night to my current whopping dose of 1200 mg before bed.

I too am at 1200 but it doesn't seem to be working any more. I've always taken it in conjunction with another med like a benzo.

My question is, what time are people taking it? If I take it "at bedtime" like many people say (and my neurologist and much of the literature out there) then my RLS kicks in before it takes effect. BUT, if I take it 2 hours before bed I'm afraid it might be too late.

I know the half life is around 5-7 hours but I'm unsure on when the peak time to take it is on an empty stomach. Any suggestions on exactly what time to take it for maximum effect so I can get some relief? Thanks in advance.

I'm currently tapering off the Xanax (1 mg) and starting Ambien CR along with this Neurontin (no, Neurontin never made me sleepy, go figger!) Frustrating! Thanks for reading...

[FidgetBoy]

Here's some things to keep in mind when taking Neurontin (gabapentin):

1) The "area under the curve" increases by 14% when taken with food. In English-- food actually slightly enhances the absorption of neurontin. The package insert actually mentions protein as being something that in particular, may increase this.

2) The timing of neurontin doses depends on when your symptoms start up. I take my dose at 8 pm because I know that if I wait until 10 pm, I will be very uncomfortable. While the peak effect is not mentioned in the product insert, I would estimate it's peak at around 1-1.5 hrs based on personal and pharmacokinetic experience.

3) The bioavailability (in layman's terms- the AMOUNT of drug that your body absorbs) actually goes DOWN as you increase the dose. The package insert states that at 900 milligrams you can absorb 60% (540 mg)of the drug whereas at 1200 milligrams you can only absorb 47% (564 mg). So this means that as you start getting up into the higher doses, you can hit what I call a "ceiling" effect--- i.e. you hit a point where the drug does not work as well and no amount of dosage increase appears to solve the problem. FYI- this problem can potentially be solved by switching to Lyrica which does NOT have this same bioavailability issue.

4) There is a percentage of neurontin users (myself included) who have felt that after 2-3 years, the drug appears to not be as helpful. Since there is no research in this area, I'm unclear if the drug is ceasing to work OR maybe our RLS worsens over time and the drug is not sufficient anymore?

[Hos]

I can't thank you enough Josh. I especially appreciate you putting the bioavailability in layman's terms:

...at 1200 milligrams you can only absorb 47% (564 mg)

I've read 20 times how the absorbtion rate percentage decreases but I'm terrible at math and didn't know how to translate this absorbtion into actual milligrams!

I think I might try one more dosage increase one hour before bed (along with an apple!) but if that doesn't work then maybe try Lyrica. Thanks again,

Craig

[Stalt]

I have been on Neurontin for several years. I take 600mg at 5 pm and 600mg at 8pm... also 10mg Elavil at same times... also .75 mg Requip at same times.. I take these Meds for Chronic Pain, RLS and Periferal Neuropathy.. I have minimal side effects with this combo, however I think their effectiveness wears off with time.. I plan on changing to different meds one at a time starting with Requip.... I am still looking for a Requip replacement. I will talk to my Doc tomorrow about it....

Jim

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[fulltimemartins]

I took neurontin for about 5 years for peripheral neuropathy and was up to 1500 mg twice a day. I gained ALOT of weight on it and I was confused all the time, forgetful and actually acted like I was drunk all the time when I had not had anything to drink. I came off of it because I was so worried how I was acting. I was on permax for my rls at the same time and didn't notice any difference with my rls when I came off the neurontin, although the permax stopped working for me before I was off the neurontin. I personally do not like the side effects of neurontin, but like we all get at times, if it helps with your rls, I would definitely give it a try.....anything is better than the pain of rls.

Hope you find relief...*S*

[D4]

I've been on Neurontin almost a month (after I augmented on Requip). I only take 100mg per day and it works for the RLS. I have to take it at 7:30pm even though I don't go to bed until 10:30 or else I CANNOT wake up in the morning. And when I manage to wake up, I'm paralyzed for a while. My body is like a dead weight that can't move.

Other people have mentioned the brain fog and I'm experiencing that too. I simply cannot focus or concentrate like I'm used to. By choice, I study a lot of technical material outside my job and this is severely affecting my ability to focus and comprehend. That is really bothering me. Does anybody take another drug to counteract this side effect?

I had my first appointment with a neurologist scheduled for today and he had a family emergency! They rescheduled me for Dec 21. I was hoping he'd have some medicine ideas for me.

[Sojourner]

Although this topic is a bit old, I thought it might be the best place to post. Have recently (approaching 2 weeks) been using neurontin for PLM and it seems to be effective in this respect. I have been taking it about an hour or so before going to bed. Started at 300 mg which worked dramatically for a day or two with respect to PLM but seemed to worsen other rls symtoms and I pretty much had insomnia. Went to 600 mg and this seemed to again control PLM with less collateral rls symptoms but pretty much had insomnia. Dr. suggested I try 300 mg in the late afternoon and 600 at night--with some leeway to experiment. The afternoon dose seemed to produce some rls which was not occuring before and the 600 mg at night seemed to control the PLM but again insomnia. Back to the 600 mg at night and while the PLM are not present I have a feeling, in my legs, that they are just waiting to break through. Side effects thus far have been head pain--not a headache--just head pain, insomnia and the restless mind thing with lots of streaming visuals some of which are unpleasant and anxiety produciing---hard to describe as the often seem a blur and non-sensical. Seem like optimal effect of each dose (PLM control plus some ability to sleep) lasts only a day or two at most before it becomes less effective, a bit bothersome, and a higher dose seems necessary. Am a bit reluctant to bump up to 900 mg at night without checking in with the dr. after the holidays. But, it seems at this rate I will be needing 1200 mg and more in just no time and wonder if the side effects will worsern. Wonder which is better, no sleep without neurontin or no sleep with neurontin. I know I'm wandering but it's almost 5 am and I have nothing better to do.

I guess I am asking at what rate others have been prescribed or tried neurontin. Is the fast rate in which the neurontin seems to become ineffective common or have others also needed to move dosage up as quickly as it seems I may need to. I know two weeks is not a long time and I do think the neurontin has been very effective with respect to the PLM but when will the dosing end and will the side effects subside enough to make it worthwile. Guess this post is related to my query as to "what is a good try" with respect to new medications as well as how others, for whom neurontin worked or is working, arrived at their theraputic dose. I can see the potential benefit of neurontin and would like it to work long term but, even at this point, am I already beginning to see the writing on the wall.

I guess I was also wondering if Lyrica was an option if neurotin was not effective or tolerable or are they simlar enough so that if one does not work the other probably will not work either.

Again sorry for the wandering and I hope this make some sense. Guess I am bit tired.

Shalom,

M.

[sardsy75]

Hi Mark

I was on this stuff for less than a month, got up to a max dose of 900mg and it REALLY screwed with my head! I've cut & pasted a couple of posts from my own thread ( http://bb.rls.org/viewtopic.php?t=37&po ... sc&start=0 ) from when I was taking Neurontin.

Posted: Thu May 06, 2004 9:50 am Post subject: Current Experiment Interim Results

I figured then that the Cabaser & Madopar were well an truly out of my system and that the Sinemet alone was not going to help much. Time to break out the Neurontin and see what miraculous effect it might have!

I went to bed literally thrashing on Tuesday night. I FELT the Neurontin kick in about half an hour after I'd taken it; kinda like a "codeine hit" & a bit weird. It was after midnight when I finally fell asleep, but woke up numerous times during the night.

Wednesday (yesterday 05/05) my RLS was quite manageable during the day; only mild symptoms; I even managed to sit through a movie (although I must admit to eating the popcorn kernel by kernel in an effort not to let my legs ruin the show!). We were booked to go to a friends house to watch a major boxing match on pay-per-view at 7pm. Between 7.30pm & 9.45pm I had two major RLS "attacks" which found me pacing around their house & doing stretches in their kitchen.

I did not know what time the boxing would finish and so could not calculate accurately when I should take my meds. I eventually gave in to my legs at 9.45 and took the Sinemet and Neurontin.

Just after 10:15 the Neurontin hit with a BANG. A feeling of someone stripping me of my energy washed over me so suddenly I was dizzy. The only other way to describe it was as though I'd taken a whole box of Nurofen Plus (one NP has Ibuprofen 200mg & Codeine 12.8mg) and was on a Codeine "high". I spent the rest of the fight lying on our friends bed with the world spinning around me. My hubby made a lame joke about people paying top dollar for that feeling! We dragged me home at midnight and put me to bed with my Sinequan & Stilnox. I was not impressed when my arms suddenly decided that it was their turn. Aaargh!

This morning I feel completely washed out. Not much sleep at all last night.

Posted: Tue May 11, 2004 5:12 pm Post subject: Results of 3:30pm Doc Visit

I got a real giggle out of him when I described the effects of the Neurontin as being like a "hit". He was like "but you've never taken hard drugs" and I said "I know, I'm just going off a bad Panadeine Forte experience I had where I was seeing things coming out of the walls". He just rolled his eyes.

If you're concerned about any side effects of any medications you are on you should go back to your Doctor and talk about it. Neurontin works well for some people and not so well for others.

You're in charge of your body and your RLS, so dont feel like you have to "stick it out" just to see if it will work in the long run.

If your doctor is not sure where to head next, take along a copy of the Mayo Algorithm, which will help both of you decide a medication path best suited for your RLS ... http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf


Take care and keep us posted on how you are going.

((((hugs)))) from Down Under ...

[Stalt]

I have been on Neurontin for years. I take 300 mg. at 5pm and 300 mg at 9pm for Chronic Pain and RLS...
My experience is that Neurontin does not do much for the RLS even at 900 or 1200 mg. The side effects have diminished over the years for me.

I have had some RLS relief with Requip .25mg. taken as needed, sometimes 2 tabs @5, 8,10pm for a total of 6 tabs, I have taken them during the day if needed. With a small dosage tablet you can use as needed if your Doc will work with you and your insurance company will work with you. The problem with Requip is the cost. I am trying Carbodopa/Levodopa instead of the Requip now and it seems to work as well.

My experience has been that no one drug is a magic bullet and a "Cocktail" of drugs is needed to get good relief. Unfortunately each person is different and it seems that trial and error is the only way to find out.
My current "Coctail" is Neurontin, Carbodopa/Levodopa & Prpoxyphene.

Mayo's Algorithym is a great resource!

Good Luck!

Jim in Indiana

[brandy]

Mark,
I take 1200 mg of Neurontin in a split dose of 600 mg with dinner and 600 mg around 9 pm. It only works for my PLM, not my RLS and I do not have the side effects you are experiencing. I got up to 1200 mg quite quickly, as anything lower offered almost no help whatsoever. I have to take mine with 200 mg of Ultram to control my RLS. As previously mentioned, I'm afraid a cocktail is often required. I am concerned about your side effects as they seem to fall in the category of unmanageable. Perhaps you should consider trying a different drug. When I was asking Dr. B. about PLM, he stated that the most effective meds are the DAs (Requip, Mirapex, etc) and the anticonvulsants (Neurontin). You might experiment with other drugs in these classes and see if you don't find some relief. Good luck and keep us in the loop.

[ViewsAskew]

To add to Brandy's post, the opioids also may work for PLMs. There are only three studies, however, and they used propoxyphene and oxycodone. I take methadone and have no PLMs or RLS.

Mark, this is one of the hardest to me - deciding what works based on the side effects vs the decrease in symptoms. (As we talked about in your other post). Oddly, I have the same exact response to Neurontin in terms of its effectiveness when I tried it the first time. The first night it seemed a miracle. By night 3 or 4, I thought I was crazy because it didn't do anything. For awhile, I used it to supplement - only when my RLS was a little raging did I add it. After trying to stop the Mirapex from horrible augmentation, I tried using only Neurontin. I got up to 1200 mg and saw no help, so I stopped trying.

However, I have seen people at much higher doses. My guess is that they do not have the side effects you are!

As others have said, this may be one drug you know doesn't work for you, so maybe time to go back to the Dr and choose again

[Sojourner]

Fun group, Thanks to all for the replies as they have been helpful. Not quite sure what I will try for the next two days until I talk with the dr. on Thursday. Like Brandy I need something for PLMs which recently have spung up with the perverbial vengence. Do PLMs wax and wane as do rls symtoms? Do they ever just disapper for a while and/or not come back. Am still curious about the neurontin to lyrica possibilities and if anyone has experience with that progression. Certainly will be trying to document and evaluate the side effects of the neurontin. Sadly, even with the side effects I have lain in bed grateful that the PLMs were not raging. I certainly am not a hero and if truth be known am a bit on the skittish and wimpy side with respect to anything remotely medically related. Guess that's why I want to make sure I am giving things a fair shake.

I had success with sinemet, klonopin, clonodine, and to some degree vicodin and ultram in the past with respect to rls. Mirapex was ineffective and requip nearly put me in the hospital and I think I am still suffering some lingering but hopefull diminishing psychological effects. Then came the PLMs which are extremely distrubing, debilitating, and relentless. And that is how I came to know neurontin. In the past, and related to other ailments, I have always been able to tolerate things like ibuprofen, nsaids, and vicodin without much of a problem. I think that perhaps I am an "opiod tolerant" person and may have to look at this though as mentioned my dr. is a bit hesitant in this respect but perhaps not unapproachable. In more desperate hours, I have fantasized taking a trip to Amsterdam and toking up just to see if the big M would work. Would have to decide the risks after that. Not very practical or perhaps smart. What's the saying about desperate time, desperate measures or something like that.

I'll try not to give my life history again but that's my story and I'm sticking to it. Any additional comments will continue to be appreciated. I hope that at some point I will be able to give back to this board more than I have received.

Have some questions about circadium rhythm but will do that in another post...perhaps tonight if sandman doesn't come...again.

I hope all here will find peace and respite from this condition.

Shalom,

M.

[ViewsAskew]

Intersting question - I have no idea if the wax and wane. Mine tend to be only when I sleep, so I don't notice them. The only time I've had them while awake is when I've had horrendous augmentation from the dopamine agonists. When I finally calmed down, they went away - took a month or so, but then they were gone.

Oh, I guess I do know, now that I think of it. Dr Rye (one of our special RLS researcers and docs), mentioned that he felt actigraphy should be used at home to measure PLMs over several nights as a one night sleep study is not enough. He said that they can vary greatly night to night. He likes to see info from something like 4, 5, or 6 nights in a row. The actiwatch thingee is what he equips his patients with, sends them home, and has them attach it to their leg each night.

So, I guess it does have quite a bit of variability to it. Now, does it actually go away for periods of time? No clue! But, I tend to doubt it.

Not much info on Lyrica for PLMs. If RLS is spotty in terms of research, there is a dearth on PLMs. A few here have taken Lyrica, but most of them not for PLMs, rather the pain or neuropathy or the actual RLS.

You know, no idea of marijuana works for PLMs either. It certainly anecdotally helps many people with the RLS.

Just wondering - do you have apnea? Apnea can cause PLMs - oh, never mind, you are having these while awake, right? Have you emailed Dr Buchfurer at www.rlshelp.org? He knows a lot and is almost always willing to respond.

[Sojourner]

Actually pretty much have the PLMs when I am in bed and trying to sleep or if I do doze they seem to wake me up. If I get up, do the mental distraction thing or simply stay awake they do not occcur. If I go back to bed they go with me. In any event, did take 600 mg neurontin tonight as well as a tab of rozerem. No PLMs but increased rls symptoms and rozerem or not sleep does not appear on the horizon.

Hope others are faring much better.

Shalom,

M.