Restless Legs Syndrome (RLS) Discussion Board

I have been taking neurontin for a week now. I am still so tired for about 14 hours after taking it. I am only taking 100mg of it an hour or so before bedtime. It does seem to help some, but as soon as the tiredness goes away, the RLS comes back. I am just wondering how long I should put up with this before I throw in the towel on another med??

I have never taken Neurontin so cannot help in that area. However, I would talk to your dr and see if he can adjust it or try some other meds. I am not a dr nor have any medical background but can relate to what you are going through.

I hope that you are able to find what works for you. Please keep in touch as I am concerned.

Thanks Charlene. I have a call in to a pharmacist and the nurse as well. Just waiting to hear back. I was hoping to find someone here that may have had experience with this as well as often times our personal experiences are such a valuable tool. All I know is I am not willing to endure these side effects in order to find relief. I have already tried Mirapex and Requip and had side effects from them as well. But, so far, I have to say that Requip was probably the least problematic. Because I mostly need relief at work in the early morning hours, it may be a bit of a challenge to find something that will not make me drowsy or foggy. I don't know what the dr. would suggest next. I may not be being patient enough, but I would think a week should be getting close to enough time to tell, especially being at such a low dose. They might just tell me to go another week, who knows. In the meantime I feel like it is torture! If I could just lie in bed all morning, that would be different, but I can't. Thanks for our concern, I will keep you posted.

I am glad that you have a call into your pharmacist and nurse as well.

I take mirapex and at times it helps and at other times it does not. I take the lowest dosage there is .125mg and for the past few nights I have the symptoms even when I have taken the meds a few hours before the onset of rls. I will be seeing my neurologist next month and will discuss that with him.

I am sure there are others in this board that take neurontin and can give you some input to how it works for them. However it is so true that what works for one may not work for another. I also took requip and that definitely did not work for me.

Thanks for keeping me posted and hope that your day is better today.

I think the unfortunate truth is that.....it depends. Some people never do. Some people do in a few days. Others it takes weeks.

I wish there were a magical number; maybe for all drugs there is a bell curve so that you could know that the majority of side effects are over it within X time. Or maybe they know that if it hasn't stopped within X time - say a month - that it's unlikely to happen although it does for some. I hope your pharmacist knows. Maybe Josh or Ed will stop by and offer their opinion.

I am always amazed when someone says, Oh, I had [insert a side effect such as nausea] for 6 months before it went away. Holy cow, I think, 6 months and you hung in there???? I must be a wimp!!!!

I guess a lot of it depends on how much help you're getting from it. Is not having RLS worth it for the price of being tired? Can you deal with tired for a few more days, weeks, or even months to see what happens? Tough questions, I know.

Thanks Ann. That is just it, if I KNEW the side effects would go away, that is one thing, but I know that there is no guarantee and everyone is so different. I was just hoping to hear that some had them initially but it took only a week or two. I know I will not put up with these side effects for the amount of relief I am getting. I did read somwhere that is a reason that it is suggested to rapidly increase so the duration of the side effects is shorter rather than having them go away only to have them come back every time you increase the dose. The thing that I think is the most worrisome for me is that the side effects are lasting so long. I mean, I take the drug at 7 or 8 in the evening, and I am still no good 14+ hours later--that seems a bit extreme to me. I wonder what I would be like 4 hours later if I took it during the day!! I did hear back from the pharmacist, and he said it could take up to 6 weeks--YIKES!!! I don't know if I am that patient!! That is a long time to be miserable. At this point, I'm willing to go back to requip--at least that didn't make me so tired or dizzy--just brain fog. I don't know, I will wait to see what the nurse has to say. I do feel like a big baby and very impatient. But come on, I have to still carry on a life! I am on such a tiny dose compared to the normal starting dose too.

Jitterlegs wrote:I have been taking neurontin for a week now. I am still so tired for about 14 hours after taking it. I am only taking 100mg of it an hour or so before bedtime. It does seem to help some, but as soon as the tiredness goes away, the RLS comes back. I am just wondering how long I should put up with this before I throw in the towel on another med??

JL

an interesting question you have posed. i dont see anything saying "side effects of Neurontin are transient" (i.e you have them when you start but they abate as your body adjusts to taking the medicine).

when the last set of studies are done before a drug is approved by the FDA (sometimes called phase 4 studies), the usual population size is 5,000 (unless the drug is not widely used, then the FDA will allow phase 4 trial sizes to be smaller). so the listed side effects, and rather or not they are transient, may not be fully understood. once a drug has been on the market for a few years, the side effects list will grow, as the FDA requires what is called post marketing monitoring.

this is confusing, as is the case for many things in pharmacy. one rule I use when talking to patients about side effects... hey, you cant let what is printed limit your thinking. you just might be having a side effect that isn't common, or perhaps isn't listed yet.

hate to rain on your parade here, but Neurontin has been on the market long enough that it has lost it's patent (thats usually seven years on AVERAGE), hence the generic is available, Gabapentin. Once a drug has lost it's patent, you will find that any new information usually doesn't come out (in the printed package insert) due to the cost factors that generic companies cant absorb,given the lower price of the generic.

HTH

Ed

j, Don't think there is much I can add to your post that I didn't say in my 8/21 post to you. Just wanted you to know we are listening. I think the "we are all different" adage says it all or at least pretty much all... well no it says it all. What you (we) are willing to endure probably follows the same adage. Again, for many/most here, virtually all rls prescribed meds do not provide perfect relief. I am "honeymooning" with my meds right now for about the last 6 weeks.. if only I could just sleep--my Achilles heel no matter what. But, sure as the sun will rise, I will hit that chasm where nothing seems to work and then the pendulum will swing back. That's how it is for me, anyway.

I understand your impatience and desire for relief. How long you take a med and how many side effects you can "survive" is a very personal issue. Hopefully, the response of others will be helpful. I cannot believe that I ever chose to try neurontin twice but the second time around was one thousand times better than my first experience as has enabled me to survive the last 18 months.

I'm wondering, again, if a cocktail of some sort my be an approach for you and your doc to consider. Don't exactly know what the coctail would be, however. Since requip seems to be doing you some good, maybe a little less requip combined with something else (whatever that is) might be a path to try. Codeine? Years ago, I was prescribed Clonidine (a blood pressure med). As I recall it worked pretty well for several months. I discontinued use because of other intervening health issues. Also, I went to the University of Michigan RLS clinic and one of the suggested meds for a possible trial was Amantadine. Never did use it but they are perhaps suggestions to discuss with you doc. Both are mentioned as possible RLS meds on the Southern Cal RLS site... the one for whom Dr. B. writes his Q & A "column."

I don't know exactly where you are in the Mayo Algorithm sequence but reviewing that with your doc. may be helpful. Maybe one of the antidepressants. Forgive me if this is old territory.

Hope some of this diatribe will be helpful to you.

Best wishes,

M.

Thanks Ed and M. I have a question for you, M, if you don't mind. I am just wondering how neurontin was different for you the second time vs. the first? How much did you and do you take?

Anybody here get the feeling that I am a black and white type person??

j, never could get the hand of doing that "yellow box" thing. Anyway, from my 8/21 post:

"Believe it or not, I currently take 1800 mg. of neurontin daily and just wish it would make me sleepy. However, it does help satisfactorily with my rls/plmd symptoms. A bit of a long story but my first experience with neurontin (and for a different reason) about 4 years ago (300 mg) also made me loopy, emotionally, labile, and in a fog. Needless to say, after discussing it with my doc we stopped the med. Then about 18 months ago, after exhausting many of the first line rls/plmd meds and being desperate, I agreed to try neurontin again. Had some minor side effects but nothing like my first time around. Had to titrate up several times to my current dosing but that has remained fairly steady now for 8 months or so. Can't really think of any lingering side effects also."

I was given my first trial of neurontin to deal with some post surgical goings on and not for rls. Anyway, I literally was bumping into things and have scars on my leg to prove it. That was on 300 mg per day. Then several years later, being somewhat desperate, I discussed trying it again with my doc. I believe I stared out at 300 to 600 mg per day (evenings). Had very few, if any, of the loopy symptoms. Actually, the first few days, I even slept like a baby. Since then, the neurontin, along with the Vicodin which I take somewhat sparingly or in spurts, has been a pretty good mix for me with respect to my rls/plmd. Unfortunately, other than the first few days, it has done little for my chronic insomnia. So, on many nights, my legs feel good but I stay awake. Ugh. I currently take 1800 mg daily and have been at that dose for perhaps 6 months. Did experience some dizziness, headaches and ear ringing which disappeared and were never "major."

But, again, everyone is different. I think your question is a hard one and a very personal decision. I stayed with requip for just a short time--probably less than 6 weeks and looking back it should have been shorter. If I had learned more from the board about caution using the starter pack dosing things may have gone differently--maybe not. Should have found the board earlier! But, that was the decision I made and perhaps part of the process of trying to find something that worked for me. Sometime it's just a gut feeling and sometimes desperation. Trust your feelings and have confidence in the decision you make as there is no other.

I sincerely hope things will fall into place for you shortly and with a minimum of consternation.

Best wishes,

M.

To add more confusion, here are some of my personal experiences.

Using Neurontin, I never got used to it. BUT, I didn't take it everyday. Some people here have written that after awhile (you'd have to search on it and read all the posts - a long task) they did not feel the lethargy and tiredness. If I had to guess, I'd say that it took 2-3 weeks for those who had success.

The side effects for Mirapex took 2-3 weeks to stop (the tremors and dreams), but others remained with me the entire time (constant desire to eat, songs in my head 24/7 including while dreaming, instant mood changes, no sex drive, etc.)

When I write these down now, I sometimes wonder WHY in the world I ever kept taking it. The answer is that I was sleeping, something that hadn't happened in 15 years. And the other answer is that it took a long time for me to get the cohones to challenge my doctor, or rather physicians in general, to advocate for myself.

There are other options, too, but that means you have to be willing to do trial and error for weeks, if not months. For someone who is self-described as a black and white person, that may not be an option you can live with

Why not ask your doc for Tramadol or Tramadol Retard? It is excellent for daytime use. Many people, including myself, are very pleased with it.

Corrie

Jitterlegs, did you quit taking the Mirapex or Requip? (Sorry, can't remember and haven't been around much lately anyway.) And if you did quit was it because of side effects or augmentation?

I ask because if you quit because of augmentation the neurontin isn't likely to help with the RLS a whole lot. With augmentation people need STRONG drugs like opioids for at least a few weeks. That's my non-doctor understanding, and my own personal experience. My sleep doctor gave me neurontin while I was augmenting and it did nothing for my symptoms which were crazy leg pain, convulsive creepy-crawlies, and actually what my new neuro call akathisia. (She also says akathisia is seen sometimes with dopamine agonists.) I managed to get some Vicodin prescribed, which was all that worked for me at the time. But I still had to try the whole list of non-narcotic meds.

Now if you quit because of side effects, the other meds just might have a chance. Corrie made a good suggestion about Tramadol. That works for a lot of people and I've thought about asking to try it again now that my RLS symptoms aren't as bad as they were when I was augmenting. It didn't work for me then - it just morphed the leg pain into creepy crawlies. The nice thing about Tramadol is that it works like an opioid and is considered to be almost as strong as Vicodin, but it's not a controlled substance, so doctors are willing to prescribe it. It does have a small risk of addiction, but so do all opioids when used for RLS. It's a very small risk. What's more common is dependency, where your body comes to rely on the medication, and if you stop taking it you may need to taper off.

I guess if you want off the merry go round of trying medications, the fastest way off is to get one of the opioids which seem to almost always work for us. But heck, try tramadol first. It might work.

Thanks Susan and Corrie. That may very well be a good option. I would much rather try a narcotic at this point than try any more drugs that are messing with my brain like the ones have so far. One problem for me thought, is that I take Sarafem (fluoxetine), and that is not a good mix with Tramadol, so I would have to get off that first, I would assume.

Susan, yes I stopped Mirapex because it was doing nothing for my RLS but gave me "jerking" of my head and leg and no sleep. The jerking only happened once, but that was enough to scare the bageebers out of me and I stopped it! Then I went to Requip but that gave me brain fog. I kind of wonder if I didn't give that enough time. Then on to neurontin and dizziness and sleepiness. BUTTTTTT!!!!! The last 2 days have been MUCH better with the neurontin. I hate to jinx myself, but it seems like the dizziness has greatly subsided and is almost gone as well as the sleepiness!!! I am SOOO (cautiously) excited because maybe, just maybe this will work after all?? Of course, I called a couple days ago and left a message for the nurse that I was having problems with the medication. I asked how long it would take to get an appointment, and they said Tuesday, but I had to talk to the nurse first. Well, the next morning the appointment desk called and said that the dr. was okay with an appointment. HA!!! Isn't that just the way it goes? You make a dr. appointment and then things get better?? I think I will still keep it, though, as it doesn't seem that easy to get appointments. I took 2 neurontin last night (100mg ea.), and still seem okay this morning. That seems to be a HUGE step in the right direction. But, now I really think I will need to add doses during the day, and the nurse said only once a day, at bedtime--another reason to keep the appointment and talk to the dr. The original rx and the dr. said to take 300mg (increasing up to 3) 3 times a day, and then when I asked the nurse about going to 100mg (because of severe dizziness and sleepiness), it became 100mg only once a day (increasing up to 4). I still have to wonder if there was some miscommunication. Yes, I WILL be keeping that appointment!

Thanks for everyone's input, I greatly appreciate it and keep it coming! Thanks also for listening to me whine!! I wll keep you posted on how things go with the neurontin/dr appointment. Oh yeah, I am going to get my ferritin level retested on Tuesday as well. We'll see if that has come up any in 2 1/2 months.

I tried Neurontin for a week a long time ago myself.. The Tiredness did decrease somewhat (I think maybe as you increase the dose) but it did virtually zero for my RLS.. I was virtually insane at that point and begged for my (at the time) Tramadol back.

That was my experience.