I Saw My Family Doctor Today

[Kwazylegs]

Well, I thought I'd let you all know what my primary care MD said today. After seeing a sleep neuro. who at my last visit told me that a lack of sleep "isn't really a serious problem", and another neuro who didn't want to prescribe any meds other than the neurontin, clonazepam, mirapex, and requip which weren't really helping me, and who incidentally joked about my PLMS irritating my sciatic nerve being a real "pain in the -ss", my family doctor said today that he'd work with me to get my RLS/PLMS under control so that I could get a good night's sleep. Go figure why neuro specialists care less about their specialty than a general practitioner. Somebody else here made a similar comment recently. Well, I need to toss something out to you all to get your ideas. My doc said that he'd prescribe whatever narcotics might work (except for methadone, which he said he'd refer me to a pain specialist for), but that I might want to increase my bedtime dose of Neurontin from 1200 to 1800 mg, and keep my current 1mg nightly dose of clonazepam where it is for now. If the increased neurontin doesn't make a difference in 2 weeks, we can either increase the clonazepam a bit, or go to tramadol, codeine, or some other narcotic until we find what works. I didn't have to "sell" him on the idea. I just went to the appointment with a 2" thick pile of stuff I printed off the web...S. Calif. RLS, Mayo algorithm, Johns Hopkins RLS stuff, and some RLS info from the American Academy of Family Physicians. I'm really grateful that I've got an MD in my corner, who trusts me to not abuse any of the meds he's willing to prescribe. Has anybody here taken 1800 mg of gabapentin in one dose? I've read that over 3600mg/day is sometimes used for PLMS/RLS, but it's divided into 3 doses. Also, I'm confused by the names of narcotics which don't have any added tylenol, and might be a good "first one" to try. I know Josh and a few others here have helped me with this before, but I'm getting the generic and brand names mixed up, and I don't know which are pure narcotics. I now hesitate to ask for tramadol since I've read that it could increase RLS, and that it "zips up" some people here...I need a night-time med that will help me with whatever's going on with my legs when I'm semi-conscious at 1-5am, and wakes me up. I'd give anything for 4-8 hours of "real" sleep. Right now I'm fortunate that the only thing that's bothering me every night is PLMS (I think...I can't be sure since I usually fall asleep without symptoms, but during the early morning hours I'm drugged to the point that I can't identify exactly what's going on, and that wakes me up. Sorry for the length of this post. Thanks everyone. ---Andy

[FidgetBoy]

Andy- I've never used higher then 1200 mg of neurontin at any one time. Just so you're aware, neurontin actually becomes less "bioavailable" at higher doses... meaning, the drug is actually absorbed LESS (and thus becomes less potent) as you go up on your dose. I think what is more relevant, however, is the fact that you just bumped your dose up to 1200 mg recently and it appears you are already needing more? (correct me if I'm wrong--) This signals to me that you need to start adding a different medication or switch your neurontin to something else. I favor the former since A) coming off of neurontin is not easy and requires a lengthy wean in most patients and B) the combination of neurontin with narcotics is a very effective way to treat pain. If your physician is willing, chat with him/her about adding a small dose of narcotic to your current neurontin regimen. I have personally found that combination extremely effective! If you want to avoid the narcotics as a whole, another option would be to wean yourself from neurontin over to something like Lyrica (which does not have weird bioavailability issues like neurontin).

[Anonymous]

--

[ViewsAskew]

Hear, hear, Em. No clue at all. It's quite bizarre. Heck, there are some people who cannot get off their SSRIs. One of my friends is in this situation. She successfully switched from one to another, the doc thinking the would help her stop. That didn't work. Long story short, she's been "trying" to quit for over 2 years.

[Kwazylegs]

Josh,
You're correct about my just recently upping my dose of Neurontin to 1200mg. It's been 2 months. The bioavailability issue of higher doses of Neurontin would explain why increasing the dosage 50% resulted in minimal and short-lived improvement of symptoms. I agree with you that the likelihood of going up to 1800mg probably won't make much of a difference in my symptoms or sleep. I called my HMO yesterday to ask them about Lyrica, and since it's not on their formulary, my family doc will have to jump through hoops of fire to get it approved off-label for PLMS/RLS. I've got no problem trying narcotics...I haven't had a restful night's sleep in over 20 years, and anything that'll fix the source of the problem gets my vote. I'll jack up the dose of Neurontin to 1600mg qhs within the next week, and if I don't notice any improvement, I'll decrease the dose back to 800-1200mg and ask my doc to prescribe a narcotic to take with the Neurontin. Regarding symptoms of withdrawal from Neurontin, are they just general "feeling-crappy" kind of symptoms, or are they more serious? Since Neurontin basically is an add-on medication for seizure prevention, and since I'm currently taking Wellbutrin XL 300mg, could this be a recipe for Neurontin-rebound disaster? Or would my daily dose of 1.5mg of clonazepam tend to reduce the risk of seizure? You know, Josh, I've said this before, but I REALLY hate to lean on you for answers to all these questions...I mean, you're navigating through your own personal set of circumstances as far as this disease is concerned. I'm sure I speak for a number of people on this forum when I say how much your input here is appreciated. You're combining your personal experience with technical knowledge when you selflessly answer questions and concerns here, and I'm truly thankful that you're a part of this group. And by the way, everybody, I thank all of you for being here to help me find a way of dealing with a disease that's baffled more than 2 dozen neurologists and family practice doctors, and which has affected so many areas of my life for so long. What makes this place so special is that we're sharing our successes as well as our frustrations, and as a result, all of us, in some way, will find our lives better for the experience. I hope you all have a great weekend! ---Andy

[cornelia]

I have been on 1800 mg Neurontin and am now on 1200 mg. For me it is a huge difference. 1800mg worked so much better, but made me a complete zombie.

Dr B says that with most patients Neurontin works for 1 - 2 years.

I once asked him if a drug holiday would work and he answered that he actually didn't know and adviced me to move on to narcotics.

Corrie

[Kwazylegs]

Corrie,
When Dr. B advised you to move on to narcotics, do you know if he meant for you to combine narcotics with Neurontin, or did he mean discontinuing Neurontin completely, and rely only on narcotics for relief?
How long were you taking Neurontin at doses of 1200-1800mg, and were you taking the entire dose at one time of the day, or in 2 or 3 smaller doses? I'm just trying to make a decision as to when I might need to wean off of Neurontin, or whether Neurontin will continue to work well for longer than 1-2 years if combined with a narcotic. Thanks for your reply, and I hope you have a great day! ---Andy

[cornelia]

Andy,

I am still on Neurontin (1200 mg right now) and have been for over 2 years. I will continue to do so until ???? It still works reasonably. It is very good for sleep!!

I take 600mg at 1800 and 600mg at 2300 hours.

Dr B meant me to stop Neurontin altogether and try a painkiller as an add-on with Requip.

Hope this info helps.

Corrie

[FidgetBoy]

Howdy Andy... In answer to your question, the "withdrawal" issue with neurontin is not well-described in the medical literature but it definitely exists. I wouldn't call the withdrawal dangerous but it definitely is NOT fun. This is just a small list of what I've read about, heard from my patients and have experienced myself: sweating, nausea/vomiting, dizziness, depression, headaches, body aches, irritability, etc. Just so you're aware, I recently tried to wean myself from neurontin over to Lyrica. I found a conversion chart, I read everything I could and by the 4th night I thought I was going to die. I had blinding headaches, flu symptoms, and extreme nausea to the point of being unable to eat for 3 days. It was nasty! To be honest, the Lyrica was better for my symptoms then the Neurontin but I just couldn't stomach the wean. (no pun intended). Look back, I am sure I cut my dose too quickly. If I were to do it all over again, I would of dropped my dose by 100 mg every 7 days.

Having said everything above, I want to be clear that Neurontin HAS been extremely helpful for my RLS symptoms. My RLS has a "burning, throbbing" component to it that my narcotics can't touch. But... my RLS also has a "jerking, gotta move or I'm gonna die" component that the Neurontin can't fully cure. The solution for me was obvious: combine the 2 and attack the RLS from both sides. I'm not completely cured but I am monumentally better then before.

[cornelia]

See, how differen we are: I tapered Neurontin down from 1800 to 1200 mg overnight and didn't have a lot of problems with it. Of course the RLS went crazy for a few days.

Corrie

[BeanieLee]

Hi all. I'm reading a lot about withdrawl from Neurontin and the plateau of effectiveness after a couple of years. As some of you know from, previous explanations, I'm uninsured and have been surviving on Lortab and free samples of Lyrica for my doctor. The Lyrica has been wonderful for getting restful sleep but hasn't been much of a miracle as far as day-time symptoms. I decided that if my doctor is willing to help me then i'm willing to let go of my "pre-existing condition" concerns with a future insurance company and ask to try Requip. Since the cost would be the same as Lyrica if I wanted to get another prescription for that once my samples run out. Although if I could get enough narcotic to last throughout the whole day I probably wouldn't need anything else as that is the only thing that relieves every aspect of the symptoms. So, my question, before I decide one way or the other is - are the long term efficacy and withdrawl issues with Lyrica very similar to those of Neurontin? Should I be concerned about Lyrica planing off after a couple of years? Will it be just as hard to quit Lyrica as it seems to be with neurontin? Does anyone know if any of those issues are associated with Requip as well?
I also find it very disconcerting that doctors are so fearful of prescribing narcotics because of withdrawl issues when so many other non-narcotic medicines are hard to come off of as well. Unfortunately for many doctors I think it's not so much our withdrawl they're worried about as much as the fact that the dea has a careful watch on those drugs. Considering that I've never even heard a doctor inform a patient that another med can be difficult to wean from, it makes that connection all too obvious. : (

I saw a regular family physician some time back and when I explained the symptoms in my legs she generously prescribed me some vicoprofen but refered me to a rheumotologist and has since cut off my prescription and said that she can't keep prescribing me narcotics for "no reason". Now that I know what RLS is I am going to make an appt to see her and hopefully convince her that I have a good reason and that a rheumotologist is not needed.

It makes me feel sorry for so many other poeple suffering with chronic symptoms and not being able to get effective medication because since they're not officially diagnosed with a disease they don't have a "reason" to need such meds. Wish me luck everyone. I'll let ya know how it goes.

[ctravel12]

Hi Beanielee, I wish I could give you some info on the meds that you had stated; however I did take Requip. I did not like the side effects. It made me very nauseated and the sleep habits were horrendous. Also my rls was 24/7. I am now on clonazapem .5mg and so far everything is fine. Please do not get me wrong as Requip did not work for me but has for other people. I guess that you can say the meds are just trial and error. Keep us posted on how it goes and good luck to you.

[Kwazylegs]

Well, two nights of dosing Neurontin at 1400mg (vs 1200mg) hasn't made squat of a difference. I suspect that increasing it another 200-400mg per night won't help much, but I'll give it a try.
Josh, It looks like if I ever need to wean off Neurontin, I'll either ask my wife to lock me in the basement, sliding a tray of food under the door while I cut the dose quickly, or else try the 100mg per week dose reduction that you suggested. But as long as it helps with my neuropathic pain and sleep (though not with RLS/PLMS), I'll keep using it at whatever dosage works.
I thought I'd try .5 mg of Requip split into two doses (7pm and 10pm), and while the nausea and insomnia aren't a problem with this method of dosing, I'm getting rls/painful symptoms in the mornings at work...symptoms which I don't normally experience...augmentation apparently. So screw the Requip for me. I know it works for others, but for me it's creating new problems, the negatives outweighing the positives.
BeanieLee, I wish you success with presenting your reasoning to your family doctor, and convincing her of the NEED for prescribing effective meds for your condition. Since this is apparently a problem shared by many of us, maybe we could assemble an electronic "packet of information" containing the names, credentials, and findings of medical professionals dealing with RLS, along with succesful treatment outcomes using narcotics or whatever other meds employed...including the debunking of the dependency/addiction fears of the conservative physicians out there, so that effective treatment modalities won't be denied to those sufferers in sincere need of help. I know there is literature out there, but maybe it needs to go farther than clinical trials and studies, and include testimonials from those of us who have been helped. I'm kind of new here, but do any of you think this might be a good idea?...Is it do-able? -----Andy

[BeanieLee]

Amen to that Andy!!

[Kwazylegs]

Well, I upped my Neurontin dose to 1600mg night before last, and I was up nearly all night...hyper...just couldn't relax. I guess for me I reached the point in Neurontin dosing where the calming effects of the med diminish and actually reverse. I think it's called pardoxical stimulation, or something like that. So I guess I'll call my doc, and ask him for an RX for a short-acting narcotic to begin that class of meds. Have a great day everyone. ---Andy