Have you ever taken gabapentin? Ever stopped taking gabapentin?

June 24, 2015 6:33 AM

I'm having a terrible time cutting back, much less stopping completely, but I can't deal with the side effects any more.

I have post-polio syndrome, which is a (slow-moving) deterioration of my nervous system. One of the worse symptoms is severe neuropathy in my feet. It comes and goes, so is mostly tolerable during the day, but wakes me multiple times at night. Constantly broken sleep = crazy. My doc put me on gabapentin, which is primarily for people with seizures, but which has worked very well for me. I take 300 to 600 mg (usually 600) at night; maximum is considered 1,800/day, so I wasn't too worried.

Still, "deteriorating" means "unlikely to get better." Over time I've felt myself getting less; don't know how else to put it. My inner flame, if you will, was guttering. I'm 71, my death won't seem premature or surprising. But then, one night, I couldn't sleep and decided to look up gabapentin side effects. Weakness, check. Fatigue, check. Blurred eyesight, dry cough, depression, check check check. Add in renal failure, increased arthritis pain, black box suicide warning -- ack.

If you stop taking the stuff cold, you're at high risk for seizures. So I talked to my doc, cut back to 300 mg, and started taking it every other night. My energy, my mood, *me* almost immediately started feeling better. It's way too soon for me to die! And the big plus is that Washington state, where I live, just legalized marijuana; it's easy to get cannabis infused creams and lotions, and they work! They take the fire out of the neuropathic path, and allow me to sleep, a miracle.

But I'm having a terrible time stopping the gabapentin. The nights I don't take it I have severe night sweats, and the next day I feel wretched all day: jumpy, itchy, cranky, anxious. All unpleasant symptoms.

My doctor is no help. She would be willing to prescribe another drug to take for the bad symptoms, but only if I stop using any cannabis. Not going to happen, I love my cream, relief with no systemic symptoms.

So my questions: should I move on to taking the gabapentin every third day? At this point, 2 weeks into every-other-day, should I stop cold? Is there anything I can do to prevent/lessen the bad feelings, or just tough it out? (I have a stash of Vicodin from oral surgery; I know it would help but don't really want to replace one strong med with another.)

You're not my doctor(s), but if you have any personal experience, I'd be very grateful to hear it.

posted by kestralwing to Health & Fitness (19 answers total)

Is there a reason not to wean yourself using a very slowly declining daily dose instead of an every other day dose?
posted by DarlingBri at 6:38 AM on June 24, 2015 [7 favorites]

Best answer: Not gabapentin, but I had a prescribing doc who I lovingly call "Dr. Crackhead" who put me on benzos for sleep, enough to tranquilize an elephant by the time I got fed up with her never-ending prescriptions. Getting off of that was the hardest thing I ever did, and I kept reducing and reducing, and every time felt like death. Do it with your doctor's supervision, but do it. It's going to feel like hell, but it won't forever.

Good luck!
posted by xingcat at 6:38 AM on June 24, 2015 [1 favorite]

I have no direct experience, but I have taken very conservative steps to get off of meds before. It may be that you need a 6 month plan to s-l-o-w-l-y get off that med.

I can be worth it to invest the time to make the tiniest incremental changes.
posted by vitabellosi at 6:41 AM on June 24, 2015 [2 favorites]

Gabapentin does come in 100 mg capsules, and well as 250 mg/5 mL solution, which could both be used (provided your doctor is willing to prescribe it) to enable a slow daily down-titration. So if, for example, you found that decreasing your dose by 25 mg every 2 weeks allows you not feel horrible, it would be very doable to do that using the solution (where 25 mg = 0.5 mL).
posted by smangosbubbles at 7:16 AM on June 24, 2015 [3 favorites]

I take 1200/day Gabapentin and have been at this dose for two months--it was slowly titered up and stabilized there. I had some side-effects at first, most noticably extreme relaxation and peaceful feelings (which were actually fine with me) and some edema. I no longer have edema but the peaceful feeling has continued. I havent' gained weight, thankfully, as I have read this is a common side effect. I do watch my diet and get moderate exercise daily, too.

renal failure, increased arthritis pain, black box suicide warning . I have not seen that these side effects are prominent from what I Have read. In fact, Gabapentin is not metabolized by the liver or kidneys so one of the benefits of this drug compared to others is that it isn't known to effect those organs.

I don't see any reason to wean off of it but if your side effects are truly from the Gabapentin, wean slowly. Cannabis has some pretty shitty side-effects, too FWIW but if it makes you feel good then go for it.
posted by waving at 7:48 AM on June 24, 2015

I know it'd be hard to find a doctor with the exact right attitudes, but it seems to me if cannabis is working for you and your doctor is strongly opposed, it might be worth looking for a doctor who is comfortable with it.
posted by mister pointy at 8:24 AM on June 24, 2015 [1 favorite]

She would be willing to prescribe another drug to take for the bad symptoms, but only if I stop using any cannabis.

If I had a lousy doctor like that, and couldn't see a new physician, I don't think I'd have any problem with being a lousy patient and lying about what kind of skin cream I was using.
posted by kmennie at 8:27 AM on June 24, 2015 [4 favorites]

She would be willing to prescribe another drug to take for the bad symptoms, but only if I stop using any cannabis.

Why?

If your doctor's opinion is the result of published work about cannabis/cannabis derivatives interacting poorly with the other meds she would otherwise prescribe you, that's great-- finding doctors who have the energy and interest to stay on top of emerging medical science is rare and absolutely applaudable.

But, if her reasoning is literally anything else, I'd have a difficult time arguing that she has your best interests at heart. If we were real-life friends, I would at the least recommend that you look for a doctor whose treatment perspective is in line with current research rather than the osmosis-wisdom of her professional culture.

To be fair, it's hard to say which it is without more info. But generally, if a doctor won't treat you as best she can within the means available to her, it's time for a new doctor.
posted by Poppa Bear at 8:35 AM on June 24, 2015

Best answer: Cutting back 75% at one go (50% dose every other night) is a huge adjustment to be making. Even if you cut 50% and then switched to every other night that is certainly not a gradual taper. Since the nights without are so bad, I would talk to the doctor about going back to a nightly dose and then taper more gradually. It will take longer but you will have better quality of life on the way down. But always work with your doctor on a taper - if you don't trust your current doctor, that is a good reason to look for a new one.
posted by metahawk at 8:38 AM on June 24, 2015 [1 favorite]

Best answer: She would be willing to prescribe another drug to take for the bad symptoms, but only if I stop using any cannabis.

For people getting outraged about this: she kind of has no choice. The cannabis is Big Deal Schedule I not-even-in-a-lab illegal on a federal level, and the FDA and DEA are federal agencies.

This is a huge huge problem in pain management right now - even in California and Colorado etc - because doctors don't want to, you know, go to jail or not be able to work any more. The only doctor that will prescribe you any sort of non-Schedule-V drug while knowing you are using cannabis (and not making you take piss tests to get refills, which is what pain management clinics do pretty much across the board now) is one who trusts you with their livelihoods.

You could try to find another doctor and not divulge your cannabis use (and, again, hope they don't start piss-testing for refills) if you want something else. But it seems like the best route would be to get her to help you titrate down on the gabapentin.
posted by Lyn Never at 8:50 AM on June 24, 2015 [3 favorites]

I agree with finding a new doctor to work with a slow taper.

The concern about the legality from the doctor's perspective is a red herring. No doctors are being prosecuted for recommending medical cannabis, and that's not even what is being described here. A medical doctor being prosecuted or losing their DEA license because a patient discloses use of a substance legal under state law is just not going to happen. Plenty of doctors both understand the current research (of which there is a fair amount, Schedule 1 or no) and will work with what works for you. Find a new one.
posted by gingerbeer at 9:16 AM on June 24, 2015 [1 favorite]

Best answer: My mother was on gabapentin. She went all the way up to the maximum dose and it was awful. Her memory, her sense of humor, her wit, everything that was her suffered. She went off of it a little at a time, cutting pills in half and switching to lower dosages. She had the cooperation of her doctor, though. Maybe switch doctors, or just lie and tell her what she wants to hear? Gabapentin is terrible. It took mom 6 months to come off of it.
My mom also used cannabis and it helped a lot more than the gabapentin did.
posted by domo at 10:13 AM on June 24, 2015

I used gabapentin for a short stretch, and tapered off it by keeping the same dosing schedule, but cutting pills in half. Still took it nightly, but in smaller doses every two days. It wasn't perfect, because it gets difficult to accurately quarter a pill, but it was close enough.
posted by culfinglin at 10:45 AM on June 24, 2015

Best answer: Ok so gabapentin only has a half life of 5-7 hours, so by taking it every other night you are probably actually making things more difficult. That means you are going through withdrawl every time you take it, so you probably feel worse than you otherwise would. And you are probably not in any danger of seizures at this point either. At this point, I'd just stop taking it and let things stabilize.

(I have taken gabapentin in the past at 300-600 mg per day for mood stabilizing/anxiety and it did nothing but add to my side-effects load. When I quit, I just stopped taking it on the advice of my doctor and had no problems. But everyone is different.)
posted by monopas at 10:53 AM on June 24, 2015 [1 favorite]

Best answer: I've gone from 300 to 600 and back again, with the only side effect being fatigue, which is mitigated if I take it at night.

When I've taken creative, non-sanctioned approaches to tapering, I've either gone cold turkey (NOT a good idea) or done it with drugs with a much longer half-life. I think you're going to need your doctor to cooperate with you by prescribing you smaller dosage pills if nothing else. Cutting pills in half might do it if they're tablets and not capsules (but my 300s are capsules).
posted by mchorn at 12:20 PM on June 24, 2015

I take gabapentin, 900 mg per day, with 300 in the morning and 600 before bed.

IANAD, but I suggest getting a a pill cutter and weaning off. One pill daily for a week, then half a pill daily for a week, then a quarter pill daily for a week, then off. My 300 mg pills are actually 600 mg that I cut in half, so I know it is easy to do.
posted by tacodave at 3:52 PM on June 24, 2015

Response by poster: Thanks so much to everyone who took the time to think about this and post an answer. It's really helped clear up my thinking.

To those who suggested changing doctors, it's pretty much a no-go for me. The only place my insurance covers is the only game in town, a Catholic hospital and medical center. Never mind the DEA, the doctors do NOT want to cross the Archdiocese.

Special thanks to metahawk, who pointed out my embarrassing arithmetic error: 75% is a big amount! Also to domo, whose description of your mother's experience is exactly mine, but stated so much more clearly than I did. And monopas, I didn't even think about the half life of the drug. Doh.

I'm going back to my doctor and have a talk about coming off it. Never mind mentioning why I don't need the drug for neuropathy pain, I just don't, so help me come off the gabapendin. "Don't ask, don't tell" is alive and well.

Thanks again!
posted by kestralwing at 5:31 PM on June 24, 2015

Best answer: Can you ask about getting a lower dose and just taking that once a day at bedtime? Since you feel crummy without the med, and you mention kidney impairment, 100 mg could be enough. The med is (or should be) dosed based on kidney function. While not metabolized by the kidneys, it is eliminated by them. High doses in patients with kidney issues can result in build up of the drug, causing exaggerated side effects, such as weakness and drowsiness.

With the half life as it is, the drug is pretty much cleared from your body after about a day. So if you're not going to try a lower dose (or if you're having suicidal thoughts, I can't quite tell if that's what you're hinting at) I would stop completely rather than mess around with the every other day dosing. Obviously IANYD so definitely discuss with her.
posted by eldiem at 7:14 PM on June 24, 2015 [1 favorite]

Get a pillcutter and go off really slowly. There are other drugs in the anticonvulsant class that may help--Lamictal, for instance. Or maybe Lyrica or depakote. Any of the anticonvulsants can have the side effects you mention, though Lamictal helps some people with depression. I think that trial and error is the way to go once you taper off the gabapentin. Slowly try different drugs, with your doctor, until something works. You may not have to do much in the way of trials since you responded to gabapentin.
posted by persona au gratin at 12:45 AM on June 25, 2015