Hi all. I am new to this but wanted to get your take. I am the "pharmacist" of our household, and manage the medications for both myself and my husband. My husband has 4 ruptured disks in his lower back where surgery is not a really viable option (doc said as long as he can walk we're not doing surgery as post-op he won't be able to bend at the waist anymore). Anyway, after being on NSAIDs for a number of years which caused reduced kidney function, his PCP sent him to a pain management specialist. The specialist prescribed 3600mg/day of gabapentin for neurological pain, which took me probably 2 years of careful ween-on to get him up to the dose. He takes the full dose between 5 and 6pm daily. It's now been at least 10 years, maybe more. He's long past the overt side effects but the more subtle ones I think are affecting him, mood issues, anxiety, depression, crap sleep habits, etc, and if he misses his dinner pills for whatever reason, by between 9 and 11pm he's twitchy, restless, "itchy" as others have described. Yes, within mere hours he knows he missed a dose. Add to this the fact that we are caregivers for his 93-year-old mother and we appear to have an A+ recipe for stress. He is also on 50mg nortriptyline which was added to the mix when we discovered bone spurs in his neck which we originally thought were additional disk ruptures. He also suffers from chronic kidney stones, according to his urologist he's one of the super lucky minorities whose bodies produce the little bastards regardless of diet, lifestyle changes, etc. Final piece of background is that he is self-employed as a sports photographer, for which the "season" is generally September through May.
So, we have been talking about getting him off the gabapentin for at least two years, but were worried about doing it during his main photography season, in case the back pain resurged beyond his ability to handle. He has a fairly high pain tolerance thanks for 17 years of the kidney stones and 22 years of the back issues, but given our living situation wrt his mother, we can't allow the pain to get too out of hand.
Anyway, as I said, I am the medicine handler in the house and I had a bit of an accident on Sunday (when I usually set up the meds for the week). His gabapentin bottle ran out with a partial dose on Monday and something happened to take me away from the pills at that moment, and I was distracted enough to not realise that I hadn't filled in the rest of the week. So, full 3600mg on Sunday, 1800 or 2400mg on Monday, and then nothing on Tuesday. By 10pm on Tuesday he was feeling nauseous, "weird", no headache, and not the proper "itchy" feeling he normally would feel after missing a dose (which is why we didn't put 2 and 2 together until I saw the pill box at dinner tonight and realised what was missing). By 11pm he started attempting to vomit his toenails out, every 15-20 minutes like clockwork. Thinking it was some kind of stomach bug or possibly something he ate that wasn't agreeing with him, I administered 4mg of dissolvable ondansetron which he accidentally swallowed before dissolution, so I administered a second 4mg dose, which we made sure dissolved before he swallowed it. Some four hours later he was still vomiting every 20-30 minutes, in between times he was sleeping. I called our local after hours nurse and she strongly recommended taking him to the ER, however he did not want to go, and of course within the hour he finally fell asleep and stayed asleep. But, he was still feeling like hell today (and the bloody phone kept ringing while we were trying to catch up on that lost sleep!) so I was wracking my brains trying to figure out just what the heck was wrong. Come dinner time and me seeing that bloody medicine box and we realised what might have happened. After dinner I put in a message to his PCP about working to get him off and requesting smaller-dose prescriptions for 100mg and 300mg tabs, and started researching getting him the hell off this hell-pill.
Which is how I landed here. And oh my goodness. I am immensely grateful to have found this post. The symptoms people have described are him to a tee, and he doesn't take any other "mind meds" but the gabapentin and nortriptyline, the rest are stuff like allopurinol and potassium citrate (kidney stones), blood pressure and cholesterol meds and vitamins/supplements (multi, b6/12, c, msm, bioastin, acidophilus probiotics). I will be attempting to work with our PCP to finalise a treatment plan to get him off the gabapentin, but would like input if this seems like a reasonable way to minimise the withdrawals as best I can. We are fully aware that this will be a long process, I've already told him I expect it may take two years. But you gotta start somewhere, right? He has also asked me not to tell him of any of the expected side effects so that he's not got ideas put in his head, though I did warn him about the suicidal stuff. He needs to know that if that crops up that it's not him but the withdrawal. Other than that he wants me to monitor him but not predispose him towards any particular manifestation, which I guess I understand his logic.
Anyway, my initial plan is to reduce the dosage in as large an amount as he can comfortably tolerate.
- as of today dropped to 3000mg by eliminating one 600mg tab and have added one 250mg magnesium tab to the regiment. I was considering adding an antacid as well, based on the fact that the gabapentin label says to avoid them due to it reducing the effectiveness, but I am concerned that the calcium carbonate that makes up the antacid will lower the effectiveness of the magnesium. Suggestions on this front would be most welcome. We plan to stay at this 3000mg level for two to four weeks.
- Bring the dose down to 2400mg by eliminating a second tablet and remain at 2400mg for two to six weeks.
- Lower to 1800mg for another one or two months.
- From there I expect to start dropping by fractional amounts using the lower dose units that hopefully the doc will prescribe for us, probably do 1500mg for a month or two.
- 1200mg for a couple months
- 900mg for another couple months.
- If he has been able to tolerate those drops without severe effects, drop to 800mg for a month.
- Monthly, drop 100mg until he is taking 300mg.
- 300mg for two months.
- 200mg for two months.
- 100mg for two months.
- 100mg every other day for a month.
- 100mg every third day for a month.
- 100mg every fourth day for a month.
- 100mg every fifth day for a month.
- stop.
Yes, obviously this is going to take a loooooooooong time, but I don't care, if that time will get him off without putting him and me through hell then I am more than willing to do it.
So, thoughts? Suggestions? Does this seem reasonable or am I making a pipe dream for us?
Thanks in advance for anything helpful you can give me.