In this post, I share ongoing experiences with ceasing to take gabapentin. Hopefully this information is helpful to others in my situation.
I had a two week vacation this year and decided, partially by accident, to stop taking gabapentin (Neurontin). I have been taking it for years for nerve pain and muscle spasm associated with syringomyelia. I knew coming off gabapentin would be disruptive to my life. It is an anti-seizure drug which can cause seizures if you discontinue it too quickly--even if you don't have epilepsy. At the dose I was taking this wasn't a big risk, but any time I've forgotten to take it I definitely get crabby and my muscles start tensing up.
Why Did I stop taking Neurontin
I'm not sure if it was helping anymore. When I first started taking it (300mg 3x/day), it helped considerably with muscle tightness and nerve pain. I could concentrate better because of the pain reduction. It is one of those drugs you get used to, though. After taking it for a few years, I wasn't sure if it was still helping, of if it just made me feel normal, and the withdrawals sucked.
I was concerned about side effects. I can always use better concentration and short term memory. I wanted to see if how my cognitive function fared without gabapentin. I also have other symptoms I wanted rule out as being caused by gabapentin. This is tricky as spinal cord disease pretty much causes symptoms all over (everything is connected to it). I wondered if things like irregular heartbeat, chest pain, rashes, mood swings, etc. were at all caused by the drug.
I am sick of the mood swings. Gabapentin really affects my mood. When it is time to take the next dose I'm often an asshole, despite my best efforts to be nice. Which is worse, the mood swings caused by taking gabapentin, or those caused by chronic and varying pain. We shall see.
How did I gently adjust to zero dosage?
I used lorazepam and occasional dexamethasone for a week or so. The hard part was after ceasing all of it.
How is it going so far?
It has been about three weeks without any gabapentin. Now that I'm taking nothing but vitamins and ibuprofen, I have to say it is pretty rough. Considering I usually feel like crap this is not a big adjustment, but some things are worse.
My mood is better at times, and worse at times. Yesterday I was not nice because I was miserable. Besides that I feel like my mood has been more stable. Less "4 pm asshole effect".
Muscle tightness is a bitch now. I thought it was bad before but my sholders and neck are so tight it is hard to turn my head.
What is next?
I'm going to try and hang tough for another month and a half, at which point I may try a lower dosage of gabapentin, or maybe some of the other related drugs such as Keppra (Levetiracetam). Meanwhile, I'll go for walks 3 times a day, and try to stretch and meditate. Leave a comment with any other good tips.
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12 comments:
You are so brave! I have arachnoiditis so I can empathize with what you must be going through. I was on a medium dose of gaba but wanted to go off it because I was still having so much pain but instead they increased it to maximum daily amount. A couple months ago I complained that I couldn't even remember my own phone number most of the time so we tried to adjust the gaba to be lower dose during the day, higher at night but within 3 days I was so miserable I couldn't stand it. The stabbing pain was so awful. Now I am left deciding, pain or brain.
I applaud you for continuing to walk and try other methods. I can't even go to the bathroom because of the pain without my meds.
One of the newer things I've added is Valerian Root before bed. It helps with muscle tightness and helping my body relax enough to get a good night sleep. I've been pretty happy with it.
Its refreshing to find a blog from someone I can relate to on such unknown territory.
Thank you for your courage. I hope you are monitoring your basic vital signs such as temperature, blood pressure, heart rate, sleep patterns, etc.
I have been concerned about suspicious side effects from my long term use of Lyrica, which is similar to Neurontin. I am certain I am physically dependent on this non-addictive (?) drug. I look forward to your progress, but please be careful.
Do not be put off by initial dopey feelings you may get when you start this medicine. For me, these feelings diminished after a day or so. I needed to have the dose increased to 3600mg daily to make my pain almost disappear. Each time the dosage was increased, I felt dopey for a bit, but it was only temporary. The reduction in pain and the good sleep I get is well worth any side effects. In my case, side effects are minimal. I have nerve damage resulting from ankle surgery for arthritis. Before I was put on Neurontin, my outlook on life was pretty bleak. I couldn't sleep and the pain was excrutiating. This drug has really helped me.
I was on that stuff for a little while. Never got my dosage up as high as yours got, so it wasn't very hard to come off it. It definitely DID help with the nerve pain, etc. I was a jerk on it, too, though, and it made me swollen. I also got quite loopy. Since I also have POTS, I found that I passed out more on the gabapentin. I weaned off it by taking it every other day, then every third, and so on. Then I only took it occasionally on really BAD pain days. That's when I noticed the fainting correlation. Anyway, good luck getting off it. My pain doc said vitamins B6 and B12 are really good for nerve stabilization, too...takes longer and isn't as dramatic, but helps.
Do you think you should really stop taking Neurontin if you bebefit from it? I have been on it fro more than 10 yrs and it has helped me so much. I had my 8th surgery at TCI and my specialist wanted to wean me off it. Didn't ask any questions, I just tried to do it. From 3600mg I went on taking 300mg for about a month but I felt like crap everyday, I can hardly move. Before I got worse I was a very active person and I was in bed about 80%of the time with 3600mg, how much more with 300mg? I don't have any side effects. So when I went to see my Pain Specialist, he told me to get back with it so now I'm on 600mg and still suffering so much but confused as to continue or not.
hi
i just want to share my experience about kepra with u.i have epilipsi for years and i felt like my memory getting worse,so my doctor advised me kepra but it make my condition worst and i got fits.
Oh man. I just read part of your blog, and it's like hearing myself write!
I have had no sensation in my left arm for ten years. I finally got health insurance, and went straight to a neurologist who did an MRI, and found a fairly large syrinx. I have been in quite a bit of pain, mostly in my neck and back of my head, so I am determined to figure this out.
The first thing he does is drop the MS bomb. Seriously.... I don't know how to deal with that.
Anyway, I don't know why I'm writing this really other than to thank you for sharing your experiences.
Dr. Falci craig hospital Colorado is your answer my friend.. just went thru spinal syrinx surgery
I had already been on Zoloft for a while before starting gabapentin... So maybe that's why I really haven't had issues like what I have been reading. Maybe getting a script for that would help others too...
AJ please come back to your blog.
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