After nearly 30 years, I’m tapering off gabapentin. These days, many causes of my pain are more specifically treated by other medications. Gabapentin likely contributes to weight, dizziness and high blood pressure. So my GP and I think it would be better for me to stop taking it.
In my painful teens and early twenties, the doctors and specialists decided I had fibromyalgia. They tried me on a number of medications: antidepressants (made the pain worse), Lyrica (no effect), and gabapentin.
Gabapentin did a reasonable job of turning down the volume on the various pains. But it did nothing to treat the underlying causes.
Unfortunately, this was when the doctors gave up looking for a reason (just as they stuffed around for years over my endometriosis and adenomyosis pain).
Treat the cause of the pain
After a hysterectomy eliminated the adenomyosis pain, I felt up to chasing down the root cause of my autoimmune/inflammatory condition.
Fibromyalgia is not inflammation. If you have inflammation, you likely have another condition that is triggering the fibromyalgia.
In my case, it’s a form of spondyloarthritis, which runs in one side of my family. My tendons and mucous membranes (eyes, mouth, throat, lungs, bowel, …) like to get inflamed. After some trial and error tests of medications, I found I reacted really well to adalimumab (Humira). It’s keeping the tendon/joint inflammation mostly under control, and has greatly reduced my pain levels.
Novamin sulfon has been wondrous for treating my hormonal migraines, if I catch them early enough.
With a slippy spinal column, fat necrosis in my chest from the breast cancer op, and endometriosis in my bowel, I’ll never be pain-free. But I’m probably at the lowest pain level I’ve been for decades.
It’s time to get off gabapentin
In the last few years, gabapentin has become quite the street drug, as it heightens the effects of opioid painkillers, and provides a dizzying numbness that many find appealing. With more data and conversations on the internet now, the horror stories of stopping gabapentin cold in rehab clinics had me quite worried.
My dose was never that high - 900mg per day, taken once a day to help me get and stay asleep through the pain. But I’ve been on that for nearly 30 years.
Having tapered off Effexor - a nightmare process - and off prednisolone a few times, I knew this taper would need to be slow, and would likely still be rough.
Gabapentin alternate-day taper
Decreasing by about 100mg every 1.5 months. 1 is the lower dose, and 2 is the higher dose - using an alternate-day taper, like I did with prednisolone.
- Week one - decreased dose followed by two days of the original higher dose. 1 2 2 1 2 2 2
- Week two - decreased dose followed by one day of the original higher dose. 1 2 1 2 1 2 1 2
- Week three - decreased dose for two days in a row, then the original dose for two days, then the decreased dose for two days. 1 1 2 1 1 2 1
- Week four - two days at the decreased dose, one day at the original dose, then four days at the decreased dose. 1 1 2 1 1 1 1
- Week five and six - decreased dose only.
Gabapentin withdrawal symptoms when tapering
Each step down brought increased pain levels, headaches, altered sleep schedules (waking up too early, or multiple times during the night), and extreme leg pain at night.
Magnesium supplements (for cramps) help a little with the leg pain, which was always worst a few days before my arthritis injection.
I made sure not to decrease the gabapentin dose again until each taper wave of symptoms had passed, and my sleep and pain levels stabilised.
400mg was a longer plateau, and needed about a month to stabilise, but I’m moving down again now, currently in week two of the alternate day taper to 300mg.
From the forums and medical journals I’ve read in the past, it can take anywhere from 2-14 days to get past withdrawal symptoms. I’m definitely on the longer side, but then I have multiple other conditions and dodgy kidneys which clear substances slowly.
When I forget a dose
I normally take it at 10am. If I forget, I’ll wake up between 2-4am, physically buzzing (literally vibrating), anxious to the point of panic, and unable to get back to sleep. I have no idea how I could push past that and function to stop cold turkey - thus the slow taper.
Distraction is good
As part of the taper, I decided to work on some new projects. In fact, nine projects in nine different categories. I’m doing well with the yarn, sewing, gardening and reading categories, but not making progress on some of the harder ones, like losing weight. I hope it will get easier once I’ve finished this taper.
You can follow my progress on these projects in my Patreon newsletters, or sign up for more detailed updates on each category.
- Snapshots do appear on my Instagram account around many cat, art and garden photos.
- With the aim of learning a little more about video and audio editing, I've also been recording a second a day, and publishing monthly reviews on YouTube.
I’m finding these distractions very helpful in not dwelling on the difficulties of the taper. Feel free to join and follow, should you be interested.