My Experiences with Gabapentin

My Experiences with Gabapentin

finding balance


The other day, I mentioned my issues with gabapentin (generic for Neurontin) to a co-worker. She was shocked I was taking it and told me a story that gave me the chills.

She was prescribed gabapentin after breast reconstruction surgery following a double mastectomy. After starting the medication, she became depressed to the point of total despair. She said she had never been in such a dark place before, and was terrified. She complained to her doctors, but to no avail. They didn’t know about its potentially severe and dangerous side effects. Finally, another medical professional recognized that she was in dire need of help and she was slowly weaned off the drug.

After hearing my colleague’s horror story and reading the comments to my article, “Gabapentin: The Good, the Bad, and the Ugly,” I decided I needed to write another article on the subject. I felt I should tell my story.

My relationship with my new friend, “Gabby,” started off pretty promising. I began with a 100 mg dose three times per day. I noticed a decrease in pain fairly quickly. That didn’t last long. After a few months, Gabby didn’t seem to be helping at all. My doctor upped the dose. This became a pattern for almost two years, finally resulting in 2,100 mg total per day, with the option of taking another 600 mg daily as needed. Eventually, I was up to 2,700 mg on most days.

During this time, I thought my fibro symptoms were worsening, but didn’t make the connection that it could be side effects from my newfound friend. My hair was breaking off and falling out at a more noticeable rate. The horrid sweating attacks I experienced left me drenched and were almost more than I could handle. I began having worsening muscle pain and weakness. I was even more lethargic than before. I knew that I would get progressively worse as I aged, but the speed at which it started to accelerate shook me to my core.

I finally started to think there may be a connection between these worsening symptoms and my gabapentin use when my physical therapist discovered I was on it. He was very blunt. He told me I should not be taking this drug at all. He said the key to dealing with my fibro symptoms was movement, not drugs.

But I was hesitant to break up with Gabby just yet. We had some good times together and I was afraid of how I was going to cope without it. Even though my symptoms were worsening, I still valued Gabby for how it controlled my nerve pain. But was it worth it in the long run? Would the side effects outweigh the benefits of the drug?

Finally, after an incident at work — where involuntary eye-rolling got me in trouble — I decided it was time to do something before it got any worse. However, when I tried to go cold turkey, I found how habit-forming this drug really is. Just cutting out 300 mg a day from one dose knocked me on my butt. The headache was brutal. I decided to see my doctor before attempting this again.

Luckily, she agreed that it was time for me to break up with Gabby, but to do it by dropping 100 mg each dose instead of 300 mg. Even so, I still had some pretty bad withdrawal symptoms. I missed two full days of work with the chills, sweats, body aches, and a major headache. It was pretty much like having a flare on steroids.

If you haven’t tried Gabby, but have been thinking about it, I recommend first having a serious conversation with your physician about the pros and cons and potentially dangerous side effects. After my and my coworker’s experiences, and with what I’ve read in online support groups, I could never give this drug a positive recommendation. I thought it was my savior until it became my downfall.

Editor’s Note: As with all diseases and medications, each patient’s experience can be different. For gabapentin, it’s worth reviewing all of the U.S. Food and Drug Administration’s information about the therapy’s pharmacology, adverse effects, clinical trials, and withdrawal effects. That information, and more, is available here.

Gabapentin is an anticonvulsant medication used in the treatment of both epilepsy and fibromyalgia, among other conditions. Its labeling includes an FDA warning (under “counterindications” on page 10) about suicidal behavior and ideation that notes, “Antiepileptic drugs (AEDs), including Neurontin, increase the risk of suicidal thoughts or behavior in patients taking these drugs for any indication. Patients treated with any AED for any indication should be monitored for the emergence or worsening of depression, suicidal thoughts or behavior, and/or any unusual changes in mood or behavior.”

Suicidal thoughts or actions occur in about 1 out of 500 people taking Neurontin, according to the FDA. It adds that any of these behaviors should be immediately reported to healthcare providers.

The FDA also discusses withdrawal, noting that antiepileptic drugs should not be abruptly discontinued.

The most frequent adverse effects in adults are dizziness, somnolence, and peripheral edema. Others include difficulty with speaking, amnesia, tremor, double vision, and unusual eye movement.

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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

11 comments

  1. Karen says:

    It is very confusing. I have tried many drugs. Elavil, Cymbalta, Tramadol, Gabapentin, Flexeril. They all seem to help for a time but then stop or cause adverse effects. I am now trying Noni Juice & hope to eventually be off of the drugs.

  2. Marcia Hagen says:

    I have been taking Gabapentin for many years with no side effects. I take it to get into the deeper levels of sleep and it works very well for that. I don’t have fibromyalgia problems any more now that I get enough sleep. I go to a strength and stretch class for seniors three hours a week and that probably helps too. My dosage is 200mg, twice a day, 12 hours apart. I am 81 and I have had fibromyalgia for 30-40 years.

  3. Grace from Australia says:

    Why oh why do we keep trusting Big Pharma? I have had very bad experiences with Tramadol (tried only 2 x) and even low doses of Endep. Used Somac for reflux for 3 days and had bad side-effects. Was given a scripts for medication for Osteoporosis and researched the side-effects before taking it. Noticed that I had most of them already because of FM. Did not need to add to that. Am not even trying anything anymore except for supplements and only once in a while Norgesic and Panadol Osteo. It’s not worth it!

  4. Marita Mitchell says:

    I too have had horrendous side effects from Gabapentin, as well as many others, including Morphine. Saying talk to your doctor is pointless advice. Although my doctors have been very caring and helpful, they have inadvertently put me through worse hell than the Fibro itself.
    My current strategy, arrived at after many years, with the help of my GP and my Psychiatrist, is taking the barest minimum. I take 3 doses of Paracetemol during the day to create a baseline, and at night I take Valium, Faverin and Normison to sleep and the lowest dose of Oxycodone for pain. My psychologist helps me to accept the pain and I use breathing strategies and meditation to get through the worst.
    My advice to all, you are strong, avoid the drugs as far as you can. They all have side effects, often far worse than the disease.

  5. Sharpski says:

    A substitute for Gabapentin is Lyrica. All medications can have side affects, it is up to you, not to let a doctor tell you I will see you back in a month and we will see if your symptoms have stopped.

  6. James milne says:

    Jeepers I got prescribed 700mg 3 times aday, my body has swollen up and my doctors don’t understand why, my neurologist prescribed me this dosage and says it is quite safe, and will help my symptoms.

  7. Tanya says:

    I started out on gabapentin,then was quickly changed to pregabalin when it was approved for fibro. After 6 months I had to get off because of side effects. The worst being suicidal depression and ideation. I became very insular and isolated, with aggression. I’m far from an aggressive person! Along with the heavy sluggishness, weight gain and dizziness, it was causing me more problems than ever. I will not take either ever again. Having said that I do know people who actually find it helpful. My friend who has epilespy from his brain tumour swears by it.

  8. Shelagh Cooper says:

    My late husband was put on Gabapentin for back pain. It turned him into a monster. He litterally put his fist through the bathroom wall, tiles and all. He didn’t even remember doing it and you couldn’t even look at him the wrong way or he blew up at you. Once I had shown him other people’s cases he took himself off them. His doctor was surprised at his reaction until Peter told him to look it up on line.

  9. Linda says:

    I started taking gabapentin for fibro and found it was a life saver. I noticed that it helped with the pain from fibro right away. I could not tolerate much of the drug though. All I could tolerate was 600 mgs a day and it caused so many problems that I dropped the dosage back myself to 400 mg a day. What a difference that made. I still have some side effects, but not nearly as pronounced as before. I would say over all that my experience with gabapentin has been positive, but I realize that not everyone can tolerate the same medications. Sure wish research could find another way to treat the pain of fibro with drugs without all the terrible side effects that come with them.

  10. L Picard says:

    I have been taking gabapentin for a few years now and have not noticed any side effects. This is rare for me as 6/7 anti-depressants gave me crazy, itchy rashes and the one that didn’t give me side effects didn’t help my pain at all. The bonus with the gabapentin for me was that it also improved my migraines. I have been scared to try Lyrica because I have heard some awful stories about it so I will continue with the gabapentin, which is similar.

  11. Xtrag says:

    I am now on medical marijuana and have successfully decreased Vicodin from 750 3-4x , and neurontin 800 3x and skelaxin 800 3x – all down to 2x a day.
    And not heavily on the mm either.
    You need to go to a new rheum or nuerologist or other who will prescribe it. Not covered under most insurances, but neither is the copay for other meds. Hoping to cut down to once per day soon. Good luck to all fellow fibro sisters AND bros.

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