Gabapentin is an anticonvulsant drug primarily used to treat epilepsy that may be helpful to some ME patients.
Gabapentin may benefit ME patients due to:
- Reducing general pain
- Thwarting neuropathic pain
- Minimising fatigue
- Relieving muscle cramps
- Enhancing sleep quality
- Stopping restless legs syndrome
- Improving bladder function
- Having potential neuroprotective properties
- Decreasing multiple chemical sensitivity symptoms
It was originally thought that Gabapentin primarily worked due to its effects on the GABA neurotransmitter hence inducing calmness and sleep. It is now thought that Gabapentin’s mechanism of action is due to it being a calcium channel blocker. As a consequence, it may reduce the secretion of certain neurotransmitters that cause pain and stimulate the brain. Anecdotally, many ME patients have gained more energy as a consequence of taking Gabapentin. Unfortunately, in a reasonable portion of these cases, the effects seem to have gradually worn off.
ME specialists and doctors opinions’ on Gabapentin
Dr. Goldstein listed Gabepentin among his five most favoured treatments for those with ME. The others being; Nimodipine, oxytocin, intravenous lidocaine and baclofen. Dr. Goldstein believed that Gabapentin may regulate the neurotransmitter imbalance in the brains of ME and fibromyalgia patients. He recommended a low dose of 100mg-800mg, stating that effects should be noticed in the timeframe between 30 minutes and 8 hours. If tolerated, he would recommend the dose be slowly titrated upwards to a maximum dosage of 5000mg per day (e.g. 3 doses per day totalling 5000mg.) Dr. Goldstein found that a fairly high portion of his patients reported increased energy soon after their first dose with some patients also experiencing Gabapentin’s antidepressant effects.
Dr. Teitelbaum uses Gabapentin on some of his patients for sleep enhancement. He groups Gabapentin with Gabitril and Lyrica, stipulating that despite all three drugs being related, one of the three will often be effective and tolerated by the patient even if the other two are not. Dr. Teitelbaum generally starts patients on either Gabapentin or Gabitril and only prescribes them Lyrica if these drugs are not effective. He has found these three treatments to reduce pain levels, improve restless legs syndrome symptoms and improve the patient’s deep sleep. Dr. Teitelbaum warns that the aforementioned three drugs are not addictive but it is imperative that they be weaned off slowly especially if taken for a long period of time. He starts patients on 100-300mg per night of Gabapentin and gradually increments the dosage to 300-900mg three times per day.
Dr. Cheney categorises Gabapentin into the class of neuroprotective drugs that may help improve ME patients’ sensitivity to stimulation. He started those with ME on 300mg three times per day. He believes some doctors use doses of Gabapentin that are too high. In a 2009 talk, Dr. Cheney seemed to be less of an advocate of Gabapentin.
Dr. Enlander uses Gabapentin on some of this patients. He believes that Gabapentin stops the “abnormal impulses” ME and fibromyalgia patients’ brains experience. As a consequence, the brain’s muscle fibres experience a reduction in fatigue. Dr. Enlander uses doses up to a maximum of 2400mg per day
A 2007 study by Arnold et al. was performed on fibromyalgia patients who took Gabapentin at doses between 1200mg and 2400mg for a period of 12 weeks. Patients experienced significantly improved sleep as well as less pain and less fatigue compared to the placebo group. The most frequent side effects noted were sedation and dizziness.
A 2010 study by Usui et al. found a strong indicator concerning which fibromyalgia patients were likely to respond to Gabapentin. Those patients unlikely to respond to Gabapentin had hyperperfusion in certain parts of the brain as determined by a SPECT scan. Essentially, increased blood flow in the brain was strongly linked with a poor patient response to Gabapentin.
A 2015 study by North et al. examined the effects of an extended release version of Gabapentin on fibromyalgia patients over 15 weeks. Patients noted a reduction in pain, improved quality of life as well as an increase in quality and quantity of sleep. Many improvements were noted after only 4 weeks. Unlike the Arnold et al. study, this study had a smaller sample size and no control group.
Gabapentin is generally considered to be fairly safe and well tolerated. Despite this, some ME patients have anecdotally experienced side effects. A Cochrane Review by Moore et al. in 2011 based on data from chronic neuropathic pain patients concluded that Gabapentin was mostly tolerable however adverse events were frequent. 12% of patients withdrew from studies due to side effects. The most common being; dizziness, somnolence, peripheral oedema and gait disturbance. The Cochrane Review stipulated that serious adverse events were no more common in the Gabapentin group than the placebo group.
It should be emphasized that there is fairly universal agreement that Gabapentin should be started off at a lower dose and gradually increased if tolerated. Also stopping treatment suddenly may be harmful and patients are commonly advised to reduce the dosage slowly. Some doctors recommend Gabapentin only before bedtime with the motive of improving sleep whilst doctors with other objectives recommend that it be taken three times a day.
My Experience with Gabapentin
I began taking Gabapentin late in 2015, hopeful that I would reap several of its benefits. My poor sleep was the primary reason I chose to take Gabapentin. Related to this, I was interested to see whether my restless legs syndrome symptoms would ease. Gabapentin sometimes reduces patients’ overstimulation although I was slightly dubious as to whether this key symptom of mine would recede. I was also hopeful that I would join the anecdotal reports of ME patients who have gained more energy as a result of taking this drug.
I began taking 100mg of Gabapentin before bed and gradually increased this dosage as I failed to notice any side effects. I topped out my dosage at the relatively small maximum of 300mg per night. At this quantity I would sleep fairly deeply throughout the night but wake up still feeling unrefreshed. Curiously, my restless legs syndrome was unaffected by the Gabapentin. I was reluctant to increase the dosage any higher as I felt mildly ‘zonked’ throughout the days. Gabapentin’s effect of knocking me out during the night was a secondary reason to not increase the dosage further.
After 300mg per night of Gabapentin for a period of a month, its ability to keep me asleep during the night started to diminish. I then tapered off the drug with relative ease as its only real positive effect of keeping me asleep for most of the night had begun to wane. Several months later, I tried Gabapentin at an identical dosage and had a parallel experience. After one month, its sleep producing effects had diminished.
Overall, I didn’t notice any of the more common side effects of Gabapentin and its efficacy towards improving my general ME was negligible. Based on the Usui et al. study mentioned earlier, it was more likely that I would be in the responder group. My SPECT scan showed hypoperfusion (reduced bloodflow) in the brain- the opposite to the fibromyalgia patients who failed to respond to Gabapentin.
Gabapentin is a fairly common drug in the ME realm, although more regularly prescribed for fibromyalgia. It has the ability to target multiple, seemingly unrelated ME symptoms and thus patients take it for different reasons. My sleep length improved as a consequence of this drug but my sleep quality failed to be enhanced. Ultimately this single positive effect wore off causing me to stop taking the Gabapentin.