By Donna Gregory Burch
Fibromyalgia warrior Angela Holt has one of the most popular crafting channels on YouTube with some of her tutorials garnering more than a half million views.
But about a year ago, Holt was struggling to stay active in the online crafting community. The pain and restlessness in her legs were so intense that she often couldn’t sleep at night, and it was affecting her ability to craft and make videos.
“I just didn’t feel like doing it,” she said. “I was hurting too bad. My legs were hurting or something else was hurting. I’d just lose interest.”
Holt was diagnosed with fibromyalgia in early 2014. Like so many others with fibromyalgia, she was prescribed a series of prescription drugs that did little to lessen the pain. Percocet helped, but it left her in a fog. In desperation, she sought the advice of her primary-care physician, Dr. Robert Holston from Holston Family Practice in the small town of Cross Plains, Tennessee.
Unlike some physicians, Holston intimately knew all about the challenges of living with fibromyalgia. His wife has had it for 25 years, so he has a special interest in the condition.
Last year, Holston stumbled upon a Family Practice News article reporting the results of a small Spanish study using memantine (sold under the brand name of Namenda), a common Alzheimer’s drug, for fibromyalgia. The randomized, double-blind study compared memantine to placebo in 63 fibromyalgia patients. After six months, those in the memantine group reported less pain and a higher pain tolerance than the placebo group. The most common side effects were dizziness (25.8%) and headache (12.9%).
“When I read this article about Namenda, it made sense to me because it blocks the glutamate neurotransmitter, which is so common in the brain, and it slows transmission into the neurons. I think high levels of glutamate in the brain, for whatever reason it’s there, causes a perception of chronic body pain. In blocking the neurotransmitter glutamate, it tends to reverse or cool off the nervous system’s reaction.”
There are very few medications approved to treat fibromyalgia, and none of them work very well, so Holston began prescribing memantine to a few of his toughest fibro patients, like Holt, to see if it might help.
“Immediately, the first week I could tell a huge difference,” Holt said. “The brain fog was gone. The pain … was still there, but it wasn’t as intense, and the restlessness of my legs … was completely gone. I can remember stuff now. I’m not like a zombie. I can function! And then I was able to drop down to only taking Tramadol. I still have pain medication, but I’m not needing much at all hardly like I used to.”
Holt’s symptoms improved so much that she decided to share her experience with memantine on her YouTube channel. She considers her fibromyalgia to be mostly under control now.
Holston’s wife also has improved using memantine.
“[Memantine] reversed her fibromyalgia actually,” Holston said. “It had such a dramatic effect on her body pain. All of it went away except for the [pain related to] weather changes. It’s put her fibromyalgia in remission. It was like a miracle for her.”
But like every fibromyalgia treatment, memantine appears to only work in some patients.
“I’ve had at least 30 patients on Namenda, and the results have been variable,” Holston said. “If it works, it works beautifully. I’m just amazed by the results I see in the patients that have them. I would say a good 70 percent of my patients have had positive results.”
Dr. Ginevra Liptan, founder of the Frida Center for Fibromyalgia near Portland, Oregon, has also started using memantine in some patients.
“Quite a few patients of mine have registered significant pain reduction on memantine,” Liptan said. “It seems to work for about 60 percent of my patients who have tried it. Clinically, I have found [memantine] to be most helpful in patients on high dosages of opiates but still having high levels of pain. Since it works on a different pathway than the opiates, it can have an additive benefit. One of my patients had such significant pain improvement with Namenda that she was able to cut her opiate medication in half.
“The other group of patients I often use it for are those really struggling with high levels of both pain and fibro fog, as it can help both issues. NMDA [N-methyl-D-aspartate] receptor blockers [like memantine] were actually originally developed to treat Alzheimer’s dementia, not pain, so it can also help improve cognitive function for some patients.”
Dr. Jon Ebbert, professor of medicine with the Mayo Clinic, authored the previously mentioned Family Practice News article and says memantine deserves more study.
“There seems to be some accumulating evidence for memantine to be effective for pain, but we’re going to need bigger trials to be sure,” he said. “It’s worth investigating. We don’t have a lot of good options [for chronic pain] other than the opioids. … These are the kind of investigations – this sort of drug repurposing – that need to continue to happen, especially with pain.”
Unfortunately, since memantine is a generic drug, it’s unlikely to draw the interest of the pharmaceutical companies that perform most larger studies. That leaves memantine’s future as a potential fibromyalgia treatment in the hands of physicians who are forward-thinking enough to try something different.
“Absent wealthy angels who care about our patients, such studies won’t likely get done,” said Dr. Richard Podell from the Podell Medical Practice in Summit, New Jersey. “The only way we are likely to learn more is for doctors and patients to use it and then report their data to places where other doctors and patients can see the results.”
Podell has prescribed memantine to five of his fibromyalgia patients so far and recently reported the outcomes in a blog post. Two patients had moderate improvement, two had no improvement and one could not tolerate the drug at full dose.
Memantine’s cost is another barrier for patients.
“The biggest challenge I find as a clinician prescribing Namenda is that it is quite expensive and is only FDA approved to treat dementia, so using it for fibromyalgia is considered off label and not covered by many insurance plans,” Liptan said. “I often have to argue quite extensively with insurance companies to try to prove to them why they should cover it. Sometimes I am able to successfully appeal the denial and sometimes not.”
Still, the results from the 2014 Spanish study definitely warrant more research. Based on anecdotal reports, it could be the miracle some fibromyalgia patients are seeking.
For more information on using memantine/Namenda for fibromyalgia, visit the following:
Now it’s your turn! Have you tried memantine/Namenda for fibromyalgia? Did it help? Please share your experience in the comments section!
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.