“The present case highlights the marked improvement of FM symptoms in a patient who has been resistant to a wide variety of treatments for over seven years.“ Kararizou et. al. 2013
The Big Three (Lyrica, Cymbalta, Savella) Ghetto in Fibromyalgia
Don’t get stuck in a rut when your doctor only offers the three FDA-approved drugs to treat your FM (Lyrica, Cymbalta, and Savella). FDA-approval doesn’t mean ‘best in show’” Alan Spanos, M.D., Chapel Hill, NC From FMNETNews
The three drugs approved for fibromyalgia are a good thing, but doctors that focus entirely on them may be missing real opportunities. A case study of a fibromyalgia patient (with migraine) who responded spectacularly to a little-used drug demonstrates how important it is to stay informed, find a flexible doctor, and keep your options open.
A Case Study
A 41-year-old Greek woman with a history of severe headaches since she was 18 ends up in a neurologist’s office in Athens. She’s in trouble. She’s having about 10 (at 10 on a scale of 1 to 10 in severity) headaches a month. After giving birth seven years earlier she’d developed widespread pain, trouble sleeping, severe fatigue, and muscle stiffness. A psychiatrist was no help and several years later she was diagnosed with fibromyalgia.
All the treatments she’d tried (fluoxetine, venlafaxine, duloxetine, Lyrica, NSAIDs, physical therapy, exercise, and alternative medicine) bomb. By the time she reaches this neurologist’s office, she’s describing her symptoms as ‘devastating.’
The neurologist puts her on one medication, topiramate (25 mg once daily titrated up to 50 mg twice daily over the course of a month). Two months later her fibromyalgia pain has disappeared completely and her migraines are down to once every two months. Ten months later she remained symptom-free; her long ordeal with fibromyalgia and migraines appeared to be over.
Topamax (topiramate), is an anticonvulsant that reduces brain activity. With brain scans showing enhanced activity in interoceptive and other brain regions that modulate pain in both fibromyalgia and chronic fatigue syndrome, the idea of reducing some brain activity makes sense. Anticonvulsants, of course, are nothing new to FM or ME/CFS, with Lyrica and gabapentin being used widely in both conditions, but Topamax is a bit different.
Topamax knocks down epileptic seizures by blocking sodium channels, by enhancing y-aminobutyric (GABA) receptor activity, and by antagonizing receptors for the main excitatory element in the central nervous system, glutamate. Check out Marco’s glutamate series in ME/CFS here and keep in mind a 2011 CDC study that implicated glutamate activity in ME/CFS. (Lyrica inhibits glutamate production in the brain but does not affect GABA functioning)
Topamax’s ability to enhance a inhibitory neurotransmitter (GABA) and reduce the main excitatory neurotransmitter (glutamate) indicates it works in multiple to reduce CNS activitation. It’s also able to reduce something called ‘cortical spreading depression’ some researchers think is present in both ME/CFS and FM.
A Migraine/Fibromyalgia/ME/CFS Connection Again
We recently reviewed a study that found high rates of migraine in chronic fatigue syndrome (ME/CFS). In fact, the authors reported so many similarities between migraine and ME/CFS, that they suggested ME/CFS might be a form of migraine (and vice versa). Some researchers believe fibromyalgia and migraine and other chronic pain disorders have similar roots.
FM, ME/CFS and migraine share many of the same symptoms, have a similar gender imbalance, often overlap, and display similar kinds of ‘hypersensitivity’ to pain, odors, light and/or other stimuli. Some migraine sufferers also experience unremitting ME/CFS-like fatigue that lasts much longer than their migraines.
Chronic fatigue syndrome is not often thought to be a ‘pain disorder,’ but pain issues such as allodynia and migraines, once thought to be associated with fibromyalgia, occur frequently in ME/CFS as well.
Now we have a case study, suggesting that an anti-migraine drug called Topamax (Topiramate) might be helpful, not just in migraine, but relieving the pain of fibromyalgia as well.
An Underused Drug?
Topamax is not commonly used in either fibromyalgia or chronic fatigue syndrome. PatientsLikeMe does not list it in the top 15 treatments for fibromyalgia. Compare the 1,000 plus evaluations of Lyrica and Cymbalta to the 37 at PatientsLikeMe. (I was unable to find the actual Topiramate rating page for fibromyalgia at PatientsLikeMe). No ratings for topiramate and fibromyalgia could be found at Curetogether.
It’s no surprise,therefore, to learn that no studies have examined the topiramate effectiveness in FM or ME/CFS. Seven of the 13 FM patients rating its effectiveness on Drugs.com, however, gave it a 9 or 10 out of 10. Several people reported the drug made them anxious and/or paranoid, but for others it was a godsend.
One woman on opioids for severe pain was able to get off them entirely by taking Topamax and Cymbalta. She reported that her pain was gone. Another saw her pain levels go from an unmanageable 7 or 8 to a very manageable 3 or 4. She also lost the weight she’d gained on Lyrica. (Weight loss is a common side effect.) Another called it a wonder drug. (Check out a discussion–Topamax as an alternative to Lyrica, here.)
Dr. Bateman calls Lyrica (and Neurontin) her two top choices for pain but brings Topamax into the discussion as well. (Dr. Klimas turns to low dose naltrexone first).
Dr. Bateman had this to say about Topamax ““Topamax (topiramate)…. must be dosed very carefully to avoid common debilitating side effects (e.g., fatigue, nausea, diarrhea, trouble concentrating). Start low (12.5 mg) and build very gradually (12.5 mg every one to two weeks), with the largest dose at night and little or none in the morning. Topamax may control the migraines, get your patient sleeping, and work as a mild pain modulator to minimize the FM during the day.”
Numbness or tingling, fatigue, weight loss (Dr. Bateman uses it as a weight-loss drug), and perhaps most troubling, more difficulty concentrating (eg… “Dopomax).
The Topamax Survey
As of 9/15 55 people had taken the survey.
- About 55% of people had never heard of it or knew little about it and 20 had tried it.
- Of those 20 almost three-quarters used it for migraine with 14% using it for pain. Thirty percent said it was very effective and 30 percent said it was moderately effective.35% said it was not effective.
- Thirty-eight percent said it had strong side effects, 10 percent said it had moderate side effects, 33% said it had mild side effect and 19% said it had no side effects. ‘
Here are some comments
- I used Topomax for Migraines in the past. It did help the severity and frequency of my migraines. The side effect of weight loss was great. The side effect I didn’t like was that it made my “word finding” ability worse.
- pain level down substantially, no migraines
- I got up 100mg before I almost lost my vision you have to get to 250mg according to my neurologist for Fibro help
- couldn’t tolerate the terrible fatigue and brain fog
- Side effects are dose dependent. I would be dead if it hadn’t worked for my migraines!
- My dosage had to keep being increased. I could not mentally function after awhile (forgot words, could not spell, talked very slowly).
- kidney stones
- I was on topomax for some time prescribed by my neurologist, and then when I moved to a different state, my doctor took me off of it and gave me tramadol…..didnt understand this, and have had more chronic to severe pain since being off of it and have also gained substantial weight
- Worked wonders for migraines, drowsy when starting, some tingling in fingers in toes, did nothing for fibro pain
- Perhaps my dosage wasn’t right, but it made me very dopey and did not seem to help the pain. However, if solid evidence is found by more studies that Topamax significantly helps,fibromyalgia, I would consider trying it again.
- i could not find my car keys even when they were in my hand. lol
- I would love to try it. Might as well, I’ve tried everything else.
- Doc kept increasing dosage because my migraines wouldn’t stop. By the time I was on the max dose I was experiencing rage like never before in my life. This drug made me go from calm to extremely angry very very quickly
- I am always sensitive to alot of drugs ..So I woudlnt be willing to try this either ..I guess I will just put up with the fibro…I have iss
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.