Location: Eugene, Oregon
Years with Migraines: approximately 40 years
Occupation: Disabled (has Master’s in Chemistry and writes papers on various scientific topics)
How long have you had migraines?
I’ve had migraines since I was little. I’m not entirely sure whether it started in elementary school or middle school. I think there were some food triggers and weather-related headaches. My migraines aren’t the result of an accident or major illness or anything. They had always lasted a really long time – anywhere from a week to a month – so they were hard to diagnose. In college I had a friend with cluster headaches. When I told her about my changes in vision followed by horrible headaches and all the other fun stuff associated with migraines, she suggested I see a doctor. He finally diagnosed me with migraines in 1996.
When do you usually get migraines?
Barometric pressure change is probably my biggest trigger. I also have or had food triggers – the biggest food triggers I used to have were cheese, chocolate and peanut butter. What I’ve found now, after having used the Cefaly for about 3 years, is that it has reduced my constant pain so much that I’m able to reintroduce some of those things back into my diet. Changes in lighting — computer lighting and TV lighting have always been a big issue. Fluorescent lighting is the worst, particularly when it starts to flicker. I can also be triggered by scents, like lavender, patchouli, rose and charcoal grills; rose is the absolute worst.
What have you tried pre-Cefaly?
I’ve tried a lot of different medications. Many made me fall asleep. I’d try to meditate but with my narcolepsy I’d just pass out. I have found mindfulness mediation works because I can do it while walking around. It has really reduced my pain by helping me reduce the tension that comes from being in pain all the time. I’ve also tried acupuncture, which would work for an hour and then that was it. I tried chiropractic neck care but that made me hurt more. Massage was very bad for me. I tend to get migraines at the end of a stressful situation instead of while I’m stressed out. So the rapid relaxation from a massage would bring on a horrible migraine. I tried physical therapy and that helped a lot. The exercises were very gentle and have loosened up my neck enough to reduce the pain I have from trying to keep my head still when I have a migraine. In therapy we worked on, muscles in my neck, jaw, face, collarbone, upper back, and pretty much all the way down my spine. I had a radio frequency nerve block in my neck once as well. It worked for a couple of years and then it didn’t. I also tried neurotoxin injections and I continue to use those because they work very well for me. Triptans ceased to work as abortive medications after about 5 years. For preventives, the best for me are anti-seizure medications, a benzodiazepine and an anti-psychotic. Since I live in state where medical cannabis is legal, I’ve been able to experiment with different cannabis strains. I have found a couple that are very effective for relieving my pain.
What does your migraine feel like?
I get migraines in two places and they feel completely different. I have constant pain from a migraine that goes from right behind my eye to my occipital nerve. When it gets bad, it’s an intense throbbing pain like a heartbeat in my brain. My other migraine is on the opposite side of my head, right above my eyebrow, and it just feels like I’m being stabbed by an ice pick. The Cefaly electrode sits right on top of it. Since using Cefaly, the frequency of that type of migraine has gone down. In fact, I don’t think I’ve had that type of migraine in about 6 months.
How did you hear about Cefaly?
My neurologist told me about Cefaly. I think I actually started using it very soon after it was approved by the FDA in the US. My doctor had a couple of patients who had success with it. Since I still had more than 15 migraines a month and high constant pain even with medications, I gave it a shot and was impressed with how much it reduced my daily pain and frequency of my migraines. My doctor continues to prescribe it other patients.
What’s your Cefaly experience like?
It was a little intense the first few times I used it. The kind of buzzing feeling you get when you use it almost hurt but I don’t think it even took a month before it actually started to feel good. I would get this kind of numbing feeling from my eyes to the middle of my head and back to my ears. It was really nice to feel all that area numb. I use it every day. I actually did have a month when I was in the hospital for a different reason and I did not have my Cefaly. My daily migraine pain shot up to an 8 out of 10. It was normally around a 5. When I went home and started using my Cefaly again, in about a week or two my pain started to go back down. Now my daily pain is a 3-4. That experience was a really good ‘Yes this works for me; do not stop using it’ moment. I have no doubt that Cefaly has decreased the frequency of the migraines that I would get behind my eyebrow. I also believe it has significantly lowered the constant migraine I have behind my eye. I have maybe 2-3 migraines a month now. It’s also decreased my daily pain so much that I only have issues now with the weather-related triggers. That’s amazing! I still can’t believe it. It’s like really? Seriously? That’s all?
What made you want to share your story?
I firmly believe the Cefaly device has changed my life. My experience of not being able to use it for a month and then going back to it showed me that the Cefaly is a significant part of my migraine management plan.
Want to share your story too? We’d love to hear from you! Please send an email to m DOT coder AT cefaly DOT us. Please include your name, contact information, and let us know where you’re located so we can set up a good time to talk.
If you’re wondering if Cefaly is right for you, click here for more information and, of course, check with your doctor.