Location: Chicago, Illinois
Years with Migraines: 20+
Occupation: Self-employed in technology consulting/author
How long have you had migraines?
I’ve had migraines since my 20s. My first official diagnosis was with hormonal, cycle-related, migraines. Unfortunately they’re not only cycle-related anymore, but my cycle is absolutely a big part of my migraine picture.
When do you usually get migraines?
I made a New Year’s resolution 5 years ago to find out what was affecting my migraines. I have 5 years of data now. My doctor laughs every time I report I have migraines something like every 5.4 days or every 3.7 days. My primary observations are that I’m super sensitive and sometimes one little thing can push me over the edge. I almost feel as if my brain has a threshold and after a certain number of days my brain exceeds the threshold and I have a migraine.
It’s very upsetting but I feel I have a better understanding so I’m less surprised by the migraines. I now know I get them every 5-6 days, if I’m on day 5 and I get a migraine it’s no longer the earth-shattering event it used to be and I’ll take care of myself, whereas in the past I’d be much more undone by it. Some of the things that seem to really impact me include smoke, even just campfire stuff, which is a real bummer because I love a good campfire. Some kinds of wine and added MSG will give me a migraine. I’ve tried every kind of elimination diet you can imagine. I’m already a vegetarian and I cook a lot at home, but added MSG is the only thing I can say for sure causes a problem. Gluten, dairy, soy… I got rid of all of them. One day I looked at my data and it wasn’t making any difference, so I decided to abandon the elimination diets because I was making myself nuts. Stress is also a trigger.
What have you tried pre-Cefaly?
Literally everything, most people will say that but I’ll give you the list: I sought help from a variety of healthcare professionals in addition to my primary care doctor, OB/GYN, and neurologist. I also saw an acupuncturist and chiropractor, and went in for allergy testing. I visited my dentist to make sure I didn’t have grinding or structural problems. I tried a huge range of drug therapies and the aggravating universal fact of them all is that they had a side effect of weight gain for me. I tried anti-depressants (SNRIs, SSRIs, and tri-cyclic types), traditional migraine medications, anti-seizure medications, and even a beta-blocker which made me a zombie for 6-months. I didn’t recognize it at the time but I was barely functioning. If there were side effects, I would almost always get them. The weirder the side effect, the more likely it would surface. I had drugs that made my left fourth and fifth toes go numb; all soda tasted flat; I had weight gain; I had lethargy. I had one medication that had a side effect of me waking at 2 am with an anxiety attack. I am not usually a person who suffers from anxiety! I developed a good relationship with the local pharmacist because often she was more informed about the side effects and could help me puzzle out what was going on. I also tried neurotoxin injections but those made me less likely to know when the migraine had started, and less able to act quickly to try to stop it.
About 18-months ago is when I started really committing to using the Cefaly every day. Now I only take a triptan as needed and over the counter medication when I have a migraine. I do take vitamins and probiotics, but I’m not on any preventive drug therapies right now, other than Cefaly.
What does your migraine feel like?
I have almost exclusively right hemisphere migraines. It’s like someone inserted three ice picks – one in the base of my skull, one through my right eye, and the third through my right temple. I don’t have aura.
How did you hear about Cefaly?
Because I’m very upfront of the fact I have migraines, the day the announcement came out about US approval for the device, about six friends forwarded me the info. It was all over my Facebook wall too because people kept posting it for me to read. I talked with my doctor about it and he was very supportive and thought this would be a good alternative for me.
What’s your Cefaly experience like?
With regular use of Cefaly I’ve gone from having a migraine every 3.4 days to every 5.6 days, so I have had twice as many migraine free days in the 18 months that I’ve been using Cefaly every day. I had to follow the directions and train myself to the sensation though, which took me about a week to acclimate. While at first the sensation was uncomfortable, I’ve learned to view it as comforting because it brings me relief. Now I find the sensation quite normal and not uncomfortable any longer. I usually use Cefaly toward the end of the day while I’m watching a little bit of TV.
What made you want to share your story?
Migraines are disorienting and very disruptive. It causes such havoc to suffer from frequent migraines. I feel it’s really important to work as a community to share the information about what options are out there. So many of the therapies available for migraine sufferers are pharmaceutical and there are so many side effects. Having a treatment option that can give some relief and doesn’t have significant side effects is huge. I want more people to think about using Cefaly for this reason.
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.