As a child I used to get “food headaches” when I ate chocolate, “sick headaches” when I went to a slumber party without slumber, “perfume headaches” from strong fragrances, and I was always carsick or motion sick when riding or boating. I couldn’t do roller coasters or the shifting floor attractions at Disney World without becoming violently ill and suffering a terrible headache for days. I never drank alcohol as a child or teenager, yet I used to describe my headaches as “hangover headaches”, because that is what I imagined they would feel like based on TV and movie dramatizations. I found I got “hair headaches” when pulling my hair in a tight ponytail, and “sinus headaches” where there was an abrupt change in weather (barometric pressure). I have since learned that these were all likely migraines. In my 30s I began seeing cracked glass–type auras in one eye or the other, which would get larger and larger until it moved out of my sight. I didn’t get headaches afterwards, however. I was told that I had “ocular migraines” which had the visual aura without the headache.
Then the headaches started accompanying the aura—with a vengeance. Sometimes the preceding aura would look like zigzag flashing cracked glass, and other times it would appear as a huge white or black hole in my vision. These auras virtually blinded me for as long as an hour, and then the “sick” headache started, which could last for days. It began seriously interfering with my life. Since they had become so incapacitating, I tried seemingly everything, but was still suffering from them almost daily. I tried most of the prescription migraine medications. Some worked, but often caused terrible side effects or didn’t last long enough. I felt that I needed to take them at least once a day, which was not advised, as you were only supposed to take a maximum of 8 per month. 8 would barely last me a week in a typically bad migraine month.
I heard about Axon Optics, a company in Utah that determined eliminating a certain light wave length from a migraine suffer’s vision would help with the photophobia and eliminate the light triggers that up to 90% experience. They developed glasses that would do this. I was one who suffered from photophobia and knew light was a huge trigger for my migraines, so I ordered their glasses. Living in sunny Colorado, I was bombarded by the normally welcome bright sunlight almost every day. I definitely received relief from my outdoor migraine sunglasses, my indoor migraine glasses, and my over-the-Rx migraine glasses. I would never go out of the house or to a movie without them. They have been my main staple for light trigger related migraine prevention. However, they did not stop the non-light triggered migraines.
I initially went to an ophthalmologist to make sure there was nothing medically wrong with my eyes. There wasn’t, so I then went to a neurologist who recommended the recently FDA-approved treatment of Botox for migraine. She recommended that since I was unable to control the migraines with the customary meds. She was qualified to administer the Botox, but not terribly experienced, and I experienced just marginal and short-term relief. When she moved out of the state, I went to another neurologist who agreed that Botox had good potential for me, and he administered a first treatment. I did experience relief.
Then came the stress of a death in the family, and the migraines again got out of control. They progressed past the headache to intestinal problems and finally to causing true vertigo (not just dizziness) with nausea, horrible room spinning, and the inability to move from the bed. I had to take anti-vertigo meds in addition to the migraine meds, but still wasn’t getting any better.
In my desperate web searches for a cure, I stumbled upon a book that emphasized two major components for controlling migraines. The author was a long-time well-respected neurologist at Johns Hopkins. The first thing he suggested was to eliminate all tyromine-containing foods, as well as those containing sulfates and nitrates. I already knew red wine could trigger a migraine, as well as chocolate, but had no idea that my favorite smoked salmon, cold cuts and aged cheeses were terrible culprits, as well as my beloved orange juice. I glumly determined to eliminate these from my diet, which I determined included everything I liked. I adore all cheeses, but began restricting my cheese intake to the allowed cream cheese, cottage cheese, and American cheese, none of which are aged. I had to avoid everything from provolone, cheddar, parmesan, gorgonzola, swiss to blue cheese. And sourdough bread! I love sourdough bread, but that was listed as well as any freshly baked breads—ouch! Sour cream was also taboo, as well as any pickled, smoked or preserved meat or pickled product—bye bye smoked salmon. And farewell to my morning OJ ritual, which I drank instead of water as a child growing up in Florida. No more lemons in my tea—in fact, no more tea! I used to take strong coffee or tea the minute I got a migraine, because I was told that the caffeine would have a good effect on the blood vessels, and help the migraine. However, according to the book’s author, that may work for the short term, but is also a powerful and often misunderstood trigger.
I decided to take a hard look at the medications I was taking. I had been keeping a migraine diary on my iPhone since the migraines began, so I was able to trace back the medications (non-migraine). Many of my meds were generic, as insurance companies won’t cover most name brands, assuring the patient that they are “the same”. They aren’t, but that is the subject for another article. I began researching some of the generics I had been given instead of the name brands I used to take, and found confirmation via web forums that people have experienced headaches on the generics, while not on the name brand. One, in particular, I was able to trace back to the beginning of the really frequent and chronic migraines. I went to my pharmacy and found that they had switched me from name brand to generic without telling me, at just about that time. Since the name of the generic looked so much like that of the name brand, I hadn’t caught it. I asked that they switch me back to the original, and to always consult me before switching my medication. Even though the medication is more costly now, it was well worth it, as that seems to have been an essential part of climbing out of my migraine black hole.
Part 2 of the book’s plan was, seemingly perversely, to stop all prescription and non-prescription migraine medications! I was convinced that I would surely die. However, I had recently suspected that I had begun getting “rebound” migraines after taking the meds. The book contends that this is a real problem, and all meds must be stopped—cold turkey.
I expected the worst (plus lost a few pounds), but after a week or two began feeling better—I wasn’t afraid to open my eyes in the morning, or the blinds in the kitchen. I would get much less frequent headaches, and they seemed less painful and of shorter duration.
When I returned to my neurologist, he told me that he agreed with the thesis that tyromine, sulfate and nitrate-containing foods, as well as light, were a huge mitigating factors in migraines. He also agreed with the rebound headache theory from taking migraine meds. This time when he administered the Botox for migraine, I felt that finally put me on top of the situation, and my migraines were finally under control. These injections should be repeated every 3 months for maximum effect, and insurance should cover most of the cost.
Every once in a while I won’t be able to resist the freshly baked sourdough bread in a restaurant, savory brie cheese on a baguette with smoked salmon, iced tea or a freshly squeezed glass of orange juice. I gritted my teeth and expected the worst, but so far, it appears that infrequent “cheating” on forbidden food or drink doesn’t throw me back into uncontrollable migraines. Occasionally, after one of these infractions, I will experience an aura, but without the headache or other adverse symptoms. I know better than to tempt fate by drinking strong coffee or red wine, nor would I splurge on jerky, but moderation and infrequency does seem to work.
I had some of the most frequent and worst migraines my neurologists had seen, and I never really expected to get them under control. When a lot of triggers converge, such as stress, caffeine (even in supposedly decaf coffee and tea), bright light, heavy fragrance, and aged meat or cheese, I can expect a migraine; however, I try to keep that from happening.
My most important choices were to stop all migraine meds, stop eating forbidden food and drink, change some of my other medications, wear my migraine glasses, and get quarterly Botox injections. If these changes were able to stabilize my seriously out-of-control migraines, I firmly believe they can work for others, as well. But, you really do have to give up ALL the triggers, including any form of caffeine—and chocolate. It may make for some foggy mornings, but that is considerably better than the alternative.