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What is really causing your splitting headache?

The Caffeine Cause

My terrible journey with Migraines

           For 27 years, my life was plagued by right-sided migraine headaches. They started when I was 22 and lasted until I was 49, the age at which I finally figured out, independent of any doctor, that caffeine was causing them.  In fact, as it turned out, it was doctors, who were exacerbating the problem all along by prescribing drugs that often contained caffeine. They would even tell me to try a cup of coffee at the onset of the headache. It was the worst possible thing I could do for the headache, considering that I had developed an extreme sensitivity to caffeine without realizing it. But, I trusted the doctors, figuring that they knew best, when all along, their treatment, their drugs, and their lousy advice, was creating a perfect storm in my head.

As a result, for 27 years, I was prescribed a wide variety of powerful drugs that wasted my body, affected everything major aspect of my life, including possibly the loss of a pregnancy as well as my marriage, and may have contributed to long-lasting health issues such as dry macular degeneration.           

Cafergot, Fiorecet, Fiorinal, Esgic, Midrin, Atenolol, Topamax, Elavil, a wide assortment of triptans, Tylenol with Codeine, Demerol, marijuana, botox, Excedrin and Depakote are the drugs I tried along my headache journey. Some of these were prophylactic stabs-in-the-dark at prevention, none of which worked. Many of them are painkillers that seemed to aggravate the problem and I would cycle through the variety, hoping for better results the next time around. Some of them are the big guns drugs that stop the headaches, but leave you wasted in their wake.          

The ergotamines were the old-fashioned drugs that worked as vessel-clampers. They worked, but they were dangerous. The first time a doctor prescribed cafergot to me, he prescribed a dose that was way too strong for my 100 pound body. I ended up unable to open my arms and legs to get out of a fetal position. My muscles became locked from lack of blood flow. It also made me vomit. For days afterward, I had horrible rebound headaches. In the weeks to follow, I went through black out periods after taking too much of the drug again as I experimented with dosage, trying to find the magic about that would be just enough to kill the headache, but not so much that it made me sick or caused black outs. Once I figured out the dosage (one fifth of the original prescribed dose) and timing of that dosage, I was able to better control the migraines to keep them from escalating out of control. Cafergot suppositories became my crutch, the item I never left home without, for years. Then, the triptans became the popular migraine drug as Cafergot disappeared from the market due to safety concerns. 

Through the course of my life with migraines, I have tried just about every remedy known to the neurological world at the time.  I have spent thousands upon thousands of dollars on doctors, therapists, drugs, MRI’s, botox injections, biofeedback, and on insurance rates inflated because of my pre-existing condition. I have lost countless work hours and feel it drastically affected what would have otherwise been the most productive years of my life.  There was even a time when I considered applying for disability. To have altered my body’s chemistry with harsh drugs for 27 years could well have the long-term affect of shortening my life span and could possibly have caused my dry macular degeneration (no family history and “vascular condition” is a risk factor).  All of this, because I did not know that what was causing my headaches all along, in the smallest amounts, was the common substance, caffeine.        

The beginning of the end of my headaches came in 2008, when I was co-authoring a blog.  In a post one day, I mentioned that I had migraines.  Two of the readers of our blog commented on the post, telling me that the only way they had gotten rid of their own migraines was to eliminate caffeine completely from their diet.             

At the time, I didn’t believe that I consumed enough caffeine to make a difference. In fact, no doctor I had ever seen about it, thought my minor use could be problematic. Surely, they would know. They even prescribed caffeine and all told me the trick about drinking a cup of coffee at the onset. In theory, that might work since coffee is a vasoconstrictor, which might help to shrink the swollen blood vessels in your head. I know now, that it doesn’t work and serves to aggravate the problem if you already have a caffeine habit. At the time, I thought my headache  attacks would have been much worse without the caffeine.            

I was in the habit of having one cup of coffee in the morning that was made of half-strength caffeine (half-caf).  Then, I would have a glass of iced tea for lunch, and sometimes, as a chocoholic, chocolate in the evening. Adhering to my reader’s advice, I decided to wean myself off of a caffeine habit that I had had my entire adult life except when I was pregnant, during which time I did not drink caffeine and during which time I, incidentally, did not have headaches.  My doctors told me at the time, that the lack of headache was due to hormones and the miracle of pregnancy.             

I first reduced my cup of half-caf in the morning to quarter-caf.  The day after I began this reduction, I had a nasty withdrawal headache that lasted a week and required drug intervention of Frova.  The following week, when I switched to full decaf in the morning, again I had a headache for a week.  Next came the tea.  I also reduced it to half twice, with an extended headache resulting each time.  At that point, there was no doubt in my mind as to how profoundly the small amounts of caffeine were affecting me.  The last to go was chocolate and again, a headache.  Once my system was clean, I was completely cured of migraine headaches, or at least had learned exactly how to control them. I have not taken a single drug for a  headache since. It has been 12 years.  

To test my caffeine theory, I have experimented with adding caffeine back to my diet in small amounts.  I can tolerate one dose of caffeine in the form of coffee or chocolate if, I do not consume it again the following day to set up a cycle of need.  I have tested this many many times. Now, when I do get a caffeine headache, because I am too fond of chocolate, I am able to ride out the attack without intervention of drugs, because I don’t further aggravate the migraine by adding the caffeine fuel to the headache fire. They do not get bad enough to bother me to the point I would waste my body with drugs like the triptans.

In those 27 years, each time I have been to a doctor about my headaches, I have been routinely questioned about my caffeine intake. It is on their radar. But, I was never once told that I should eliminate caffeine completely from my diet. It would seem that the doctors were looking for abuse of caffeine, and were not concerned about moderate use.  Moderate use is not okay for me. Not even minor use is okay. I am amazed that the complete cessation of caffeine consumption is not a routine part of neurologists’ treatment plan for new headache patients. Whenever a patient presents with chronic headache complaint, doctors should automatically ask if the patient has any caffeine habit. If so, they should eliminate it completely from their diet for two months to see if it works. It won’t work for all, but if it worked for me so completely, there have to be many others out there that fall into this same trap.

Please write to me…

I would love to hear your headache stories as they might relate to the use of caffeine. I encourage everyone to try the caffeine free diet, (on approval with your doctor). It’s easy (decaf is just as good), and could cure you of your splitting headaches. So, share and bare in my comment section!

Lisa