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What is really causing your splitting headache?

The Caffeine Cause

My mission with this site…

  • To bring awareness to a grossly underestimated cause of headaches: caffeine
  • To get to the bottom of why doctors don’t appear to know this
  • Most of all: To help those plagued with headaches 

I need your help…

          If you are a headache sufferer, you can help me test my caffeine-cause theory, possibly curing yourself of headaches, by participating in my caffeine-free diet, and then simply describing your results here in my comment box. Please check with your doctor first. If I can gather stories from others that this works, then my argument will be stronger and I will be able to get more attention from the medical world. 

          Because migraines are closely associated with epilepsy, I certainly wonder if this would apply to those with epilepsy as well, and I would like to hear your experiences too as it relates to elimination of caffeine from the diet. 

The experiment…

          I need headache volunteers, who have a caffeine habit to any degree, to try a caffeine-free diet for two months, and report back to me as to whether or not you are having fewer headaches, if they are less painful, shorter in duration, or require less to no drug intervention. All caffeine must go: coffee, tea, sodas and energy drinks with caffeine, chocolate , or any other product with caffeine. This includes many of the very drugs that doctors prescribe for headaches, as well as many of the over-the-counter remedies. You must clean your system of caffeine for several months before you can tell if it will work for you. 

          Considering the pain you are in with headaches, this is not a hard thing to do. However, I have met many stubborn headache sufferers who refuse to try the caffeine-free diet and would prefer to have a sickening headache. You don’t have to cut out coffee or tea. You just have to switch to decaf. Switching to decaf products, is easy to do taste-wise, but could make your head ache from withdrawal, so do it slowly and in increments. I talk about it in my story  below. Please read about my own 27-year odyssey with migraines, and then leave your comments or questions below. Feel free to write as much detail about your headache journey as you wish and be sure to include your experiences with doctors. I am especially interested in knowing how they communicate with a patient on a first visit.  

My own history of migraine headaches…

           For 27 years, my life was plagued by right-sided migraine headaches. They started when I was 22 and lasted until I was 49, when I figured out what was causing them.  In that time, 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 27-year migraine 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 them, hoping for better results. 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 so that I took 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.

          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, I as 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. 

           Through the course of my life with migraines, I have tried just about every remedy known to the neurological world.  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. 

           In those 27 years, each time I have been to a doctor about my headaches, I have been routinely questioned about my caffeine intake, 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. Quite the contrary, I have been prescribed the very drugs with caffeine, that I know now, perpetuated my headaches.  These include Fiorinal, Esgic, and Cafergot, and over-the-counter medications that contain caffeine.  I am amazed that the complete cessation of caffeine consumption is not a routine part of headache treatment practiced by every doctor in this country.  Why, indeed, do doctors prescribe medications with caffeine?  Why do drugmakers produce it without warnings. 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. 

Misconception or fraud?

           And why is this unknown to the medical world?  After I cured myself of headaches, I went to see my neurologist one  last time to tell him that I thought I had discovered what had been causing them all along. He didn’t believe me, doubting that it could be true, and questioning whether it would last. 

           Furthermore, I have never found any literature stating that all headache sufferers should cease all use of caffeine. In reading the National Headache Foundation site for instance, there is no mention of this, even though I have been published with my story in a past HeadWise magazine.  To the contrary, the site lists ‘Excedrin Migraine’ as its first over-the-counter medication.  Excedrin Migraine has caffeine.  

           I am alarmed by the ignorance of the medical field with regard to the perils of caffeine for sufferers who already have a seamingly benign caffeine habit. How can an average person like me know this, but the neurological field is oblivious to it? Is it negligence on the part of researchers and educators? Or worse—fraud? Malpractice? Consider the careers that are built on headache treatments. Consider the money that millions pay. Consider the loss of productivity and quality of life. Consider other people who might be plagued for 27 years like me.

Please write to me…

Again, please tell me your story in my comment section. If you would prefer to email me directly, my address is: lbtowers@aol.com. Many thanks, in advance, for your help to solve this mystery!

Lisa