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Sharing My Headache Story with NHF – Sandi

I am 62-years old and have had chronic migraine since at least 7-years old, although they could have begun before that time. 62 years ago no one paid attention to a child with headaches except to give me aspirin, Excedrin, etc. I lived on these pills for most of my childhood, adolescent, & early adult life, and likely adding to the headache problem, which changed the migraine to transformed, and then to rebound headaches. On a scale of 1-10, I would describe them as 100. A good week would be only two migraines, but many times, there are many more. I learned to tough it out, and somehow managed getting through high school, getting married, and having three children.

In my late 20’s I returned to school, and eventually received my Master’s Degree in Education Counseling Psychology and became a Marriage & Family Counseling. The headaches were horrible during these years, as I was doing a lot of reading and writing with chronic neck issues. My doctor’s began to listen at this time, or I became more assertive, and they began to prescribe me many, many different types of medications: Opiods, benzodiazepines, beta blockers, anti seizure medications, etc. All made my headaches worse, many caused rebound headaches, and they all made me feel sicker than without them. None worked. The doctors would roll their eyes at me and let me know that there was something wrong with me that their wonderful magic pills did not work for me.

I began working in hospitals in alcohol and drug rehabilitation, as well as in my own private practice. I taught at the University and did Employee Assistance Program work for large local and national companies. I learned how medications worked, as well as the effect of certain foods, stress, environmental pollutants, etc on migraine. I became very diligent in staying away from migraine triggers, but the chronic migraine condition persisted. I had learned to deal with pain, so I kept pushing through it, and became very successful in spite of the immense pain.

In 1995, Imitrex came on the market in the US, and I finally found something that worked for me. I finally had control over the migraine pain. It was a God send. However, in 1998, I was involved in a car accident, and the migraine frequency increased to the point where I sought additional help. I saw a new neurologist who did an X-ray on my neck and prescribed mechanical neck stretching, which I did. This pushed me over the edge from daily to twice daily chronic migraine, which forced me to give up my very successful private practice, quit teaching, and give up my Employee Assistance consulting work, and ultimately go on Disability.

It was then that I began to pursue what was causing the migraines. I found a wonderful practicing osteopath who is also my medical doctor, and together we found out that I have Chiari Malformation Type I, (herniated brain stem), and that there was a functional reason for the migraine. I also had developed both Spondylosis and Stenosis of the cervical spine. Looking back, my neck should never have been mechanically stretched with these conditions. This doctor also supported me in increasing the amount of Imitrex I could receive each month, since the insurance companies try very hard to limit it because of the expense. However, the only medication that works for me and has not caused me any side effects is the Imitrex. I can only take a low dosage of 25 mg, at a time, but I use it daily in the small dosage and have for the past ten years, and I am now very successful in leading a functional life within the limits that I have set. The total amount of Imitrex I take per month is within the manufacturers guidelines, even though I take it every day, but in a small dosage.

I also have followed my doctor’s suggestions which are the migraine protocol of staying away from migraine triggers, exercise in the form of Yoga, Pilates, Low Impact Aerobics, meditation, and only having friends and family who are understanding, compassionate, and loving of my limitations. I also receive regular Osteopathic adjustments from my wonderful Osteopath physician.

About 2 years ago, my insurance pharmaceutical mail order plan began to put up many obstacles to my continued use of the only medication that has worked for me and kept me functional. They discounted my doctor’s ability to prescribe the medication since he was not a headache specialist, nor a neurologist. So, I began my search for finding a neurologist who could think outside of the box of traditional migraine treatment, and be supportive of the medication that has worked for me for the past 10 years.

I found one who at a headache clinic in Ojai, Ca. They did a three hour assessment; so unusual for a neurologist. I was seen by the Neurologist, a Marriage & Family counselor to assess my emotional, mental and social worlds as well as by a Nurse Practitioner.

The result was that I was already doing everything that they would recommend for me to do. I had developed little tricks over the years by using some topical homeopathic treatments which they knew of; I was impressed with them. I have used the topical treatments in conjunction with the Imitrex. This neurologist thinks outside of the traditional migraine treatment box, and fully supports the program I have developed over the years, and because he is the expert, the insurance company has capitulated, and now fills my prescriptions per the doctor’s orders.

My story has been a long and very painful road and I am glad that I did not surrender to the many doctors who “knew better than me” about my body and what worked and did not work for me. I am sure if I had, I would not have had the functional life I have had, and I would have become a drug addict early in life–Opiods, benzodiazepine, etc. I have learned to listen to my body, eat for my body, and exercise for my body, and stay away from migraine triggers, and anything that stresses my neck. I have found supportive, caring, listening professionals who have my best interest at heart. I have found loving and supportive friends, and a very loving, compassionate and caring husband. I feel extremely successful, content, and happy with my life, and I have control over the migraine pain.

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