I am a 62, female, with chronic, intractable migraines starting at age of 19. My first headache lasted a year and a six months without let up, and was shooting pains like fireworks throbbing from the back of my neck up the back of my head all day and all night. Finally those went away and I started more traditional types of migraines that came at 2-3 month intervals, but were really nasty when they arrived. Over time the distance between the migraines got much shorter – and when I say over time, I mean over about 2-3 years – so I was having them every 4-6 weeks and that is where they stayed for about 5-8 years. After that they started coming every 2-3 weeks until I hit 50. The frequency increased and severity increased, and I began to have visual auras – first the jagged black and white edged patterns that would occlude my visual field. This stopped for a while. Three years later, flashing lights that looked like little comets with tails going across my eyes would signal an acute attack. There were hundreds of them moving diagonally across my visual field. Sometimes it would look like one long line similar to the heart monitor put on patients in the hospital to track the patient’s heartbeat, only this was only one white line with a single blip. I thought I about to have for a stroke. After my mother died when I was 54, the migraines came closer together – about twice a week. After 6 months or so it ramped up to 4-5 times a week. This is where they have remained. I have been to countless neurologists, headache specialists. My diagnosis has changed with every neurologist and migraine specialist I have seen. Finally, after taking more medications that did not work more than once and having too many doctors tell me it I was either “crazy”, or got to the end of their rope because they had no solutions for me, I finally asked a referral to a pain clinic. My first appointment was with the head pain specialist, also a neurologist who actually listened to me, and has treated my symptoms as a chronic pain problem for the last 10 years. Recently I have begun treatment with another, very well-known headache specialist connected with a University Hospital near me. How he is going to work with my HMO I don’t know, but this is all a process, albeit a long one.
I don’t have much of a life now. I live in the dark, with not a lot of sound, and do a lot of sleeping, and pay a lot of money to the pharmaceutical companies. I cannot work because of the frequency of my migraines and it has been like this since 2003. I did get Federal Disability in November of 2010, which helped stop the complete depletion of my savings to barely managing with a fixed income. I held off on the disability for as long as I could, not wanting to give in to the migraines which I saw as the beast that lived in my head. There were many days when I was hoping someone would make advances on head transplants, but I wasn’t holding my breath. I don’t make social engagements because I almost always have to cancel them. I moved last year, twice, from LA to northern CA, closer to the psychiatrist who has treated me for co-morbid (lovely word) conditions that I have in addition to the migraine disease. It is also nearer my pain Doctor, whom I only see from time to time now since I had to change my insurance to an HMO.
That is the bones of it. There is always more to tell; I have 44 years (almost 45) of experience with all of this, mostly without too much support, except people asking me “Have you tried acupuncture”? I know they mean well, and want to help, but even the acupuncturist I went to was very doubtful he could work with me, and that was 10 years ago. I just say yes, and move on. Now it is “Have you tried a gluten-free diet” which I did 20 years ago for 2 years and it was the most painful 2 years I remember. What haven’t I done?
Through all this I have had a successful interior design business in New York City, employing 10 people. I participated in securing licensing by the State of New York for Interior Designers, and passed the NCIDQ exam to certify Interior Designers. When I lost my business due to the real estate recession in 1991, I took my love of horses to a new level, learned to ride well enough to compete up and down the east coast in horse trials at the lower levels. I became a certified instructor in the MA, and took a program that certified me as a canine and equine Myotherapist to help release trigger points and stretch sport horses so their muscles would remain soft and supple to jump and do complicated flat work for the demanding moves of Dressage. I worked with vets on horses with lameness issues, arthritic dogs who would jump up and down like puppies after a treatment. I could not cure the arthritis, but I could make them feel better.
I also went back to school for my MFA in textiles and transferred to fashion design, but stopped with one half of the program finished. I had worked professionally as a Design since I was 22, and one discipline of design is much the same as another. Once one learns the skills for each field, the rest is simply repetition, and the University program I was in was not set up for me to do what I wanted to do, which was explore one topic for my thesis and not have it broken up into little projects. So I left and tried to work on my own, but the migraine disease really caught up with my type A personality bringing my life to a standstill.
I am an artist, an artisan, a maker of things all my life. I draw, knit, crochet, paint, sew. I make things. I am always in my head making something from something – clay, fiber, fabric, wood, paint, fiber, cloth, whatever. My only hurdle now is feeling well enough to do the things I want to do.
Migraine disease is a horrible disease. Just identifying it as a disease, and not some random condition has been an ordeal. It has taken me at least a year to accept that fact. It has no cure, at least not yet, and probably not within my lifetime. It genetically inherited, recently thought to be passed through the matrilineal line. With no medical history that is just a fact I cannot apply to anything. More women by a 4 to 1 ratio have migraines. There are five different types of migraines recognized by the International Classification of Headaches II (ICHDII) with another 9 subheadings under these. Go to http://www.migraine.com and look under “Basics” for the complete list. There are another 8 types still used by many physicians that are not specifically recognized by the ICHDII.
All migraineurs are different. Their symptoms, triggers, experiences and treatments never match and some have other illnesses that make their migraines much more challenging.
I write to let other people know about my experiences. With 44 years +, and 72 different medications tried for treatment – some successful only once, some never, and some that still work on occasion – I have one of the longest running shows on Broadway.
I am interested to hear your comments. We are all different, but we are all the same, and we can help each other in ways no one else can.
I wish you love, kindness and strength on your journey.