Feeling validated about my headaches
I experience my first known migraine at age 4. I was playing on a swing; when suddenly, all of the leaves on the trees swirled together in a myriad of colors, and I felt dizzy. I stopped swinging and abrubtly threw up. I was suddenly aware of the shrieks and cries of the other children playing and I thought I would lose my mind...my ears could not take the noise. I attended a private kindergarten operated by my great aunts. When I told them that I felt sick and that my head hurt; they exchanged sympathetic glances and said: "Oh, no. She is going to have them too."
Of course as a small child I did not know what they meant. BUT, they took me home and told my mother...she gave me Paragoric and a Tigan suppository for nausea. I came to learn that my paternal grandmother suffered greatly from migraines; as did my great aunts and my father and most of my paternal relatives. In time, both of my sisters and my brother developed migraines. Until I was in high school; my headaches were treated with either Bayer aspirin and a suppository for naseau; or Paragoric and a suppository. I also found that cold cloths or an ice-pack helped. They still help. So does a hot bath with hot water running down my neck and shoulders.
My freshman year in college I was given my first prescription for plain Fiorinal. This worked fine for awhile; but then one Spring Break at the beach; I developed such an horrific headache that my friends took me to a local ER and I was given my first shot of Demoral for pain. Unfortunately, the Demoral made it worse. Over the next 10 yrs or so; I tried many different things. I tried Elavil and DHE (which worked well; but at the time you had to be admitted to the hospital for a 3 day course of treatment.) I could not do that and hold down my job as a newspaper reporter. Finally I was given Fiorinal with codeine. This also worked well; but had such highly addictive properties; that my doctor only prescribed it sparingly. Unfortunately, my headaches were not "sparingly." I had one almost every day.
Everything triggers mine: alcohol, the weather, perfumes or funky smells, bright sunlight, strobe lights (Disco era) flashing lights..heat, humidity, almost a million things. I am 56 yrs old now; and during the years I have had ER nurses and doctors accuse me of being a drug addict seeking drugs; doctors telling me "no one can possibly have a headache everyday!," and employer's challenging my sick leave time for headaches. I have missed parties, concerts and all manner of activities because of a headache.
FINALLY, last year, I discovered the Carolina Institute for Headaches in Chapel Hill, NC. It is run by Dr. Kevin Kahn. It's a 5 hr drive away from me; but WELL worth the trip! He put together a prevention program; as well a pain treatment/mangement program. He was able to get my insurance company to pay for 27 Imitrex tablets per month instead of the 9 they normally would only pay for. I take Lyrica at night to help me sleep and to help with restless legs (which is common in chronic migraine sufferers). It works. I have on hand at all times, Imitrex as well as Naratriptan...a stronger formulation than Imitrex for truly horrible headaches. I am allowed to visit my family doctor or an Urgent Care or ER for a shot of Morphine and phenergen if the other meds don't break the headache. I keep a headache diary and note the times and severity and the time I seek outside help. I see Dr. Kahn every 3 months; and my insurance pays for it. I only pay my co-pay of $ 30. He sends my prescriptions electronically to my pharmacy in Columia, SC; so that when I get home they are ready and waiting for me. He is very prompt about refills and calling the insurance company if it feels compelled to send out the dreaded "needs prior authorization note." Dr. Kahn's staff takes care of that immediately! I have nothing but positive things to say about this headache clinic. I have my life back. Because he makes sure I have enough Imitrex or Naratriptan on hand; as well as phenergen suppositories to keep at home; I no longer live in fear of being caught out without any meds. He also is very generous about giving me free samples each visit.
Just know I am not alone in the world of daily migraines is a validation worth a million bucks to me. I know that I am not crazy, not a malingerer or hypochondriac or drug addict...I am a woman who has a very real, genentic brain disorder that is vascular in origin. I know my triggers and do my best to avoid them. I don't suppose there will ever be a cure for vascular headaches; but I do know there is help now. And it does not involve the use of narcotics. Narcotics on a regular basis can actually CAUSE headaches. One thing Dr. Kahn STRONGLY advises against is the use of ANY caffeine! No over the counter migraine meds should be used! Just the triptans, which actually SHRINK the swollen vessels that are pressing on nerve endings and causing pain. I also sleep with 2 % oxygen at night. This has totally eliminated my cluster headaches and my early morning wake-up with headaches. I am not headache free. But I am FEAR free...and that goes along way toward making life more tolerable. I STRONGLY urge chronic migraine sufferers to locate the nearest headache clinic or institute near them. If you have to drive a bit to get there; I promise you it is worth it! And in Chapel Hill, since the clinic is part of the Medical University; there is a Holiday Inn Express about 8 miles from the clinic that offers a medical rate if you tell them when you make your reservation that you are a patient at UNC's School of Medicine. The room rate I pay so far, is $80 a night for a room that is normally $130 a night. Since discovering the clinic; and Dr. Kahn, I feel validated about my headaches; and I have learned that I do not have to FEAR them anymore. It's a liberating feeling; let me assure you. I hope what info I have shared is helpful to at least one person. Thanks, Carol
Have you checked out the new Community Hub yet?