Do Not Tolerate the Naysayers

I previously shared my migraine story on this forum under the title of “Feeling Validated,” about my headaches.

First, let me apologize for the typos and left out letters in that story! My brain and my fingers are not always in sync; despite a more than 20 yrs career as a journalist! I titled this about the “Naysayers,” because I have worked for some; and with some; and sought medical care from some. It’s quite frustrating to have someone tell you the pain you are experiencing is “all in your head.”

I was 4 years old the fist time I made the connection between my head hurting and feeling sick. I am now 56; and not much has changed about my symptoms. I get violently nauseated and can vomit for hours on end. I have spent countless hours lying on my bathroom floor by the toilet; too weak too care that the floor was cold and hard…I just knew I couldn’t keep making it from bathroom to bed and back again over and over. Like many migranuers; I suffer several types of pain. There is the throbbing all-over-the-head pain; that brings about the worst bouts of nauseau. Then there is the behind-both-eyes headache that then bounces back and forth between both eyes,and that I know is going to last at least 72 hours before it’s over with. Then there is the ice-pick headache that comes when I have a Cluster Headache…made even more maddening by the stuffed up nostril on that side of the head; as well an eye that simply pours water, until the whole area is rubbed raw. Because of the severity of the nausea that I experience; I often get dehydrated and need fluids.

Now to the Naysayers…in my career, I had two Editors who just flat out didn’t believe it when I had to leave work because of a headache. Back in those ancient days; the triptans had not yet come about; so treatment for pain consisted of narcotics. The drugs made me sleepy; and often times made the nausea worse. During the 40 years of my life that I have sought medical care; I have been told by GP’s, OB’s and Neurologists; that it’s impossible to have a migraine every day! Impossible! Ha. Tell that to my aching head! With the advent of Imitrex, I began to see the light of a dawn coming. I am very fortunate in that the triptans work on me. At least most of them do. Zomig and Relpax do not help me; nor does any form of nasal spray. But for the most part I have had good luck with Imitrex 100 mg tablets; or Naratriptan (Amerge) 2.5 tablets. The Imitrex shots work too; although not always. Through the years; I have also tried DHE; which worked very well for me; but you had to take it through an IV for 3 days. This required hospitalzation…just TRY telling your already skeptical boss that you have to spend 3 days in the hospital for a headache! Luckily, they did come out with an injectible form that I could use at home; but the Neurologist who first prescribed it; said current literature indicated it was not the choice of drug to use. So he stopped giving me a ‘script for it. I tried Torredol; also in an injectible form that I could use at home; but got NO relief whatsosever from that. None. Period.

With great fortune, I heard about the Carolina Headache Institute in Charlotte. It is a 5 hr drive for me; but well worth it. Walking through the front door; I immediately felt validated. There was a waiting room filled with people like me who have a headache almost every day of their lives…we all instantly bonded over our shared horror stories of disbelieving bossess; spouses and friends. We also share our different little arsenals of tried-and-true tricks for alleviating the pain to a degree. I am very lucky, I think; because I am married to a truly wonderful man who takes my head pain seriously. My first marriage, in the early 80s; collapsed in part because of my headaches. Brian simply had no patience with me when I had one; and frankly didn’t believe it to be possible to have one all the time. He grew angry and impatient with me if I stayed home from a social event because of a headache. One huge fight that came up every year during college football; was that I did NOT want to drive to Clemson and tailgate with his parent’s and friend’s. Most of them smoked; and if by luck I had started out the day without a headache; a few minutes in the company of human smokestacks took care of that bit of luck. Brian eventually found himself a woman who didn’t get headaches….although I’d take bets that she started getting them soon after marrying my husband! Seriously, to all migraine sufferers…you don’t have to take it anymore, when someone tells you it’s impossible to have a headache everyday. Chronic Migraine is now considered a very real brain disorder, in which the vessels in your head contain much elasticity; thus allowing them to swell to the degree that they are always pressing on nerve endings. For me, salvation has come in finding Dr. Kahn and a headache clinic. He is very diligent about making sure I always have my meds in order; and in a quantity that keeps me covered for most of the month. He was able to get MedCo to override the 9 Imitrex in 30 days; to 27 tablets for 30 days. I also get the Naratriptan (Amerge) in a quantity of 9 tablets. I also keep on hand 2 Alsuma injections for reallly nasty headaches. And I can still seek help in the form of a strong narcotic and fluids for headaches that don’t respond to the triptans. I had one like that just this week. Thankfully it is gone now; but it was a doozy of one!

To wrap things up; don’t be afaid anymore to challenge a balky employer about whether you are truly sick with a headache. To friends or relatives who don’t believe you; tell them too search the internet; or better yet; to visit this site; and see the hundreds of letters in which the the writer’s all describe basically the same symptoms. Lastly, of you stumble upon a physician who think hints that you are just seeking drugs; and that no one has a headache everday; report him to your local Medical Associaton as being incompetent. It’s your head and your life at stake; so TAKE CONTROL. Take your life back! Look for the nearest Headache Clinic near you; and let them work out a treatment plan desgined specifically for your needs. And to the Naysayers; you say: “Take that!”

 

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