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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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • 1lfiaoo
    3 years ago

    Thank you, Carol, for sharing your story. I was first diagnosed at age 30. Both my Dad and my younger sister had been diagnosed at a young age. It is so awful to be accused at work of sick time abuse when I literally cannot function, let alone try to function in my work environment. I work in the field of law enforcement, where stress is my partner every day. Rizotriptan (Maxalt) stops the symptoms, however, I am down for the count for several hours. I am happy to know that I am not alone in this.

  • dusthim
    3 years ago

    Thank you so much for your letter. I also dread those ‘needs prior authorization’ letters, and have ignored the last one I am so angry about them, since I have some meds available. I too am a writer; I wonder if a study has ever been done testing the incidence of migraines among members of this occupation. Not to say it occurs after reading or writing a lot, they are random with me, just a thought.
    Also, in my quest for help, I found a webbsite in India called http://www.spiritualresearchfoundation.org. One of the gurus there prescribes chanting from 5 to 50, in groups of 5, –5,10,15,20, etc. for 5 minutes, and I swear it has at least staved them off for me. It has to be 5:00 no less, to work. Tedious but helpful…

  • MBmom26
    3 years ago

    Thank you Carol. Your story inspires me to look into a headache clinic. I have been seeing a neurologist and have been getting Botox for the past year. I don’t think it is enough. As I sit here again this morning with a headache, I am ready to try something different. So tired of having headaches. Also tired of people not understanding. Especially the medical community. Hope my pills kick in soon as it’s a busy work day for me.
    Julia

  • C.Zelaya
    3 years ago

    I can empathize with not understanding how people in the medical field can not understand. I am the Patient Advocate at our local VA – and I am a migraineur. The chief of my department is a registered nurse and yet he still gives me a hard time when I have to use my FMLA for the (frequent) migraine attacks. He’s even challenged the validity of my having been discharged by the USAF for migraine disease, and he’s former military himself. Consequently I am yet again on the active hunt for a position that will move me from this department.

  • Sean
    4 years ago

    Thank you and finally someone else who only found relief after going to a headache specialist as well as using the triptans which are what have helped me the most-rizatriptan orally melting tablets. So, moral of the story is, don’t just accept Drs. telling you it’s all in your head-pun intended-and get yourself to a good headache specialist because that’s what you need, I had to drive 230 miles RT to find mine but it was well worth the trip so don’t let distance stop you. I made a note of the Naratriptan you mentioned and will look into that one as well.Again, Thank you for sharing your story !

  • pezsara
    4 years ago

    Carol,

    Thank you so much for sharing your story. I also have headaches with neck ache almost daily. I will deinitely look into seeing Dr Kahn. I live in Kannapolis NC, only an hpur or so from him.

  • Niki
    4 years ago

    Finding a good neurologist and getting proper treatment for migraines is so important. When I started having periodic chronic migraines and the amitryptiline that my PCP gave me made me feel worse, he immediately referred me to a neurologist who is truly amazing. The best part is that he listens and is truly caring and understanding. I have a friend who’s doctor keeps telling her it’s stress and doesn’t give her any special medication for her migraines and won’t refer her to a specialist. I wish I could help her.

  • zippy36
    5 years ago

    Occasionally I too ended up at the emergency room. I am 51 years old. It has only been in the last 10 years that the emergency room staff treated me like a drug seeker. I think the worst time was when my son took me. He was in his early 20’s and had the “hippie” look at that time. I was grilled and they made me wait. I would have liked something that would have made me sleep but explained to them that I would take Torodol. I have since connected with a female doctor that takes my migraines seriously. I love her. It is so important. My main problem is the nausea. I wasn’t able to keep my medicine down. I now have dissolvable Zofran and have not had to go back to the ER in a very long time. Also, my attendance at work has improved. I am happy that you have found your doctor. I know that it means so much!! Hope things improve for you

  • fbg
    5 years ago

    I can relate. I’ve been having migraines since first grade, all they could do was let me put my head on my desk because the rules said fever or throwing up were the only ways to go home. Pain killers don’t work… at the ER they give me Ativan to calm me and help me sleep. But I’d rather be home with my pets, so I take Benadryl and go to bed. But in all that, I know who my real friends are, and my dog cuddles up and keeps an eye on me, he wont leave my side for anything until I wake up. I know to some people my life may seem rough, but to me, I think its pretty all-right. (I would like the pain to go away, but if it never does, it wont break me.)

  • dusthim
    3 years ago

    My opinion – you need some prescription medicine. You don’t have to live with that kind of pain.

  • Nancy Harris Bonk moderator
    6 years ago

    Thank you Carol, for sharing your very personal story. Validation is so important when we have migraine, there is such stigma attached to it.
    I too, am affected by caffeine and I think it’s one of those things people really don’t want to deal with. I fiercely miss my one cup of coffee in the morning, and occasionally will have a cup, but end up paying for it when I do. Most of the migraine specialists I’ve spoken with have strongly suggested people with migraine stay away from caffeine.
    Continued good luck
    Nancy

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