It’s All In Your Head

July 2001 … I called my mother, and told her I was not feeling well, and would she take me to the ER. At the ER I was admitted, tested for a stroke, and after several days discharged with, “You need to see a psychiatrist.” My family was told that I was faking my symptoms, and that I was perfectly, physically OK. This was a neurologist. I had stroke-like symptoms that turned on and off like a switch, and terrible pain in my head.

I complained of head pain, and was given nothing, possibly tylenol. My left side was still terribly weak, and the vertigo was disabling. I had no reason to give to my employer of what my health condition was. I lost a good job, and for a single parent, that was life altering. I saw the psychiatrist, who immediately referred me to a different neurologist. He immediately diagnosed me with sporadic hemiplegic migraines, and put me on verapamil. My health insurance ceased. The medication made only a minimal impact. One hardly worth mentioning. I had had migraines before, even with nausea and light sensitivity. These new migraines, which now a decade later, now old migraines have changed my course in life significantly.

Triggers that I can count on are; hormonal, barometric changes, dairy, red wine, MSG, and nitrites. The first two are the ones that pack the punch, and send me away from a life that I love very much. Married, happily, mother of two, and a step-mother to one. I am a co-op mother for my son’s pre-school, and a Team Mom for the teenager’s Football team, but anxiety looms with the inability to predict my reliability. I have a very difficult time committing to anything, because I wonder, “What if a migraine strikes??” My migraines have contributed to my depression, and have made me far more of an introvert then I am naturally, or wish to be.

August 2011 … Today I ordered a medic alert bracelet. My doctor’s have made the suggestion for years, and now with multiple health issues, it really is in my best interest. Today a migraine, that is still hanging around, scared me enough to do so. This morning I felt the familiar tingling sensation in the left side of my face, I felt a sharp pain above my right eyebrow, and pressure on my right eyeball. My vision on my right side became completely blurred, and my left eye peripheral was non-existent. The corner of my mouth pulled down, and I knew I now looked like a mild stroke victim. I was unable to articulate in my own head what to do next. The aura passed, and I was left with a dull ache on the right side of my head. I rested about 20 minutes, and then drove my eldest to Football practice. I should not have driven my son, and I should not have continued driving, but I did. The ONLY symptom I had was difficulty concentrating and organizing my thoughts. I drove to my next destination, and barely made it to the parking lot. Traffic was thick, I had no way to pull over. I rolled in to the parking lot with no peripheral vision, and white spots flickering. My left side began to first ache, and then went limp. I still have some feeling in my left side when this happens but, my limbs feel weak, and terribly heavy. I carry a sleep mask with me at all times. I parked, threw on the mask, and breathed deeply. I felt disabled, and scared.

The first eight years of these migraines I spent my time in as much denial as possible. My ex-husband would show his exasperation with my headaches, and tell me, they were all in my head, and that no headache could cause those symptoms. In other words, I was faking it. My ex is one headache I was able to relieve myself from via divorce. I am now in a loving marriage, and now understand that migraine sufferer’s do enough personal berating, we don’t need any help from others.

I researched Hemiplegic Migraines, and was surprised to find out that most doctor’s really are clueless to this disease. I am here, and I am sharing, because I hope to learn how to “live” with this disease. I need help before I drive one more time when I shouldn’t and the consequences be something more difficult to live with then a migraine. If I’m alive to tell it.

Thank you for reading,

Leslie Johnson

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

View Comments (10)
  • nelag-g
    5 months ago

    Leslie, I too have hemiplegic migraine and was also told by a “top-notch” neurologist at our top medical school in Alabama to see a psychiatrist. Fortunately, my husband and I are both biologists and ignored the ignoramus and kept searching for answers. My own neurologist had more sense than the one at the med school and gave me a lot of good advice as did my orthopedic surgeon and ENT. I got a med ID bracelet that says “seizure disorder” because I found out that was easier for the EMTs to understand but my husband and sons have had to fight off a lot of medical personnel who wanted to take me to the hospital when I would go into the falling phase (my left side is always affected for about 30 minutes). If I went to the ER every time I had a migraine we’d be broke. Anyway, I always have an aura and know when to pull over and stop driving so my doctors have let me keep driving and I don’t have true “seizures”, just severe muscle spasms. But I still have to take Ativan for those so sometimes I have to call one of my sons or a friend to drive me home from wherever, so as you say, it is always a risk every day to go anywhere. I’ve had this for 6 years now; mine started due to a serious case of the flu.

  • Kristin Sandvik
    7 years ago

    I have a medic alert bracelet, but I have no idea what to have engraved on it. What should be on it?

  • Barbara Collins
    7 years ago

    Glad the ex is the ex now. He deserves to be. Hang in there!

  • Mary Hancock
    7 years ago

    Leslie, thanks for sharing your story. I have HMs to and can relate to everything you have said. Especially the statement of reliability, that is the way I feel the most disabled overall. I have been afraid to commit to and do many things cause I know that it is unfair of me to say I will do something that there is a huge possibility of my not showing up. I did volunteer for years at my son’s school, but it was with the a complete understanding that I might not even make it there for an hour. I hate the knowledge that I am runreliable to my family, friends or even simple habits of housework.

  • Ann M Dow
    7 years ago

    thank you, both for sharing here and for being bold and continuing despite not being believed by docs and family and friends…each one of us that continues in our everyday struggles gives hope to others and those who take courage from us, give us strength for the next battle…<3.

  • Marsha A Williford Vanderberry
    7 years ago

    I agree, doctors don’t know what to do when it comes to migraines, here take this pill for a week and if that don’t work take 2 daily and here are 2 more meds u can try…….Ughhhhh……Someone has to figure this out soon…..It’s All In Your Head……REALLY…..Yes the pain is, duh….

  • Marie Baker-Bright
    7 years ago

    exactly why I gave up

  • Stacey Thorson Edgar
    7 years ago

    I have the same type of migranes as you do(as well as a couple others as well) and my neuro doctor has put me on topamax and and a low dose of pamelor right now. we take it month to month on the doses to see what works and what dose not,,, I’m like you not able to be counted on but on the meds I can be much more reliable then I was without them!

  • Danita Villarreal Heersche
    7 years ago

    I have the same type of migraines. I currently have had the same migraine for 13 plus months. My Left side is left weak, heavy and numb in places. These migraines are horrible, as you know.

  • marshawilliford-vanderberry
    7 years ago

    I agree, doctors don’t know what to do when it comes to migraines, here take this pill for a week and if that don’t work take 2 daily and here are 2 more meds u can try…….Ughhhhh……Someone has to figure this out soon…..It’s All In Your Head……REALLY…..Yes the pain is, duh….

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