"I took an Excedrin and it went away."

I am soooooooooooo tired of people who say that they had a migraine, but that taking an Excedrin, Tylenol, Advil, whatever, made it go away.  Have these people ever really had a migraine?  Have they laid on the bathroom floor, their head pressed against the cool tiles, lights off and waiting for the next round of dry heaves because there is nothing left in their stomach to vomit up?  Have they begged their spouse to shoot them in the head because to suffer one more second in pain is just too much to bear?

People who have never really experienced a migraine cannot possibly imagine what an actual migraine is like.  If I catch one early enough and take my naratriptan, I may be able to remain at work...if it isn't too noisy and there aren't fluorescent lighting fixtures or other bright lights.  However, the medication makes me extremely tired, and often sheer exhaustion overtakes me.  I have had many people tell me "I have a migraine, but I am working through it," as if accusing me of malingering when I have to leave because of a migraine.  Believe me, if I could, I would love to save up my sick days in case I ever get the flu, or need surgery, or become injured.

Television doesn't help.  The commercials that show people having migraines, taking Imitrex and then participating in a kid's birthday party make migraines seem trivial and easily cured.  For me taking an abortive when I have a full blown migraine means the difference between crawling and stumbling to the bathroom to puke my brains out.  I'm certainly not even thinking about a party.

On a positive note, I think my caffeine fast has helped.  I only had three migraines in February...one because I forgot to take my preventatives.

To caffeinate or not to caffeinate

I am a caffeine junky.  Not coffee...although I would carry a jumbo travel mug of java with me when I worked at a summer camp...my drink of choice is tea, followed closely by Coca-Cola.  About 10 years ago my husband and I gave up soda in favor of healthier beverages.  Because Nutrasweet (aka aspartame) is a migraine trigger for me, diet soda is not an option.

When I first started seeing my neurologist, my husband asked of I should cutback on caffeine.  The doctor asked me if it helps or hurts, when I responded that it helps (when I feel a migraine coming on, I grab a Coke as soon as possible) he told me to consume as much as I want.

Fast forward 6 years...at my last neuro appointment I came with my travel mug filled with tea.  I was asking the doctor about possibly going off of my meds, and he gestured toward my mug and asked how much I drink daily.  I explained that I drink about two large hot teas daily...often supplemented by iced tea in the evening.  My doctor determined that some of my migraines may be triggered by daily caffeine withdrawal...so he suggested weaning off of caffeine.

Like any addict, I was nervous, defensive and generally unwillingly to even consider quitting...but if it could lessen my migraines, I supposed it was worth a try.

I left the doctor's office armed with prescriptions intended to ease my withdrawal symptoms. I decided to start weaning off the day after Thanksgiving.  It was rough; even with the medications...but I gradually cut back and was caffeine-free by Christmas.  As tough as it.was, it wasn't nearly as bad Now February is almost over, I have only had 2 migraines this month.

Let's hope saying it doesn't jinx it!

Songs for the Migraineur

I’ve Been Battling a Migraine (Tune: I’ve Been Working on the Railroad)

I’ve been battling a migraine, almost everyday!

I’ve been battling a migraine, why won’t it go away?

It hit me again this morning, I can’t get outta bed!

Came so quickly without warning…Oh! My throbbing head!

Migraine won’t you go, migraine won’t you go,

Migraine won’t you go away-ay-ay?

Migraine won’t you go, migraine won’t you go,

Migraine won’t you go away?

Hey, Doctor! (Tune: Oops I did it again!)

Looks like I’m here again

Lying in the ER, fighting the pain

Hey, Doctor!

You might think it’s a ploy

But it doesn't mean that I'm seeking drugs!

Oh! I’ve got such a migraine

I just don’t know what to do!

Hey, Doctor, Doctor!

Oops!...I did it again...

I puked on your shoe, you didn’t listen!

Hey, doctor, doctor

What!?! You think I’m a fake

That I just want meds?

I’m in serious pain!

 

Sunglasses Inside (Tune: Sunglasses at Night)

I wear my sunglasses inside

so I can

so I can

Deal with all of the fluorescent lights.

And I wear my sunglasses inside

so I can

so I can

Control the throbbing of my head.

I’ve got a migraine you see,

it’s got a hold on me.

It takes control of me! - I turn to you and say:

Switch off the light and pull down the shades

oh yeah.

I’ll close my eyes tight ‘till you pull down the shades

oh yeah

You better believe it!

Understand my plight and pull down the shades

oh yeah.

I wear my sunglasses inside…

To Function or Not to Function...that is the Question!

There was no question that I wasn't functioning with migraines before I sought treatment.  A migraine would leave me unable to function for days...between the auras, which prevented me from driving, to the vomiting, photosensitivity, audio sensitivity,aphasia, balance issues, debilitating pain and exhaustion, I was often incapacitated for 72 hours or more...and my recovery was slow.  During the height of the my migraines I have been known to beg my husband, or once a colleague when I was hit with one during a conference, to shoot me in the head, just to make the pain go away.  It still happens, but not as often as it had.

After the initial "breaking of the cycle" my neurologist prescribed Topamax, an anti-convulsant drug which helps control migraines.  There is a reason why migraineurs call the drug "Dopamax."  I was working as a sign language interpreter and found that I could not process language in order to translate.  On a personal level, my family had to deal with me repeating things I had told them moments before, and I was forgetting to do things.  My family and I could have lived with the repetitions and forgetfulness, but I had to be able to work....so we had to find another option.

Apparently the options are limited for asthmatic migraineurs.  Certain medications used to treat migraines can interfere with inhalers.  I was finally prescribed Nortriptyline and Clonazepam.  Interestingly, this combo resulted in a loss of the auras.  In some aspects this is a positive, unfortunately it also means I lose my warning mechanism before the pain hits.  And occasionally I have had an aura without the migraine.  I have weeks that I  am migraine free, weeks where I have what I call "minigraines," or migraines that I can function through, with the aid of my abortive medications, and weeks that I have several disabling migraines.  Some days I function better than others, but over all I am functioning better than I was.

So...why a blog?

Why not?  I like to write and if my experience can benefit anyone else, so much the better.  Migraines are getting more press with famous people like the Vikings Percy Harvin experiencing them, but there are millions of people who suffer daily.  There are a lot of misconceptions about migraines, as well, and people don't always understand how debilitating they can be.

I guess this first blog will serve as the background, so here goes:

I have been receiving treatment from a neurologist for my migraines for a little over six years.  My experience with migraines begins well before that, however.  The first episode that I can recall clearly was in high school, but in speaking with my family I believe that I may have had a migraine as early as fourth grade, but we didn't know that was what was happening at the time.

I am one of the migraineurs who experience migraine with aura (sometimes called classic migraines).  For a good description of migraine auras, click here

My aura is comprised of visual disturbances...first I experience distorted depth perception, followed by blind spots and finally a vibrating, waviness in my visual field.  The excruciating pain will strike within 15-30 minutes after these experiences.  This is accompanied by hypersensitivity to light, sound and scents, and nausea.

For a long time, I didn't know that I was experiencing migraines.  I remember sitting in my high school biology class, taking an exam.  As I read the exam paper, the words seemed to appear before my eyes, as if someone was typing them while I sat there.  I didn't know that I was experiencing an aura and that the blind spots were blocking the words...I thought that I was going crazy.  I began to feel nauseous, so I went to the nurse.  I did vomit, violently, and they sent me home.  The weirdest thing to me at the time was that while waiting for my mother to arrive I would hear conversations between people in the nurse's office, but I couldn't understand what the words meant.  Because I was so physically ill, I later chalked it up to a high fever causing delirium.  I never told anyone about the visual disturbances--I thought that people would think I was hallucinating and mentally ill.

Over the years, I learned that the visual problems meant that I would soon become sick, but I still thought that it was related to the flu or a fever.  It wasn't until about ten years later that I learned to associate the word "migraine" with my experiences.  I was volunteering with a group of Girl Scouts, and during lunch one of the mothers began explaining the symptoms of her migraines--which were the exact symptoms of the mysterious "illness" that I would experience a few times a year.  I was so relieved; I wasn't crazy!

The next time I visited my doctor I talked to her about my headaches and the accompanying symptoms.  She diagnosed me with migraines and prescribed me an abortive medication to take whenever I felt the symptoms coming on.  This worked well for several years, but gradually the migraines were coming with increasing frequency...from a few times a year to monthly.

My husband was overseas with the Navy when I experienced a particularly bad migraine.  I was working in a federal building, and all I remember is standing outside of a US Senator's office, on the phone with my mother in tears.  It was my third migraine in less than a month and I was terrified.  I knew I couldn't drive, so my mother had to come and pick me up.  The migraine lasted over two days.  Afterward, the entire left side of my head was completely numb.  I felt like a cyborg, or like the poster of Arnold Schwarzenegger as the Terminator with half of his face ripped off. Naturally, that was scary, so my mother rushed me off to the doctor's, while my husband overseas had no idea what was going on at home.

My doctor assured me that I wasn't having a stroke, but because the migraines were occurring more frequently, she referred me to a neurologist.  My husband was home for my first appointment, and we went to the appointment together.  Neither of us knew the turn that our lives were to take...that I was to be diagnosed with a disabling condition.

"Transformed" or chronic migraine.  Migraines that occur with increasing frequency...check.  Migraines that often recur after self-medication...check.  Often accompanied by anxiety and depression...check.  The doctor prescribed a cycle of steroids and abortives to break the cycle and determined that if we couldn't break the cycle with the medications, I might have to spend time in the hospital with IV meds.  I think that was the first time my husband realized how sick I was.  Suddenly I felt like an invalid, broken and defective, and I just wanted to get "fixed."  It wasn't to be...the doctor explained that there is no quick fix and that we would be working together for quite a while.  I consider us my "treatment team,"  my husband, the doctor and I--all working to keep me functional.