"Just shoot me now!"

Migraine Awareness Month Blogging Challenge #3: "Just shoot me now!"

What's your worst Migraine trigger? Can you avoid it? How do you handle it?

This is actually an ironic title, because I can't even count how many times I have begged my husband to shoot me when I have been in the midst of a migraine.  Not surprisingly, he never has. He has told me how distressing it is, though, to hear me utter those words.

My worst migraine trigger...it's actually impossible to narrow it down to one, because my triggers aren't necessarily consistent in their severity.  So I finally focused on four, which fall into two categories: environmental triggers and food additives.

Environmental triggers:  for me the two worst environmental triggers are strobing/flashing lights and overwhelming scents.  You know how fluorescent lights start to flicker just before they stop working?  That is torturous for me.  I cannot be in a room where that is happening.  Fluorescent lights in general aren't helpful, but as soon as the flickering starts, it is over.  Overwhelming scents can be cleaning products, air fresheners, and my favorite--perfumes.  Did you ever notice that department stores tend to put their fragrance counters right at the mall entrance?  I either have to enter from the parking lot, or skirt as far along the edge of the store as I can, making my own aisle through displays and holding my breath until I am safely away from the minefield of migraine inducing scents that is the fragrance department.

Food additives:  MSG and aspartame (AKA Nutrasweet) are the biggest culprits.  My family has learned to read the label of everything we buy.  Soup, yogurt, gravy, and anything fat-free or sugar free are the biggest culprits. This does not make it easy for someone trying to follow a weight loss program who is always on the go!  We have managed to keep it under control in our house, my mother's and my in-laws, but visiting or eating out is always a challenge.  Often friends discard packaging and can't tell me what is in the food they are serving me.  Waiters and waitresses give me a blank stare when I try to explain that I have food sensitivities and I need to know what type of sweetener is used in their tea or dessert.  It's usually just easier to avoid those types of foods and eat something fresh with little sauce or seasoning.  Not much fun, but better than a migraine!

Migraine Awareness Month Blogging Challenge #2

Migraine Awareness Month #2:  Tea for Two. If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? 

This is an interesting question.  I don't know for sure who I would pick.  I guess that I can't name a specific person...I would like to sit down with a family member of a person who has recently been diagnosed with chronic migraines--a family member who isn't as understanding as my family is.  I would like to be able to educate that person about what life is like for a migraineur...and to help him/her understand how different we wish life could be.  Then I would leave and let my husband speak with that migraineur's family member so that he can give him/her the perspective of a family member who has adjusted to living with a migraineur.  Perhaps my supportive husband could give that family member hints to help make that family's life a little easier.  Not that it is ever easy, but Wayne does what he can to make it bearable.

June is Migraine Awareness Month

As part of Migraine Awareness Month, there is a blogging challenge, with prompts for various blogs.  Here is prompt #1:

Migraine Awareness Month #1: Your First for the First. Share the story of your first Migraine, what it was like, if you knew what it was, what you did, how you felt. 

Looking back, I believe I had my first migraine at the age of 15.  I was in biology class, and I was taking an exam.  As I looked at the test, it appeared as if the words were being typed onto the paper as I watched.  I didn't realize at the time that I had blind spots.  Soon after, I was stricken with severe nausea, and went to the nurse.  I began vomiting violently, and my mother was called. I recall that the nurses were speaking, and I couldn't understand what they were saying.  I assumed that I had the flu, and that I was suffering from a fever, which caused me to be confused.  The pain came soon after.  My mother had to pull the car over several times on our way home so that I could get sick.

I didn't know it was a migraine.  I never told anyone about the visual disturbances or the confusion--I was afraid someone would think I was crazy.  It wasn't until at least 10 years later that I was diagnosed with migraines that I realized what had happened that day.  It is possible that there were earlier migraines, but that is the first one that I know for sure.

A Delicate Balance

It is easy to say that I refuse to allow migraines to control my life...easy to say, hard to do.  Sometimes it is a delicate balance between the pain and my medication--how bad will it get, how much pain can I stand,when should I take the medication which will knock me out.  Sometimes I can gauge it, often times I guess wrong and by the time I take my medication it is too late.

So, when I met with my neurologist this time, I spoke to him about going back on Topamax--or "Dopamax" as many of us call it.  When I was on it before, I went I had memory and processing problems.  As a sign language interpreter, the processing problems were the worst for me.  I would work with Deaf people that I had know for years, but I couldn't understand them.  I know the memory problems were hard on my family.  I would repeat myself to my husband several times.  Some days I would ask him the same question over and over again, because I didn't remember asking him.  For him, it was like living with someone with early stage Alzheimer's--only I was in my thirties.  It was frustrating for both of us.

It wasn't an easy decision to go back on the Topamax.  My doctor decided to keep me on a low dose of it, to increase my dosage of Clonazepam and decrease my Nortriptyline dosage.  Including my vitamin supplements, I am taking 8 pills before bed at night.


I have been tracking my migraines (yes, there's an app for that!) and have found that they have decreased since adding Topamax back into my regimen.  I have asked my family and coworkers to watch for memory issues, and I am happy to report that so far no one has noticed a significant problem.


It is still a delicate balance between medication and control over my life.  I hate taking so many pills, but I know that without them I wouldn't be able to function.  However, I have to monitor to ensure that my medications don't impede my ability to function, as well.

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.