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.

"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.