My Invisible Disabilities: Part 1

Image by makelessnoise via Flickr

I've talked a lot about my son's disabilities over the past 4+ years of blogging, but rarely mention my own. I think it's because I like to pretend they aren't disabling.

Ha!

Being a migraneur (one who suffers from migraine headaches) is an ongoing battle. Starting in middle school, I've been plagued with migraine headaches nearly every week of my life, some weeks even more. The only time I recall being migraine-free was the first 2 trimesters of my first pregnancy.

I found out about Imitrex when it first came on the market in the 90s. I'd had a migraine for 3 days, and ended up sitting at the doctor in a heap of tears and pain. He told me to hang tight, turned off the lights in the exam room, and stepped out into the hallway where he summoned a nurse, and told her to get an Imitrex injection immediately.

For the first time in my life, a medication got rid of my headache AND the other migraine side effects (nausea, light sensitivity, sound sensitivity, speech difficulties, motor impairment). It was amazing. It also felt like someone had place my heart in a vice grip for about 15 minutes.

Turns out you can't use Imitrex too often because of the side effects. I had one doctor tell me I'd end up having a heart attack if I used Imitrex as often as I needed it. So, I embarked on a journey to prevent the migraines.

After trying a whole host of pharmaceutical approaches to preventing migraines, I gave up. Nothing was working, the side effects were sometimes worse than the pain. I even tried acupuncture, which provided relief for a few months, then they were back.

So, I continue to get migraine headaches, usually a few times each week. If I catch them early, I can keep them at bay with ice packs and OTC meds. If not, I turn to the Imitrex or Frova. If they're really off-the-hook, I have to add pain meds to the mix.

But, no one can tell by looking at me that I suffer from this regularly disabling condition. I don't have a forehead tattoo alerting them, and I don't wear a t-shirt that says, "I have migraines, what's your excuse?" (Although, perhaps I should.)

Fortunately, I no longer work outside the home. Unfortunately, I do need to parent and homeschool my children. The great thing about homeschooling, for our family, has been the flexibility to accommodate our special needs without the usual battles of advocacy. I no longer have to explain to employers that I don't have the kind of headaches where you pop a couple of Advil, and go about your day.

Being a migraneur is one of the disabilities I live with. The other is Fibromyalgia. That one has been even harder for me to accept. I'll save it for another post.

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Comments

[Cynthia - GoodEnoughWitch.com]

Hey I'm right there with you on the "better living through medication" angle. Never thought of depression as an invisible disability,but you're right...and I'm grooving on the.

For your bold honesty (and light headed moments) I award you:

A Sparky Blogging Award

http://thegoodenoughwitch.typepad.com/cyn/2008/11/ive-got-me-some-spark.html

We all need a little spark.

[Heather]

My husband suffers from severe migraines as well. We are blessed that he works from home and can usually work when he needs to. Also found that red 40 (the dye) and blue 1, meat with hormones, as well as flashy lights and msg trigger them. Interesting things is our oldest has a seizure disorder that starts just like my husbands migraines which has led us to believe that they are related.

[Maija Haavisto]

Have you tried the natural preventives already? Magnesium, feverfew, Q10 and riboflavin (25 mg or more) have all been shown to work in studies. My friend who was quite disabled by migraines tried several pharmaceutical preventives, but now he's had good results with riboflavin and magnesium.

I used to have migraines because of my CFS/ME, but now that I take magnesium, Q10 an low dose naltrexone and avoid dairy as much as possible, they are quite rare.

It sucks to live with an invisible disability, especially if even the government does not recognize it (no matter that they are breaking the law by doing that). I've been on a sick leave for over two years and haven't got a penny, don't have the energy to sue them and might lose anyway.

[MotherofBun]

I feel ya. I get migraines quite often too. Probably about once a week. Every few years, I'll have about 9-12 months where they will be miserable and more like 15-25 a month.

Like you, I highly doubt there's a way I could do a 9-5 corporate gig and not get fired after a few months. Because as you know, when you get one, its disabling. It is like walking a tightrope somedays -- trying to avoid all of the triggers (like someone smelling like smoke standing next to me in a grocery will set them off.)

Am assuming you've heard all about the most recent migraine med out there. Treximet. Am wondering what you think of that one...

[Eile]

I have migraines too...not nearly as bad as you are currently suffering but most of my childhood was spent explaining to school nurses that, no I wasn't faking and yes, an eight year old does really know what migraines are. Good luck!

[Zip n Tizzy]

Not having experienced them myself, I have no words of advice, just hopes for you that something will be found to cure them or at least provide relief sooner than later.