Invisible Chronic Illness Awareness: Migraine

September 13-19 WAS National Invisible Chronic Illness Awareness Week. So I'm late. Real late. Shoot me. I learned about it on Corey and Social Worker 24/7's blogs quite a while back. I was inspired by them to write my own post about MIGRAINES. Which I did, saved as a draft, then promptly forgot about it.....so here goes:
The illness I want to talk about is: Migraine

I was diagnosed with it in: in my early forties after several months of several migraines per month.  I'm 49. I have a great neurologist from Ireland and I adore him for doing the full work up and finding me pain relief.  I am most grateful that he explained why my triggers are not always triggers.  He gave me a visual example of  how physical, environmental, chemical and hormonal changes all come together in a perfect storm to acheive the migraine.  How our triggers are sometimes innocuous because of the many factors that must come together, and if one element of the equation is missing you might not even get a headache. It was so liberating to understand why sometimes I'd be dying with a migraine on days 2-3 of my period  and other times, nothing...or when I was convinved that certain foods like bacon or wine or cheese would set me off , and then they wouldn't. I had thought I was going crazy. I still may be going crazy, but not about my migraine triggers. 

I also love my neurologist because when I asked him about a few sentences in my MRI report describing a dozen or so focal lateralizations he said in his Irish brogue,"Oh those. Oh. Nothing too nasty to worry about."  More comforting words were never spoken.

But I've struggled with it since: Early Thirties- but they were very sporadic and because of the nausea and vomiting I thought I was just dying of the 12 hour flu - or just dying. Really.  That bad. I didn't realize you could have vomiting with a migraine. No clue. Then I was working at a high school subbing in a health class and they had this really amazing health library series with a concise book on a specific illness or disease or addiction or drug for the kids to do research...so I skimmed  the book on Migraines and brought it home.  It was an amazing eye opener for me. I could then talk about it with my Dr. who sent me to a neurologist who sent me for a MRI.....

Most people assume: That migraines are just headaches for wimps or an exaggeration or a dramtic cop-out to dealing with life. As in: I can't (vaccuum, get off the couch, go to the concert tonight, etc.) I have a migraine....

The medications I take: I take Zomig inhaler as an abortive (stops an existing migraine if I take it at the first sign). If the migraine has already happened - Zomig doesn't work. This is a problem as I often wake up at 4 or 5 o'clock in the morning because of the intense pain of the migraine that has been brewing in my sleep...

I keep an Zomig inhaler on my bedside table in arm's reach- cause if I wake with a migraine, I can't even lift my head off the pillow without feeling like I'm gonna die.

I do get a signal or warning that I'm getting a migraine.  I feel silly saying "aura".  I get nauseous and this strange wiggly vision thing where everything is wavey and jumpy (sort of like the heat off a highway distorts the air on a hot summer's day).

If I have a hint a migraine is coming on in the daytime I have taken Advil Migraine or Excedrin Migraine with a cofffe or cola chaser. Advil Migraine is a gel cap and seems to work better than Excedrin. I have also taken Ibuprophen with a Tylenol chaser if I don't have access to the migraine medicine. I've also just tried to sleep it off by taking a nap. The Other Mother will remind me to take something if I am being stupid and trying to just plow ahead with my day.

If the migraine is full blown  it is too late to take my Zomig, then sleep and time are the only things that will knock it out.

I have Relpax pills which I don't like to take...the nausea of my migraines quickly turns to vomiting and then I'm not sure if the pill is in my bloodstream or not.  Then I worry if I should try and take another dose, because it will probably start me puking again...or whether I'll die from taking too much scary migraine medicine?  Way too much to think about with a piercing pain and vomiting...so I stick to my Zomig.

I have Compazine if the nausea is awful but I'm afraid to take it with my migraine medicine so I usually don't.

I do not take a preventative.

Regarding other and/or alternative treatments: I read about, but did not try,  alternative therapies. I do notice that sleep (lack of sleep) can be a problem if you add in the other triggers.

I do modify my diet to avoid foods that I have eaten at the time of migraines in the past...but it stinks because these are foods I really, really like and I don't always get a migraine with them. Enough times I have eaten these suspicious foods and felt like dying after that make me avoid: bacon, cured meats like salami, smoked cheesed, smoked meats, MSG, wine, and foreign processed foods that contain a long list of preservatives or ingredients I am not familiar with. 

I flat out refuse to even consider the possibility that chocolate could be a trigger.  I'm NOT giving up chocolate. Nope. No way.

We also sadly noticed that most every time we'd go away for the weekend I'd wake with a whopper of a migraine the next morning- and then we figured it out: one of the triggers is ahhemmmmm, ya know....ummm...orgasms. Really. And I'm NOT giving up those either.....

If I had to choose between an invisible or visible illness: Visible. It makes it easier for others to get it so I don't have to explain it.

People would be surprised to know: That for almost a decade, beginning in our early twenties, I used to roll my eyes at my sister-in-law when she would complain of a migraine and not attend family functions.  These were family events that I too would have  loved to miss. I didn't believe in migraines. I thought she was just being devious, manipulative and dramatic. Yeah.  Then I got one. Holy Crap.  She has my retroactive sympathy and sincere apologies. I mean she is devious, manipulative and dramatic (three reasons why I love her) - but she wasn't faking it on the migraines. I know that for sure, now. I'm very sorry Ruth.

When someone is diagnosed, I want to tell them: Take care of yourself.  Keep a calendar.  Look for patterns. Educate yourself. Set limits on whatever known triggers are in your control (like sleep, or diet) to try and avoid the migraine in the first place. 

Be mindful that migraine medicines can kill you as well as cure you.  Don't take other meds with migraine medicine without checking with both your Dr. and a pharmacist.  Truly.

If you have a boss let them know how having migraines will affect your work, what it might look like...etc.  How often it might occur, what you will do to meet your work obligations, etc. I met with my boss and showed him my inhaler, my prescription and explained how migraines affect me and the rare side effects of the medicine itself.  I always notified another co-worker if I was taking my med in case I passed out or something and they'd know it might be a med reaction.  Because my med is a bullet shape/size  inhaler, I also didn't want anyone thinking I was snorting c*ke or something or that I might be "impaired" by taking my medicine.

When I'm not feeling well, people can help me by: Bring me an inhaler if there isn't one on the bedside table. Let me sleep. Leave me alone - I can't handle any sound, light, thinking, moving. OWWWWWWWWWWWWW. If the nausea has turned to vomiting, my pain is even worse.  I'm also scared because it hurts so much. I'm afraid I'm gonna burst a blood vessel and croak. I feel bad that I'm not able to do whatever and that I'm spoiling the day for my family or missing out on seeing them enjoy the day because I'm in bed or puking or wishing I would die because it hurts so much.

I want to be involved with National Invisible Illness Awareness Week because: If I had truly known about migraines I wouldn't have rolled my eyes at my sister-in-law for over a decade.  Well, I probably still would have - but it would have been for other reasons...Besides, all the cool kids like Corey and Social Worker 24/7 were sharing their invisible illnesses....so I'm doin' it.

*This meme was shortened/adapted from one used by Social Worker 24/7, also found here and was originally viewed at Corey's blog.