My passion is to help others in the community, young, old, and everyone in between, find relevance and joy in learning, performing or listening to classical music.

Tuesday, August 14, 2012

Mired in Migraines

© mast3r - Fotolia.com
This is the first time I've bothered to mention this on my blog but since I've had a day that was made null and void by a severe migraine, I decided I want to end it with something productive.  So here's my attempt, written with all the lights turned off, drugs taken, brightness turned down on my computer screen, fan blowing on me gently, and the room quiet and waiting for something.

Migraines are mysterious. 
Migraines are merciless.

But often times they are seen as just as "big headaches." Take some aspirin, get some rest, you'll be fine.  

Unfortunately it doesn't work that way.

Migraines don't usually go away overnight.  I have gone through two weeks at a time with a constant migraine, of varying intensity, but there nonetheless.  And I know of folks that have had migraines last for even longer than that.  So just taking some aspirin and getting some rest doesn't really work - at least not for some of us.   Because they aren't "just headaches."

Migraines can be debilitating.  Sometimes I can continue to function with one but on a bad day, like today, I am forced to do nothing.  And I mean nothing.  Reading hurts, looking at the computer screen hurts, listening to music hurts, practicing piano definitely hurts...yup, see how bad it gets?  If something keeps me from my piano that says something.  I can perform if need be, albeit in a bit of a drugged-up state, thanks to all the endorphins that come with walking on stage but afterwards?  Oh boy.  You don't want to see me after a performance under the influence.  Not pretty.  

Migraines make me want to cry...or worse.  But because they are so painful and debilitating any thoughts of doing either are quickly realized as impossibilities.  Imagine that.  

Migraines make me feel pathetic.  Here I am, a wife and a mother, and I am made worthless to my family.  I remember several times when my daughter was much younger and not yet in school when she had to nurse me through the day.  It might have been somewhat fun for her - a chance to truly play nurse, but it wasn't so fun for me nor did I feel it was really right.  I am thankful that I have a family that is so understanding and helpful but I wish it didn't have to be this way so much of the time.

Migraines are difficult to figure out.  I've tried so many different medications, many of which have had way too many side-effects to be bearable; I've driven long distances to go to special clinics;  I've kept charts trying to make some sense of all the possible factors; I've had many different doctors that have completely different philosophies; I've tried to figure out the triggers; I've tried different things in regard to my diet; I've checked the barometric pressure on a regular basis...it's been a lot of work but yielded very few consistent theories.  Out of it all I have learned just a few things which I'll share now, for what it's worth.
  • It's challenging to find a good doctor who can really help with migraines.  I finally ended up with a neurologist that has migraines herself and this has meant the world to me.  With her I feel comfortable because I know she gets it.  She listens to me, has figured out that my body is not very good with medicine, and has taken more of a "let's just get you through this approach."  We tried some of the preventative options but they were not well-received by my extremely sensitive system.  Instead, she has put me on a daily regimen of supplements and has found for me several different options that I can use once a migraine sets in.  There are good doctors out there and they take some work to find but it's worth it.  
  • It seems like MRIs are not necessary unless a neurologist does a basic set of tests (that doesn't require machines, radiation, or big bills) and he or she sees a need to proceed with the big guns.  I had two neurologists, after seeing me once, order MRIs after only speaking to me for about 10 minutes each.  It was such a knee-jerk solution for them.  Migraine = MRI but seriously?  Do you know how much those tests are?  Plus talk about migraine inducing!
  • Rebound migraines can be more debilitating than your average migraines but they can happen so incredibly easily.  I had no idea that the medicine that works best for me, Maxalt, is only supposed to be taken every couple of days.   For whatever reason, none of my doctors or pharmacists ever told me this little detail.  So for little old me, that was having migraines for days on end, for weeks on end, taking Maxalt every day was causing massive rebound migraines!  Of course I was also running out medicine on a regular basis, being forced a few times to pay $75 per pill when I was desperate and had run out of what our insurance would pay for.   Somehow I stumbled upon information about rebound migraines online so I asked my neurologist about it and she confirmed what I had figured out.  I immediately started keeping track of when I took Maxalt, allowing for 2 to 3 days in between doses, and instantly reduced my attacks and their severity.  For a long time I also didn't know that I could take advil at the same time I take Maxalt.  And on top of that I can also take an anti-nausea medication I take.  It pays to ask the pharmacist or your doctor!  Perhaps I'm the only person that didn't know these things but I want to go on the record for passing on these important bits of info.  
  • I have discovered a website, migraine.com, that has a wealth of information daily.  They also have a twitter account at @migrainedotcom.  
I wish I had more helpful information to offer but like I said at the beginning of this post - migraines are mysterious.  I certainly hope that more research will be done in the years to come so that this those of us who deal with them on a regular basis will find more relief.   Until then, if you're someone suffering from migraines, go easy on yourself - it's not easy to live with these things.  And for those of you that know someone with migraines, thank you for supporting them and believing them.  It means the world to us and makes living with them so much more tolerable. 

Now my head is really hurting so it's time to sign off.  Here's to a new and better day tomorrow.  Stay healthy, everyone! 


9 comments:

  1. A very good look at what migraine looks like - for you, Erica; thank you for sharing. I always find it interesting to read about other people's accounts of coping with these insidious headaches as I've been living with one since ... well, for longer than I can actually remember. Truthfully, I've had the SAME migraine for about 30 years - unremitting, unending, unceasing pain that only gets "tolerable", it never goes away entirely - not even with the pain medication that I take (without which I would be paralysed with pain). It is truly disheartening how people cannot understand what this pain is like but I'm really glad to hear that you've found a neurologist that understands your plight and is able to work with you from a point of common experience.

    When I'm composing it's possible to push aside the migraine - if I'm able to focus - but, when I finish ... the pain comes flooding in with a vengeance and is often debilitating. A few hours of work followed by excruciating pain. That's my daily pattern.

    Thanks for sharing your pain - I hope it departs from you - forever.
    Peter

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    1. Many thanks for reading and commenting, Peter. And thank you as well for the countless times you've chimed in on twitter or facebook when I've mentioned that I was in the midst of another migraine. It helps so much to know I'm not alone, as corny as that might sound.

      And I hope that your unbelievably long migraine disappears from your life as well. 2 weeks is too long for me so I have no idea how you've managed for as long as you have.

      All the best to you, Peter and thanks again,

      Erica

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  2. Oof. Thank you for writing about this! I can sympathize a tiny bit (I had migraines that luckily were just caused by the birth control method I was using -- they stopped when I stopped using it). I can only begin to imagine what it would be like for someone to routinely experience what I experienced during those times. There are some good forums for chronic pain; the ones leading the pack I think are healingwell and chronicbabe. I wish you luck and health.

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    1. So many people I talk with have experienced migraines to some extent - it's quite amazing! Now if only we can get help for all of those people. And thank you for bringing to my attention those forums. For me it makes it so much easier when I can read other people's experiences.

      Thanks for reading and commenting,
      Erica

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  3. On a purely selfish level, I sincerely hope your migraines dissipate because I love reading your blog, and every day I eagerly look to see if you've updated.

    Now about those little buggers...meaning the headaches, not the blog posts...

    My husband used to get migraines regularly, and his description matches yours painfully closely. I can only imagine how dehabilitating they must be, as I've never had one myself.

    BUT, about two years ago, my husband managed to make them practically disappear by changing two things: 1) He switched to aluminum-free deodorant and 2) he started drinking chamomile tea every day. We don't know which of these methods did the trick, but he doesn't intend to change either to find out! Since then, he has experienced migraines maybe two or three times, as opposed to monthly as before.

    The funny thing about medical remedies, as you are already well-aware, is that there aren't any "one size fits all" fixes. We've had friends who respond to these treatments, and those who don't. But I thought I'd put this out here just in case it might work for you.

    And then you can start blogging again =)

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    1. Ha ha, I love it. I'm honored that you would be so selfish and want me to keep writing. Trust me, I don't think I'll be stopping anytime too soon, migraine or no migraine!

      And I love your husband's solutions - so much cheaper and more pleasant than the more medical options. I have actually been off regular deodorant for many years and am much happier - I'm not sure it's had any effect on my migraines but you never know. As for the chamomile, I love it so I'll have to increase my tea intake to see if that helps. My guess it that I'll definitely sleep better which could help ward off the silly migraines.

      Here's hoping something will work...soon...for everyone!

      Thank you for taking the time to comment and for your support and encouragement. They are much appreciated.

      -Erica

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  4. thanks for sharing.

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  5. I suffered from migraines for over 10 years. I would get one about every 2-3 months. Then suddenly I quit getting them, and I've only had about 6 migraines in the last 14 years since. I figured out how... BY SLEEPING ON A MAGNETIC PILLOW! My parents started selling Nikken products and had me sleep on one when I thought I was getting a cold. They thought it would help keep me from getting congested. I I was teaching school at the time & didn't want to get laryngitis. It seemed to help, and I just kept sleeping on it. That is the ONLY change that happened, and I know it was the pillow. Changed my life! I recommend it... it's worth a try!

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    1. Wow, Jan J. I didn't know they had magnetic pillows but I'll look into that. I purchased a water-filled pillow a few years ago and that has helped tremendously. Previously, with normal pillows, if I had a migraine in the evening, trying to sleep was a nightmare. There was no way to get comfortable. With the water pillow I have virtually no problem sleeping and we all know how important rest is for migraine sufferers.

      Thanks for taking the time to read this post and to comment!

      Erica

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