Tuesday, September 24, 2013

A new illness, and a perfect day.

So, it's been awhile since I've written and I feel the need for an update.  I believe the last time I wrote I was still in basic hell.  I was in bed about 22 hours a day.  Thankfully, that has ended.  My migraines have improved drastically with daily opiates and new preventives.  The choice to move to daily opiates was a big one.  It felt like giving up on standard treatment in a way, but then again, it didn't feel like there were many choices.  So in the end, it seems to be working.  My headaches are a low level everyday still, and they spike to true migraine still on a regular basis, but I cherish that low level headache time.  I consider that a big improvement.

In the meantime, however, about a month ago, I began having pain in my hands and feet on a daily basis.  I saw my primary care physician, and after some blood tests, we discovered that I have an autoimmune disorder and I was referred to a rheumatologist.  We don't know which disorder I have, because there are many different autoimmune disorders, but once I see the rheumatologist, she will narrow that down and give me a diagnosis and start treatment.  I can't wait for that.  I just want to be treated and feel normal again.  Since I have seen the PCP, the pain has spread to other parts of my body, so I have general body aches all over daily.  I am ready for that to stop.  When I have that pain and a migraine, it just adds insult to injury, you know?

So, anyway, I want to tell you about my perfect day yesterday.  It was so nice.  I woke up at 8 a.m. and felt good all the way to bedtime at 11 p.m.  That hasn't happened in SO long.  I just ran around, got some errands accomplished, shopped, visited friends, went to a Democratic Women's meeting, then out with friends--I did SO much and felt great through it all.  It was wonderful.  I can't remember the last time I felt so good.  My body aches weren't even that bad, and my head didn't bother me at all.  It's just almost impossible to explain the giddiness I felt last night over my great day.

I wish I could say today has been so great.  I am afraid today is back to real life, complete with a migraine, full body aches, and emotional swings....  I think yesterday was just a carrot representing the life I want to have, dangling in front of me just out of reach.  But surely I'll get there, right?  If it happens once, it surely can happen again.  At least that's what I am holding on to.

Thanks for reading.

Tuesday, July 9, 2013

Shout out to my Boo!

If you've read this blog often, you know I am smitten, intrigued by, and head-over-heels for my husband,C. C takes care of me so well, I can't imagine how he's not burned out and so tired all the time. But not my C.  He says he loves me and his most important job in the world is taking care of me.

A few things he does for me:  I get either Shipley Donuts or Chocolate Gravy every morning because he worries about how little I eat and the mornings are the one time of day I have an appetite.  He brings me whatever I ask for in bed--not because I physically can't get up and get it but because he knows it increases my pain to have to walk around.  He helps me reason through medication options when my brain is trashed from migraine pain and I can't think for myself, and on top of all this, every bit of house work has fallen on his shoulders for months now.  Again, I don't know how he does it, but C does, and still manages to love me in spite of it all. 

He also takes me to the ER in the middle of the night when I need to go, he sits with me in the dark when I have a migraine to keep me company, he brings me medications when it's time and I need them.…. There are very few things C doesn't or wouldn't do for me.  And I love him so for it. 

He tells me someday I'll get the chance to return the favor.  Though I want to return the favor, I don't want him to ever be as sick as I am now.  I know I don't control these things though, and with him being older than me especially, I likely will have to return the favor.  When or if that time comes, if I can be just half the spouse to him that he has been to me, and show him even half the love he's shown me, I'll be a pretty darn good caretaker. Because he's downright amazing.  

Monday, July 8, 2013

Talking about migraine without bumming everyone out

Migraine is a big part of my life. It's not ALL of my life, but I inevitably find myself talking about it wherever I go.  I try not to be a Debbie-Downer about it, but it's hard to feel like I don't bum everyone out when I talk about my struggles with migraine.  (BTW, where did the phrase Debbie-Downer come from?  I know three Debbie's and they are all gloriously positive people.) 

I especially feel like I bum other migraineurs out when I talk about my experiences with migraine.  I try to tell them "please don't judge your situation/expectations on my experiences, because I am an extremely hard to treat case," but I feel like that's not enough. When I hear of a migraineur who is worse than me or who has been chronic longer than me, my first thought is "oh no, will that be me someday?  Is that what I have to look forward to?"  I just can't help but compare our situations and put myself in her shoes.  

Then, I get bummed out about it.  It's hard to be positive when your sure your future is filled with more of the same bleakness and pain.  So if this happens to me, I know it probably happens to others when they hear my stories of migraine.  The getting bummed out and knowing your future will be filled with pain just like me. But I don't know how to honestly talk about myself, my life, without talking about migraine.  

I used to avoid talking about migraine as much as I could, for fear of looking weak or being misunderstood.  Now, I realize they are such a big part of my life I can't avoid talking about them and talking about them is a good thing.  It brings awareness to a problem that needs more awareness.  

So I guess all I'm saying is that it's a really difficult subject to put a positive spin on, so if I've ever been a bummer to you when discussing migraine, I certainly apologize. It's not my intent.  I do hope I've raised awareness of the issue without being a Debbie-Downer. (There's that phrase again…)  

And for all you Debbie's out there--stay positive!  

Friday, July 5, 2013

Just a little vent

So, I need to vent a little.  It's multiple things really.

The first thing I need to vent about is that I have been chronic now for 15 years.  That means having migraines on more days in a month than not.  I happen to think that's a LONG time.  Longer than anyone should have to live with chronic migraines and that surely my effective treatment method is just around the corner.  Then today I read a friend's blog, and she's been chronic for 20 years.  Twenty years.  So you can guess what that makes me think.  It's possible effective treatment for me isn't just right around the corner.  I could do this five more years.  Maybe longer.  My friend hasn't found effective treatment yet.  Can I do this five more years?  Am I strong enough?  It doesn't feel like it sometimes.

I also want to vent about how I am sleeping, or rather not sleeeping, lately.  I am trying trazodone to sleep instead of lunesta.  I am on a low dose of trazodone to start out and just moving up on the dosage slowly.  It's not working out very well.  I am just not sleeping unless I take something to supplement the trazodone, and then I only sleep for a few hours at a time.  You can imagine what this sleep deficit is doing to my migraines.  I have daily migraines anyway, but they happen earlier in the day and I get no break at all when I don't sleep well at night.

Last night was rough.  Not sleeping is rough.  I'm constantly worried about how much longer this can go on.  When I first started having migraines, I was terrified of the "next one".  They were so bad, and I always knew I would have another, and it terrified me.  Now, I'm not terrified of the next one.  The next one is a given.  It's going to happen and it's going to be awful and I'm somehow going to live through it anyway. Now, what I'm terrified of is how long they can last.  How many hours a single migraine can last, and how many years migraines in general will last.

I hate complaining about things, but some days, you just need to vent.  Today was really one of those days.

Thanks for reading.

Another Mostly Good Day

I had another mostly good day today.  It was because of Zomig, but still, I need to celebrate the good days, no matter what the cause.  I even was able to watch fireworks, which I thought would never happen again.  Sure, by the end of them I was hurting, but I enjoyed at least half the show.

The day didn't start well.  I have to judge carefully how I use the Zomig because I can only use two per day and they've only been lasting about four hours per pill.  Today was an important day, you see.  Not only was it the Fourth of July, but it was the day my husband and I had promised to take my now 10-year-old niece, E,  out for her annual birthday shopping trip and dinner.  We do this with each of her older brothers on their birthdays too.  It's our chance to spend some special time with each of them and hopefully let them know they are special to us.  

So we promised her we'd take her out today and take her to see fireworks tonight. Now, I was quite concerned about the fireworks watching.  Bright lights, flashing lights, loud noises, and migraines just don't go together.  But we promised E.  I didn't want to disappoint her.  So as I said the day started off bad.  I had my usual migraine in the morning, and knew I had to get ready to pick her up around 2:00 p.m.  So I took my Zomig around 1:30, having no idea if that was too late, if my migraine was too advanced to let my stomach metabolize the medication, or if it would work as it was supposed to.  Luckily, within about 20 minutes, I began feeling a little better.  In about 30 minutes, sure enough, I felt good enough to get out of bed and begin the process of getting ready.

So a few hours later, we were on our way.  We did a lot of shopping.  What can I say, the girl takes after her mom and her aunt.  She knows how to shop.  Then, she requested IHOP, because she likes their Mac and Cheese, of all things.  After that, I was onto my second Zomig, and we were off to the fireworks show.

We had to wait quite awhile for it to get dark and for the show to start.  I thankfully remembered to bring earplugs, so the sound of the fireworks wasn't too awfully bad.  I enjoyed the first part of the show, then all of a sudden, what had been the enjoyable lights of the fireworks seemed to brighten to an unbearable glow.  Just like that.  I asked my husband if the lights seemed brighter to him, because I thought it couldn't just be me, but of course, I knew better.   I knew my evil superpowers were returning and my vision was just sharpening as it does when a migraine is hitting.  So, I began the day and ended the day with a migraine.  Unfortunately, my day wasn't over yet.

We still had to drive an hour home, and E decided she wasn't done shopping.  Besides that, we needed to buy her something for breakfast and some snacks, so we had to run to Wal-mart.  Luckily, my head wasn't at full steam yet.  We make it home, and I begin the melt down.  The problem is, I'm trying a new night med, and it's not working well so I can't sleep.  So this blog is being written with a migraine, not a level 9 or 10 at least, at 1:30 a.m.

As I said, I need to celebrate mostly good days.  I just wish I didn't have to end them by talking about the migraine I go to bed with.  Someday....

Sunday, June 30, 2013

Migraine Awareness Month #30: A Letter to a Fellow Sufferer.

Today's prompt is from the movie 2001:  A Space Odyssey: "I am putting myself to the fullest possible use, which is all that I think that any conscious entity can ever hope to do."  We are to write a letter to a fictional Headache Disorders patient encouraging that person to be kind to him or herself.  Use the ways you're too hard on yourself as inspiration.  

At the outset, let me tell you, the reader, that I am proud of myself for making it this far.  Writing for 30 days, 30 days with migraines, is a pretty big accomplishment for me.  I wasn't sure what to expect when I started this journey.  I wasn't sure if I would succeed at this task or not, but I am proud I did.  Writing is cleansing and purifying for me.  It's good for me to write.  I need these prompts to help get the creative juices flowing, however.  So if there is a lag here for awhile, I apologize.  I will try not to ignore this blog and to keep writing as often as  I can, but it's difficult to just sit and write without a prompt.  I am not a creative writer, you see.  Oh well.  On to the prompt.  I just felt the need to wrap up the month with a little paragraph of pride and warning, letting you know what you may or may not expect in the future.

The prompt:

Dear friend:

I know you are suffering.  I know it's terrible and indescribable, and you feel as though it may never end.  I have been there.  I know it's easy to be really hard on yourself at times like this, to wonder what you did to deserve this.  I think everyone who has been in this position has wondered that at times.  Trust me, I don't think there is anything you could have done to bring this upon yourself.  You can't be good enough to make this go away or bad enough to bring this on.

Don't blame yourself when new treatments fail.  It's natural to be disappointed.  It's natural for people around you to be disappointed.  Let them be disappointed.  You can't do anything about that and you CAN'T take their disappointment upon yourself.   You didn't cause their disappointment.  You can't let yourself feel responsible for their disappointment.  Treatment failures happen.  You don't want them to happen anymore than anyone else does.  You aren't the cause of their disappointment.  Remember that.

You are strong.  You deal with more pain in a day than most people have to deal with in a year.  Do you realize most women say they'd rather go through childbirth again than have another migraine?  Yet we go through labor in our heads on a daily basis.  We are strong.  Even if you feel weak sometimes, you are stronger than you ever  imagined.  Grab hold of that strength and don't let go.  Say it over and over in your mind if you have to.  You are strong.

Sometimes you will have to miss out on things you want to do because of migraines.  And it will suck.  You might cry and be depressed and wonder why life is worth living.  You have people around you who love you and who you love, and who make your life worth living.  Migraines WILL steal some things from you.  I wish I could honestly tell you that they won't.  But I don't want to lie to you.  Migraines will rob you of joy  in your life.  But you can decide how much they can rob from you.  Don't let them rob you of your friendships, your family, and the love you have in your life.  Find a balance.  Take advantage of every good moment.  Even if it's just talking on the phone, keep up with your friends and those you love.  Don't block them out.  Find ways to let them in so they understand what you are going through, as best they can, and know you are trying to include them in your life.

Migraines make everything more difficult.  From careers, to family, to friendships, to just maintaining a home.  But with a support system, you can do it.  Love yourself, and be kind to yourself.  Know your limitations, and respect your limitations.  You will make it.  And there will be a large community of online support for you when you need it.

Best of luck to you, my friend.


Saturday, June 29, 2013

Migraine Awareness Month #29: Living with Chronic Migraine

       The prompt for today is one word: Misfits.  If we live with Chronic Migraine we are supposed to incorporate it into today's post.

Bless your hearts.  I feel like all I've done this month is blog about my chronic migraines. It's difficult to talk about Migraine all the time and not at some point feel like a whiner.  I hope I've done more educating than whining, but if it has come across has whining, I do apologize.

So, what can I tell you about Chronic Migraines that hasn't already been said?  The definition of Chronic Migraine is migraines on 15 or more days per month.  When you have Migraine on 15 days per month, it's pretty hard to feel like that's a good thing or your lucky to "just" have them on 15 days per month. However, now that my Migraines are truly daily, I would kill to go back to "just" 15 days per month.  

The progression to daily didn't happen all at once.  I started having migraines more often, maybe 20 days per month, and thought, "oh, no! Something bad is happening here!"   So I consulted with my doctor, we tweaked some things, and I came home feeling optimistic. Then, slowly but surely, I started having migraines more days per month. Before you know it, I was having them daily... That's when the despair and depression set in. 

As if dealing with chronic daily migraines wasn't bad enough, I always make sure to  add depression to the mix whenever things get rough.  It's not as if I have a choice. Despair just overwhelms me and I feel as though Migraines will dictate my life forever.  It's a suffocating feeling and I try, I try so hard to fight it but sometimes I just can't.  When I give into it I feel as though its stolen all my air and I just can't breathe.  

I never thought I'd be jealous of someone who has migraine pain 15 days per month, but I am.  I'm not a jealous person. Period.  But I'm always jealous of other people's health.  I hate that about myself.  Just one more thing this disease does to me that I hate.  

I'm so blessed to have the friends that I do, and you all know who you are.  I want to name names, but I'd surely leave someone out, so I'll just say from the friends I've had since I was a little girl to the "newer" friends I've made in the past few years in politics, and all those in between, I love you all.  You are amazing for being so understanding and flexible and just rolling with whatever I throw at you because of migraines.  You all inspire me and make me want to be a better person and friend.  

Chronic daily migraines take so much out of me and so much from me.  But they've not taken the love I feel surrounded by, and they've not taken my ability to fight them with the help of my family, friends, and wonderful doctors.  As long as I have all that, I think I can survive.  

Migraine Awareness Month #28: Using Humor to Cope with Migraines

Today's prompt is from Saturday Night Live and it asks how we use humor to cope with Migraines.  

Humor is something that is pretty central to my life. Or rather, laughter. From my 12-year-old nephew to my mom to my husband, I have some pretty funny people in my life who are always making me laugh, and boy, do I need the laughter.  At times, laughter can be a migraine trigger. It's like a form of exertion, I guess.  That sucks. But it's worth it to be around people I love who I make me laugh.  

My mom is great, and she can be just plain silly at times. She has this giggle, it's the the kind of giggle that makes everyone else in the room start giggling and laughing too, and you cry, and giggle until your whole body shakes, and no one can remember why your laughing anymore but you can't stop.  I always say when my mom laughs, the whole world laughs with her!  You just can't help it.  Her laugh is the epitome of contagious laughter.  

My husband is a big cut up. He keeps me laughing too. We get in tickle fights, and I swear he is the ticklish person I have ever known.  So when he starts laughing I start laughing....  His laughter is contagious too.  And he's just silly.  I call him my 12-year-old husband because he is entertained by the same things a 12-year-old would be.  But it's also funny and hilarious.  He keeps me laughing.  

I realize this post isn't necessarily supposed to be about laughter.  It's supposed to be about using humor to cope.  But I need humor from those around me as much as I need my own.  I do use humor, though I admit it's often difficult to find humor in pain. My friends and I joke about who is medication worthy, we joke about being on a first name basis with the ER staff. My husband and I joke about all sorts of things, some not appropriate for print!  Joking and finding ways to be humorous about the situation keeps me from drowning in self pity and sorrow. Who wants to do that or be around someone doing that?  

Thankfully, I've been blessed to be able to find some humor in every situation, and when I can't, my friends can. If I didn't have friends and family to provide me with love and laughter, my life would be empty, just one migraine after another. As I always say, I am a lucky girl in many ways, just really unlucky in one big one.  

Missed a Day, Dang it!

I knew when I started this journey of trying to post everyday for 30 days, it would be a huge task for me.  Monumental when you consider my daily migraines.  And it has been.  I'm so proud of myself, if I can brag for a moment, for getting something up everyday--except yesterday.  I have a good excuse though.

See, I have these daily chronic migraines.  They are unrelenting lately.  For awhile, I would wake and have five or six good hours in the morning and early afternoon, but this week, something has changed, and I don't get those early morning and afternoon good hours before the migraine hits.  I've just been waking with the migraine or only  had about two hours and then BOOM, there it is.  Like a ton of bricks. So writing and keeping my promise to post something everyday or nearly everyday has been quite the struggle as of late.  But dang it, there are only a few days left in Migraine Awareness Month, and I am going to make it.  I am going to write it out!  (Get it, not ride it out, but write it out?  I was trying to be clever....)  Anyway, sorry for missing the day yesterday.  I will go back and pick it up.  But first, let me tell you about my day yesterday.

I woke with the same migraine I went to sleep with the night before.  My left eye felt like it would explode right out of the socket.  The whole eye socket hurt, as if something was scraping it or being done to it that is indescribable. It just hurt.  The left side of my head felt as if it was on fire and that someone was trying to flatten out that side of my brain on top of that.  I know I am not doing the pain justice by trying to put it into words because it really is excruciating and indescribable.

After many tears and trying to decide if I had anything here that would touch the pain and would give me relief, plus a call to my psychologist who keeps me sane in these situations and helps me reason through what I should do, it was decided that I should go to the ER.  Now, most migraineurs HATE going to the ER.  Getting in the car with a migraine is the last thing we want to do, plus ER's are typically noisy, crowded, you can't lay down, you may wait for hours to get to a dark room, there is always the risk they will think you are a drug seeker instead of a legitimate patient... The negatives go on and on.  But of course, at times, it's the one place where you can get the treatment you need to break your migraine, so the cost/benefit analysis says you have to go.  So I went.

The car ride was difficult, there's nothing to be done about that.  We get there, and they are doing the floors with that large, loud machine.  Great.  Luckily the waiting room isn't crowded and they get me into triage quickly.  Then in about 5 or 10 minutes, they get me into a room.  I'm so happy to be away from that floor machine!  The doc comes in and asks what works for me, and voila, I get Benadryl and Compazine just like that.  I like being able to ask for Benadryl and Compazine.  What drug-seeker wants Benadryl and Compazine?  That didn't work completely so they followed it up with Demerol and Phenergan and sent me home to sleep it off.  I slept about 5 hours, and was awake for about 30 minutes, and then BOOM, here came another migraine, this time complete with nausea and vomiting.

Migraines suck.  I thought my ER trip would solve my migraines for the day.  It didn't.  I thought that one migraine was enough for the day after the the four meds I had that day.  It wasn't.  These things are unpredictable and uncontrollable.  It's just the way they are.  They suck the life out of you if you let them.  Somedays, I admit I let them, other days, I fight it with all my might.  I just do what I can--and that's all I can do.

Thursday, June 27, 2013

Migraine Awareness Month #27: GooseFraba. Dealing with Anger and Resentment

Today's Prompt is from the movie Anger Management: GooseFraba:  How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorders?  

You may be saying What the Heck?  What the heck is Goosefraba?  Goosefraba is a word that was used in the Anger Management movies to relieve anger when it arose in the lead character.  Just a silly word, that was supposed to dispel the situation and provide some relief.  In real life, I don't know how much saying a word like Goosefraba would help the anger and resentment I feel from Migraines.  I don't just feel angry because I have Migraines, although I have plenty of anger about that.  I feel anger about all that I feel Migraines have taken from me.  My ability to work, my ability to succeed in so many areas of life that other people get to.  My ability to finish law school.  My ability to have a family--complete with kids.  My ability to have choices, choices unaffected by how my head feels or might feel at any given instant.  My ability to have fuller friendships, unaffected by migraine always looming over us.  Migraines steal so much.

I realize this post isn't supposed to be all about what migraines take, but about how I deal with it.  Constructively.  I don't know how I deal with it.  I see a therapist and have for many, many years.  He helps.  I have a great support system.  I cry sometimes.  I cry a lot during a migraine.  You just deal.  I can't let anger take over my life.  I'm not that kind of person.  I use Dori's line in Finding Nemo and "Just Keep Swimming", only I "Just Keep Smiling".  Eventually the smile kind of bleeds in and you can't help but feel a little happier because you've been smiling all the freaking time. 

I write. This blog and social media helps me let out the negativity and create some distance from my feelings, both good and bad.  It's therapy for me.  Therapy gives me a safe space to let out my feelings, both good and bad and get some distance from them too.  I don't know how people who don't write or see a therapist survive!  

I have many people in my life that I love who love me back.  That helps with anger and resentment.  It's hard to be overcome with anger when you are surrounded by love.  And  I am lucky to be surrounded by love.  Lucky in many ways, just really unlucky in one big way.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Wednesday, June 26, 2013

Migraine Awareness Month #26: Steel Magnolias: Stronger because of Migraines

Today I am writing from the prompt Steel Magnolias: "That which does not kill us makes us stronger": The prompt asks in what ways are we stronger by living with Migraine or another Headache Disorder?  

To tell you the absolute truth, I chose this prompt.  The real prompt for today was about how do you cope with the way Migraines affect your memory, and I don't know that I cope with it, I think it just happens and I can't help it so I deal with it.  But again, to tell you the absolute truth, I'm not really sure how to approach this prompt either.

Am I stronger because of Migraines?  Maybe.  Maybe I'm not stronger, but maybe I am just aware of how strong I am in a way that I wouldn't have been before.  I don't always feel very strong.  I usually feel pretty weak in the face of the beast.  I know I have to have some strength or I wouldn't have made it through 15 years of chronic migraine.  I would have given in to that urge that says in the middle of the worst pain, "Your life is always going to be this way.  Pain is all you will ever know.  Why keep going?"  It takes strength to hold off those thoughts.  It takes good friends, family, a good therapist and just generally a great support system to hold off those thoughts.  But overall, it takes strength to let that support system work in those darkest hours.

So, am  I stronger because the migraines or just aware of how strong I am because of them?  That's a question I can't answer.  I hate to think anything good has come from these wretched monsters that destroy my life in every other way, so I am hesitant to say they have made me stronger.  Revealing strength may sound like a good thing too, but anything can do that.  It doesn't take a life-destroying illness to do that.

Maybe I'm just beating around the proverbial bush here and anyway you look at it, Migraines have brought me some strength.  Damn.  I hate those things for torturing me and I hate them for making me stronger.  I just hate'em.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Tuesday, June 25, 2013

Migraine Awareness Month #25: Elvis Presley, My Favorite Historical Figure with Migraines

Today's writing prompt comes from the movie Lincoln, and asks Who's your favorite historical figure who lived with Migraine or another Headache Disorder?  

Did you know Elvis Presley had migraines?  Did you know he didn't die the way you think he died?  He wasn't the typical superstar who overdosed on too much party drugs?  He might have been suffering from a migraine, and simply have taken his migraine meds, and either overdosed, or died as a complication of the migraine?

Yes, it's true.  See, Elvis was a Migraineur.  It's not well known by the general public, but the National Migraine Association:  MAGNUM, went on a mission to find out for sure if Elvis suffered from Migraines or not.  MAGNUM's Executive Director, Michael John Coleman, spent weeks in Memphis trying to find out who he should interview to know for sure what Elvis's health condition really was.  The press release can be found here.  What he found, after interviewing Elvis's personal physician, was that Elvis had been hospitalized or treated many times for conditions related to headache or vision problems (aura).  Elvis was also being treated with the only migraine abortive available at that time, an ergotomine, that tests in the blood as LSD.  He was on the preventative Propanolol, a preventative that is even used to this day.

Guess what Elvis had in his blood at the time of his death?  LSD, Propanolol, Demerol (a common painkiller) and anti-emetics, which Migraineurs often take to calm the nausea that accompanies migraine.  Now, why would he take the party drug LSD and anti-emetics together?   He wouldn't.  But he would take his migraine medicine, the ergotomine DHE and an anti-emetic to treat his migraine.  And that ergotomine would show up in his blood as LSD later, leading everyone to believe he overdosed on LSD.

Elvis has always been my favorite historical Migraineur.  I'm not sure why.  There are others who accomplished more serious tasks.  Thomas Jefferson, Ulysses S. Grant, Robert E. Lee, Mary Todd Lincoln, many others....  But I think the mystery surrounding Elvis intrigues me.  That many people don't know he was a Migraineur intrigues me.  I love to tell the story and see the surprise on people's faces.

So now, "Don't be Cruel" and definitely don't be a "Hard-Headed Woman" (or man) and read the proof provided in the link above to see that Elvis was indeed a migraine sufferer and understand why he might be my favorite historical figure.

As always, thanks for reading.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Monday, June 24, 2013

Migraine Awareness Month #24: Risky Business: New Treatments

Today's prompt is from the movie Risky Business.  It asks us "Each time you try a new treatment you take a risk. How do you initiate a discussion with your doctor so you can make an educated decision about trying it as a team?"  

If you read my blog often, you'll find that I think I have some truly great doctors.  The three of them that I see regularly are Dr. Y. in Philadelphia, Dr. T., and Dr. D., locally, and they are just amazing in all they do for me.  So I have lots of trust in my doctors.  I also suffer daily migraines and have for some time now, so I am quite desperate for new treatments.  This combination of trust and desperation makes me willing to try just about anything one of my doctors recommends.  Is this smart?  I don't know.  I truly think they have my best interest at heart.  Is every thing they recommend "right for me"?  Again, I don't know, but I'm willing to try just about anything.

So given all that above, and the fact that trying new treatments is an easy decision for me and a fairly easy discussion with my doctor, I'm going to take the prompt in a little different direction.  See, I have this horrid Depression.  It can be triggered by a myriad of things, but disappointment is a biggie.  So the disappointment I suffer when new treatments fail is a huge trigger for my capital D Depression.  What I have to balance more than anything when trying a new treatment is the excitement and expectation of trying something new, with the potential for disappointment and feelings of failure when and if it doesn't work, like so many other things haven't.

The words "cautious optimism" are well known around our house when discussing new treatments.  I have to continually moderate my feelings about whatever it is we are doing so that I don't get too excited or feel too optimistic about it, because that will lead to huge disappointment if the new treatment doesn't work and then there I am with all this optimism on my hands....  It's just not good.  If I can tell myself, "yes, we are going to try this, but like every thing else, it probably won't work," then I can avoid the extreme disappointment and Depression when in fact, the new treatment doesn't work.  But sometimes I wonder, am I shooting myself in the proverbial foot to always expect things to fail?  Does it become a self-fulfilling prophecy when you expect everything you do to fail?  Am I missing out on some placebo effect that might just be as good as the real improvement?  Then again, if you've seen the Depression I can fall into from sheer disappointment in the failing of new treatments that I had built up in my mind, you might believe, as I do, that missing out on some placebo effect is probably worth it just to avoid that kind of Depression.

A conversation with my doctor about new treatments?  Nah.  That's not Risky Business.  Risking Major Depression because those new treatments let me down and cause serious disappointment?  That's Risky Business to me, folks.  That's just one more balancing act of my life.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Sunday, June 23, 2013

Migraines and Stigma

I need a break from blogging today.  I had a busy weekend at the lake.  As I mentioned in my previous blog, I knew I would encounter a lot of triggers, and I did, and I paid for it one night, but it was worth it to be with my friends and feel for just one weekend like an almost normal person.

So for today, please take the time and watch this ah-mazing video by my migraine specialist, Dr. William Young of the Jefferson Headache Center in Philadelphia, PA.  It's about the stigma associated with Migraine.  There is plenty of stigma associated with Migraine and it's wonderful that it's being studied and recognized.

I hope you find this video as  interesting as I did.  It's about 16 minutes long, but it's worth every minute.

Thanks for reading and watching.


Saturday, June 22, 2013

Migraine Awareness Month #22: Walk the Line: Migraine Triggers

Today's writing prompt is from the movie Walk the Line. It asks how we balance the need to avoid our Migraine/Headache Disorder triggers with the equally powerful need to enjoy the things that give your life meaning?

This is a particularly apt question to pose to me this weekend as I am on a weekend retreat of sorts with friends at their lake house. I adore these friends you see, and jumped at the chance to spend time with them, but knew this weekend would be filled with land mines of triggers. Bright sun, the loud boat motors, possibly not sleeping as well as I do at home, pressure I put on myself to keep up with everyone else's schedules...  The list goes on and on. But these mostly aren't just considerations for this one weekend. Many of these are things we have to consider every time we spend any night away from our house. But is it worth it to be with this group of friends for a few days? Yep. It is. They enrich my life and make me feel like a real person again. Not just someone stuck in her house or bedroom having migraines.

I have to make this analysis about many things in life. Is it worth risking the smells and noises of the hair salon to get my hair done? Yes it is. Having my hair cut and feeling better about myself ultimately makes ME feel better as a whole. Some days, if I'm not feeling my best, is it worth the drive to the next town to see my doctor? Yes it is. I need to keep in contact with my doctors, I have more confidence in my treatment when I've seen them personally, and I can't accomplish these things by canceling appointments. Is it worth the flight to Philadelphia, which ALWAYS triggers a migraine, and the expense and inconvenience, to see my headache specialist there? Yes, as long as he has fresh ideas for me.

I also have to make an analysis about when to use my meds and when to "save" them. My friends and I sometimes joke about being "medication worthy". See, as migraineurs, we have certain meds, like Triptans (think Imitrex and Zomig, though there are many others) that we can only use a limited number of days per week. Usually two or three. Since I have daily migraine right now, I have to decide which days I'm going to take those on. I usually try to wait until I have an event to attend or plans with friends. I have just found that though I suffer pretty badly on some days, this allows me to most have a semblance of a life on the other days. So if I deem you or your event "medication worthy," you know you're special.

Walk the Line?  Yes.  Migraineurs have to walk the line.  It seems like Migraines are waiting around every corner.  But that's my life, and I've learned to live it.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Friday, June 21, 2013

Migraine Awareness Month #21: Oblivion

Today I want to talk about my life before Chronic Migraine.  Back in high school and college.  When I just had daily headaches that weren't migraine (in high school) or migraine that was controlled to once or maybe twice a month (in college).

Back then, I could never imagine things as bad as they are now.  I lived in oblivion.  It just didn't dawn on me that it was possible to have daily migraines.  Migraines that hit you every single day, no matter what you try to do to stop them.  They just keep coming at you like monsters in the dark, trying to tear you to pieces.  Only you don't tear  into pieces, you shrink into a tiny bit of your former self in the bed, and hide, and stay that way until the monster leaves, hopefully leaving you intact and ready to face the world again. Back then, I would have a migraine in college, it would last 3 or 4 hours, and I would take a nap and it would be gone.  Luckily I could always sleep through the pain, because that was what was required to get rid of the Migraine.

In high school, things were kind of different.  I wasn't treated by a doctor yet and hadn't been diagnosed with migraine and didn't know what to do and what not to do, so I was drinking tons of caffeine in a day and taking lots of OTC meds to try to control the headaches I was having.  This led to Chronic Daily Headache and rebound and I usually slept every afternoon after school, for at least a few minutes, to try to get rid of it.  The headache wasn't horrible.  I could still function.  I could even play volleyball on game days, though I'm sure I wasn't at my best.  It was just a nagging, dull headache that plagued me daily.  Sometimes it spiked into what I now know was migraine, but since I hadn't been diagnosed yet, I didn't know that at the time.

But during all this time, I never, ever, imagined those headaches would turn into what I have now.  I often wonder if the then me could sympathize with the now me?  I don't know.  Sometimes I think it's more difficult for people with slight migraines to understand someone like me.  How easy would it be to think "My migraines aren't that bad, so hers must be like mine, what's all the fuss about?"  I can see that happening and it makes sense sometimes that that would happen.  But wow, that's so not true.  Migraine is truly a spectrum disorder.  You can have one end of the spectrum with someone who rarely gets migraines and may even be able to take OTC meds for them when they do, and at the other end of the spectrum you have someone who is completely disabled and uneasy to treat with the most powerful prescription medications available.

I guess I am doing so much for migraine awareness to keep people from living  in the Oblivion I once did.  Embrace those in your life with migraine.  Love them and treat them with care, no matter where they fall on the migraine spectrum.  They will love and appreciate you for it.  I promise.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Thursday, June 20, 2013

Migraine Awareness Month #20 Star Trek Generations: Migraines and Family History

Today's writing prompt is from Star Trek: Generations:  What role do Migraine/Headache Disorders play in your family history? Do others live with it? Does this make a difference in how you talk about it?  

I have one of those families that is just dotted with migraines throughout.  Since Migraine is a genetic neurological disease, that makes sense, right?  Mostly women in my family have them, but my maternal grandfather had horrible headaches.  Since I have been diagnosed and now have these horrible migraines, my mother recognizes that his headaches were probably migraine.

It hurts my heart to know my grandpa had the same type of head pain that I now suffer with but he didn't have the medical help at his disposal that I do.  I believe he might have had BC Powder.  I have no idea if that worked for him.  I hope it gave him some relief.  I know they tell me he tied a bandanna tightly around his head, to put pressure on his head, which is something I often try to do, though not with a bandanna.  I hope that helped him some too, though if his headaches were like mine, that was a futile measure.  Something that would seem to provide relief but was really only the smallest amount of relief and very temporary.

Now, I have aunts and female cousins on both sides of my family--both my mom's side and my dad's side--who have migraines.  No one has them to the extent I do, I don't think, thankfully.  As much as I hate that anyone of them has to suffer with migraines, it does help the whole family understand me a little better.  They all have husbands or brothers who have seen them suffer through a migraine, and therefore even the men understand me a little better.  My cousins and I can commiserate about our pain, and about events we've missed or how we hate the limitations on pain medicine.  As I said,  I hate that anyone of them has to suffer, and even one migraine is one migraine too many, but it does help to be understood and have people to talk to about it at family gatherings.

What bothers me most is that a new generation in our family is coming up with migraines.  I have two younger cousins, one on each side of my family, who have them now.  This breaks my heart to see kids who have them.  Even though I had them at their ages, I just don't want my cousins to have to go through what I've been through, even a small percentage of what I've been through.  I guess I am not in control of these things.  If I were, boy, lots of things in the world would be different.  That's for sure.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Wednesday, June 19, 2013

Migraine Awareness Month #19: Migraines and Mojo

Today's writing prompt is from Austin Powers: International Man of Mystery: Migraines and Mojo: How has living with Migraine/Headache Disorders affected your sex life?  

So who do I have to kill for coming up with this prompt?  Teri? Diana? Ellen?  Come time for the American Headache and Migraine Association patient conference in November, and one of you is dead meat.  OK, I’m kidding.  Kind of.  But my parents will read this.  And probably little Mrs. Francis Turner.  And I’m going to have to talk about sex.  There, I said it.  SEX. 

I'm going to address this, because it's a big issue in any marriage, but especially when a spouse is chronically ill.  I've always said if my experiences can help someone else, then maybe I don't go through them in vain.  I am updating this now because I feel I shied away a bit when I first wrote, and maybe I am just older and braver now, but people struggling deserve more than my original post. 

In my experience, sex and migraines are mutually exclusive during a migraine attack, with exception of a few times the upper half of my body and the lower half of my body weren't communicating, if you know what I mean. In those few instances that I could even imagine having sex with a "minor" migraine, it actually helped a little. Strange, I know, but between the distraction and that type of release, it worked like a drug! 🤩

In general though, the fact that it's not often imaginable that I could have sex and a migraine at the same time means a chronic Migraineur like me needs to have married a very patient man.  And luckily I did.  I have a feeling that at times sex in every marriage takes patience.  Well, sex in our marriage takes oodles of patience. Imagine if saying “not tonight, honey, I have a headache,” wasn't just an excuse, but was a real life problem that you spent countless hours and dollars and time in your marriage trying to remedy and might even mean a trip to the ER instead of a romantic evening at home?  Patience?  Yes.  Our marriage, not just our sex life, takes lots of patience.

Actually, my husband says our marriage is more like, "I don't have a headache tonight! There's an opportunity!"

We miss date nights because of migraine. Plans or promises for romance made early in a day may be completely ruined by the time evening rolls around.  I am thankful for patience.  

I have to say with sex, among the chronically ill or not, communication is also key. Even when sex is off the table, cuddling, kissing, talking, and other forms of intimacy help keep our bond strong. You can still talk about each other's needs, and sometimes I think recognizing that there are needs you want to meet but can't at that moment is cathartic and healing. It took some counseling to figure this stuff out, and we are still learning, but we've made great strides since I first became ill.

It hasn’t always been this way, luckily.  At times I am “more well” than others. For my parent’s sake, and little Mrs. Francis’s sake, let’s just say less patience is required during those times and leave it at that. Just like with every other issue we have discussed, we have to make the good days, and even just the bearable days, matter. Sex isn't the most important thing in a marriage, but it does strengthen your bond and covers a multitude of annoyances!  😉

We have learned recently we can’t always count on my health, but we are married and committed to each other anyway, and can thankfully count on each other.  If you read this blog often you’ll find that I think my husband is near saintly, and he tells me his universe revolves around me, and he makes me believe it, regardless of what the mojo has been like around the house lately. We take time to hug and kiss and cuddle on the couch, and show each other affection, regardless of how I feel. We put each other first in life, and we talk about everything there is to talk about, including the mojo level at any given time.  We laugh and have fun together as much as possible.  I'm convinced these little forms of intimacy keep us strong despite the hindrances of chronic migraine pain. 

So, migraines and mojo?  More like Migraines, Mojo, Patience, Communication, and alternate forms of intimacy and affection.  Without the other ingredients, good luck managing the Migraines and Mojo on their own! 

 June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Tuesday, June 18, 2013

Migraine Awareness Month #18: My bitch session.

The writing prompt for today is from the movie Die Hard: "Now I Have a Machine Gun, Ho Ho Ho":  We are to devise a make believe weapon to blast Migraine/Headache Disorders out of our lives.  

I am not very good at make believe.  Complaining, now I can do that with the best of them.  So instead of devising something make believe, which I am not very good at, I am going to complain about all the weapons I have and how they don't work.  Some days, you just really need a good bitch session.  Sorry for all of you who decided to read mine.

Let's see, I am on something like 13 preventatives.  Thirteen!  Do they seem to be preventing anything?  Nope.  Not a thing.  This doesn't count the seven as needed meds I get to choose from when I feel a migraine coming on that may or may not do their job.  Plus I have two medications for my stomach issues.  I take what I would call a plethora of medications.  None of them, save for the stomach meds, seem to do much for me.  So  instead of inventing something make-believe to blast migraines out of my life, how about the current meds I am on just do their job?  I guess maybe that's a make-believe world to believe that can happen.

Some days are better than others.  For instance, yesterday, I had a good day all the way until about 10:00 at night.  I don't know why it was any different than any other day.  Maybe the barometric pressure was different.  Maybe the earth spun slower.  (I'm kidding with that one.)  Maybe all the meds I've taken all my life decided to start working, yesterday.  Who knows?  But until about 10:00, I could manage the pain.  After 10:00 p.m., it was like it had been waiting all day to unleash itself on my left eyeball.  But you know what, I got a lot of fun in before 10:00, so I guess I can live with that.  I don't want to have to live with that, but I guess I can.

I just wish, while we are wishing for make-believe things, that there will be a day when I don't have a migraine at all.  AT ALL.  That used to happen occasionally.  I mean, I would have head pain everyday, but it wasn't always at migraine strength.  I miss that.  I just don't want migraines everyday.  Making it to 10:00 p.m. is getting pretty close, but I just want to make it all the way.  24 hours with no migraine.  And then I want to repeat it.  On a regular basis.  I shouldn't be asking too much.  Other people can do this.  Why can't I?

Thanks for hearing out my bitch session.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Monday, June 17, 2013

Migraine Awareness Month #17: Mission Impossible

The writing prompt for today is from the movie Mission Impossible.

The Mission Impossible movies feature people doing impossible feats with amazingly advanced—and as far as we know—not yet invented, technological gadgets.  It feels often as if getting rid of my migraines is a Mission Impossible.   It seems an impossible feat.  I go to my doctor, and give him his mission, and though he tries, he just can’t accomplish the task.
Perhaps the tools he needs to rid me of these migraines just haven’t been developed yet.  Perhaps he needs some pair of magic glasses that allows him to see into my brain and see the problem.  Or he needs a special briefcase that contains the two chemicals that must never be mixed until I come in and say the magic words that let him know those chemicals were designed just for me.  All I know is that it feels like he needs some magic, and perhaps something that we don’t even have yet, if he’s going to fix me. 

I don’t like admitting this.  I don’t like thinking of my migraines as a “Mission: Impossible”.  I want them to be “Mission:  Accomplished”.  Do I believe one day they will be gone?  That they will be Mission:  Accomplished?  After 15 years of mostly chronic migraines, I don’t even know.  I sometimes wonder if I have given up hope.  I have a doctor, a psychologist, who does his best to force me to hold on to hope.  My husband, family and friends, of course, want me to hold on to hope, but seriously, after 15 years of being a guinea pig with no real success, how would you feel?  I am still grateful for every good moment.  There just aren't enough of them. 

Mission Impossible.  Yes.  I believe I might be a Mission Impossible.  Oh how I wish I weren’t.  

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Sunday, June 16, 2013

A good day--mostly

So yesterday was a big day for me. It was the day of the Jefferson-Jackson Dinner, the Democratic Prom--minus the dancing. The JJ Dinner is one of the biggest fundraisers of the year for the Democratic Party, and I look forward to it every year. It's a chance to get all dressed up and hang out with hundreds of other Dems, some of whom I only see once or twice a year. So I was worried for weeks in advance that I wouldn't be able to attend because my migraines have been SO bad. I have been going to bed at 8:00 at night just to escape the pain. So the chances of me making it to the JJ Dinner, which started at 7:00 p.m. and lasts about three hours seemed kind of slim. But I bought a dress and made plans to go anyway.

Making plans to go consists of a few things. First on the list was strategically planning how I would use my meds that week. Second on the list was getting a spray tan. (Hey, not everything in life is about migraines.) Third on the list was a home pedicure, because I have a thing about other people touching my feet. Again, vanity trumps migraines.

I woke up bright and early on Saturday after a horrid Friday night filled with pain, and gratefully, I felt pretty well. My dear husband made a run for Shipley's Donuts, so my day was off to a pretty darn good start. He had a meeting to attend, so I was home alone to play online a bit, pay bills, and around 10:15 a.m., I began to feel that pain creeping up in my head that I recognized so well. So I took my first dose of meds for the day. Then I gave myself a pedicure, played online some more while my newly painted pretty toes dried, then took a shower. By that time, I was feeling the pain in my head again, so I took my second dose of meds. The meds were working at holding the pain at bay, so I was feeling pretty good about things.

After my shower and getting ready to be presentable, my hubs was home so we ran to town for a quick shopping trip. It's at this time that I feel the need for my first Zomig of the day. I'm still making it mostly Ok though, at about 4:00 p.m. now, and I'm just amazed by this fact. Typically, I would be in bed by this time of day. But typically, I don't take Zomig and I take my other meds a little differently. We go back home to finish getting ready; me, putting on my dress and final makeup touches, him, getting into his suit and tie. We looked quite dashing if I do say so myself. :-)

So by the time we leave the house I'm feeling the need for my second Zomig, and beginning to worry a little. But, I've reached the point of no return. We are dressed, we are meeting friends to ride with, so at this point, I'm locked in. I don't really want out--I'm just worried about contingencies. I'm always worried about contingencies.

We get to the dinner and start seeing friends. Everyone looks gorgeous. The room looks great, and seeing that many Democrats together makes my heart swell. But there it is again, that blasted pain in my head. We sit down to eat after awhile. Nope, that doesn't help. I've still got a few weapons though. I have my third and last dose of meds in my clutch. I take those. This time--nothing happens. I get no relief. I'm on my own in a loud room for the rest of the night, just me and my steadily increasing head pain. Gradually, my left eye got in on the fun too.

I made it through the evening. I was able to ignore most of the pain and focus on the people and things around me until we got home and I stopped and it had time to really take hold and kick my ass.  I spent all my spoons and then some.  If you don't know what I am talking about, please take the time to read the Spoon Theory.  It will help you understand the life of someone living in chronic pain.

I want to be a glass half full kind of girl and focus on the good parts of the day. And I am so grateful for every single hour I have without a migraine on any day. But I'm really struggling with the fact that for most of this year, every single night ends up the same way, with me curled up in a ball in bed, clutching my head, often in tears, always wondering, "why does this happen to me?" It makes me feel like a glass half empty girl. What I really want to do is throw the damn glass at someone or something. Whatever is in charge of this migraine stuff. But there's nothing to throw it at. Nothing in charge.

I'm having an existential crisis maybe. OK,  OK, That's doubtful. I'm pretty sure I've already had one of those and solved it with 14 years of therapy. Still though, I'd like to feel like I focus more on the positive. Maybe there just needs to be some more freaking positive for me to focus on first?

Thanks for reading.

Saturday, June 15, 2013

Chronic Migraine in America Study Results

Today I just don't feel up to writing a Migraine Awareness Post.  But--there was a major study done on Chronic Migraine in America in the past few months, and it came up with some pretty amazing results.  So I am going to leave you with the link to that study here.  And this awesome infographic from the creators of the study:

(Click on infographic to see it larger.)

I hope you find the study results and infographic as interesting as I did.  Hopefully tomorrow I'll get back to the Awareness posts, but for today, I'll be resting my eyes and fingers a bit.

Friday, June 14, 2013

Migraine Awareness Month #14: Letters to Julia: A Thank You Note to Batman

Today's writing prompt is to write a thank you note to someone who has helped you.  

I am so blessed to have so many people in my life who have helped me along the way, and who continue to help me, that it's difficult to decide who to write to.  There is my husband, who is by my side helping me cope every single day, my parents who provide all kinds of support when we need it, my brother who steps in every time we need him to, my friends--my wonderful friends who just roll with it even though I drop in and out of their lives as the migraines allow.  Then there are my doctors, who are doing everything they can to help, thinking outside the box, trying new things, allowing me to call repeatedly with ideas and complaints. Who do you pick?

Well, I know who deserves a great big thank you and he doesn't let me thank him very often.  For the sake of this writing, we'll call him Batman--and he knows who he is.  I call him Batman because I text him, and like I've sent the Bat Signal, not long after he comes to the rescue.  Or I can call him, and sure enough, before too long he comes to the rescue.  He's the Batman.  Or Dr. Batman.  Either way.

I want to thank Batman for keeping me sane, or as close to it as anyone can given these monstrous migraines I face on a daily basis.  Thank you, Batman, for making yourself available to me in a way that you don't have to, but that has probably saved my life at least a few times, if not more.  Thank you for caring so much about your patients, and for going above and beyond the call of duty.

Thank you for believing that I can be something when I grow up.  Thank you for believing that I will beat these monsters and that I will have a future, even when I can't believe any of that for myself.  Thank you for reminding me that without migraines, I am a beautiful person with a bright future and that someday, we will reach that future.

Thank you for letting me call you when I am at my lowest points so that you can tell me all this stuff.  So that you can remind me what my other doctors plans are and I can take my meds like I am supposed to and I can sleep my way out of the funk that I am in.  Thank you for that.

Thank you for all of the above and so much more that I just can't put into words properly.  Thank you for being the kind person you are, for your "special heart", and just for being you.



June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Thursday, June 13, 2013

Migraine Awareness Month #13: Sophie's Choice: The Treatment Choices I Make

Today's writing prompt is from the movie Sophie's Choice:  What are the toughest treatment choices I face when balancing Migraine/Headache Disorders with other health conditions?  

This is an apt question to ask because people with Migraine are more likely to also have Depression, Fibromyalgia, Irritable Bowel Syndrome, and a whole host of other health conditions.  I personally have Depression (notice the capital D) and Irritable Bowel Syndrome.  I have to juggle treatments for Depression with my Migraine treatments more so than the IBS treatments.  

You know how I've mentioned that there are no preventive medications that have been developed specifically for Migraine and that the preventives used for Migraine have all been hijacked from other fields?  Well, luckily Depression is one of those fields, so many of my preventives can do double duty.  There are still many choices to make, as most preventives have some pretty retched side effects and I have had to decide whether the benefit outweighs the negatives the side effects introduce into my life.  Things like weight gain, weight loss, being sedated, or not being able to sleep.  Also, not being able to remember things, and not being able to think clearly, all these have been a few of the side effects of the preventives I have taken.  I  just take one medication at a time and do the cost/benefit analysis.  Sometimes it's worth it, sometimes it isn't.  

Sometimes the choices aren't even about medications.  I have had a Vagel Nerve Stimulator implanted surgically to treat Depression.  Choosing to have a surgery, especially a relatively new treatment for that condition, is a pretty big consideration.  Sometimes though, you are desperate enough to try anything recommended.  Usually, I am desperate enough to try anything recommended.  I trust my doctors enough that if they recommend it, I know they have my best interest at heart, and when it comes to both Migraine and Depression, I truly am desperate for effective treatments.  

I have suffered with Migraine all my life.  Undiagnosed until I was 17, but we look back and know those headaches I had as a child were migraine.  I have suffered with Depression since 1999.  At times both have been controlled, but mostly, both have tormented me.  So yeah, I am desperate and willing to try just about anything--within reason.  There are a few things people have recommended to me that I balk at, but if it's backed up by science, then yep, sign me up!  

Speaking of choices migraineurs have to make and balancing health conditions, the Migraine community found out this week that one of our members committed suicide due to her Migraine pain, and another precious 10 year-old soul had a stroke due to a Hemiplegic Migraine.  People think Migraines are just a headache, that you can just take a pill and get over it.  I am doing so much for Migraine Awareness Month because Migraines are serious, and can be deadly.  Please treat those in your life who have Migraines or other Headache Disorders with care.  You have no idea, until you've experienced it, the pain they may be going through, both physically and emotionally.  

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Wednesday, June 12, 2013

Migraine Awareness Month #12: The Box: I am the Experiment

Today's writing prompt comes from the movie The Box: What situation in your Migraine/Headache Disorders treatment has made you feel most like a guinea pig or lab rat.  

You know, I feel like I start every one of these Awareness Month posts with the word Wow, but really, Wow.  E-V-E-R-Y-T-H-I-N-G.  Everything about being a Migraine patient makes me feel like a guinea pig.   There is no "standard treatment" for migraine.  It's all trial and error.  So after 15 years of trial and error, I am one tired guinea pig.  We try one preventive for awhile, and discover it doesn't work, so I go off of it and we try another.  And Migraine treatment is often about a combination of preventives, so even if one doesn't work, that doesn't always mean I come off of it before we try another.  Often I am on handfuls of drugs that seem not to work at all, but we are searching for the right combination so I keep taking them anyway.

This has gone on since I was 17.  Only it worked for the first five years or so and my Migraines were controlled, then things went all up-side down and things haven't been back under control since.

The latest thing we've tried is pain management.  I thought it would be pretty straightforward, just try a pain killer around the clock and it would work and ta-da, things would get better.  Nope.  I'm a guinea pig with pain management too.  We've been through three different pain management drugs so far, but I think we've found one that I can tolerate that seems to be helping some.  So maybe the guinea pig part of my treatment will end soon.  Cross your fingers for me.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Tuesday, June 11, 2013

Migraine Awareness Month #11: Twilight: My Evil Migraine Superpowers

Today's writing prompt is from the movie Twilight: What power of a vampire or werewolf would you like to have to cope with Migraine or another Headache Disorder? 

Perhaps I don't know enough about vampires and werewolves, but I know more about how Migraines already give me powers similar to them than I know of their powers I would like to have.  That was an awkward sentence and I hope it makes sense.

For instance, werewolves can see at night, and hear and smell things from a great distance when tracking their prey.  Migraines give me what I call evil superpowers.  The palest light hurts my eyes, so I can see things in the near dark as if it were daylight, and I can smell the faintest smells as if you were holding them right under my nose.  Noises, forget-a-bout-it.  I can hear things from far away as if they were in my room.  The faintest noise, the weedeater 3 doors down, seems like it's coming for me.  The TV in the next room, seems as if it's blaring.  I don't make a big deal of it because it's unfair to others, but it's just how it is.

Vampires shun the light.  It hurts my heart that I have to avoid the sunlight the way I do  now.  I was what you would call a sun-worshipper as a young person.  I am smarter than that now, and scared of skin cancer, but I would love a convertible car.  I realized though, that I can't even use my sunroof in my current car midday because the sun hurts me shining through it.  I would love to spend more time in my parent's pool.  I would love to spend more time on the boat with my brother and his kids.  It's just not possible when you are in one phase or another of a migraine most the time.  My eyes are SO sensitive all the time.  I never leave the house without a couple pairs of sunglasses handy, one to wear and one in case I break or leave the other pair somewhere.  This is something about migraines that I truly just hate.  The light sensitivity.  We live in the bat cave.  Our shades are always drawn and curtains always pulled across the windows.  Our bedroom is a cave.  I am happy my husband doesn't crave sunlight or I would be in trouble.

I know I am straying from the prompt, but I truly don't know enough about werewolves and vampires to know what powers they possess that I would like to have to cope or combat this dreadful disease.  The one thing I am aware of from the movie Twilight is that the vampires sparkle in the sun.  They don't have to shun the sunlight as do vampires in other vampire movies.  I would love to be able to be in the sun again and to sparkle at that!  One of the things I miss most about my pre-migraine life, other than not living in pain and being able to earn money, is the sun.  Sparkling would just be a bonus.  :-)

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Monday, June 10, 2013

Migraine Awareness Month #10: Ocean's Eleven: My Migraine Care Team

Today's writing prompt is "Ocean's Eleven: Who's part of your Migraine/Headache Disorder care team? What essential roles still need to be filled?  

I first have to say, right now I have a pretty damn good Migraine care team.  I even have some people on the bench waiting to get in the game if I need them.  That's a lucky migraine patient right there.  

The team starts with doctors of course.  I have doctors here in Arkansas, and I have my specialists that I travel to see multiple times per year in Philadelphia.  My doctors in Arkansas are top notch.  It's not that they aren't. It's just that you get to a point where you've exhausted one person'sideas, and they agree it's time to see someone new so they refer you out of state.  That's what happened to me.  My neurologist here, Dr. T., is pretty awesome.  He thinks outside of the box and always has something new on his mind when I visit him.  But he leaves the main thrust of my care to Dr. Y, in Philadelphia.  I can't talk about my Little Rock docs without talking about Dr. D., my psychologist.  He is a truly unique doctor.  He has been my doctor for many, many years, probably longer than that relationship is supposed to last, and if I've said it once I've said it a million times, he's probably kept me alive over the past 14 years.  He introduced me to the psychiatrist Dr. J.  Now, I don't actually SEE Dr. J. right now, but I know he's there if I need him--he's on the bench for now.  I see Dr. T, a psychiatrist in Philadelphia, along with Dr. Y, my primary headache specialist.  Dr. Y has been great for my headache care.  There have been ups and downs, and setbacks along the way, but overall, when he's made progress, it's been more progress than any other doctor.  And after a long period of setbacks, we are beginning to make progress again.  

Those are just the doctors.  I have a long list of caregivers too, from family, to friends.  My husband, C, is there by my side almost all the time.  He brings me food, meds, holds my hand when I am sick, and comforts me however I need it.  My parents step in anytime C can't be there.  They stay the night, they drive me places, they provide meals, whatever I need, if they can do it, they will.  My brother does the same.  He'll come sit with me, or drive me places, just do whatever he can.  Finally, I have lots of friends who call and show up and do whatever is needed.  They sit with me, provide meals, provide rides, whatever I need.  

I have such a great list of doctors and such a great list of caregivers, and this doesn't mention the online support that's available too, I can't really think of any positions that need to be filled.  For a long time, I didn't have a psychiatrist, now I have two.  I have the best family and group of friends.  I say it over and over, but besides the seemingly never ending migraines, I am just really lucky.  

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Sunday, June 9, 2013

Migraine Awareness Month #9: Mama Mia: Money, Money, Money!

How does living with Migraine or another Headache Disorder impact your financial situation? 

Wow.  I have to start this blog post with that word again.  Not because it's difficult to think of something else to write, but because it's difficult to narrow it down and organize my thoughts.  There are SO many ways my financial situation is impacted by these blasted Migraines.

Let's see, on the broadest scale, I am not able to work, so that's a pretty big impact.  I had a scholarship to college, a scholarship to law school, and all signs pointed to the idea that I could have had a successful career.  So I have forgone that because of Migraine.

On the most basic level, we incur many expenses due to my health.  It began when I was 17.  That was when I went to my first Headache Specialist.  My parents paid for everything then.  Now, my husband and I pay for my healthcare, with lots of help from my parents.  We just couldn't afford it otherwise.  Healthcare costs are so expensive.  I take 22 prescription medications either as daily preventives or on an as needed basis.  I see five doctors regularly.  This doesn't take into account any additional procedures or therapies I might be prescribed.  Some of my medications cost $40 a pill or more.  Thankfully, once we've met my deductible (which is high), we only pay 20% of that cost, but even at 20%, costs add up.

On top of all this, my primary headache specialist is in a whole different region of the country, Philadelphia.  We take planes, trains, and automobiles to get to him.  The cost is quite exorbitant.  Could I find a closer doctor?  Of course.  Would I get the same level of treatment?  I doubt it.  I have tried the doctors in my state.  After years of treating me with no success, they referred me out of state.  I tried the doctors in neighboring states.  They didn't provide me with the level of care I felt merited the travel it took to get to them.  If I have to travel at all, I want to travel to the best doctor I can find.  I am doing that now.  I am just traveling farther than I expected to have to travel, but he's worth it.  In fact, the Mayo Clinic told me he is among the top migraine specialists in the U.S. and NOT to leave Dr. Y for anything at Mayo or any where else. I thought that was a pretty relationship solidifying endorsement!

As most migraineurs know, we have to visit the ER from time to time as well.  ER visits aren't cheap. I don't know a single migraineur who likes to visit the ER or thinks it's the place to go to get the best treatment, but still, at times, it's our best option.  We pay through the nose for it though.

I don't mean to complain.  I feel like I have excellent healthcare.  I know there are many who can't afford even the most basic care, and I fly to Philadelphia to see one of the top physicians in migraine care.  I have family who can afford to help me, and who cares to help me.  I am very blessed.  Still though, it's awfully expensive, and it would be nice if things were a little more affordable, you know?

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Saturday, June 8, 2013

Migraine Awareness Month #8: Evita, Don't Cry for Me Argentina.

As Migraineurs, we don't want to be pitied, but we aren't always good at telling people how they can help us.  How would you like to be helped?  

I am using a substitute prompt today from the movie Evita.  I am going to take it in a bit different direction and just talk a little about my situation and the situation of those around me.  You see, I absolutely don't want to be pitied.  I rarely even want to be asked if my head hurts.  It's not something I like to talk about personally as it relates to my daily pain.  Now, I don't mind telling people I have migraines and they are severe enough that I can't work and that sort of thing.  I haven't yet found a way out of that conversation when someone asks me what I do for a living or a question like that.  But that's pretty much talking about migraines in the abstract.  Sure, we are talking about them as they relate to me, but we aren't talking about a specific migraine  on a specific day or the specific pain caused by any one migraine.  As it relates to my daily pain though, I just don't want to talk about it.  I don't want to be pitied or babied or treated differently.

This creates a huge conundrum because I want people around me to realize I am in pain and act accordingly.  To act quieter, talk softer, and to dim the lights if possible.  I just don't want to have to explain how bad I hurt in order to make these things happen.  It's a horrible catch 22.  I just expect people to look at me and know they should adjust their actions.  Do you know how unfair this is to most people?  Especially considering what  I wrote in Pretty Woman: What you do to look good when you feel like crap and Phantom of the Opera: What I hide behind the mask.  I try to hide how bad I feel and then STILL expect people to know I feel bad so they can act accordingly.  I'm impossible and I realize it.  I've been this way for so long I don't know how to change it though.  Only a certain few can look at me and really tell how I feel, and they can only do this sometimes.  I can fool them at times.  I am not trying to fool them, it's just that they can be fooled by how I look or dress that day.  Nothing is certain.

On top of this, I have been in the hospital so many times where they ask you "What's your number"--speaking about their pain scale, two dozen times in a day.  It will drive you insane.  I can't stand to use "the numbers" to let someone know how I feel, and I have trained my family to basically not even ask me how I feel, to let me tell them if it's bad enough they need to know.  I HATE having to stop and evaluate my feelings at any given instant to give them an update.  See, one of my coping mechanisms is to ignore the pain when it's at a lower level.  To push it down far enough, and keep myself busy enough, that I just don't have to think about it until someone or something brings it to my consciousness.  Such as, asking me how I feel or how my pain is that day.  So, I realize that puts my family at a disadvantage, because they don't know how to act or live around me.  They always assume they need to live quietly around me.  Truthfully, it's a safe assumption as loud noises hurt me when I have a migraine and trigger a migraine when I don't.  But still, I know they would like to ask and have more information, but out of respect for me have been trained to just keep quiet until it becomes obvious or I tell them I feel bad.  I know that can't be easy for them.

Back to the prompt:  What can people do to help me?  I'm not sure there's anything people don't already do that would help me.  I've said before here and I know you'll hear me say again, I'm a lucky and blessed girl in many ways.  My friends are willing to come sit with me when my husband is out of town and I feel like I need someone close by, or they are willing to just get me out of the house and take me to lunch or shopping or whatever it is I feel like that day.  My parents step in and help financially and with a support net for when my husband is out of town, willing to be here around the clock if need be, my brother would do the same.  I have extended family who has offered assistance too if I need it, and doctors who go above and beyond the call of duty....I have just about everything a sick girl could ask for, except health.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Friday, June 7, 2013

Migraine Awareness Month #6: Pretty Woman: What do you do to look good when you feel like crap?

Many of us live by the motto:  Feel bad, look good.  It just helps to try to look your best even if you feel rotten.  We don't want people to KNOW we feel rotten and we don't want to have to deal with questions about how bad we feel all day, so we do things to disguise it.

I'm a girly-girl, so if I am going to try to look good, it's all about the clothes and makeup.  Specifically eye makeup.  If I go all out and wear concealer, eye shadow, and eye liner, it's either a special event or I'm really trying to show something other than feeling like crap.  And I love getting dressed in nice clothes.  Summer dresses, I love'em.  Cute shorts and tops, love those too.  So, if I am out of my house, I will go out of my way to try to look nice regardless of how I feel.  

Now, I'm not saying I never go to the grocery store or Walgreen's in a cap and sweat pants.  There are plenty of days I don't feel like brushing my hair so a ball-cap or hat of some kind goes on, and sweat pants are the uniform of the day.  But in general, if I want to feel better about myself on a day I feel bad, it's full makeup and cute clothes, and doing my best to disguise the crappiness I am really feeling.  

You know that mask we talked about earlier in Phantom of the Opera: What I hide behind the mask?   Well, this is it.  The mask goes on.  But it helps, so give me that.  

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Thursday, June 6, 2013

Migraine Awareness Month # 6: PREMONITION--UPDATED!

Premonition:  Where would you like to see treatment options for Migraine and Headache Disorders go in the future?

Some information in this post is now out-dated.  Updated information will be italicized below.  

I would simply like to see Migraine and Headache Disorder research be better funded in the future.  Right now, it is severely underfunded publicly.  For instance, the National Institutes of Health funding for Migraine and Headache Disorders was less that 1/10 of 1% in 2011.  Think about how little that is.  One-tenth of 1%.

I would also like to see the FDA approve more migraine treatments.  Don't get me wrong, I want treatments used to be safe, and I want the FDA to proceed with caution, but I think they are too slow to approve treatments which gives insurance companies a reason to not pay for treatments recommended by doctors.  There are treatments used in other fields, or treatments used in Europe, for example, that have been proven safe, but because the FDA doesn't specifically approve them for migraine, insurance companies have a reason to deny paying for them.  Insurance companies shouldn't have such an easy "out" when it comes to paying for treatments that have been proven safe, even if the FDA is dragging their feet.

Because of this lack of research funding, only one innovative drug has been designed for migraine in the past 50 years.  Imitrex.  There are other drugs similar to Imitrex, drugs in the Triptan family, but they aren't considered "innovative" because they are so similar to Imitrex.  And there are other drugs used for Migraine, a few even FDA approved for Migraine, but they are hijacked from other fields, and weren't developed specifically FOR Migraine. Imitrex is the only truly unique drug developed specifically for Migraine in 50 years.  THAT seriously needs to change.  We need researchers dedicated to developing treatments specifically for Migraine and Headache Disorders.  I would LOVE to see that happen. That takes funding.  It's all tied together.

First comes the funds, then the research, then the new treatments, then the people with Migraine and Headache Disorders start to see some improvement in their quality of life.  Ultimately, that's what I want.  I just want us all to have improvement in our quality of lives.  Whatever it takes for that to happen--let's do that.  Soon.  Today.  Yesterday!  Let's go!

As of May, 2018, there is now a new class of "innovative" medications created solely to prevent migraines!  They are CGRP inhibiting medications.  The first drug of this class is Aimovig.  Two other similar medications were introduced in 2018 as well, Ajovy and Emgality.  All three are injections that can vary from once monthly to every 3 months.  More medications in this class are in the pipeline.  Some will be oral instead of injectable,  and I believe some might work as an abortive (like a triptan) and not just be for prevention.  This is, of course, HUGE for the migraine community. Speak to your doctor if you are interested.  They are expensive and insurance coverage has been sketchy, but most manufacturers have special discount programs as well.  Be sure to ask about that too!  I discuss my experiences with Aimovig and Ajovy in later posts. 

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com

Wednesday, June 5, 2013

Migraine Awareness Month #5: Carousel: You'll Never Walk Alone

I am beginning to feel like a broken record.  I am singing the praises of the people in my life in every blog post--but the subjects require it.  I want to dedicate this post solely to my husband--C.

C is by my side day in and day out, regardless of how I feel.  When I feel good, he's ready to compliment me and take me out and help me celebrate the good times.  Or, he's willing to simply stay home and let me "catch up" on rest and enjoy feeling good at home while I catch my breath between migraines.  I know he'd rather go out and do something on those days.  I know he's been sitting at home waiting on me to feel good so he would have a partner again to go out and explore the world with.  But still, he's patient and waits and lets me do whatever I need to do, whatever I feel up to, with no pressure on me to do the things HE would prefer.

Because of the migraines and the need to be in the dark and be very still and quiet when I am in pain, I spend a lot of time in our dark bedroom, in the quiet and stillness.  Of course, I am usually alone, and because of the pain, I often can't sleep and right now don't have proper medications to help me sleep.  C can't bear the thought of me laying back in our bedroom, awake and in pain, alone.  So he will come to our room, just to lay with me and hold my hand so I know I'm not alone.  I can't imagine how boring that must be for him.  But he does it anyway.  He just wants me to know he's there, he loves me, and I am not alone.  It is comforting, and man, I love him for that.

He does millions of other things to let me know I am not alone in this disease too.  He travels with me to my doctor's appointments, he helps me reason through my medication decisions when I am in too much pain to think for myself, he holds me when I cry, he holds me when I don't cry, he doesn't ever pressure me to do things I don't feel like doing.  He always thinks of my health first.

I was healthy when we married.  He didn't know this was the life he was choosing.  He could leave.  Few people would blame him.  He stays.  He tells me he will always stay, and you know what?  He makes me believe it.  I love that man.  He walks beside me no matter what I have to walk through, and that's pretty amazing.  With C in my life, I know I'll never walk alone.

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders.  The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com