Monthly Archives: March 2012

Migraine Myths and Realities

Here I am re-posting an article about the Myths Vs. Realities of Migraines.

So in case there is still any confusion…..

This should help clarify just what we are dealing with:

http://www.migraines.org/myth/mythreal.htm

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Spring Has Sprung

Here it is March 23, the Vernal Equinox has passed, the natural world is coming alive in so many ways. I hear peepers and frogs on Lake Metacomet at dusk and dawn, song birds and water birds are beginning to migrate back  and are creating a symphony of sounds. The buds are forming on the flowering trees, the crocuses have bloomed, the tulips are not far behind. It is a time for renewal and celebration, right?

So why do I feel like crap? Why do I feel depressed and unhappy? Two words: Chronic Migraines. Chronic migraine is defined as having migraine attacks on at least 15 days of the month or more. That’s at least half of the month lost to a monster that hammers into your brain, leaving an “axe” in your head, leaving you to endure day upon day of cumulative pain that just wears you down. This doesn’t even begin to cover the other symptoms of migraine which can be just as debilitating and disturbing, including but not limited to: nausea & vomiting; light sensitivity; fatigue; facial, neck and shoulder pain (sometimes severe); dizziness; tinnitus; and vertigo.

I know I said in my previous post that this blog wouldn’t be a pity party and that I’d try to keep this as light and fluffy as possible. But I am just not feeling it today. I am honestly going through a rough patch and the beautiful Spring weather we are having, and the awakening of the natural world, is just reminding me of how much I am unable to do. Yes, I know, I know. Don’t look at it as the glass half empty, blah, blah blah. I work really hard at that. The New Agers will want you to change your thoughts because they create your reality. There is a kernel of truth in that philosophy, but I also believe in radical acceptance of where you are in the present.

Where I am right now, in this present moment, is in a place where I am unable to participate in many of the activities that I love to do. I am no longer the person that I once was. I have to change and adapt and grieve. I have to let go that I cannot work in the garden like I once did, working for hours until my body aches, but glowing in the satisfaction of admiring our garden all season long. I can no longer take an 8 mile bike ride in the hot sun without it most likely triggering a wicked migraine that will last a couple of days and will take me down, onto that proverbial sofa. I let down the people I love because I can’t see them when I want to or do fun activities with them.  I can no longer be free spirited and do things on a whim. Everything must be methodically planned but often cancelled. Or just not planned at all, because I either have migraine pain, or am recovering from an attack. The head rules all, and not in a positive way.

Is there hope? That will be covered in my next blog entry. So, you won’t want to miss it. It’s gonna be dynamite! I will post when I feel like there is hope and I feel like I have a plan that includes hope…..”Just like that black crow…diving down to pick up on every shiny little thing”….like I once used to do.

Stuck On the Sofa Again

Okay, I know, this title gives the distinct impression that this, my second blog post, is going to be depressing as hell. I assure you, it is not. Even though I spent another night last evening with my ass  glued to our lovely purple Ikea sofa, requisite ice pack stuck to my head, it is a new day and I can look at it with a fresh sense of humor.

As I laid awake this morning at 5:00am, a usual occurrence for someone with chronic migraines (sleep disturbance is a HUGE migraine trigger!), I came up with a nice little ditty! So, to the tune of “Stuck in the Middle With You” the 1972 hit rock song by Stealers Wheel (good music trivia tidbit…), here is my song for the day:

Well I don’t know why I am laying here tonight, I’ve got the feeling that something ain’t right

I’m so sick I can’t even sit in the chair, and I’m really not going anywhere

Axe is on my left side, dizzy on the right, Stuck on the Sofa Again….Yes I’m Stuck On the Sofa Again…

I know, it’s kind of a rip off to take someone else’s song and just write some lame words to it, but it is all I could come up with at 5am, with that familiar pain lurking from behind my head. Give me a small break, please? Seriously, I love music, I am a musician. Playing music, especially with my band of brothers in the Octagon Space Tribe Band is what keeps my life blood flowing. I miss it. The migraines keep me from doing it. That does suck. But, if there is anything that keeps me going, that is the hope that I will be playing music with my Octagon Space brothers soon. All I need is one good day and I’ll be off that sofa and jamming!

Living with Chronic Migraines

So, here I am, 46 years old and writing a blog about having chronic migraine disease. Why am I writing a blog about this? Well, one reason is just for the hell of it, so I can have a place to express just how having this neurological disease has altered my life in so many ways. This blog will also be a place to disseminate info about chronic migraine disease, to sufferers and non-sufferers alike.

I am calling this blog “The Axe Files” because my migraine pain feels like an axe is in my head and I pretty much have this “axe” in my head every day and it sucks!!

How did this happen? Well, this is the million dollar question, isn’t it? I’ve had migraines since puberty. They happened pretty infrequently, maybe once every month or so and easily fixed by an advil. Then, when I turned forty or so, all hell broke loose and they just seemed to become chronic (which is defined by 15 or more days of migraines a month….). The current research indicates a cortical spreading depression as the migraine mechanism in the brain and a central sensitization of the brain, which essentially turns once sporadic migraine attackes into a chronic condition. Very complicated!  I’ll post some medical links soon so you will have the “official” info.

I used to have a normal life. There were so many wonderful things that I loved to do and I never had to think twice about doing them. I love nature and animals. I’ve always loved hiking – I’ve hiked several of the 4000 footers in the White Mountains, the highest being Mt. Adams, which is the second highest peak after Mt. Washington! I followed the Grateful Dead for years and went to rock concerts many times a year starting in 1978. That was my joy and love. These are two of the things that I can no longer do – concerts have way too many triggers: smoke, loud noise, people with perfume. I can no longer do long, strenuous hikes, as that most certainly triggers migraines. I can occasionally do short walks and hikes, but not as often as I’d like.

Having a chronic INVISIBLE illness (more on this later…) also poses some interesting challenges when it comes to relationships with family and friends. Some get it and are supportive and some become AWOL. Some really think they are helping when they suggest that you just need to become less stressed or take something for anxiety and that is your ticket out of your hellhole. Get a grip! This is a genetic neurological disease and it is progressive in some people. I just happen to be one of the lucky. I mean seriously, would you tell someone with MS or epilespy that their illness is just being caused by their anxiety or that if they just eliminated such and such food they will be cured? I AM SO SICK OF HEARING THIS. I have spent thousands of $$, eliminated so many foods, been poked & prodded, injected, manipulated, massaged, therapized to death. And still the migraines progressed. This disease is one of the most difficult to treat.

Okay, so this may sound like a pity party and sometimes this blog may serve to be that. BUT, I will not immerse myself in pity. I will take a dip into the waters of pity occasionally and will move on pretty quickly, preferring to try to use some humor and humility to deal with a shit situation.

Here are some positives: I have an amazing husband who is my shining light! He is supportive, funny, loving and without him I am not sure how I could survive this challenge. I still work! I really like my job as a Labor Union Office Manager. I’ve been doing it for 17 years. Yup, some days I have a hard time making it through the day because of the pain, but it is a Labor Union, so I have a very understanding workplace. Thankfully I only work 6 hours a day. Right now it is doable. Lucky me!  I have some great friends who are warm, supportive and wonderful, as well as very special godkids who delight me!  I have two sweet kitties who bring joy to my heart and make me laugh and smile daily. I have a cozy home on a lake in a beautiful setting. It is so much more than many have and I am truly grateful. I know this everyday.  I can still do artwork sometimes when the pain is under a certain level – mosaics, painting and occasionally beadwork. I also still can garden, a huge love of mine, though I leave the heavy lifting and digging to my husband Patrick.

This is it for today….thanks for listening! Peace….Jane