June 29th is Chronic Migraine Awareness Day – Episodic vs. Chronic Migraine

     June is Migraine Awareness Month, so what better time is there to raise awareness about all aspects of migraine disorder. There are so many misconceptions about migraine disease, one major one being the difference between episodic and chronic migraine. Chronic migraine (CM) and episodic migraine (EM) are part of the spectrum of migraine disorders, but they are distinct clinical entities: International Headache Society’s International Classification of Headache Disorders (ICHD-II revised)

Migraine is a debilitating neurological headache disorder. Including both episodic and chronic forms, it affects 14% of the population, and up to 18% of women. Migraine is currently ranked by the World Health Organization (WHO) as 19th among causes for years lived with disability. Episodic migraine (EM) is characterized by those with migraine who have 0 to 14 headache days per month, while chronic migraine (CM) is characterized by 15 or more headache days per month. Here is a link to some interesting statistics about migraine: http://http://migraine.com/migraine-statistics/

It is estimated that those with Chronic Migraine make up about 7-10% of the total migraine population. The question often asked, by migraineurs and non-migraineurs alike, is why do the majority of migraineurs experience only episodic migraines, while the minority go on to become burdened with daily or near-daily migraines. What happens in the brain to create this change and why does it happen to some and not all migraineurs? These are the $100,000 questions. Theories of the pathophysiology of migraine have progressed from the early vascular basis of migraine to more complex current theories that emphasize the centrality of neuronal dysfunction. The most recently articulated theory of migraine is the central sensitization hypothesis, which proposes that altered processing of sensory input in the brainstem, principally the trigeminal nucleus caudalis, could account for many of the temporal and symptomatic features of migraine.

What this means for chronic migraineurs is that unlike a migraineur who is episodic, somehow the brain remains overly sensitized and unstable, neuronically speaking. Since the full workings of the  brain are poorly understood, and migraine funding through the NIH is pathetic (.03 % of the budget), we migraineurs, especially chronic migraineurs, are left with few options.

Current research has the risk factors for migraine chronification divided into three categories: Not readily modifiable, Modifiable, and Currently being investigated. They are outlined below.

Risk Factors for Migraine Progression
Not Readily Modifiable	Modifiable	Putative, Currently Being Investigated
Age	Attack Frequency	Allodynia
Low Education/Socioeconomic status	Obesity Medication Overuse Stressful Life Events	Pro-inflammatory states Pro-thrombotic states
Head Injury	Caffeine Use Snoring Other pain syndromes	Specific genes

I am a member of a group of chronic migraineurs that is promoting awareness of chronic migraine disease.  I recently asked members of the group to share with me when, how and why they progressed from episodic to chronic migraines. Here are some of the replies I heard:

“I would love to tell you but I am not sure what happened. Could possibly be a delay result of a car accident but honestly we don’t know and my doctors don’t seem to care WHY.”

“I had medication overuse headache only AFTER turning chronic.”

“I had a concussion at age 5 & I must have been genetically predisposed to getting migraines & the concussion was the trigger. Problem I have with that is no one in my family has or ever had migraines my parents say I complained of head pain since right after the concussion so I believe that’s where it started. I have had drs tell me I probably have post concussion syndrome.”

“When i went chronic I was in the best shape of my life, was not taking things for them, nothing otc (over the counter) worked so I didn’t bother…..I noticed that 3 months before my bday I would get a new symptom and things just got worse and worse till I had to quit work.”

“I woke up one morning with an excruciating headache which wouldn’t go away. Diagnosed with Chronic Migraine and New Daily Persistent Headache, but I think it’s actually NDPH and that I’ve had silent migraines for years which are now no longer silent thanks to NDPH”

“I’ve had episodic migraines my entire life (probably since infancy according to my mother) but they were never severe and never with nausea. Then last summer I got a really bad migraine, the first time experiencing vertigo and dizziness and crying accompanying it…. I really have no good answer to why it happened but I’ve stopped blaming myself for working too hard, which I had been doing for a while.”

“I was episodic from my early teens all the way up until I got pregnant with my son at age 33. During and after my pregnancy with him is when I became chronic.”

“I feel like it was just one thing on top of another for me. There was not one big event.Over the last 10 years I have had a few car accidents, then food sensitivities, then a knee injury, then a mold exposure, then a broken tooth and  on June 27, 2010 it hit and has not let go.”

“I’ve had episodic migraines my whole life. The first time I went chronic was on a drug called lupron, but that stopped with the drug. The next and current time I went was in January 2010. Before that I have been in a pattern of better in the summer and worse in the winter (even going daily for a few weeks every winter), but that year it just never went away, and on top of that I had been getting really severe migraines that were sending me to the ER…I never overused medications, just went chronic slowly.”

“I am the only one in my family who has migraines. I started at age 5. They were often I’d have a few a month. When I hit puberty (12) I got more. And at about 20 I started being chronic. But as I think of it, 3 yrs ago… when I became chronic, I was in 2 car accidents where I got whiplash in both my neck and back.”

“I was never episodic. Sadly I woke up with a headache feeling like a giant sinus headache and it’s never ever gone away since.”

“I think mine became chronic when my Fibro began to get worse. My migraines and fibro seem related. I went to a migraine specialist and asked him if he had any clue what mine were caused from and he believed fibro. I read a statistic on a migraine site the other day that said that 70% of people with fibro have migraines.”

My own story goes like this:

I had my first migraine around the time I entered puberty. Clearly there was a hormonal component for me. They were episodic, but some of those monthly menstrual migraines were vicious. However, a simple ibuprofen and a nap would take care of it. In between, I do remember getting tension headaches, especially in my teens, around the time my father died. So, I have always been prone to headaches and head pain.

The migraines always being manageable, fast forward to my late 30’s-  several miscarriages, changing hormones, and a diagnoses of fibromyalgia (with disrupted sleep being a symptom) all come together and I begin noticing that I am experiencing an increase in migraines and that they are no longer responding to that one ibuprofen. I also notice allodynia, which is defined as pain due to a stimulus which does not normally provoke pain. This means that I began having what I call permanent sore, painful areas on the back of my head that rarely go away.  By the time I entered perimenopause in my early 40s, about 4 years ago, I became chronic. I was officially diagnosed a having Chronic Migraine with Intractable Migraine 3 years ago, with this past year being the worst yet. I am now plagued with daily head pain that on most days morphs into debiltating full blown migraine attacks. I can not longer lead the life I once did, as I am disabled more often than not.

When looking are the risk factors that researchers have identified, certainly having sleep disturbances that come with fibromyalgia have worsened my migraines, but the hormone fluctuations have been a huge contributing factor and that doesn’t seem to be something that the researchers are accounting for. Also, for me and anecdotally for those I interviewed, obesity seems irrelevant. In fact, since losing 50 pounds, my migraines have only gotten worse. Hmmm, go figure!

The progression from episodic to chronic is often attributed to medication overuse. Again, anecdotally I am finding that to NOT be the case and it certainly is not the case for my situation. It is only after I became chronic that I have found myself turning to abortive medications more frequently in order to function, and that is due to the fact that no migraine preventative medications were developed specifically for migraine disease and have moderate to low success profiles and moderate to high side effect profiles.

I want to thank the wonderful migraineurs in the Chronic Migraine Awareness Group for participating in my Q&A. We are an amazing group. We suffer daily, yet have the strength and courage to get up every day, face unending pain and still manage to accomplish so much in our lives. Many have been driven to the brink of suicide in an attempt to end this unimaginable pain. I honor each and every one of you and every chronic migraineur as part of Chronic Migraine Awareness Day.

We will no longer remain in the closet, so to speak, and stand by when someone says that “it’s only a headache” and we “should just get over it” or “why is she the only one I know with a headache who has to go to the ER?”  Chronic migraine is serious business – a neurological disorder akin to MS that is debilitating in ways that cannot even be described in full here.

Now, the point of this day is to raise hell and to raise awareness because  we need real funding, real treatments and real solutions for our pain and suffering. My next post will focus on the current treatments available and what we can do to fight for more visibility. AWARENESS!!

Migraine and the Workplace

I’ve been in the workforce for nearly 25 years since I graduated from college in 1987.  Minus a few months here or there  when I was under employed or searching for a new position, I have always been gainfully employed. In fact, I have been at my current position working at the University of Massachusetts support staff Labor Union for nearly 18 years. Once a half-time position, I always had another half-time position at University to created full-time employment.

Two years ago, in 2010, the Union was able to extend more hours to me and create a 30 hour a week position. Although I had been diagnosed as having chronic migraine in 2008, it was a few months prior to this time that my once semi-manageable migraine condition spiraled out of control and began to disrupt my ability to function as a complete and normal human being.  I had just come off a partial leave from my other half-time position, so increasing my Union job hours to 30 hours a week job and having only ONE job after 16 years of 2 half-time positions was ideal. The universe brought me what I needed at just the right moment!!

I am of the mind that no one should have to work a 40 hours workweek. Shit, not one should work over 20 hours a week unless they are working for themselves creating art or doing work for self sustenance. And who came up with the insanity of the 5 day workweek? What about a more gentle 3 or 4 days of work a week? Anyway, I digress.

 For someone like me who suffers from chronic migraine (definition: 15 or more days per month of migraine lasting at least 4 hours), 30 hours a week is still a struggle, though I do manage to come into work on most days a month. I pride myself on being really good at my job. I love helping my fellow union members, I am very thorough and organized, and I find challenge and meaning in doing union work. I know that the constant pain I experience affects my ability. The medications and migraines make my thinking more fuzzy.  A lot of the time, I work through the pain and still manage to do an above average job, by some miracle. Or is it because I am a perfectionist?

For me, since this illness has become worse and more chronic in the past 6 months and has not responded to treatments, my struggle to keep working a normal schedule and to function in the workplace has intensified. How many days in a row can I legitimately go home sick without jeopardizing my job? I ask this rhetorically because I know the laws. I work for a Labor Union. I counsel union members about FMLA (Family Medical Leave Act) and the ADA (Americans With Disabilities Act) and though I don’t know these laws inside out, I know enough to know what my rights are as a union member.

But it is a slippery slope because as an employee you have to be able to do your job, don’t you? But as someone with a disabling medical condition that I have no control over, don’t I have protection and rights? These are legal questions that as chronic migraineurs we need to be asking. We also need to be much more open about our suffering so that we demand our rights and accommodations in the workplace. Accommodations can include: removal of fluorescent lights, no-fragrance policies, computer glare screens, air purifiers, flexible schedules, noise reduction where possible and more. Some of these things are works in progress, especially the exposure to scents and fragrances, as that continues to be a problem in my workplace.

For me, something had to give. So my Dr. and I decided that while I undergo treatment with Botox (more on that in my next post…), I am to work no more than 20 hours per week. The FMLA paperwork has been filed and as of this week, I have reduced my hours to 20 per week.

Part of this journey of chronic migraines is learning how to deal with others regarding my migraines and education is part of this. This is paramount when it comes to the workplace because there are still so many misconceptions when it comes to migraine. I feel like a broken record every day explaining to my boss (who is also a friend) exactly what I am dealing with. I feel like a broken record explaining chronic migraine to my friends and family too.

All of this contemplation about work and migraines, led me to research the issue and I found some very interesting information. For example, in a 2002 survey conducted by Harris Polls and Pfizer, of 3000 American Migraineurs surveyed, 66% “toughed it out” while continuing to work despite the debilitating  symptoms of their migraine attacks. For chronic sufferers, imagine toughing it out on a daily basis!  Here is a link to the poll summary: http://headaches.about.com/library/weekly/aa-harris-wkplace.htm

According to surveys done by the Migraine Trust, migraines are not taken seriously in the workplace,  with just 5 percent believing their boss understands the severity and impact of their migraines. One third of migraine sufferers believed they faced difficulties or discrimination at work because of their condition. Although the Migraine Trust survey was done in the U.K., I would think we would see similar results here in the U.S.

Clearly, we have a long way to go in terms of  education and changing the climate in the workplace when it comes to migraine. As migraineurs, we need to be open and clear about our condition, what our needs are and to be authentic about our suffering. This doesn’t mean we have to be negative or whiny. In fact, the most positive step we can take in facing our chronic illness, is to talk about it, to not “fake” it and to be clear to our employers about accommodating our disability in the workplace.

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

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