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!!

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