I’ve often wished that chronic migraine (CM) had a different name. I have lived with this diagnosis for 6 years and have found this description consistently misleading and confusing both for myself and others.
When most people hear the word “chronic”, the first thing that comes to mind is either a) something that has been going on for a long time or b) something that happens frequently or regularly.
Although these are both often true in the case of an individual living with chronic migraine, they are not the defining factors which lead to a chronic migraine diagnosis.
Chronic migraine is defined by the American Migraine Association as: “headache occurring on 15 or more days per month for more than three months, which, on at least 8 days per month, has the features of migraine headache”
Episodic migraine is separated into two categories and defined as: “low-frequency episodic migraine (less than 10 headache days per month) and high-frequency episodic migraine (10-14 headache days per month)”
CM occurs in approximately 1% of the population, and studies estimate that approximately 2.5% of people with episodic migraine will transition to chronic migraine each year. For this portion of the population, CM typically progresses over the course of a few months until it completely dominates the person’s life. Migraines that once consisted of debilitating attacks that came and went, become an almost daily battle.
Living with chronic migraine is very different from living with episodic migraine. Sometimes, these differences are not even clear to migraneurs in general. I often think about severe presentations of other chronic illnesses, and how that differentiation does not exist in the migraine world when talking about the spectrum of disease.
For example, the broad spectrum of a condition like asthma is more widely understood. It is commonly accepted that the person who lives with mild asthma, triggered primarily by extreme exercise and managed effectively with a pocket sized inhaler is on one end of the spectrum. At the other end, is the person with severe asthma, who is impacted daily by a wide variety of triggers; has to rely on an inhaler, nebulizer and other medications and still struggles to manage their condition. To accuse someone with severe asthma of “faking” because their presentation of the disease looks different than the milder presentation would be cruel and inaccurate.
Unfortunately, because migraines are so invisible and the battles are fought behind closed doors and blackout curtains, those suffering with the most severe presentations of this disease can be accused of exaggerating (often, painfully, from other migraine sufferers themselves). It’s incomprehensible to many who experience episodic migraine that every day can be migraine-impacted. When, in fact, the very diagnosis of CM that dictates that as part of the disease presentation.
Below I am sharing 4 things about living with CM that I have found to be the most challenging to explain to others in the hope that it will shine a light on this condition and encourage better understanding.
1. The line between “having a migraine” and “not having a migraine” becomes inexplicably blurred
My heart aches just typing that out, because it rings so true to my experience and has been one of the hardest things to explain to others. Often I am asked “did you have a migraine yesterday?” or “do you feel better today?”. It seems like an easy question, but is actually difficult to answer. Because my migraine attacks are so frequent, their “pre pain” and “post pain” aspects blur the lines between attacks. My experience of CM is that I live in a state of constant head pain, the only real change being the degree of that pain.
Most of my pain presents behind my eyes, and they are sensitive every single day to the world around me (driving, going to the grocery store, interacting, screen time, light sensitivity, etc…). My head pain can ramp up within a matter of minutes to a full blown migraine, leaving me nearly constantly teetering on the edge and having to severely monitor and limit my activities. Cancelling plans is a challenge that I struggle with almost daily. Some days it is because I am actively experiencing an attack and at other times it is because I know that my threshold is so low that doing anything at all will tip me over the edge.
2. Triggers become less straightforward when living with CM
“Do you know what your triggers are?” — this question used to make me cringe when I was first diagnosed with CM. I often wanted to shout (in a quiet voice) at the person asking me, “um yes, it seems like life is my trigger!” When you experience migraine attacks on over half the days in a month, and the line becomes blurred between having a migraine and not having one; another thing that can become blurred is the clarity of your triggers.
On my hardest CM days (sometimes weeks), simply existing in the world is like walking through a booby-trapped minefield. One wrong step, and my head will explode in pain. Sometimes it is from a well known trigger (traveling, bright lights, large groups of people, lack of sleep), but often, it is unclear exactly what specific trigger or combination of them has triggered a painful episode.
For those experiencing episodic migraine, identifying and avoiding triggers is often a very straightforward and effective way to manage their condition. I find that for many CM patients, it often feels like the onus is put on us to understand the minefield we are walking through, even when it’s impossible to do so and any step could set off a bomb. Please be sensitive when asking this question, and know that it is possible to experience CM even if you “know your triggers” and work diligently to avoid them.
3. Treating acute CM pain can be a complex balancing act, most rescue meds require monthly rationing to avoid Medication Overuse Headache
Almost every migraineur has their particular “favorite” rescue medication. There are a myriad of choices, and each person must find, through trial and error, the ones that work best for them. The complication with CM is that most rescue meds require monthly rationing to avoid Medication Overuse Headache (MOH). Although this is a dilemma that many with episodic migraine face also, it is often a daily struggle and extreme stressor when living with chronic migraine. By its very definition, every CM patient experiences more migraine days per month than “non migraine days”. This means that even when you are in extreme pain, with the potential to escalate to downright debilitating, you cannot treat it with rescue meds each time.
There are multiple reasons for this — but the most important is that by treating your pain too frequently, you can create a MOH, which is likely to prolong and worsen the pain cycle. In my case, the only thing that helps relieve my most excruciating migraine pain is a class of medications called triptans. I’ve been warned by countless neurologists over the years that more than 10 triptan days per month puts me at an exponentially higher risk for MOH. This means that every time that I take this medication, I am doing a mental calculation of how many I’ve already taken that week (or month). If I exceed my limit by too much, or too many months in a row — my neurologist and I have to come up with a new preventative tool to interrupt my migraine cycle. Usually this is done with a short course steroid taper (I have also tried infusions and nerve blocks in the past). For many, the only option is to turn to inpatient care for a cycle of 5-10 days.
4. It’s extremely frightening when the pain just won’t stop
This is something that anyone with migraine disease can relate to, but the experience of chronic migraine can take it to a whole new level. I clearly remember a day, about 8 months after my CM diagnosis, a few days after my first trip to the ER for migraine pain, where the pain was so unrelenting that it forced me to tears. My only thought was that I just needed it to stop. But almost immediately after coming to that conclusion — I was faced with the harsh reality that as badly as I needed that break, I couldn’t make it happen.
The pain was going to persist and exist on its own timeline. There was nothing I could do to make that “break” I so desperately wanted come to pass. This truth is so scary. When you have severe CM and are being treated by expert neurologists in the field, it’s terrifying when you realize that you are already working with the people who “know how to help you” and that even they can’t make it stop, at least not immediately.
I am passionate about spreading awareness about the broad spectrum upon which migraine disease exists. Every single migraineur deserves empathy, but it is up to us to raise awareness about the intense variation of each migraine warrior’s experience of this disease. My sincere hope is that by speaking up for the CM community, there will be greater awareness and understanding of those of us living on the far right end of the migraine bell curve, the CM warriors.
All my love,
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.
I have high frequency episodic migraines. And a lot of these things ring true. The fear when you go to the ER and they say “we can’t help you beyond an IV of meds” and send you back to your neurologist for pain management. It’s a frightening reality to know that the pain isn’t going away, but instead you are forced to live with it. And often I don’t know when my episodes start or end, because they happen so frequently, and without warning or cause – it’s awfully hard to say “yes I’m feeling better” or “no I’m not feeling better” because when you’ve been in pain for two weeks straight, those definitions become hazy. Wonderful article.
Yes that blurring of attacks makes answering those questions SO hazy and difficult. Sending you endless love and understanding. Thanks for reading xx
Hey Natalie. First off I want to say thanks for sharing your experiences so eloquently. It seems there is a lot of information out there on the internet that is more based on research and information but not much written by individuals chronicling their experiences.
I’m in the early stages of realizing that I may suffer from migraines. For as long as I can remember I’ve been prone to headaches, and it often didn’t take more than walking for a few minutes in the heat or freezing cold weather to trigger it. I love hiking, but I dread uphill hikes because it gives me headaches. I always figured I just wasn’t drinking enough water and was dehydrated, but I’m beginning to suspect it’s a lot more. About a year ago I began to suffer from extreme light sensitivity. As a person who LOVES being in the sun and on the beach and natural light streaming into my room, this has been really tough. While it doesn’t ALWAYS set off a headache right away (or at all), it feels like I’m having bricks thrown at me and my vision is constantly filled with dark flashes. I don’t really know how to describe it other than this: when you look at a bright light, look away and see the outline of whatever was in your field of vision when the light was there, this is what I experience almost all the time when I’m in any amount of light. Even when it’s cloudy sometimes.
The other day, ironically not long after speaking on the phone to a doctor who confirmed it may be migraine related, I looked in the general direction of the sun for just one moment and it ruined the rest of my day. My vision was all wonky and I even began to feel disoriented. I had to drive home 20 mins and near the end of the drive my fingertips started tingling. As I write this sitting in a cafe with bright lights, I’m feeling my vision starting to get messed up again.
Anyway, hoping to get a little insight on others’ experiences on here by reading your blog so thanks again for sharing.