Chronic migraine is:

An estimated 11-15% of the adult population of the US meet the criteria for Migraine. And about 1-4% of those with Migraine meet the criteria for Chronic Migraine (CM). Chronic Migraine is defined by the International Classification of Headache Disorders (ICHD-3) as:

  • headache days on 15 or more days per month
  • for a period of 3 months
  • with at least 8 headache days fulfilling the criteria for migraine.
Source: Migraine Again
Chronic Migraine Awareness stats and Impact

I track my migraine attacks to see what sort of intensity they are and duration. Mostly to see if medication is having any effect at all on them. In the last four months I have had 2 days without a migraine. Rather just that sort of headache that comes before a migraine but it never became a migraine. 2 days. But this month I also had 2 days of lower intensity migraine attacks so that was something anyway.

My point being I basically have a migraine attack every single day. Once in a while I don’t. And that is awesome. It has been this way for well over a decade. I would say about 15 years or so I have had daily migraine attacks and 20 or so years I have been chronic, which is 15 or more migraine attacks a month.

I have been non-responsive to migraine preventative medication used to reduce migraine attacks in frequency and intensity. Sometimes I get mild results in a reduction in intensity for a short time but it never lasts.

Migraine abortive medications, called triptans, do work for me most of the time if taken right away. At least for some of the day. Problem with them is one can only take them 2 days a week and when one gets them 7 days a week that is a bit of an issue when it comes to quality of life.

Chronic migraine affects approximately 1-2% of the world population.

This one fact is important to note only because I have had several people tell me it is so ‘odd’ I get migraine attacks so often and it Must be something I am Doing or Not Doing because they have never heard of chronic migraine. There is a massive stigma here with chronic migraine due to this. Because they have not heard of it they cannot comprehend it. I must be faking it. I must be causing it.

Work and life

Chronic Migraine is a time thief, causing those living with it to miss an average of 63 days of work, school, and family time over a 3-month period, including time that was less productive.

My Chronic Migraine

90% of victims lose normal functionality.

WHO

Another massive problem with chronic migraine attacks is the huge affect on my capacity to function in the workforce. Obviously with daily attacks I worked with them. But this was presenteeism. I Worked with them but my functionality while at work was always compromised in different ways and to different levels of severity. Sometimes severely. And Also adding to the problem was absenteeism because on severe attacks with severe pain and severe symptoms I did not go to work and missing too much work was an additional stessor because for some reason employers do not like this at all.

Another problem with working with daily migraine attacks not mentioned in this stat is the mental end emotional toll of working through that level of pain day in, day out. It shrinks your life because you only have so much pain tolerance. And then it just work and recovery from work. And the toll, well, let’s just say depression is inevitable. Or it was for me. And it became severe.

However, it doesn’t just affect work. It affects one’s social life. Education. Relationships. All aspects of one’s life are impacted.

Disability

On a global scale, migraines represent the 6th highest cause of years lost due to a disability.

WHO

Going permanent disability for just chronic migraine is almost impossible but it shouldn’t be given the severity of it. But I will say this, I lost a lot of time to short term leaves, over and over, and a long term leave as well. Because of treatments, stress leaves, vertigo, depression, suicide attempts… if you want to see the Impact all you have to do is trace the reasons I had short term leaves for and you can see how the impact gets more severe over time.

We are more likely to develop anxiety or depression. There is that fact. I think working with that level of pain for years and years… who wouldn’t? But, I am aware there are other reasons for the comorbidity.

When you go Chronic

There’s a 3% chance of a patient transitioning from episodic to chronic migraines within a year. (AMF) The incidence of transformation from suffering episodic migraines to a chronic migraine disorder is 3% per year. Additionally, 6% goes from low-frequency migraines (1–9 days/month) to high-frequency migraines (10–14 days/month).

Medical Alert Help

I started out at around 6 migraines a month and progressed fairly fast to high-frequency migraine attacks where I stayed for some time. Then once I went chronic it stayed there when I was taking my Masters. I took a break from going for my PhD due to this and took a job… that smacked me into daily migraine attacks and I have not been lower since. I have fibromylagia which complicates migraine disease a lot. In a way, I do wonder if it pushes one into chronic as well. Pain begets pain. And both involve central sensitization. I am not sure. All I know is that it progressed and never improved no matter the medication.

That is not to say one Stay chronic once one is. That is not a fact. One can go back to episodic, back to chronic, back to episodic … and even back to episodic and stay there.

The chronification is reversible: about 26% of patients with chronic migraine go into remission within 2 years of chronification.

Chronic Migraine: Risk Factors, Mechanisms and Treatment

Risk factors to going chronic

The most important modifiable risk factors for chronic migraine include overuse of acute migraine medication, ineffective acute treatment, obesity, depression and stressful life events. Moreover, age, female sex and low educational status increase the risk of chronic migraine. The pathophysiology of migraine chronification can be understood as a threshold problem: certain predisposing factors, combined with frequent headache pain, lower the threshold of migraine attacks, thereby increasing the risk of chronic migraine. Treatment options include oral medications, nerve blockade with local anaesthetics or corticoids, and neuromodulation. 

Chronic Migraine: Risk Factors, Mechanisms and Treatment

I can’t say what caused me to go chronic. I do believe fibromyalgia made me have a lower threshold for having an attack which made them increase persistently over time. Another factor is that fibromyalgia causes very poor sleep quality and insomnia and poor sleep is a migraine trigger. The fact isn’t that I went chronic but that I have never been able to get back to episodic. I have in fact gone daily but That was clearly do to the stress of working with pain, that increased the migraine attacks from chronic to daily chronic attacks.

Migrelief - Outsmart Your Migraines

Migraine Again breaks these factors into what we have control over and what we do not

Nonmodifiable risk factors (those that you cannot change) include genetic factors, female sex (prevalence largest in mid-life), Caucasian race, worse socioeconomic status, low education levels, and head injury.

Modifiable risk factors (those that you may be able to change) include medication overuse, ineffective acute treatment, headache symptoms (like allodynia, nausea), caffeine use/misuse, smoking, sleep disorders like snoring and sleep apnea, stressful life events, and comorbidities. Common comorbidities include depression, anxiety, asthma, chronic pain disorders, and obesity.

The factors I have here are: genetic, being female, Caucasian, allodynia symptoms, smoking, sleep disorder due to Fibromyalgia, stress always, depression, asthma, and chronic pain. So a lot.

And the idea is to look at these and try to manage the ones you can to bring you back into episodic. Like, I have treated my sleep, manage my stress, treated my depression, asthma is treated, I am doing pain management as best I can. Not sure how one modifies allodynia since that is a symptom of FM as well and it just happens. After I get a decent exercise routine, which is extremely difficult with pain levels and vertigo I am to quit smoking. I used to drink caffeine like crazy and barely do now. But nothing I have ever done has had any impact so I am complicated like that. However, now that I am permanently disabled I find it easier to manage stress. And due to that, I do occasionally get that migraine-free day or lower intensity day…. that is different than working where I never had a migraine-free day or lower intensity migraine.

In other words, it is Complicated. You can be aware of your factors and you can alter them and still be chronic. It is maddening. And still not respond to medication. But that is not the story for everyone. Some people do go back to episodic. Some people do respond to medication very well indeed. My story is not everyone’s story. But it is the story of some of us.

Conclusion

Poem: Dancing on the Dagger's Edge

I can give you facts and stats but the fact is the impact of chronic migraine disease on a person is profound and brutal. I doubt I can really explain the depth of it. I can say living with it caused 2 suicide attempts and maybe that might give you a slight glimpse into the hell of it. Or that suicidal ideation while I was working was extremely common. Maybe that might help understand how horrific it was. I never wanted to die but I was desperate for the pain to end. Desperate. And it just never did no matter what medication they put me on. No matter what they tried. And working like that? Literally a form of torture. But a silent one that no one sees. I was screaming for more than a decade and not a sound was heard.

It ruins your life. It ruins any ambitions you have. Any career you want. It can harm your relationship. Impair your social life and what you do maintain is very minimal and very mellow… and always with the potential to be cancelled. It follows you on vacation and means even vacations must be mellow and some places are literally out of the question. Some activities are out of the question. You always have to think about triggers. Every day is how to Manage This Migraine pain and symptoms as best you can. And then This One. And then This One. Of course it is exhausting. Of course it takes a mental and emotional toll on you. Of course it is a struggle to survive but survive we do. However, some of us do not and it should be noted risk factors of stroke, heart attack and suicide can kill us and have in the migraine community.

Some migraine stats
Long term effects of chronic migraine

See more on migraine

Migraine awareness: Yeah, chronic migraine does suck
Chronic Migraine impact study
Chronic migraine and suicide awareness

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4 thoughts on “Chronic migraine awareness stats and impact

  1. Nikki,
    Your last paragraph totally sums it up. Yes, it ruins your life! Yes, it has impacted my social life big time, changed my career path, changed vacation plans and some activities are just out! Every minute of every day revolves around being careful, watching triggers. Thank you for being so open & honest as always. Appreciate your blog! Keep on going……

    Liked by 1 person

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