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Diagnosing Chronic Migraine: The Magic Question

The majority of chronic Migraine patients are not diagnosed correctly. A recent study showed that about 80% of participants who had chronic Migraine were not diagnosed properly.

Yes Virginia, there is a magical question for diagnosing chronic Migraine and your doctor may not be asking it.

Chronic Migraine is suspected when the patient is feeling head pain more days than not. Migraine and headache specialists use ICHD-II criteria to pin down a chronic Migraine diagnosis, but because we cannot test for chronic Migraine, this requires questioning the patient. How patients are questioned can make the difference between an accurate diagnosis and missing the mark. This is important because there are optional treatments for those patients who are properly diagnosed.

At the 2012 Scottsdale Headache Symposium in Arizona this past November, this vital point was brought up on multiple occasions by multiple presenters. Simply asking the patient “How many Migraine days per month do you have?” makes sense since that is the answer they are looking for. However, it is surprisingly inaccurate for diagnostic purposes — who knew!

The presenters at the conference told physicians that this is a serious mistake. Instead, doctors at the conference were encouraged over and over again to ask a different question which almost always yielded wildly varying answers:

“How many headache pain free days do you have each month?” This means completely pain free, with no Migraine or head pain symptoms at all.

Now we all know that pain is only one single symptom of a Migraine attack, and Migraine itself is NOT a headache. But stick with me while I explain…

The truth is that most Migraineurs who have frequent attacks tend to dismiss mildly painful days or tension type headache because they are used to experiencing Migraine attacks that are very severe in nature. They don’t mention to their doctors that they feel lousy nearly every day, assuming that the mildly painful days were not important. Sometimes they don’t mention those days because they didn’t recognize their symptoms as Migraine. Sometimes they recognize them as tension type or other headaches mixed with their Migraine attacks, and leave them out of the discussion.

This is a big mistake.

The fact is, all head pain is very important in diagnosis and may lead you toward more targeted, effective treatment, even possibly resulting in switching back again from chronic Migraine to episodic.

This is the first line in how the ICHD-II currently defines chronic Migraine :

  • Headache (tension-type and/or migraine) on 15 or more days per month for at least 3 months

This actually means that you may have clearly identifiable Migraine attacks fewer than 15 days per month and still fall into the chronic Migraine category because you aren’t experiencing enough pain free days.

This is definitely a case of patients trying to answer their doctor’s question to the best of their ability, but not really understanding what the doctor is actually needing to hear.

Now that you know what doctors actually need to hear, does your answer change? Have you been giving your doctor what you think he wants to know, or what he needs to hear?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Headache Classification Subcommittee of the International Headache Society. “The International Classification of Headache Disorders 2nd Edition.” Cephalalgia 2004;24:8-160.

Comments

  • Bethany29
    5 years ago

    As a person with “Chronic Migraine” diagnosed now for the first time in my life when I was 30 years old, I want to say something. My headache specialist, who it took 30 years to be referred to, asked the questions above just as is said to do. The problem: because I HAVE Chronic Migraine, by definition: all the time, I didn’t KNOW I was having migraines. When she asked me about the frequency of headaches, etc., and when they began….I didn’t know, truly.

    The “Chronic” part of this disease put me into a constant dizziness. I had many many symptoms that were a result of this neurological issue all throughout my life. Never did I recognize any of it as headache or migraine. So, asking me about headaches was like talking Greek to a Spaniard.

    Ask the patient about their symptoms as they understand them to be. BE a doctor who truly understands the chemistry of the brain and knows what is happening when someone does have actual chronic, never-stopping, migraine. This is the only way to diagnose this disease without confusion and possibly missing the diagnosis.

    I now know when my head is “hurting” or I am having a migraine reaction. Before I was in treatment for chronic migraine, I had no idea how to differentiate anything because it never stopped.

  • beniceshaw
    5 years ago

    Thanks for the great article. I know that truthfully I don’t have any pain free days, and I have forgotten what it feels like to not feel some form of pain.

  • Mary Worth
    5 years ago

    Thanks for this great article Ellen. Botox has helped me so much I started counting only those migraine days I was unable to function. While emotionally it makes me feel much better to look back at the month and see low numbers, I will definitely change the count to reflect only pain free days when at the doctor’s office.

  • Cindi
    6 years ago

    Pain free or symptom free? The botox treatments are helping me tremendously with the pain, but not so much with the nausea, dizziness, confusion, light sensitivity, etc. These remain as steady as they were before the botox. I will track my days differently now too. Thanks Ellen!

  • Bethany29
    5 years ago

    Hello Cindi. 🙂 I understand what you are going through and just wanted to offer some encouragement and a thought for you.

    I have heard of botox as a treatment for migraine. I have never tried it. What I can attest to is what I have tried and that my results are so much more effective than what I’ve heard about botox.

    I have changed my diet, and I try to get on my treadmill (or outside) for a relaxed-paced walk for 30 minutes. Simply put: I have slowly (over the last year) been removing unnatural preservatives from my diet. I also (sadly) have learned that all chocolate, nuts, tropical fruits, and partially hydrogenated oils (trans fats) are also triggers. It has been a “journey,” but so well worth it.

    Cindi, I am no longer dizzy or confused daily! I suffered with those symptoms for 10 years before learning what would help. It’s still a little awkward for me to say out loud I have “migraine,” maybe you can relate? But ~ that aside, changing my diet and trying to walk 30 minutes at least 3-4 days a week has absolutely changed my life.

    Many smiles to you, and I hope you begin to feel better soon. Best of luck. 🙂 ~Bethany

  • Julie
    6 years ago

    I’m in the same boat as hangingbyathread. I wait to medicate when I’m over a level 6 usually because I don’t want to get into the rebound cycle. So everyday is a migraine day. It’s taken years to learn to try to function daily w/constant pain up to a level 6 w/o medicating, but I try all kinds of alternate therapies such as stretching, gentle exercise, ice, heat, meditation in a dark room, soothing relaxing music at a very low setting and total isolation-I shut off the phone, turn off all the lights, post a sign on my front door “Do not disturb” and block everything out. I take hot Epsom salt baths, use essential lemon oil on my temples and pressure points on my scalp that are very tender-I cannot use lavender at all, the smell is a trigger for some reason but some people prefer it but lemon works better for me. These work a little bit to calm and relax but will not totally take away the pain, but when it gets over a 6 it’s time for rescue meds. But every day is pain. With a recent diagnosis of FM and CFS I think that contributes to a majority of it. Now that I’ve just started Cymbalta and Lyrica I’m hoping that it will help. If not then I will continue on my current regimen as my headache doctor continues to try meds on me hoping to find the right combo.

  • Bethany29
    5 years ago

    Hello Julie~ 🙂

    I am so sad for you to read this. 🙁 How horrible to be living with that kind of daily pain.

    Something that stuck with me is when you said you didn’t want to get rebound headaches so you wait till level 6 before medicating. I can related to your thought process here, because I thought the very same thing…until my headache specialist (neurologist/MD) insisted I do exactly as she said. 😉 The reason the pain is so chronic is because it is being caused by a neurological issue that can’t catch up with itself unless you know how to treat it properly.

    Going to the doctor – a good headache specialist – to be sure you get tested and monitored is of course very important. That said, I have changed my diet and take a few supplements every day that specifically help that underlying neurological issue. I also walk 3-4 days a week for 30 minutes on my treadmill (or outside). This, in turn, results in a reduction in days I have pain and symptoms. I am now pain/symptom-free most every day! Because I have been where you are at, I just hurt for you, knowing how debilitating it is to live like that.

    You don’t need lots of pain medication – you need to treat what is causing the pain or you will never feel better. 🙁 I suffered for 10 years before learning this. My life has a bright future because of the freedom I have found from the daily pain/dizziness/nausea, etc.

    I just wanted to encourage you a bit and reach out. I’m so sorry that you are suffering from all that pain. Best of luck to you. ~Bethany

  • taralane
    6 years ago

    Thanks for the reversal of the question Ellen! How do I classify pain free days? When I have no pain at all, which is very very rare. I almost always have a migraine at some point during the day or evening or night which wakes me up. I ignore a lot of them an put an ice bag on some before going to the medicine cabinet. A migraine has to be over a level 5 for me to medicate. I just cannot use the 1 rescue med I have left on anything less than a 6-9 level migraine.

  • Bethany29
    5 years ago

    Go to this FB page: https://www.facebook.com/DrCarolAFoster

    It is my neurologist/headache specialist. The answer isn’t living with those levels of pain. It is eating appropriate for your neurological disease, Chronic Migraine, and treating the littlest headache before it becomes the big headache. Letting them get out of hand like that is what is keeping you in the daily pain. I lived with it for 10 years before learning this.

    There IS a way to get pain/symptom free 99% of the time. I did it. It took me a year now to slowly be working my way towards different eating habits, exercise habits, etc., but believe me it’s been worth it. 🙂

    Best of luck to you. 🙂 ~Bethany

  • Ellen Schnakenberg author
    6 years ago

    hangingbyathread – a day is 24 hrs. Midnight to Midnight. If you get head pain at any point in that 24 hr period, then it is not a pain free day.

  • caradrouin
    6 years ago

    I find that even with a “Migraine” diagnosis, other doctors that are not neurologists think (migraine schmigraine…hypochondriac) and fail to diagnose other things properly. Important things, like pneumonia, spondylolysthesis with partial paralysis, ruptured tendon…. and their failures and the subsequent results do not make them more vigilant or attentive.

  • Ellen Schnakenberg author
    6 years ago

    caradrouin – this is why it’s so important for us to be proactive patients. We know our bodies and need to be sure they’re taken care of. 🙂

  • sped
    6 years ago

    Definitely the Magic Question! I will track my migraines differently now. I never saw myself as a Chronic Migraine sufferer, but I believe that is the case. Thanks for your information.

  • FlutePlayer
    6 years ago

    Wow, that really is a revolutionary way to think about it, and the answer is much less nebulous. I feel like crap the vast majority of days, and don’t always think to include that in my calculation of number pure “migraine” days. I would think that could possibly make a difference for SSI application as well.

  • Nancy Harris Bonk moderator
    6 years ago

    Great information Ellen. Thinking of migraine pain in terms of how many days we don’t hurt instead of how many days we do, will be very enlightening for both the patient and doctor.
    Thanks for this relevant information.

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