Migraine Tip of the Month: Don’t go to your first appointment for headache evaluation empty-handed
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In a previous issue of this magazine we published an article that went into detail about preparing for your first visit to a healthcare provider for evaluation of your headache disorder. Consider that article the literary equivalent of packing for a two week vacation in Istanbul and this “tip of the month“ to be the bare essentials version (clean socks and underwear, toothbrush, a change of clothes and passport).
Studies have demonstrated that over 90% of patients who electively seek out a healthcare provider for recurrent headache have migraine, and there is consequently a pretty good chance that you, too, have migraine. If the healthcare provider you are seeing is experienced and adept at headache diagnosis, he or she has heard your history before…quite likely many hundreds of times before. While the individuals with migraine obviously differ, their stories do not; there is a very finite number of headache histories linked to episodic or chronic migraine, and it is a fact of medical life that a great deal of what a headache patient is determined to tell the provider will be a little use in diagnosis or management. Mostly chaff that serves only to obscure the wheat.
What does the provider really need to know?
An anchor in time: when did you first begin experiencing a problem with recurrent headaches?
Has there been any significant change in the character or frequency of your headaches over recent months? (1)
What is your current burden? (2)
How long do your worst headaches last?
Are your headaches ever pulsatile/pounding/throbbing?
Are your headaches ever accompanied by nausea? Light sensitivity? Sound sensitivity?
What have you tried for headache prevention? (3)
What have you tried for acute headache treatment? (4)
Have you ever had a brain imaging study? If so, what kind and where? (5)
In most cases a “yes” answer simply implies there has been a change in your migraine…not the new development of a brain tumor or other “secondary” cause of headache (see this issue’s “Myth of the Month” for more on this). If your headache disorder has worsened, is there a possible precipitant behind the worsening? a change in hormonal status, including contraceptive method? a head injury? COVID infection? an increase in stress level?
There is no one perfect method for “weighing” headache burden. What we tend to do in clinic is ask patients: on how many of the last 30 days did you have enough of a headache to at least think about taking some type of medication for it, wish that you had some type of medication to take for it or in fact take medication? Out of those total “headache days”, on how many days were you unable to perform your routine activities for at least one hour consequent to the headache and associated symptoms. We call this the “headache frequency/severity profile”. If a patient has had a total of 20 headache days within the previous month and was functionally incapacitated on 6 of those days, his/her frequency/severity profile for the past month was “20/6”.
This information is important to the provider both to help guide the selection of a prevention therapy if/when one is needed and also to assist in doing battle with the insurer to obtain authorization for coverage of the desired therapy. As regards the latter, insurers may be so intent on protecting their financial bottom lines that they require the provider designate when the previous prevention medication was prescribed, for how long it was taken and whether it was stopped due to ineffectiveness, side effects or both. Try to bring with you to clinic a list that details what specific medications you have tried for migraine prevention, when those medications were prescribed, at least roughly how long you took them each of them and why you stopped them.
Once again, knowing what medications you’ve tried for acute headache treatment and how you responded to them will help guide your provider in choosing an appropriate treatment regimen for dealing with your migraine symptoms as they occur and also assist in the near-inevitable battle with the insurer. For example, before your insurer will provide coverage for one of the newer medications for acute migraine treatment such as ubrogepant (Ubrelvy) or rimegepant (Nurtec) you may need to have tried and failed 2 or even 3. Again, try to bring with you a list of the specific medications you have tried for acute headache treatment and how you responded to them.
Generally speaking, your headache history and the lists of prevention and acute medications tried in the past will be far more useful to the healthcare provider than a fistful of CDs containing previous brain, neck and lower back imaging studies. Even so, do your best to obtain a formal report from your most recent brain imaging study and, if possible, a CD containing the images as well to bring with you to your appointment. There currently is no “universal” electronic medical record system used by all institutions and medical providers. Instead, it is a mishmash of EMRs, and unless your imaging study was performed at the institution where you are going now for your evaluation it is quite likely there will be nothing in the EMR related to the imaging study.
A particularly effective way to gather together your headache history is to go to BonTriage.com, a novel instrument created by clinician scientist experts in headache medicine and intended to assist in migraine diagnosis and management. Complete the deep dive questionnaire, and bring the comprehensive narrative report generated to your appointment. That report will contain ALL the clinical information needed by your provider, and it is free. You can review the report with your healthcare provider in a fraction of the time it otherwise would take to collect the information…resulting in more time devoted to developing a treatment plan.
I can assure you from many years of bittersweet experience that your bringing with you to your evaluation the information and materials indicated above will be a tremendous help to the provider in both diagnosing your headache disorder accurately and in working with you to develop an appropriate treatment strategy. To come in empty-handed and start regaling the provider with your “17 different types of headache” will take you both down a far less productive path.
