Preparing for Migraine-Related Appointments

Posted on by Beth Morton

From Primary Care to Headache Specialists, First Visits to Follow-ups

For many seeking treatment for migraine, your first appointment might be with a primary care practitioner (PCP) or general practitioner (GP). However, if migraine attacks continue to escalate or the treatments your PCP/GP recommends don’t help, you might be (and should get) referred to a headache specialist (HAS) who has more specialized knowledge in headache and migraine management. 

  • Do you want to learn more about Headache Specialists and their training? Check out this MigraineChat AMA transcript.
  • Do you need to find a Headache provider? If you are in the US, the NHF and AMF have directories to help you find one near you. The Migraine Trust has helpful information for those in the UK.

Preparing for a first visit with a PCP/GP or HAS is similar, though a few key differences stand out. Once you make that first appointment, the goals are to both gather information to bring to your appointment, and also consider your questions and expectations for treatment.

In this document, I provide some tips for first visits and follow up appointments:

First Visit Preparation: Your PCP or Family Doctor

If your first visit is with your PCP/GP, you might not have a lot of time; by some estimates, just 18 minutes! It’s likely your PCP/GP will have a couple of goals: 1) review your history and 2) formulate a treatment plan. You should have some say in the latter, so it helps to do a little preparation. 

Appointment Preparation: Gather Your Records

First, complete any new patient paperwork you are sent (if you are sent any). This might include some of the information below, so it will help limit gathering redundant information. If you weren’t sent new patient paperwork or if you were, but it doesn’t include the following, these are some additional suggestions on what to gather before the appointment. Even if your doctor can access your records through an online portal, it might help to organize the information below into a shorter summary to save time during the appointment. 

Medical History

  • Your personal medical history: diseases/conditions you have been diagnosed with, the symptoms you have, past test results, and any surgeries or procedures you have had (current and past). 
  • Treatment history:
    • A list of all the treatments you are currently using with dosages (if applicable) and how long you have been on them (include over-the-counter treatments, devices, etc.). 
    • All treatments (focusing on migraine) you have used in the past, with the highest dosages, side effects, and why you stopped. 
    • A list of any allergic or adverse reactions you have had to treatments in the past.
  • Family history: diagnoses and conditions, and major surgeries for immediate relatives like parents, grandparents. and siblings. 
  • Your health care team: the healthcare providers, doctors, and specialists who help you manage your headache, migraine, or other conditions.

You can find my health summary template here to help you organize.

Headache/Migraine Symptoms

If you don’t track this already, tracking some daily information as soon as you make your appointment can be helpful for your doctor. There are apps (Migraine Buddy, N-1) that collect this information and allow you to see/print summaries over time (sometimes a paid feature). Alternatively, I wrote about a way to use Google Forms and Sheets to track symptoms or you can use a low-tech paper tracker. 

What you record is somewhat personal to your migraine experience, but some basics include:

  • Did you have a headache or migraine attack, or was it a headache/migraine attack-free day? 
  • Qualities of headaches (and migraine attacks):
    • Pain location: was it one-sided or both, behind the eyes, did you have neck pain, etc.?
    • Pain sensation: stabbing, throbbing, dull, sharp, crushing, tingling, burning, pressure, constant
  • Other symptoms you are having: aura, nausea, light or sound sensitivity, sensitivity to touch, brain fog, etc. 
  • Overall symptom severity: I prefer using the Traffic Light Method for my migraine symptoms, but you can also use a traditional 0-10 numeric rating scale. 
  • Did you need an acute treatment and if so, which one(s)? Did they help? Don’t forget OTC treatments, supplements, and devices. 
  • Any other relevant information like suspected triggers, times of day migraine attacks are most common, when you start/stop a new treatment, etc. 

Whatever tracking method you use, try to summarize the key points above before your appointment: a summary of the number of headache/migraine days (and symptom free days), number of days you needed acute treatments (by type), most common migraine symptoms, most frequent suspected triggers, a summary of how your migraine attacks feel, and what works or doesn’t work well to treat the attacks. 

During the Appointment: Sharing Your Symptoms & History

There is a good chance the doctor will start the appointment by asking something like “what brings you here today?” I like to prepare a 30-60 second summary of the reason for the visit. The highlights typically include:

  • I’m experiencing… [symptoms].
  • It’s been happening for… [time frame].
  • I’ve tried… [treatments] and have found these to be… [effective/ineffective].
  • This has an impact on my ability to do ____ [work/school/socialize/other] is….
  • I’d really like to talk about… [top few goals for the appointment].

Once I’ve given the basics of why I’m there for the appointment, the appointment might shift to gathering your medical history. By preparing the information we discussed earlier, you can save a lot of time. Still, with a short appointment, it can be hard to cover everything. If I had to pick the things to highlight, it would be:

  • Reviewing migraine attack frequency, symptoms, and treatments tried 
  • Reviewing any other relevant symptoms, conditions or diseases you have
  • Sharing how these impact your ability to function

With any luck, your doctor will dig deeper and take a thorough health history. 

If you have any other related symptoms or conditions affecting your headache or migraine, share that, too. Why? Some older, “off-label” migraine treatments are borrowed from other conditions. If you have these conditions in addition to migraine, it might make one a better fit than others. 

  • Are any of your other conditions or symptoms particularly bothersome (mood, sleep issues, other chronic pain, etc.) and complicating to migraine/migraine treatment?
  • Are any other conditions or symptoms affecting your ability to treat or manage migraine?

During the Appointment: Creating a Treatment Plan

Once you’ve gone through a thorough health history, your doctor will likely start talking about treatment options. This should be a conversation, i.e., you should have some say in all this! Some to consider asking:

  • Do I need a preventive treatment or preventive treatment change? *Preventives are used regularly to keep migraine attacks from happening.
    • If you aren’t on one, is it time to add a preventive?
    • If you are on a preventive treatment already, is it working as well as it could or should you adjust it, change it, or add to it? 
  • Is there a better/safer/newer acute treatment or a different mode of administration for a current one? *Acute treatments are used only when needed to stop acute migraine attacks.
    • Some acute meds are administered non-orally and might be better based on your symptoms or comorbidities; e.g., if you experience nausea, vomiting or have any issues with particular modes of administration. 
  • What would a “rescue” plan look like in the situation where your usual abortives aren’t working? In other words, what treatments can you have if acute treatments fail, so that you can avoid the emergency room?
  • Can you set up a plan to stay on your treatments should your current way of accessing them – e.g., insurance or manufacturer rebates – change (i.e., have a backup plan)? 

With a preventive, acute, and rescue treatment plan set up, you might want to ask:

  • What can you expect from new treatments you’ve been prescribed?
    • How long until new treatments might work, how well might they work, and the major side effects and how to mitigate them should you experience any. 
    • How and when to take/use each treatment. If it is an injectable, nasal spray, or device, ask for a demonstration.
    • Access: will you need any insurance prior authorizations, is there a manufacturer’s patient assistance program, can you try samples first, etc., and who is coordinating any prior authorizations or applications (i.e., will your doctor’s office or do you need to do anything).
      • If insurance denies it, ask what the backup plan is for accessing that treatment or an alternative. 
  • Do you need any tests? If so, what are they for? What should you expect them to show? When and how will you get results?
    • Remember, migraine is a diagnosis of exclusion. Many tests will be normal, but sometimes doctors run them to make sure there isn’t anything else going on. 
  • Are there other pieces of your treatment plan to work on: sleep, mental health, diet, exercise/movement, etc.?
    • Are there recommendations for any of these areas?
    • Do you need referrals out to any subspecialties (psych, dietician, neuropsych, sleep, GI, physical therapy) or other specialists for help with comorbidities or lifestyle changes?
  • Are there any other general barriers you or your doctor foresee in sticking to the treatment plan? How can you anticipate and address these (e.g., other access barriers)?

Tip: If you are like me, migraine brain fog can mean I forget details pretty quickly. Take notes during the appointment, too. If it’s easier, bring a friend or family member so you can concentrate on the discussion while they take notes. Your HCP might also use an electronic visit summary system that is available through your patient portal. It can vary in how detailed HCP notes are, but these can help jog your memory after an appointment.

Bonus Topics:

Since appointments are short, you may not have time to get to some of the following. However, if you plan to follow-up with the HCP, you can bring these up later. 

Share a little about how you like to approach appointments:

  • do you like to do research and discuss it in appointments, 
  • do you prefer to have information presented to you, 
  • do you like to make decisions together with your HCP, or do you prefer to be advised on the best treatment option?

It can also be helpful to remind the PCP of ways to make each appointment go smoothly. For example:

  • Share how they can adapt the environment for to reduce painful or triggering stimuli (turn down lights, reduce smells and sounds)
  • Remind them of your need for note taking or having someone with you
  • Ask about the best ways to get in contact between appointments
  • Ask about when and how to make your next appointment

Additional context on how migraine impacts your life:

  • How does migraine affect work, social life, family life, school?
  • What do you do or not do because of migraine?
  • Your goals for treatment or for improving your function?
    • What would you like to be able to do that you can’t right now (because of migraine)?
    • What treatments would you like to try or maintain (or stop)?

First Visit Preparation: A Headache Specialist

In reality, a headache specialist appointment might not be much different. Review all the suggestions above including:

  • sending (or preparing) all your relevant medical records and
  • reviewing and prioritizing your questions. 
  • If you have a diagnosis from a previous doctor, confirm that they think it is correct. 
  • Ask if there are additional treatments that your PCP/GP didn’t prescribe that might be useful. Sometimes, the newest treatments aren’t on the radar of PCPs.
    • Review all the same questions about access, effectiveness, proper use, expectations, etc. 
  • Ask if there are additional tests to be done. 

Follow-up Appointments

You shouldn’t need to revisit your entire history, so instead, review the above information with a focus on what has changed since your last visit. 

  • Update them on your progress since the last visit.
  • Explain how the treatments they prescribed worked:
    • Effectiveness (on all symptoms): how have your headaches/migraine attacks changed
    • Effectiveness on general function levels, ability to work, socialize, etc.
    • Side effects
    • Barriers experienced accessing treatment(s)
  • Any changes in your personal history: other conditions or new diagnoses/symptoms, additional surgeries/procedures/test (not linked in portal)
    • Any relevant changes in immediate family member’s health
    • Updates to headache history

What questions to consider 

  • Do I need a preventive or acute treatment change?
    • Are these working as well as they could or should you tweak it, change it, or add to it? 
    • Is there a better/safer/newer acute treatment or a different mode of administration for a current one?
  • Are your rescue treatments working? Sufficient? Have you needed to visit an ER or urgent care since your last office visit?
  • Review what you can expect from new treatments you’ve been prescribed (as above). 
  • Review whether any tests are needed (as above).  
  • Discuss whether there are other pieces of your treatment plan to work on or specialists to consult (as above). 
  • Have you had any access issues or issues with staying on your treatments (including side effects)?

Summary & Supplemental Resources

This was… a lot. And chances are your appointment will not be long enough to cover everything here. Please consider this an outline of the top things to discuss in an appointment with the caveat that appointments rarely go as planned. Consider how much time you have with the HCP and adjust accordingly to prioritize. If you run out of time, ask if you can schedule another appointment sooner rather than later.

If I had to prioritize three things, I would suggest:

  • using the health resume (below) to organize your medical history and some form of tracker to record current symptoms,
  • choosing three top questions – anything about diagnosis, treatment, testing, etc. that you most want to cover, and
  • making sure to clarify any recommendations for new treatments – including setting expectations about efficacy and side effects.

Last, I’d make sure to schedule a follow-up. For older migraine treatments, devices, and supplements, it can take up to 3 months to see an impact on your symptoms. It might take longer if 1) your doctor suggests a few treatment changes and wants you to implement them one at time, or 2) if you choose (fairly) to taper up to the therapeutic dose of a medication slowly. Ask what a reasonable follow-up appointment time would be and be sure to get on the schedule.

Resources:

This post has been a work in progress for months. The question of how to prepare for a new doctor visit comes up a lot in MigraineChat, so even though this still needs some editing, I wanted to get it up in this first draft form. Feel free to send suggestions through the contact page.

Published by Beth Morton

A writer, advocate, and researcher living with chronic migraine and fluffy cat in the mountains of Vermont.

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