When we finally get an appointment to see a headache specialist or a neurologist, it is important to be as prepared as possible. We may have had to wait months for this appointment. You may have a million thoughts and migraine questions in your head right now. Let’s sort through what to tell your neurologist about your symptoms and the main questions you want answers to.
Using the time leading up to your appointment to gather the necessary information to make the meeting as productive as possible is essential. Make sure that you know your migraine attack history, as well as your medical history well enough to communicate the information to the doctor. Writing this information out before you go will help you organize what to tell your neurologist during your appointment.
**While Migraine Strong writes about the latest in migraine treatments, this is not medical advice. We are patient educators and all information you read should be discussed with your doctor.
Key Information to Tell Your Neurologist
Your migraine history will include when the attacks started, how often you have them, how severe or debilitating they are and a list of symptoms. These are important pieces of information to tell your neurologist. The process of compiling this information will help shape the specific questions you may have during your appointment.
Use a headache diary or tracking app
To help organize your questions and know what to tell your neurologist, it’s important to note your migraine attack patterns. I like Migraine Buddy because it is simple and I can keep track of my attacks on my phone. It will also allow you to print reports that can give you a snapshot of what the last three months of your migraine disease looks like for the doctor to review.
Calendar option for tracking migraine attacks
If Migraine Buddy is not your cup of tea, use a calendar and write your attack days on the calendar. Also include what medications you took and how it affected your day. We like to make this simple. Use a 1-4 scale. 1 is you were able to still function throughout the day and 4 is in bed, on the couch and not taking part in the day. The numbers 2 and 3 can be decided on by you to help you determine the level of severity for each attack.
One thing you need to avoid is handing the doctor an actual diary of 50 pages and ask them to make some sense of that in the 15-20 minutes you have for your appointment. Make sure anything you are handing them is no more than one page and the interpretation has already been done and the information compiled. A quick glance by the doctor is all it should take for them to get a sense of the frequency, severity and length of attacks you have been dealing with over the past few months.
Make sure you have a list of your past surgeries and hospitalizations compiled as well as the medications you have taken. Make sure you tell your neurologist about the dosages and why you stopped taking the medications and any side effects that made the medications intolerable or if you have allergies to certain classes of pharmaceuticals. (I keep a list of surgeries and medications in the Notes app on my phone so I always have them with me for quick reference.)
If you have had specific tests that have to do with your head and neck (MRI/CT etc.), send copies of those to the neurologist before the appointment (or take copies with you). It is particularly important for them review them.
So many of us think that we are the only ones with migraine in our family…until we start asking a few questions. It might be that Grandma used to have some ‘bad spells’. Maybe Mom would occasionally have a ‘bad headache’ and have to go into her room and lie down.
It took a while for my family to equate their ‘headaches’ with migraine because none of them felt that their head pain was as bad as mine. Migraine is a spectrum disorder and we will have some attacks that are mild and some that are severe. But they are all migraine, especially if you have sound, light or scent sensitivity during the attack. Ask around your family members and see what you can find out about who has had headache in the past.
Perhaps you know of a relative that has struggled with dizziness or disequilibrium. It’s possible that they showed symptoms of vestibular migraine.
Be able to explain your migraine
The below paragraph are migraine questions, the answers to which will help your doctor understand important information. They are key descriptions of your condition and what you should tell your neurologist during your appointment.
- What does it feel like?
- Do you have mostly pressure in your head or ears?
- Is it a throbbing, stabbing, burning, or a sharp sensation?
- Is it mostly on one side of your head, in your forehead, always on one side, in the back, on the top, in your ears?
- Do you wake up with it in the morning, does it come on during the day, after exercising, before, during or after weather changes?
- How long do the attacks last, how long have you had migraine, how severe is the pain of a typical attack?
- What triggers your attacks? The more specific you can be the better.
Questions to Ask Your Neurologist About Migraine
The questions you ask your neurologist will likely vary depending on where you are in your migraine journey. What are you looking to understand about migraine and your own condition?
Think of the below as FAQs or migraine questions that will help you feel like you have a solid plan to have more migraine-free days. Make sure to choose the most important ones for you and keep them organized with the most important questions at the top. That way you will cover the most important questions at the beginning of the appointment.
Migraine questions to ask your neurologist
- What preventive should I try? (This may be determined based on the type of migraine variant you have.)
- If already on a preventive, can I bump up my current dose? Can I add another preventive? Something at a low dose?
- How long do you recommend trying each preventive before trying something else?
- What supplements do you recommend taking for migraine?
- What should I take as an acute medication and how often should I take it? If the first attempt isn’t helpful, is there a Plan B to keep me from calling your office or going to the ER?
- Can I take something for nausea as well? (Orally disintegrating tablets sometimes have aspartame in them, So be aware if you are sensitive to that.)
- What do I do if I need to take the acute medication more often than 10 times a month?
- What do I do if I have an attack that lasts more than 3 days?
- Can you help me get out of rebound? Can I use a steroid taper? DHE infusion? Other non rebounding medications?
- How can you help me stay out of the ER?
- Do you offer Toradol injections in the office?
- If not, should I go to Urgent Care?
- Do you offer infusion therapy for intractable situations?
- What should I take as a rescue medication if my primary acute medications don’t work? (For vestibular migraine this might be a vestibular suppressant like a benzodiazepine.)
- Do you offer nerve blocks and when do you recommend them? How often can I receive them?
- Is Botox an option?
- Are any of the CGRP antibody meds an option?
- Aside from meds, what else can I do to get these attacks under control?
- What are your thoughts on the Cefaly, Nerivio or gammaCore and other non pharmacological devices?
- What migraine diet and lifestyle changes do you recommend?
Lifestyle changes for migraine
Understand that many doctors may say elimination diets and other approaches are ineffective. Part of this is that there is little support for diet coming from doctor offices (which makes sense, as this is not their focus.) In their minds, that probably means there is less chance for success. Be aware of their bias and know that this part of the journey will likely not directly include their help. Migraine Strong will be by your side to assist you.
Being heard and finding the right expertise
In preparing for your meeting, what you tell your neurologist about your symptoms and history is key to coming away with an effective plan. So, get your ducks in a row before you go. Getting good answers to your migraine questions will help you better understand important actions you can take to help find consistent migraine relief.
Sometimes we get ‘stage fright’ or may feel intimidated or brushed off. Consider taking a loved one with you if you think having the support would be helpful. This can also help you remember what you talked about with the neurologist and suggestions they might have made.
Expectations for your appointment
You may feel like you have a good plan after meeting with your neurologist. However, it’s possible you may feel let down after the meeting that you have been waiting on for so long. In many locations, neurologists are in short supply. You may not get much time with them. Ask the person who schedules your appointment how long you will have with the doctor. This can help set expectations and help you organize your questions so that you cover the most important topics first. Know that you are not alone.
Additionally, your neurologist may be a general neurologist without great expertise in managing migraine. This doesn’t mean their plan won’t be helpful. If you are still struggling and have been seeing a general neurologist for some time, consider finding a headache specialist who might have more creative ideas to help you get you migraine under control.
How to quickly see a specialist for migraine
If you don’t have a specialist, this article has some helpful information for resources that can help you get better. Neura Health is an online headache clinic staffed by doctors, coaches and care concierges. Our Neura Health review article explains how the service works and why this is a great option if you are looking at a long wait to see a neurologist or headache specialist. The doctors are trained in headache medicine and can see you within a couple of days to help you set up your new migraine treatment plan.
As always, we are happy to discuss this article and other topics in our private Migraine Strong Facebook group!
Article updated from original publish date in January 2019.