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. Using that time to gather the necessary information to make the appointment as productive as possible is essential. Make sure that you know your migraine and your history well enough to communicate the information to the doctor.
*Use a headache diary – 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. The worst thing you can do is hand the doctor an actual diary of 50 pages and ask them to make some sort of 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.
*Medical History/Records – Make sure you have a list of your past surgeries and hospitalizations compiled as well as the medications you have taken. This includes dosages and why you stopped taking them 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), sending copies of those to the specialist before the appointment (or taking copies with you) is particularly important so that they can review them.
*Family History – 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 can have some attacks that are mild and some that are severe. But they are all migraine. Ask around your family members and see what you can find out about who has had headache in the past.
*Be able to explain your migraine – 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 – The questions you ask your specialist will likely vary depending on where you are in your migraine journey. What are you looking to understand about migraine and your own condition? Here are some questions to get you started with your appointment.
1. What preventive should I try? (This should be determined based on the type of migraine variant you have.)
2. If already on a preventive, can I bump up my current dose? Can I add another preventive? Something at a low dose?
3. How long do you recommend trying each preventive before trying something else?
4. What supplements do you recommend taking for migraine?
5. What should I take as an acute medication and how often should I take it?
6. 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.)
7. What do I do if I need to take the acute medication more often than 10 times a month?
8. What do I do if I have an attack that lasts more than 3 days?
9. Can you help me get out of rebound? Can I use a steroid taper? DHE infusion?
10. How can you help me stay out of the ER? If I do need to go to the ER, can you write me a note stating I’m your migraine patient and the protocol they should follow when I’m there.
11. Do you offer Toradol injections in the office?
12. If not, should I go to Urgent Care?
13. Do you offer Infusion therapy for intractable situations?
14. What should I take as a rescue medication? (For VM this might be a benzodiazepine.)
15. Do you offer nerve blocks and when do you recommend them?
16. Is Botox an option?
17. Are any of the CGRP antibody meds an option?
18. Aside from meds, what else can I do to get these attacks under control?
19. What are your thoughts on the Cefaly and other non pharmacological devices?
20. What migraine diet do you recommend?
Understand that many doctors may say elimination diets 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 include them. Migraine Strong will be by your side to assist you.