Chronic Migraine Awareness

Written by Deborah Bloom, for Chronic Migraine Awareness Inc.

How do you feel before seeing a new neurologist or headache specialist?

What thoughts go through your head as you anticipate going to meet a new neurologist or headache specialist?     For me it had become thoughts like, will they treat me with respect and compassion?  Will they listen to me? Will they have something different I can try?  Will we be able to work together to lessen my pain?  My list would grow as the anxiety mounted around a new patient appointment, or a follow up appointment where the doctor was running out of new ideas.  How about you?

The doctor-patient relationship

I think we can all probably agree that our number one goal is finding something that will provide us some pain relief.  But beyond that, I think we can all relate to the challenge of finding a doctor patient relationship that works.  I was naïve when my migraine disease first re-emerged, thinking that finding  help for my migraine attacks would be as easy as reaching out to a neurologist or headache specialist.  But over the years, what I actually found is that the practitioners I reached out to were not always able or willing to help me.  These appointments intensified feelings of sadness, disappointment, despair and hopelessness around my diagnosis.  I didn’t realize at the time of these appointments that this was not personal, even though I took it to be so.  I now realize that some neurologists don’t have enough training to handle migraine disease especially when it becomes complicated, like with chronic migraine or a patient who has multiple treatment failures.  As for others who refused to meet with me, I have no explanation.  At the time I was distraught as to whom or where I would turn next, but looking back on this I now I realize these providers did me a favor.  If I had met with them, they may have heard me but never listened to me.  And now that I have had successful partnerships with neurologist and/or headache specialists, I realize this is what you need in order to be able to feel as well as you can with the current therapies available.  You need to have someone who will listen to you, be there when therapies don’t work, try to be creative as to what to try next and still be willing to treat you even if that means to tweak things that aren’t working great or hold on with you until new treatments come to market. Ultimately, this has led to feelings of hope and validation that were missing in my earlier years seeking treatment.  Now when I have to change specialists, I look for a doctor who will partner with me as each of us has important information to bring to the table.

 Tips for preparing for the doctor

• ·       Prepare for your appointments:
  • When making a new patient appointment, ask whether there are forms that you can access online or get mailed to you, so you can have them accurately filled out while not under the pressure of the clock in the waiting room.
  • Do they prefer a particular headache log or can you bring your own?  Yes, headache logs can be a pain to fill out but they can provide the doctor with a wealth of information they need to help us.
  • Try to make a list of old medications, how long you tried them, doses, and why they failed: they didn’t work? Side effects?
  • For all appointments both new and follow-up bring your current medication list and know your doses (I keep mine on my computer so I can easily print it out and just make changes as needed).
• Patients should have realistic expectations about current treatments so they are not continuously frustrated and disappointed. Yes, we would all love to be “cured” but since right now there is no “cure” it can be a set-up for disappointment.  Instead replacing it with a goal like improving our quality of life and making us more functional maybe a more realistic goal that both we and our practitioner can aim for. Use your doctor as a sounding board as to whether your migraine goals are realistic.
• Be respectful of the doctor’s expertise. Don’t demand treatments.  It’s like asking the doctor for your medications with a side of fries.
• Be open minded; although you may have tried a medicine in the past maybe it’s worth another try at a different dose or in a mixture with some other medication to make a new “cocktail.”
• Do your homework about current treatments that you may not have tried.
• Write questions down and bring them to your appointments. This will lead to a better understanding of the treatment plan.
• If you’re unsure about trying a treatment, ask to think about it; do your research if you’re not comfortable trying something.  But when doing so, go to credible resources and don’t believe everything you read on the internet.
• You know your body best.  Be honest if you’re not going to take a medication.  This can lead to a frank discussion with your doctor that may lead to trying an alternative option.
• If it’s not the right partnership or the doctor won’t partner with you, consider that this may not be the right doctor for you.  Know when to walk away.
• All healthy relationships in life start by treating each other with respect and dignity.  Patients and doctors should look for this from each other as well. Your relationship with your doctor can be a partnership instead of a dictatorship, where each person brings valuable information to the table to help form a treatment plan.

Onward

As I move forward on my journey, I continue to learn tips through my doctor-patient interactions and fellow migraine patients’ stories that help me maximize  my doctor’s appointments.  What other tips can you share that make your appointments more productive?  

*Disclaimer*

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding migraine and headache disease and all medical conditions.