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How to Create a Migraine Binder for ER Visits and Doctor’s Appointments

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Visiting the ER is never pleasant, especially if you’re seeking care for severe migraine.

In my experience, migraine is not an urgent-care priority. I’ve often had to wait hours for a nurse to triage me. The loud, bright environment is anything but conducive to a migraine attack.

Sometimes healthcare providers:

  • listen
  • respect my pain
  • are empathic

Sometimes they:

  • downplay my migraine
  • offer minimum or no treatment

I’ve been blamed for my symptoms. There’s been the suggestion that I should lose weight.

I’ve been asked if I’m doing enough to manage my pain. One question posed: Do I exercise and drink enough water?

I sometimes leave in more pain than when I arrived.

Advocating for myself in these situations is extremely hard.

I grew tired of retelling my migraine story to have it less than fully validated. The last thing I want to do when I’m in pain is to defend what I’m doing to not be in pain.

I needed proof. I needed a suit of armor to protect me and advocate for me when I couldn’t.

Why advocate?

An advocate is a person who publicly supports a particular cause or policy. My favorite synonyms are:

  • champion
  • fighter
  • crusader
  • supporter

I define a migraine patient advocate as someone who champions and fights for:

  • increased awareness of migraines
  • access to headache specialists
  • research funding to understand and treat pain

A migraine advocate supports the migraine community by sharing the experiences of its members.

YOU ARE AN ADVOCATE! Anyone who lives with a chronic illness is an advocate on some level.

You advocate for yourself every time you:

  • research your treatment options
  • ask your healthcare team questions

You’re in charge of your health! It can feel intimidating at first. But you have a voice and a stake in your treatment plan. Remember, your relationship with your healthcare team is a partnership, not a dictatorship.

Why I created a migraine binder

I’ve seen other people in the migraine community prepare binders with their medical records and history. A binder helps them to prepare and advocate for themselves with facts and documents.

Patients use these binders as a tool when they visit a new doctor. A binder helps them to quickly inform physicians of their medical history and treatments that have helped or failed.

I took that concept to the urgent-care and emergency-room setting. My migraine binder holds the information I need to advocate for emergency treatment. It’s also a helpful tool to advocate for myself at scheduled doctor’s visits.

Create a treatment protocol for the ER

My first step to create my migraine binder was to make a treatment protocol.

My treatment protocol is a written statement from my doctor disclosing my migraine history and explaining how to treat my migraine in an emergency. I use it when I make visits to urgent care centers.

Talk to your doctor about creating a treatment protocol. Make sure it’s typed on office letterhead and signed by your practitioner. My protocol includes:

  • a synopsis of my diagnosis
  • current treatments
  • reasons why I sometimes wind up in the ER or at an urgent care center
  • my migraine medications and exact doses

Compile your migraine binder

My migraine binder summarizes my medical history. I use it mostly for emergency treatments. I also bring it to my regular appointments. My binder quickly informs new doctors of my medical records and treatment history.

My migraine binder is a collection of anything I think is important to know about my condition. I always include my:

  • treatment protocol
  • medications, supplements, vitamins, and herbs
  • migraine triggers
  • doctor’s contact information
  • known allergies
  • follow-up appointments

You also might want to include your:

  • discharge paperwork
  • after-visit summaries
  • prescription printouts from the pharmacy
  • any other alternative therapies you’re using

Update your binder if anything changes.

Update your binder for doctor visits

Heading to a scheduled appointment? It’s time to update your binder. Staying organized and knowing your goal makes visits with healthcare providers more productive.

Create a checklist of what you’d like to discuss and update your binder accordingly. Have you:

  1. updated your list of medications and supplements?
  2. kept a headache journal? (If so, bring it!)
  3. had more (or less) frequent headaches or migraines?
  4. had more (or less) severe headaches or migraines?
  5. noticed changes in your triggers?
  6. experienced new or worsening symptoms?
  7. noticed sleep changes that concern you?
  8. noted a change in the efficacy of your treatments?
  9. noted concerning side effects from your medications?
  10. heard about a new treatment and want to learn more?

You’re an advocate every time you stand up for yourself when visiting a healthcare provider. Taking charge of your health and demanding better care is empowering.

An up-to-date migraine binder can help you to feel prepared and confident.

For more information on how to manage migraine, reach out to your doctor or healthcare team. 

NPS-US-NP-00481 SEPTEMBER 2019