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:
- respect my pain
- are empathic
- 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.
An advocate is a person who publicly supports a particular cause or policy. My favorite synonyms are:
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:
- updated your list of medications and supplements?
- kept a headache journal? (If so, bring it!)
- had more (or less) frequent headaches or migraines?
- had more (or less) severe headaches or migraines?
- noticed changes in your triggers?
- experienced new or worsening symptoms?
- noticed sleep changes that concern you?
- noted a change in the efficacy of your treatments?
- noted concerning side effects from your medications?
- 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