Preparing to Switch Migraine Providers While in an Active Migraine Cycle

I recently had to switch my migraine care providers because I was experiencing one of my worst migraine attacks. It felt like a bummer because I really liked the headache clinic practice I was at, but my doctor had left several months before and I was working with a nurse practitioner who was more cautious of trying new things. When I was in the hospital, I met a neurologist that I connected with instantly and I felt really comfortable talking to her about my history, about this infection I was dealing with, my symptoms, the medications I’ve tried and those I haven’t, and she offered to continue care by following up with me outpatient.

How do I feel about the transition in migraine care?

The transition has felt a little challenging for me. I have been a patient at the headache clinic for nearly 2.5 years, and for most of that time, I’ve mostly had my migraine under control. It’s always scary to switch to a new provider who may have a different philosophy or care plan, and the one I switched to might not be the right fit for me - only time will tell. The other daunting part of switching providers is restating all of my migraine history - which is utterly exhausting.

How have my symptoms played a role?

I’m still dealing with encephalopathy (swelling in the brain) which is causing cognitive deficits, short-term memory recall issues, and this agonizing continual migraine. In plain terms, it constantly feels like I am in a brain fog - it can be hard for me to find my words, get my ideas out, and remember things like conversations that I know I had. I’ve always defined myself by my sharpness, intelligence and academic/professional accomplishments, and I haven’t been able to work since I got sick in November. Even sharing this article with all of you is taking much more energy and time to write than it normally would have.

How am I preparing for my new neurologist appointment?

In a few weeks, I see my new neurologist and as I slowly try to prepare for that appointment, I wanted to share some tips with you all that I’ve found to be helpful.

Tip #1

Document as much as possible. I understand keeping a migraine or headache log is challenging - especially when you feel incapacitated the smallest movements and thoughts can make things worse. I've found that, writing things out by hand during this chapter has been more reliable than typing on my computer or phone, and looking at screens is still hard for me with this headache. But, the more data you can present to your doctor, the more they can get a better picture of what you're dealing with and how they can help you. It also helps if the new doctor’s office can get the records from your previous migraine care provider.

Tip #2

Talk about how what you’re experiencing is affecting your quality of life. How not having control or having only a small amount of control over your migraine is leading to... (whatever symptoms you experience - sleeping too much or too little, not being able to work, have GI distress, memory or cognition challenges, lethargy, etc.).

Tip #3

Have a list of your current medications easily accessible. I also include the past medications I've tried for migraine so they don't prescribe something I already know doesn't work.

Tip #4

Be open to new treatment options, even if you're hesitant. You're obviously not having enough success managing your migraine with your current treatment options/current provider, so be sure to ask the new doctor as many questions as you can think of.

Tip #5

If you are struggling with cognitive deficits, try to bring someone with you to the appointment to take notes and fill in details that aren't top of mind or that you forgot. If you don't have that option available, ask the doctor if you can audio record the appointment for personal use.

Do you have any other suggestions for the community on how to prepare to switch providers or see a new provider?