Migraine doctor visit success

doctor_knowsHave you ever wondered what a successful migraine checkup looks like? With a shortage of qualified doctors, most of us have never seen a true headache specialist. We make do with our primary care doctors or general practice neurologists. Even when our doctors mean well, they don’t always have the expertise to truly address our challenges. We trudge along, hoping that this or that will work, always wondering if there is something more effective.

Many of us are not even lucky enough to get a sympathetic doctor.

I have been blessed with an excellent neurologist. While he is not “board certified”, he is an outstanding doctor who specializes in headache medicine. He is well-respected by his peers and is as close to a headache specialist as I’m going to get in Kansas. My only other options are to drive into Missouri to KU Medical Center’s headache clinic or find a way to make the long trip to Springfield to meet with Dr. Cady. Those options may be considered if there is ever a time when Dr. Z and I run out of options.

After all these years I still keep a headache diary. It helps us learn how I am responding to the latest treatment . Thanks to my record-keeping, I discovered that my old patterns were starting to come back after several months of steady improvement. When I realized that both cluster and migraine attacks were increasing frequency and getting harder to treat, I called Dr. Z to report the change. He decided it would be better to have an appointment rather than just call in a new prescription.

So this past Thursday afternoon I met with him. The entire appointment lasted 45 minutes. The office was quiet and never has any strong odors. It is completely trigger-free. He never double books patients and his waiting room is almost always empty…yet his appointment calendar is booked 4 months in advance. He just hired a second neurologist to keep up with the demand for services. We reviewed my medications, talked about side effects and their effectiveness.

In the past year, thanks to his expertise, migraine attacks have reduced from over 15 a month to less than 10. The biggest improvement has been with cluster headaches. After years of fighting with chronic attacks 3-5 days every other week, I finally have longer breaks between cycles. Up until April, I was getting 30-60 day breaks in between active cycles. However, since May 15th I have been in an active cycle which has returned to my old chronic pattern. That makes me nervous. That kind of pain is so excruciating that it is demoralizing, humiliating, and has the potential (if left unchecked) to completely ruin all the progress I’ve made. I had to do something to slow it back down.

He patiently weighed all the options with me for over 30 minutes. We talked about adding Lithium — and shared the same concerns about side effects. Then we discussed adding an older tricyclic antidepressant, but it was contraindicated with Cymbalta. I expressed my frustration with the technical “episodic” label even though I didn’t feel like I wasn’t chronic anymore. He stopped and reassured me that we would find a better solution together. That brought us back to Verapamil. He told me that normally he would have patients max out their dose of Verapamil before adding Lithium, but we couldn’t in my case. When I asked why, he explained that there had been some concern about heart block when I first started it last summer, so he assumed we couldn’t raise the dosage. When I corrected him, he took a closer look at my records, particularly the notes from the cardiologist and decided it would be safe for me to gradually increase the dose.

It is a rare thing to have a doctor who is humble enough to double-check the records and change course rather than stubbornly rely on his memory.

Now our plan is to titrate up from 120 mg TID to 180 mg TID over 2 weeks. I will call to report the results every 4 days until we are at the full dose. Hopefully we can find that “sweet spot” where I can get maximum relief with manageable side effects. In the meantime, I will keep calling in.

What an amazing thing to have a doctor who insists you call in with any change or concern. Even better is a doctor who will actually do something about your complaint. Now if we only had cloning technology so I could share him with you.

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