The Physician's Burden: Diagnosis

It all began innocently with routine questions from my optometrist. Do you have headaches? Yes. Do you ever see flashes of light? Yes. But usually they are flashes of dark spots. And sometimes the light is like a curtain and I can’t see anything.

Amazingly, my optometrist did not discuss migraines at all. She referred me to an ophthalmologist, who found no reason for the symptoms and no cause for concern. After all, the headaches could be treated with Tylenol and the flashes of light and darkness hadn’t caused a car accident. Really. That’s what she said to me.

In the coming months, I grew fatigued and just didn’t feel quite right. I couldn’t explain it then and I still can’t fully explain it now: something about my physical well-being felt “off” in a very non-specific way. I started to experience unexplainable nausea and dizziness, which I unsuccessfully treated with a little bed rest and a strategic diet. I was experiencing life disruption and didn’t know it.

I had migraine symptoms for at least a year before I was diagnosed with the condition in the emergency room during the fall of some year forever ago, when all the symptoms converged and pain joined the party. The ER doc referred me to my primary care physician, who could never really define the migraine for me. And he suffered from them himself. At that point, I wasn’t sure how a migraine differed from a headache.

After more than a week of migraine in spite of Vicodin, Promethazine, Demerol injections, and plenty of sleep, another doctor’s visit was in order. This physician, a coworker of the first, was at a loss for words when explaining the cause for migraines but was positive I was still experiencing the same one. I was convinced that I had a brain tumor. There couldn’t possibly be a documented headache like this.

The first glimmer of information came when I applied for life insurance. I answered “no” to the neurologic question, which usually lists a condition such as epilepsy or refers to having seizures. The insurance company did not immediately approve my application. Instead, a representative called to inquire about my need for prescriptions classified for neurological conditions. Good question. I didn’t know my meds were classified that way. I patiently explained that I had migraines but no neurological condition. How did they get my medication list anyway??

My primary care doc referred me to a neurologist once it became clear that migraines were my new way of life. I assumed a neurologist was a migraine specialist. Wrong. In fact, I met no one else in the waiting room EVER that he was treating for migraines. In spite of the two migraine posters on his wall, I felt like an anomaly.

So let me sum this up. I had a primary care physician, a “back-up” physician, and a neurologist and none of them could tell me much about migraines. My favorite non-answer: Sometimes they (migraines) just come on. Whatever my symptom, it was attributed to migraines. I never left a visit without plenty of drug samples to try and plenty of refills on whatever I was on. However, I left every single visit feeling as if I had no understanding of my own condition. How could that be?

I lacked a medical understanding of migraines, as did my physicians and neurologist it seemed, and I believed that the migraines were temporary. I thought the condition was finite and that my well-paid medical professionals were just not telling me when this would end. Insert your own laughter for me here. Without humor, the days are long.

I have been under the care of more doctors than I can count for this condition. Some have been super informative and understanding, while others have been far less so. I now realize that migraine sufferers go misdiagnosed and sometimes never diagnosed. My personal experience is that some physicians are pill pushers but I know this is because we live in a time where they “make a pill for that”. Fill in the condition and I promise there really is a pill for it. As the patient, it may be difficult to associate symptoms that seem unrelated and therefore they go unmentioned to the medical professional. Diagnosis may not come easily.

I truly hope that my initial experience with physicians who “knew” migraines is unique. I have consistently found that neurologists with a focus on migraines or migraine specialists are the best for a consistent, well-rounded treatment plan and are more likely to listen to the patient. Keep in mind these doctors are not the same as pain specialists, who are helpful for pain management, however migraine is much more than pain.

Today, I am migraine fluent – yes, I speak migraine - and I encourage you to do the same. It equalizes the playing field when you walk into your doctor’s appointment equipped with knowledge about the condition in general and specifically how it affects you. It helps to read about developing treatments, medications, and great doctors so that you can ask questions or discuss what you would like to try. Have no fear of questioning a treatment plan that only involves prescription drugs. That is not the answer for everyone. Oh, and don’t be afraid to fire your doctor. There are plenty of others out there.

I would like to end with the reminder that I have to speak to myself often…this IS real. I am not alone.