When Communicating with Your Doctor, It’s Important to Detail All Symptoms for a Diagnosis

Have you ever had a headache so severe that all you can do is stay in bed? The kind in which every sound and bright light sends ripples of pain through your head? I have. Many times.

I finally decided to speak to my doctor about these horrific headaches. They are the kind that last days rather than hours. The tipping point was when the headaches caused me to miss out on family events. Before, I’d even go to work with these severe headaches and deal with two dozen 9- and 10-year-olds all day as a teacher. I’m not really sure how I managed that. Missing out on family time is what made me talk to my doctor.

My doctor and I went over my symptoms: sensitivity to light and sound, severe headaches lasting a day or more, and occasional lightheadedness. Over-the-counter general pain medicines did not alleviate the agony. Based on the symptoms, I was diagnosed with migraines. The first course of action was to take an over-the-counter migraine-specific medication, Excedrin Migraine, to see if that helped. I tried this the next time I had a severe headache, but it did not help all that much. So, I went back to the doctor to discuss the next steps.

My doctor and I decided to try a prescription medication for the headaches. We went with Imitrex (sumatriptan succinate). I went home with a sample to try. I followed the directions, took the medication, and hoped for the best. At first, I became very drowsy, and then I became very lightheaded. I decided to lie down and promptly fell asleep. When I woke up, I actually felt worse. My hands were shaking and I felt like my heart was racing out of control. I called my doctor, and he said to come right in. He did a complete check on all my vitals. He was concerned because I was still shaking and my heart was beating way too fast, so he admitted me to the hospital. But even the care team there was perplexed by my reaction.

The doctors checked if Imitrex was on the neurotoxic list for Charcot-Marie-Tooth patients, which is published by the Hereditary Neuropathy Foundation. It was not, which added to the confusion of why I was having such an adverse reaction. They had a neurologist see me in the hospital. He determined that my headaches were not actually migraines, but tension headaches. These can be confused with migraines. After some research, we discovered that, according to the Food and Drug Administration, Imitrex should only be given when there is a certain diagnosis of migraines — otherwise, it can cause the symptoms I had.

(Page 7 of the FDA info sheet on Imitrex.)

The neurologist recommended I take 500 mg of vitamin B2 daily to help with the tension headaches. This has helped tremendously. I have very few episodes and they last shorter than before.

This incident taught me the importance of understanding my symptoms and making sure I tell my doctor about all symptoms and potentially related issues. I do not blame my doctor for the misdiagnosis, as tension headaches can mimic migraines, making it difficult to diagnose. I am grateful that I had a team of doctors willing to do some research to understand what happened. It is so important to know that your doctors are working with you and doing what they can to help you. My advice to you is to always ask questions and be sure the medication you are being given is the right one for your symptoms.

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.