Dr. Google and Mr. Wikipedia

While it is a good thing to research and understand your illness, I wouldn’t advise using Dr. Google to diagnose yourself.

Before I began seeing my current neurologist I did a lot of research. Having seen a different neurologist who deemed headaches unimportant, I was determined to find the cause of my constant pain before seeing someone else. This proved to be a bad idea.

Based on my symptoms and the descriptions I found on WebMD and Wikipedia, I thought I must have hemicrania continua. These are the diagnosis criteria found on Wikipedia:

  1. Headache for more than 3 months fulfilling other 3 criteria:
  2. All of the following characteristics:
    • Unilateral pain without side-shift
    • Daily and continuous, without pain-free periods
    • Moderate intensity, but with exacerbations of severe pain
  3. At least one of the following autonomic features occurs during exacerbations and ipsilateral to the side of pain:
    • Conjunctival injection and/or lacrimation (red eyes and increased tearing)
    • Nasal congestion and/or rhinorrhea (runny nose)
    • Ptosis (droopy eyelid) and/or miosis (smaller pupil)
  4. Complete response to therapeutic doses of indomethacin

Numbers one and two sound just like my headache. Number three was a bit iffy. I do get increased tearing when the pain is bad as well as runny nose. But I’ve realized that it is a side-effect of the increased yawning which is a prodrome for me. I sometimes have a difference in pupil size, but it is rare. (I have seen this as a drastic difference in my daughter though.)

As for number four, we did three trials of indomethacin at different strengths and I noticed almost no change.

I really thought I had found my headache type and how to treat it. Following this false lead wasted almost a year of my doctor’s and my time. I also think it made me seem a bit flighty. Had I stepped back and looked closer I may have realized the little bit of tearing and runny nose isn’t at all like what HC causes. I wasn’t lying about my symptoms, but I did emphasize something that wasn’t at all important just because I thought it fit the diagnosis.

I’ve since learned not to identify so closely with every headache I read about.

I just desperately want a label for my headache. I’m not sure why. I guess it will just make me feel more in control.