Imagine: Migraine Awareness #6

I almost didn’t write a post for today. Aside from it being a busy, high pain, foggy sort of day, I haven’t really dared to think about the future.

Researchers do a great job discovering new treatments for diseases they understand. Migraine, like many other neurological disorders, just isn’t that well understood.

For the mental well-being of those with migraine, and other headache types, I hope for understanding.

Imagine if there was a test that clearly diagnosed what type of headache you have.

Imagine treatments designed specifically for different headache types instead of medicines that were originally designed to treat another disorder.

I know there are breakthroughs coming. There are trials of new devices and new drugs all the time.

I can also see by the work done by the wonderful people in our growing online migraine community that people are being reached.

While we wait for researchers and even our own doctors to find new ways to help us, we are making a difference.


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.


Treatment News

I found this article from Medical News Today quite interesting. Although it addresses cluster headache not my specific headache, whatever that diagnosis may turn out to be, any news of new treatment options is good news.

I considered having a neurostimulator implanted last year. My insurance denied the claim and I couldn’t afford to proceed. This smaller device implanted orally would make that type of treatment both easier and less expensive.

It hasn’t been approved for use in the U.S. yet. Hopefully they will have few road blocks on the way to approval and their success will inspire others to push for research in this type of headache treatment.

Another article, this time from Head Wise,  points to research started last summer that may lead to portable, non-invasive neurostimulation treatment.

It’s great to see progress being made. I look forward to something working for me!