Sunday, December 20, 2009

I Have Kaleidoscope Eyes

Scintillating Scotoma

For the second time in my life I have experienced a scintillating scotoma. This is a spreading writhing twisting spinning moving area in your vision that can be an ocular migraine or an aura for a regular migraine. It is very trippy but also very weird. It blots out or covers an area of your vision - for me it was in both eyes. It reminds me of the after image you get after staring at a light for too long, but it moves - for me it was in a counter clockwise direction.

I have friends who have migraines with aura that always see scotomas, but with almost thirty years of migraines I never experienced one until I had The Headache, and was put on Topamax. While still titrating up on the Topamax, one weekend I had an entire day of scintillating scotomas PLUS the added benefit of double vision and seeing trails of colors following anything that moved. Very beautiful and very disturbing. The neuro who put me on Topamax said to quit taking the Topamax, as in addition to the vision disturbances I was experiencing extreme eye pain and had very bad balance issues and was in brainless jabberbox mode. It didn't do squat for The Headache either. Hemicrania Continua just doesn't respond all that well to drugs that help migraines, which is not a good thing.

That was in February 2008. This is December 2009 and I have just had my second episode. This didn't last as long as the ones I had when taking Topamax, just a tad over an hour. I have waited to see if I will get a bad headache from this but so far so good. I have not been taking any new medications, and though The Belly has me under the weather other wise The Headache has been behaving itself. Not sure what to make of this. My left eye that is effected byThe Headache feels kinda strange - not focusing correctly. I have to drive to a client tomorrow to do more training, and hope the scotoma stays away and my eye behaves itself. No time for medical emergencies tonight or tomorrow!

I did turn up the occipital stimulator and put it on a different program to see if that would be prophylactic for a possible migraine.

Not sure what I will be able to do for Christmas. The Belly is trying to bring me down, but I'm fighting back! I have done no Christmas shopping whatsoever. If The Belly has its way there will be none done this year. Part of my enjoyment of the holiday is shopping for others, so this is the most disappointing part of feeling poorly. I have learned in the past couple of years to let go of what can't be helped and move on, so I am not worrying about it. People in my family and my friends understand. Maybe I will feel better by Christmas Eve day and do some last minute shopping.

Just too tired to care about anything but staying out of the hospital at this point. I'm trying to hold it together for work because as usual we are understaffed going into a major install. The new positions haven't been filled yet, and they won't be trained or up to speed for some time after they start.


  1. Great video to go along with your post dear one. Again, thank you for sharing your story. Blessings and hugs.

  2. Hope you have a great holiday JBR! Merry Christmas. I'm old enough to have bought this song on a 33 rpm record - long long before videos...

  3. I think my brother maybe had this album??