Daylight Eye Trouble

Scary Scotoma

Woke up this morning feeling mighty fuzzyheaded.  Sure now it is the neurontin that I have started up again.  Trying to get ready for work this morning I experienced almost an hour of a visual scotoma that took up my entire peripheral vision fields, leaving the middle part clear until the very end.  It was like a fluctuating curtain surrounding my central vision.  I was not able to really see what I was doing so I just sat in the bathroom where I was showering until I was able to see again.

I was very confused afterward so I sat around for about an hour or so to see if the confusion would clear and it did not.  I may be having a worsening of The Headache and just not feeling pain as my left eye was not wanting to behave either.  I gave up around noon and called in and told work I would not be able to make it.  I am so tired and done in I just want to give  up entirely but I will recuperate this evening, brush myself off, and try again tomorrow.

I never had a visual scotoma in my life until I took Topamax.  I was very droopy and tippy on Topamax and I started experiencing scintillating scotomas.  They disappeared after stopping Topamax, and I associated these with the intense eye pain that Topamax induced as a nondesirable side effect. I now occassionally have an episode of scintillating or non-scintillating visual scotomas, so not sure if Topamax made a permanent change somewhere in my hardwiring or if The Headache just likes to mess with my vision to throw me off stride.  I don't seem to have an increase in The Headache pain when I have these - I probably should check my blood pressure the next time (if there is a next time) this happens although I doubt if there is any physical reason for these other than The Headache.

I slept most of the day today.  At least I remember what I did today!!  Yeah!!  I'm ready for my brain to reboot and start functioning in neurontin mode again.  The Belly is not happy tonight, but I'm happy because The Legs are still - no dancing in pain for me this evening!!  Yeah again!!!

I have an appointment with Dr. House at the Washington University Neuromuscular Clinic on April 7th at nine AM concerning The Legs.  This is in St. Louis, a good four hour drive away, so I guess I will go up the evening before and stay at a hotel.  The Great Big Corporation I worked for had a base of operations in St. Louis a few blocks further downtown so I am very comfortable finding a hotel nearby.  I used to go there on a regular basis when I was a project manager for them.  I could fly in and back but flights to St. Louis from Springfield Missouri are terribly expensive - I guess because business customers will pay whatever the rate may be if there is a need for the flight.  I think this will be another dead end for me concerning The Legs but I promised myself last fall I will be persistant in trying to find a solution to The Legs.  Washington University has a world class neurology department so hopefully if there is anything to be done Dr. House will find it.

I go to see my PCP next Monday for a followup on the neurontin, and to see how I am doing otherwise.  I am glad he is a great advocate for me with other doctors.  He tries different approaches if one is not working, something I have not had good success with convincing specialists to do.  Just wish I didn't have to see him as often as I do.  There was a day (pre cancer) when I only went to the doctor a couple of times a year to have my synthyroid dose checked.  Now I go to the doctor way way way too often in my estimation.  Too many systems not working right.  Big sigh.

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.