Wednesday, May 7, 2008

Day by day

Things around here haven't changed. DH had to do a digging sternum rub for 15 seconds straight yesterday morning before there was any response. I don't know how long I had been unresponsive before he saw me.

This isn't a typical case of seizure disorder. Having uncontrolled meningitis for 9 months left me with arachnoiditis, a permanent, incurable condition causing intractable pain. All my brain knows how to do is grow scar tissue, around the clock 24/7. Every surgery increases the rate at which it grows, which is why my problems have no cure or treatment.

My NSG team strongly suspects the scarring that has been taking over my brain the last couple of years has now reached my hippocampus, explaining one of the types of seizures I've been having, the ones I've been having 3-4 an hour for the last couple of months. I don't know yet where the convulsions-type are originating from yet, since none of the local docs are calling me back with recommendations for local help.

I've been on pretty much all the AED meds already, since they're typically also used for HA and/or neuropathy as well. I've usually taken 2 at a time, though they've been switched around periodically. I'm on 2 at the moment and as usual, in large dosages of both.

Obviously they aren't helping.

This blog has the ability to leave comments or send emails. If you have something to say about this, please say it to me and not leave me as the object of discussion amongst yourselves. I don't like being the focus of what really feels like gossip. I don't think most people realize how much that hurts, and I don't need or appreciate it right now.

To all of those who have written me with thoughts, prayers, recommendations, suggestions, and advice, I appreciate it more than you now! Even those who write to say they don't know what to say but they're there, I understand and it means a whole lot just the same!


  1. Praying much for you...I'm asking a couple friends for insight about seizure medications for you. One friend of mine has searched for the right combo to control their seizures for over a year and finally found a combo that works--it involves two older anti-seizure drugs, one that is a derivative of valerian root. I'll see what we can find out here in TN.

  2. ZH, I haven't been here in a couple of weeks, and been wondering how you were doing...I'm saddened to hear that you are seeing these manifestations increase. I don't have the words or the knowledge to help, but pls know you are in my heart so much of the time! I am praying for the right medication to be found to help you through these worst times. God bless your husband as well, this must be so difficult for him! AND also, while I"m at it, I'm SOOO thankful for your fun makeover and I'm going to go watch that interview online right now!

    love to you!