Off I go! Wish me seizures.

Updated – Today I go in to the Neurology Unit at my hospital for up to ten days (feel free to shoot me instead) of video EEG testing.

“Oh, another vacation!  You must be so excited.”

No.  Actually.  It’s just frustrating.  No bathing for a week, eating hospital foods and doing. nothing. at. all.  

The goal is to come off of my seizure medicine and HAVE seizures while hooked up to the gadgetry. Wish me seizures. I know that sounds crazy, but if I seize, I can come home. I’ve asked my friend Wendy to give me disturbing news via text or phone once I am settled in — because while it’s a long shot — stress COULD help. I know. Nuts.

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I finally went to the neurologist’s office today, after a very long stretch of missed, forgotten and canceled appointments.  First thing —



— I am very bad at scheduling anything, and often when I do schedule an appointment I either forget about it or end up having to cancel because getting there turns out to be impossible.  Getting into the city is not easy, and if my husband can’t get time off to bring me, I can’t follow through — and this has happened a million times in the last five years.  

(I’ve had neuro issues since mid-2006… I was having seizures but I did not know it… I wasn’t diagnosed with a seizure disorder until winter 2008…)

As I checked in at 11:30am, the admin at the desk told me that “The last appointment was at 10:30am, and I don’t see you on the schedule.”  

My blogger brain went to:  “Well, here we are again, another Only You, MM moment!”  and I started composing an update in my head.   Do you remember that time I went to the OB-GYN, and the MAN HAD RETIRED  or QUIT before I walked in the door?  I have a complex about these things!

It turned out that the secretary booked me with my neurologist’s resident whom has a very-long-and-unpronounceable name and the appointment did not pop up when I mentioned the neuro’s very short and memorable name.  

The neurologist had his partner do the physical examination on me, the basic neuro tests:  Remember these numbers, touch your nose, what were those words I told you, walk in a line, can you feel this?  He asked lots of update questions, which started with “How are you feeling, good?”  — to which I said “no.”  I think it took him back a bit, but I was honest.  I told him that I have been having 2-3 seizures every 5-7 days, at the most 14 days in between.  A little look of shock there.  But, granted, I haven’t been in for a check up in a very long time — only email correspondence and med changes via phone and mail.     I shared a video of one of my typical seizures and they nodded and started pointing out my bizarre behaviors as normal activity for a seizure.

It was determined that the medicine, while clearly stopping grand mal seizure activity isn’t doing squat for the complex partial seizures.

And, they want me off the medicine.  To do this, I will be admitted to the neurology unit at the hospital as soon as we can get it scheduled, placed on a video EEG and tapered down on the meds until I have none floating in my system.  During this time, it is expected that I should have a seizure that will be captured on the EEG.  From that point, I can start a new medication regimen and go home.  If no seizure activity is caught, I will still start another drug and go home.  

The goal, according to the doctors — is to FIND the source inside my brain of the seizure activity as it’s never been imaged before.  If they find it — they suggest further testing to move toward brain surgery to remove the section of brain that is the cause of this trouble.  I have not agreed to this procedure thus FAR, as he’s suggested it for years.  I’ve said no.  But, I told him I would consider it if the seizure activity is finally caught on EEG and through the testing. 

So there’s that.

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