A month ago, when I met my new neurologist, he told me that he would be putting in requisitions for a new MRI and a sleep-deprived EEG. But there are wait-lists for both, so I was not expecting either one to happen any time soon.
Monday, I got the call for the sleep-deprived EEG. Already. She asked if I could come in Thursday. Yes, but... so soon?? Suddenly I didn't feel ready. She gave me all the instructions: St Pauls Hospital, Thursday morning. Allowed 4 hours of sleep. Hair must be completely dry. Take meds as normal. No caffeine after 3pm Wednesday. Light breakfast. Comfortable clothing. Here's how you find us... I'm writing all this down and I feel my anxiety level rising before the phone call is even finished.
I'm not usually someone who is prone to high levels of anxiety, but that day it was through the roof. Here's why:
I've spent the last three years doing everything in my power to NOT have seizures. Also, my previous EEG came out clear. But now, I had to try to turn everything around in a three day period and shift the balance so that I would have some activity on Thursday--just enough to show something on the EEG, within that one-hour window while I was hooked up to the machine. But I did not want to shift it so much that I would end up giving myself a generalized seizure.
Adding to the anxiety was transportation. I was thinking worst case scenario. If I did happen to trigger a generalized seizure due to the sleep deprivation, etc, and I was on public transit, what was going to happen? Should I take a cab? Thank goodness for Michelle and her hubby Gary, who offered to drive me to the hospital--that took a giant load off my mind!
So, how to shift the balance?
Since I was tapering off of the Keppra anyway and nearly finished with it, I stopped taking it immediately. I was down to 500mg and figured that bit of withdrawal might give a response. Sure enough, I started feeling a response over Tuesday and Wednesday (the anxiety may have contributed as well). I also stopped my Progesterone cream for those few days. Brainstormed a few other things like THC and antibiotics, but those were less practical so I didn't do them. Ultimately, I had to face the fact that I could not control the result no matter how badly I wanted to.
Wednesday night came and my plan was to sleep 1:30 to 5:30, but my fear was that I wouldn't sleep at all since I often don't if I'm anxious about something. Luckily I did sort of sleep those four hours, though I did wake up three times in that timeframe. Up, walked the dog, ready to go by the time Michelle and Gary arrived. In the car, Michelle gave me a good luck coin from Japan. :) Arrived at the hospital early enough to spend some time fretting about the test and wishing I could have some coffee. Checked in, met my EEG technician, who was very friendly and talkative. She asked me a bunch of questions about my meds, history, etc. Then she started raving about my new neurologist. Apparently he is one of the best. She said they all love him and he is very involved and compassionate. She said that he will be down at the hospital himself by tomorrow, looking at the results in person, and that most doctors don't do that (!). That was really encouraging and good to hear.
Then she hooked me up. So for those who aren't familiar with the process, they stick a couple dozen electrodes all over your head (also one on your left cheek for your eye and one on your chest for your heart). The glue they use is very sticky and nasty so that you have to wash your hair after. The electrodes pick up the electrical signals from your brain and a few are picking up muscle activity. Feeds it all to a computer. So from her computer she could see when I opened and closed my eyes, when I twitched a facial muscle, or when my ears moved, etc. It's wild. But she could also see the electrical activity in my brain, which of course is why we were there. Then they put you through some activities to try to encourage seizure activity. So the first thing she had me do was heavy breathing for 3 minutes, like hyperventilation (those of you following on facebook may have seen the comments about sometimes getting partials when I'm running). Then after that she had me relax and actually left me alone with a white noise machine for awhile in the hopes that I would doze off. This is because some people have seizures when they're asleep, or just on the verge of falling asleep (I don't tend to, but many do). Then after that, she flashed a series of bright lights in my eyes with varying patterns and speeds. Many people with epilepsy are light sensitive, apparently because the optical nerve is the only nerve that runs through the entire brain (or so my previous EEG technician told me).
Through all of this, I felt NO activity, no partials, nothing. When she was done and was taking off the electrodes, I was discouraged. I told her that I hadn't felt anything.
Then she said the magic words: No worries. We got lots.
Wait, what? You did?
She had told me beforehand that they could catch activity even if I didn't feel anything, but I wasn't really sure how much. But yep, she said that she had all sorts of "big puppies" she called them, "epileptic discharges, clear as day". She offered to show me what it looked like on the computer. She showed me the normal waves, just little squiggly waves, and then she scrolled over to one of the "big puppies", and there it was... big, jagged, pointy, mountainous line that then returned to the little squiggly lines. She explained to me how she could see from that one spot--which lasted just a fraction of a second--where in my brain my seizures are originating (called the focal point), and where in the brain they're spreading. She said it's like throwing a pebble in a pond. You have the spot the pebble lands, and then the ripples go out from there. The focal point is where the pebble lands, and she can tell that from the lines on the computer where all the ripples are(!). She moved on to another one and it showed the same thing. So my discharges are happening in the same place. Some people have multiple focal points but from a cursory glance it looks like I have just one.
She gave me a little diagram and showed me where my focal point is, where the red star is:
That is the front of my right temporal lobe. We've always known it was temporal lobe from my symptoms, and I've always thought it was my right lobe, but this confirms it.
Having a single focal point is good for a specific reason (and here is where she told me something she is not supposed to tell me, so pretend she didn't tell me this... I'm just making this part up on my own... ;). There's a possibility that it's being caused by a specific thing, as in scar tissue, and if that's the case there's a possibility that it could be removed through surgery. This is still a long shot and would need to be confirmed by further testing but it's the first time that the idea of being a surgery candidate has entered my mind--primarily because my first MRI showed nothing.
Some of you might think that the idea of opening up my head and removing a piece of my brain is not good news. But it is. Success rates with this kind of surgery are good, and the people with epilepsy who I've talked to who have had it are really happy with their results. In many cases it stops the seizures altogether and some people are med-free afterwards.
I'm not saying this is the road I'll go down. But an MRI has already been ordered for me on a stronger machine than my first one. If it were to show scarring in the same spot as my focal point, there's a chance I could be a candidate for surgery, and if my neuro were to recommend it I would consider it.
If not, then I continue on the same path, and we are at least better informed now.
In any case, this is all good news! I am happy with today's results. The sleep deprivation was worthwhile, and I was really glad to come home and sleep and drink coffee! :)
HUUUUGEEEE thank you to everyone who helped me this week with your moral support. Those of you who offered to be available in case of emergency, those who kept me company late at night, everyone who checked in on me, offered support on facebook and in texts, offered rides, and everything else. It means a lot, and I love you all. I'm going to kick back for the rest of the day. :)
