November 25 update

Had a huge moment of panic the last few days when the tips of my fingers started tingling. Was doing okay to keep most of my seizure activity under control this week (or at least hide the activity I was having) for the greater good. This finger-tip thing threw me off. Did a little research and found out that this is actually a very normal side effect of the topamax. Also found out that because I will be increasing my dose again tonigh, this will actually get worse over the next few days. So I suppose I need to begin reading through the little inserts that comes with my meds prior to panic.
Meditation seems to be helping keep the convulsive seizures down a bit. (That and a handful of pills)
Next appointment with Joshi is on Friday and I'm foolishly hopeful we will have heard something back from Stanford. I have had plenty of time now to think this over and roll with it....now I just want it done and over with. It may not be "a matter of life or death" but at this point it absolutely IS a matter of life....if nothing else...

November 17 update

I still couldn't tell you whether or not the new medication is working or not. It's truly hard to say. I'm still on the same dose I was before. Tomorrow it will be doubled daily. One week post it will be tripled and will finally be at maximum dose. Even then it may take a week or so to really know if it will be of any use to me.
Went to bed later last night and woke up earlier this morning and it seemed to make me feel a little better. (Theory being that part of the reason for my severe fatigue was too much sleep) I'm suffering from the afternoon lag now, but that is still to be expecting seeing as 1. I exercised today and exerted energy and 2. I AM still taking the 1/2 keppra in the morning so grogginess is still clinging on like I owe it money.
Memory problems have slightly improved it seems. Simple little things still elude me; forgetting I'm making tea and letting it boil over. (Being resolved by sweet talking everyone else into making it for me :P) and trying to remember if I took my medications...(which has been resolved with a medication chart which I check off when I take my pills) and also remembering to make phone calls. That's my biggest problem. "Kiera did you call so-and-so?" "Crap I forgot I'll do it right now" *sees a shiney* (two days later) "So what did so-and-so say about this-and-that?" *moment of panic* "....shit..." So my therapist recommended me getting a whiteboard to write down my daily "to-do's" which I have purchased and plan to mount above my monitor so that at no point can I say "oh I didn't see it. Problem is now I'm sitting here writing on it and forgot what it was I was suppose to write!!
Anyway....the basic need-to-knows are as follows:
1. STILL waiting on referral
2. Working on tapering up my meds
3. Trying to work around the memory thing- any other suggestions are welcome
4. The hand scratchy thing is STILL not controlled but HAS been confirmed as seizure activity
5. Gelastic seizures are most prominent - convulsive are now pretty rare for me (thank god)
6. Decision for VNS now entirely rests with Dr. Joshi.

Opening Med. Blog

This is the beginning of my medical blog. I will be occasionally logging entries on my seizures. Changes in them, any new problems I am incurring, etc.....I don't feel this is absolutely necessary but there may come a day when I'd like to remember what life was like when I could remember what life was like.

Lately I have been having mostly gelastic seizures.  (View Gelastic Seizures) My hysterical laughing fits leave me feeling tired, worn and with a moderate to severe headache. My fingers are also doing an uncontrollable "scratching" movement that began on 11/2. I spoke to Dr. Joshi about this on 11/4 but she really had no resolution for me. My Kepra has been cut (thank god!!) to a half dose at night and a half dose in the morning, although taking it in the morning causes a sort of all-day-grogginess. Four separate medications now; none are 100% effective. The date of the Stanford Video EEG is still in the air. The insurance company doesn't want to help push it through and my neuro is determined to have it finished before she okays me for surgery for the VNS Therapy.

For anyone who is curious, the medications I am on are as follows:
Topamax: New- hasn't reached maximum potential yet so I have no clue as to whether or not it works
Keppra: KEPPRA BAD!! KEPPRA MAKE KIERA NI NITE!!
Prozac: I think we ALL know what that's for
Vimpat: On maximum dose, would work well if we actually had a second decent medication to assist it

The VNS Therapy really is my only hope. I am finally at the point to where I really don't care what the risks are anymore. I want it done. I want it done now.

"Anything can cause you to have seizures at this point, Kiera. Stress, illness,....even PMS...."
In laments terms Dr. Joshi is trying to say "Kiera, you're fucked! Thanks see you in three weeks!"
For the record- anyone who needs to see a neuro- I actually HIGHLY recommend her. She has done an AMAZING job with me. It's not her fault that my brain wont tolerate half the medication she gives me and I'm allergic to the other half. So here's the scoop then for anyone who is curious so I don't have to repeat myself fifteen thousand more times:

1. Still waiting on Video EEG to Stanford
2. Can't get surgery without video EEG
3. On the LAST OF THE AVAILABLE MEDICATIONS NOW!! -NO THERE IS NOTHING ELSE SHE CAN GIVE ME!!
4. Attempting to keep lists/ask questions to try and remember things.