Tuesday, March 25, 2008


Yesterday I had my appointment with the Epileptologist.

In my wildest dreams I was hoping that she could just look at me and spit out personalized information from what I have, why I had a seizure and the exact right treatment for me! I realize that this would most likely stay a dream and that the reality would be quite different, which it was.

She listened to me and took a lot of notes on her computer (their office is paper-free! HURRAY! Green!) and asked a lot of questions. When I explained the hospital diagnosis of 2003 meningitis = old calcifications in my brain = partial seizures = possible epilepsy, she was not on board with that "story" (as she called it). Even though that makes a lot of sense to me and rings true for me, I am grateful that she has ordered her own tests and is going to make her own diagnosis. That is what a 2nd opinion is for after all.

So, I will know more at the end of April. Yes, that's right, the last day of April to be exact.

In the meantime it seems to me that I will in the end have one of two scenarios.

1. 10% of people have one seizure in their lifetime. If mine was a one time event, unfortunately, in order to prove that I am not an epileptic (epilepsy defined as 2 or more seizures), I can't have another seizure in the next 2 years (or ever). Since I experienced the grand mal seizure (the worst one), the doctor needs to take measures to prevent that happening again, if it is a possibility, and so I must be on anti-seizure meds. I have learned that you can still have seizures while on meds, and if that happens the epilepsy diagnosis would be imminent. If after 2 years on the meds I have no seizure, than I will go off the medicine and be classified in that 10% of the population that has a 1 time seizure.

2. I go on anti-seizure meds and I have more seizures and my EEG and other tests results also indicate seizure activity and I am officially diagnosed with epilepsy. I have read that many who suffer from epilepsy can get to the point where they are off medicine when they are seizure-free for a period of time, usually 2 years.

The doctor has not spelled this out to me in this way....it's just my own deductions after reading a lot and having this appointment. I feel that whether I am officially diagnosed with epilepsy or not, I am living like I have it for the next 2 years. The only bit of hope the doctor gave me is if I remain seizure-free on my prescription for 3 months, she will give me driving privileges back. Driving again seems risky, but I have to tell myself that plenty of people recover from this and drive again. I look at that as a comforting thought in some ways and very scary in others. Never mind the drunks and the drug addicts out there, now we have the possible-seizures-occuring-peops out there too!

I have been trying to really concentrate on not having a seizure in other dangerous situations. I sit on the bench at the subway, and while the train pulls up I think to myself: "Ok, just stand up and make it from here to inside the train, it's just going to take about 2 seconds. You can do this, just stay standing, stay alert, DO NOT have a seizure right here in between this bench and those doors." or; "Alright, I just have about 40 steps to go down to get to the platform. Just concentrate on counting the steps and holding onto the rail, and do not pass out here or have a seizure, just walk safely down." In truth I don't think about it that much...I mean I have crossed lots of streets and ridden lots of subways in the past few weeks, but every once in a while it occurs to me that this is a possibility, and I try to survive.

I started my new medicine last night. I felt that familiar feeling this morning of wanting to stay in a deep sleep. It's VERY difficult to be roused in the morning, there is this element of weight behind the eyes on this medicine that makes it hard to roll out of bed. I will be on the low dose of this for 2 weeks, and I expect I will do pretty well. I am seriously dreading doubling it in 2 weeks though. Like, SERIOUSLY dreading it. For now I will just enjoy the first two weeks and hope for no other crazy side effects. I am ignoring the one listed as psychosis. Oh, PLEASE! I am already psychotic enough! Hey?!, maybe my own mentalness will actually counteract psychosis as a side effect! Here's hoping....


Hilary said...

I've been enjoying your blog since Heidi Swapp linked you... I'm sorry about your scary times right now. My husband is one of those 10% who had an unexplained seizure and has been fine since... I hope you are in that 10% too! Good luck with everything!

knittingirl said...

I'm so glad that your doctor is looking into further testing before officially diagnosing you with epilepsy. Seizure disorder is usually a more common diagnosis after just one seizure, since epilepsy is considered a more chronic form of the disease. I am actually surprised that they're already putting you on anti-epileptic medications, but I guess they know your signs and symptoms and decided it was the right thing to do. I am also one of those 10% of people - I had a seizure once in high school and never again after that. It is my hope and prayer for you that this will be a one-time occurrence for you as well. Take care of you--

amydc said...

You are going to do great on your new med.
You are still in my prayers.

Janna said...

My prayers are with you! I think you are in the 10% because you only had one.

I know a lot about seizures because my oldest daughter stared to have them at 2. She had GM's every night.


beth said...

Wow, that is a lot to take in. You are very strong and inspiring. I can't imagine it is easy for you feeling so groggy and sleepy. Hang in there.

LJ said...

The end of April does seem like a long time away. How frustrating. I hope for the best possible outcome for you. It sounds like you have an excellent doctor. You are a wonderful example of strength and optimism!

Laura said...

I feel sort of funny always posting comments here when you don't know me from anything. I guess its just that reading your blog for over a year makes me feel like I know you. So sorry if it sounds weird to hear from me....

My heart totally goes out to you! I have been the 1% before so I fully believe you can be the 10% on this one too. It is hard to deal with life altering things like this and I know looking ahead the next two years is tough. Keep your chin up. You will get through this.

y said...

you're gonna make it! down the steps .... up in the morning ... back into the car ... through the pill fog.

one little mental moment at a time. :)

Rycharde Manne said...

I can backup some of the other posters. I am now on my 4th second opinion and looks like I may not have E at all! I am now investigating all the other hideously complex causes of syncope, and that's after a year on AEDs - not much fun! I would also suggest adjusting the meds - I'm sure doctors would hate that but in reality they're just guessing too until the appropriate dose is found.

I've added a link and RSS feed to my own blog at epilepsycures.blogspot.com

Take care