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I am happily married to an amazing military man who spent 9 years enlisted and is now an Officer in the US Army. We have two amazing boys who are not so little any more! They still infuse every moment of every day with creativity and energy, and make my life an adventure.  I was educated at home, and am now teaching our children - second generation homeschoolers! I try every day to become more like Jesus Christ, and to love like HE does. If you want you can try and catch me at bethylovesandy@yahoo.com

My Blog Title Verse

"For the Lord gives wisdom. From His mouth come knowledge and understanding." Proverbs 2:6 NKJV 
The Message translation puts it this way "God gives out Wisdom free, is plainspoken in Knowledge and Understanding."

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Tuesday, October 27, 2009

An official diagnosis

I was at the Neurologist this morning, to talk over the results of my EEG.
It is strange really, how mixed my feelings are. I have wanted a diagnosis for quite some time now. Something official. Just to know what was causing these strange episodes. We have had our suspicions - but I wanted to KNOW.

So, now I do.

I have a form of Epilepsy, called Absence seizures. The strange thing is, it is very very rare to develop it as an adult. In fact, the doctor doesn't seem to think that I just now developed it. He thinks I have had it for years, just less intense, less noticeable.
It is usually a childhood disease. Many children outgrow it by the time they are adults, but not all.
I have been googling it whenever I could catch a free moment this afternoon and evening. There isn't much out there that is reader friendly. Most of it is written in doctor language.
Let me share a description of an "episode" with you.

"A patient stops for a moment whatever he or she is doing, very often turns pale, may drop what ever is in the hand. . . There may be a slight stoop forward, or a slight quivering of the eyelids. . . The attack usually lasts only a few seconds. The return of the consciousness may be sudden and the patient, after the momentary lapse, may be in just the same state as before the attack, may even continue a sentence or action which was commenced before it came on, and suspended during the occurrence.
Absence with clonic components. Fast eyelid flickering is probably the most common ictal clinical manifestation, and may occur during brief generalized discharges without discernible impairment of consciousness."

That is the technical description I found here. The eyelid flickering thing is def. one of my major signs. It makes me slightly dizzy.

I read in one of the papers that I perused that absence seizures can progress to full grande mal, if left untreated. I guess if I have had this for years, or even if just for a year, but with a doc who didn't believe it was a seizure, and continued to insist it was just an abnormal migraine, that is why I progressed to a full grande mal. However, now that I am proven to be having tiny little seizures continually, he has changed my meds around. With stronger, full dose medicine, I should not ever have a grande mal again.
I never posted the numbers, did I? During the 68 hours I wore the EEG I had 22 little mini seizures, and one "big" one. Not a grande mal, just a bigger absence one. This was while medicated. No wonder I was feeling so yucky last year when I wasn't on meds at all. I only felt about 5 of them. So the medicine is doing something. I did tell him how much I HATE topamax. He agree to up my dose of Lamactil, and in a while gradually reduce my topamax. Hopefully that will help my sanity.
Sorry this is such a boring post. I am still processing. It was nice to get an answer. But at the same time, it really just brought more questions. Why did I not notice it until I was 29 years old? Did I just not have it at all, or was it just really weak? What made it stronger? Will I have it forever, or outgrow it, like many children do? (How funny is that to think about me outgrowing something, at 30 years old?!) Did I do something to trigger this? The doctor said something about this being a genetic disease... do I need to worry about my children now? I already stress about passing along diabetes - Great! Another thing to feel responsible for. Also, if this is genetic, where did I get it from?
I wait. I pray. I continue to praise, in all things, at all times. As the last post said, march around Jericho, singing, and blowing that trumpet, even if you don't understand. That is my command, and I will trust and obey.
Questions always get answered - eventually.

6 comments:

Josh'sWif said...

Oh, Bethany I am glad you finally got an answer. I'm sure it takes a lot of processing...but an answer. 22 small seizures in 68 hours?? Wow. I will be praying for you! I hope you get all your questions, or at least some of them, answered. I love you and I'll talk to you soon.

Carrie said...

Here's why you never found out:
Because if you had been on medication for it all these years you would not have those two wonderful blessings of children because seizure medication is NOT able to be taken safely with pregnancy and you would have most likely made the decision to not get pregnant while on it because of the risks of being off.
I am happy you have found out, but don't worry about the why and how of the past. I am thrilled that you are going to be able to treat it confidently now and have peace!

Kelli said...

I'm so sorry, Bethy. But I am so glad there is now a diagnosis and a direction to travel in. God bless you and hold you..

Love,
Kelli

autumnesf said...

Glad you have answers...and sorry you have another thing to live with. My friend had a son with this...but he did outgrow it. It was pretty scary.

How does this affect the adoption? I only ask because it would have totally messed up ours. Hope that is not the case for you guys.

Nikowa@KHA said...

WOW girl what an ordeal!!!!!


Praying for you

Dawn said...

Wow! What a lot to process. I guess the good thing is that you know what you are dealing with. I will pray for you.

PS. It was not a boring post. Please continue to keep us all updated.