Aneurysm: There can be only one...the saga continues!
Dec 19 '03 (Updated Jun 08 '05)
The Bottom Line It's sooo obvious at this point that only the good die young! (smile)
I sent this out to some of my friends here from Epinions a few weeks ago, and got so many replies telling me to post the follow up here that I'm finally giving in. So here it is, with a little more detail thrown in. Hopefully the continuation will give some help to anyone who may have just gone through an aneurysm...with the insight of...yes, there is a good chance of making it through one of these and getting back your normal life...
To my old friends...most of you haven't heard from me in quite a while, some of you couldn't care less so go ahead and leave right now cause this is a heifer...trust me (smile). Just thought I'd give the people I care about an update and perhaps a reason why I've been absent for so long.
Some of you know part of this, but I thought I'd throw the whole thing out anyway. I just hope I don't bore anyone to death and I can't guarantee that I can write more after, I'll just have to wait and see how the meds develop at this point but here goes...
...So anyway, I get the EEG in April or May (I forget, dunno why. Maybe it's these dang meds...smile) to see if I have normal brain waves and my neurosurgeon Dr. Joe will take me off of that annoying seizure medication Dilantin. Wow, the EEG say's that I have normal brain waves...shoot...thought I NEVER had those! Anywho, Dr. Joe eases me off the Dilantin and says I'm back to normal, go have a life again.
Okey dokey...I trot along till August 27th comes along and I have a Grand mal seizure, whew, those things suck big time. It was after a serious cleaning binge with no decent breaks. I sat down in the recliner when I was done with my housework, started to flip through TV channels when I heard a low buzz in my ears. It slowly got louder and then so loud that I stood up and covered my ears to try and make it stop. Then I heard voices, many voices along with the buzzing, very loud. I broke out in a serious sweat and laid down on the floor face down. I had just looked at the clock before this thing started and it had said 3pm, the next thing I remember was waking up completely confused, hearing my daughter crying on the monitor (she had been taking her nap), I looked at the clock and it was just after 3:45pm. I picked up the remote control and tried to dial it like a phone, it took me a few moments to realize what I was holding. I saw a small puddle of blood on the carpet, I had chewed through a small part of my tongue and cheek. I finally found the phone and called my husband.
No more details needed there, so anyway...the emergency room got ahold of my Neurosurgeon, Dr. Joe, gave me a big dose of Dilantin and told me that he had called in to my pharmacy for the same prescription of Dilantin I was on before. Back to the medication, with an appointment with him in two days.
So Dr. Joe puts me back on the Dilantin and sets me up for a blood test in a couple weeks to check the Dilantin level. Nope, didn't say a word about another EEG...just said that maybe we should stay on the stuff for a while. Okay, I'm okay with that, I trust the Dilantin. I mean, I never had a seizure while I was on the stuff before so I'm fine with it. They call me around October 1st to tell me that my Dilantin level is too low, I need to go from 300 mg a night up to 400 mg a night. Okay, knock me out worse at night but I'm still okay with that.
Only now my head is totally messed up, I can't seem to think straight anymore...ever. I just can't get over the fact that I have brain damage, that I actually have to live like this for the rest of my life!
So now...October 10th comes along and I have a Petite mal seizure (the Petite Mal seizure only lasted about 15 minutes as apposed to the 45 minutes of the Grand Mal)...ON THE DILANTIN! I never missed a dose...EVER!! Now Dr. Joe, my NeuroSURGEON, does something he should have done quite a while back...he refers me to...oh...let's think...what would be the most intelligent thing to do?...A NEUROLOGIST maybe?? Dang!
Ah Dr. Highlander is DA man (still haven't messed with him yet on his name but hey, I will, I will...just gimmee time)! Okay, now the soonest appointment I can get with him is October 23rd. Oh man, let me tell you I was a mess during those couple of weeks. I was afraid to do anything, afraid to walk too fast, afraid to do any housework, afraid to be alone in the house and let my two year old out of the playpen. Life kinda sucked during that time, but at least I got through it without one of those cruddy seizures.
I was a mess on my first visit, had the shakes, walked really slow, couldn't even hardly talk. I was no where near myself, had no real mind actually and thought I would never have one. He was easy to talk to, even though I wasn't, and got me started right away. He kept me on the Dilantin and added Clonazepam, 1 mg twice a day. He said that it added to the seizure medication and also took care of anxiety and panic attacks...man was he right. I felt a huge relief with the first pill. He scheduled me for another blood test for my Dilantin level and to check my liver, I guess Dilantin tends to build up there, and set up an EEG with another appointment with him after those two were done.
My second appointment, which was this last one about two weeks ago, I was more my obnoxious self. He saw that immediately and became much more straight forward with me...I have Epilepsy. My first big question, why did the EEG this last spring show normal brain waves yet this last EEG came up with abnormal brain waves? His answer...out of five EEG's, four of them will show abnormal brain waves, one will show normal brain waves. You just happen to get that one EEG that showed normal brain waves.
My second big question, what caused this, the aneurysm, the surgery? His answer...There's iron in your blood, the blood got on your brain when the aneurysm burst and left iron deposits. The iron does eventually go away, but there's a fifty-fifty chance that it'll leave brain damage. Right now it's the iron deposits that are still on your brain that's causing this, we give it about two years for the iron to completely disappear.
My Last big question, is this permanent? His answer...not necessarily. We do the meds for the two years, then we start paying close attention to the EEG's. Once you get five EEG's in a row that show normal brain waves then your clean, the Epilepsy is gone. We ease you off the meds. It could take two years, ten, twenty, or you could have it the rest of your life.
He then changed my medication to 400 mg Phenytek a night, and Topamax 50 mg in the morning and 50 mg at night. Oh, and stay with the 1 mg Clonazepam but lower it to once a day. He also promised me that if I make sure and take my meds, I won't have any more seizures.
Now it's two weeks later and except for this terribly annoying serious stutter (which I have been assured that it's a normal side effect and will go away as soon as my body acclimates to the damn meds), I feel more like myself than I have since before February.
So, what do I figure out from this experience? I had the first seizure because I never should have been taken off of medication without more extensive testing, and the second...because I wasn't on the proper medication in the first place...sheesh!
Now...I saw my Doctor just yesterday, Dec. 18th 2003, he's very happy with how I'm doing. I'm very happy with how I'm doing, the medications are definitely doing their jobs and the side effects have all but disappeared. I don't need to see him again for another three months, I still feel better than ever and...
...Damn nice to call myself average for once in my life!
The Awesomely Immortal
LadyCynic
Umm...Rene...(smile)
July 10th, 2004 ~ An added note here...please visit this editorial, it was written by our own Brett Wilmore , and is one of those rare true life stories that needs to get the attention it deserves...
Mommy, I Was Scared When You Fell Down
Ladies, bring those tissues with you my darlin's...this is one that so obviously comes from his heart!
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ladycynic
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Location: American Outback
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The early bird may get the worm...but the night owl gets the tequila!
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