Welcome to Seizure City (long)

Miscellaneous and Personal Stuff I Must Share
1

I’m going to ramble on about my wonderful wife of 19 years.

It’s been happening one week today. My wife has seizures. Until last week, she hadn’t had one in two or three years (since the grand mal seizure she had at home where she fell down our stairs and broke both of her ankles).

Begininning last Tuesday at around 2:00AM she had a petit mal seizure. I took her to the ER where they ran a blood test on her, and her Dilantin level was 4. It’s supposed to be in the 10-20 range. So she was told to increase the amount of Dilantin she takes. The belief is that because her last script was filled with generic that it didn’t interact correctly, and couldn’t maintain it’s level in her blood. She continued to have petit mal seizures every two to four hours. She had an outpatient blood test taken on Thursday of last week, and she’s at 30! The doc says stop taking it. On Friday afternoon, my son calls me at work and says the ambulance is on it’s way over because she had another seizure followed by enormous pain in her chest. They took her Dilantin level again in the ER. It was at 31, even though she hadn’t been taking it since Thursday. The ER doc says he thinks it hadn’t yet peaked on Thursday, and now it’s finally on its way down. I took her home for the long weekend where she continuted to have small seizures every two to four hours. She had a lab test done this morning (results aren’t back yet), and her neurologist’s appt this afternoon. Hopefully he’ll get her seizures under control again. Whew! What a weekend.

My wife should be in the Guiness Book of world records for being the unluckiest person alive. Why?.. a few examples:
The above mentioned seizure a couple of years ago. She was at the top of our stairs and had a seizure, and took a header down the stairs shattering both of her ankles. She was in a wheel chair for four months!

The seizure before that, she was at work, when her colleagues say she was standing there talking when her eyes rolled back in her head and fell straight back, busting her head open. Twelve stitches and a concussion.

In a not too distance past she was having a nightmare and flailing her arms. Somehow she caught the cord to the clock and jerked the clock off her dresser where it hit her in the face, gave her a black eye and cut her just below the eye. People must think I beat her!

In one of our earlier visits to the ER when we were first married, we found out the hard way that she was allergic to Codeine. That is, after the hives broke out, and they had to call Respiratory Therapy.

I think you get the idea. But guess what? NO ONE CAN SAY MY LIFE IS BORING! After one of the above mentioned dr’s visits, I took my wife to breakfast. We were talking her seizures and she commented that it would be terrible if she was losing brain cells every time she had a seizure. I said, “I don’t know, but stop calling me Jim” (not my name) She looked at me with this paniced look on her face until she realized that I was just kidding. Hey there’s nothing like kicking someone when there down, aye? I told her that the next time we go out to dinner she should order the seizure salad. (ba-dump crash!)

Through all of this… my daughter reminded me while I was taking her to school this morning… Today is my 19th wedding anniversary! I love her now more than ever.

E3

2

Happy Anniversary!

Sorry to hear about your wife’s seizures but it sounds like you are handling it well - with compassion and humor.

That sounds like it could have even been a lot worse. Perhaps she is the luckiest person alive!

3

I’m epileptic, too. About a month ago, I had two seizures in one week, which is actually very rare for me (mine average about one a year). Both of them occurred while I was sleeping.

I had fallen asleep on the couch. When I woke up, I was across the room. My head was under the coffee table, and my face hurt, bad. Turns out I’d gotten a serious rug burn on my face. The next one was very similar, except this time, I just woke up on the floor, between the couch and the coffee table. My face hurt, again. This time, I’d gouged my own face, pretty badly. Oh, and the rug burns from the previous seizure hadn’t healed yet. I felt like wearing a sign around my neck at work–“You people know I have seizures. Quit asking if I was in a car accident!”

Oh, and Enright? Both of the neurologists I’ve had have advised very strongly against generic anticonvulsants, Dilantin in particular. I’d ask your wife’s neurologist about it.

4

Thanks! I found that out! My wife’s neurologist forgot to indicate “no generic”. My wife didn’t know until she picked up her perscription and it didn’t look the same. She called the dr and he thought it would be ok until her next office visit. She had her appt today, and he’s going to try Keppra. Do you know anyting about that?

E3

5

Nope. Never heard of it, in fact. Must be one of the newer ones. I take Carbatrol. It’s a time-release carbamazepine (Tegretol) capsule. Works pretty well, for me, except when I have really bad PMS and forget to take it. That’s why I had those seizures last month. Oy.

6

I haven’t had one in 17, yep, 17 years. I was diagnosed at 4 after having a Grand Mal involving cardiac and respiratory arrest shortly after having a benign tumor removed from behind my right tonsil. It was also discovered that I had Petit Mals too.

I still go to the same pediatric neurologist (he said he will continue to see me as long as I don’t mind going to a "kid’s " doctor). He tried to take me off my meds when I was 11 (puberty started when I was 8!). It took 10 months to walk me off, and I was off 9 days before having another cardiac/respiratory arrest Grand Mal. I went back on my Dilantin and Zarontin right then and there.

I came off my Zarontin (I was still taking liquid – yech!) last summer. The doctor has approached the possiblility of coming off the Dilantin again, but I said “NO!”. I’m a 7th Grade teacher. I don’t want to have a seizure in front of my class. Furthermore, my Mom lives with me for health reasons. If I have a seizure, I’ll lose my driver’s license, and Mom doesn’t like to drive anymore.

I am getting married in March, but we have decided we don’t want any kids, so that’s not really a concern in reference to the Dilantin.

My liver? I’ll worry about that later. Right now I’m focused on my career and my Mom’s health.

7

Have you considered switching to another drug, Home? 17 years is a long time to be taking Dilantin. There’s some good ones out there now, and IIRC (it’s been a while since I’ve taken Dilantin) really long term use of it can cause some problems (can’t remember what, though–kidney? Liver? Argh.)

I like the Carbatrol. Regular Tegretol levels drop very quickly if you’re not extra-super-precise with the time that you take them. Carbatrol stays in your system longer, and doesn’t make you cranky & tired if your levels dip (as Tegretol did with me, every freaking four hours for several years).