I was a college freshman, 19 yo. I had just had a breakthrough sz (first in 7 years) and went back onto phenobarb, but it was almost time for exams, and I didn't have a month for my brain to figure out what to do with it, so at the advice of a neurologist who saw me for five minutes and decided I was "allergic" to phenobarb (I was too out of it to be capable of telling him otherwise), I started Tegretol, after he promised I'd handle the effects better and there wouldn't be as many.
WRONG, WRONG, WRONG!!!!!!!
LIZARD
--- On Thu, 11/26/09, Cristin Filipuzzi <cristinfilipuzzi7@
From: Cristin Filipuzzi <cristinfilipuzzi7@
Subject: Re: [epilepsy] I am new. Please can I have some advice.
To: epilepsy@yahoogroup
Date: Thursday, November 26, 2009, 3:21 PM
Hi Liz. Well that is wonderful that you are now seizure free. Do you mind me asking how old you were when you were taking Tegretol and what side effects you had?
Take Care.
Cristin
____________ _________ _________ __
From: Liz Welker <lizard110366@ yahoo.com>
To: epilepsy@yahoogroup s.com
Sent: Thu, November 26, 2009 3:14:28 PM
Subject: Re: [epilepsy] I am new. Please can I have some advice.
((((((((Cristin) )))))))).
I am so sorry you and your daughter are going through this. Seizures are scary, no matter what, especially if you see them. I can tell you that they aren't nearly as scary to have, since we feel nothing at all, and her behavior afterward is very likely strictly post-ictal, meaning automatic "after-seizure" response from her brain because of the areas affected. Limbic (emotional center) impact is very common, and it's possible she has no idea why she reacts the way she does and may not even remember any of it. I experience panic for several seconds as my szs spread through the brain, but I know better than to be scared of them. I had my first one as a baby and know I'll be okay when it's over. I'm a 43 yo mom now and have had only about 20 GM szs, but there have been simple partials in the thousands, which also generally cluster and made me horribly sick until I started Keppra in July. I have not had even a hint of a sz since--first time ever!! :)
I can say from personal experience that I don't blame you at all for your fears about meds. AEDs are famous for annoying and even debilitating side effects and adverse reactions, and Tegretol gave me my worst of them all, but different people react differently to the various meds, and the more info you have, the easier it will be to make the call as to whether or not a switch or change in dosage is needed. Make your pharmacist your best friend. Read, read, read on any and all info about whatever med you choose, and keep your eyes peeled for any sudden physical, emotional, or neuro changes that may occur. (It's generally par for the course to experience some, sometimes significant, effects from a new med for about six weeks after it's begun, but if they don't lessen over time, a talk with the doc is warranted.) It took me until about 2 weeks ago to get a handle on the severe insomnia problems I was having from Keppra, but it's getting much better now,
since I'm taking a lower dose and have added 5-HTP. All of this can take awhile to navigate, but the more you know, the easier it can get. :)
GOOD LUCK, and please ask anything at anytime!
LIZ in RI, FINALLY COMPLETELY SZ FREE at 43!!!!!!!!!! ! :)
--- On Thu, 11/26/09, cristinfilipuzzi7 <cristinfilipuzzi7@ yahoo.ca> wrote:
From: cristinfilipuzzi7 <cristinfilipuzzi7@ yahoo.ca>
Subject: [epilepsy] I am new. Please can I have some advice.
To: epilepsy@yahoogroup s.com
Date: Thursday, November 26, 2009, 12:41 PM
Hello everyone. My daugter was recently diagnosed with having epilepsy. My daughter is turing 12 next month. In January 2009, my daughter had a seizure for the first time, shortly after falling asleep. Luckily I was right beside her. It was very scary. Her face turned blue, purple along with her whole body shaking, foam at her mouth. She actually stopped breathing for a short time. And I could not feel a pulse. Shortly afterwards she was struggling to breath again. She makes this choking sound at the beggining as well. When the paramedics arrived her seizure was still not ended. They gave her an injection of medication and provided the air mask. Afterwards when she opens her eyes and looks around a bit, she cannot talk. When she is finally able to talk she starts screaming and crying. Then she is vomiting for hours, shaky, and lightheaded, sleeping alot.
The folling day she had another one in the hospital.
She was admitted for 2 days. And we had followups with the childrens nurologist. Her EEG shows that she has an abnormality in the left hemishpere of her brain which is triggering seizure activity. Mostly in the 2nd stage of sleep.
She was not put on any medications. The doctor said that he wanted to wait and see if she would have anymore. Last Sunday at approx. 11:30pm it happened again. She had another one. Luckily I was right beside her again. We had a bad experience in the hospital, and she was sent home after waiting 10 hours with the paramedics beside her to see a doctor. A couple of hours later, she had another one.
She had an MRI done. Which came back ok. The doctor wants to put her on Tegretol. He says that it is about 80% effective. There are many side effects. And I am very worried about this. I am really scared to give her this medication. The majority of medications cause so many other problems in your body. Does anyone know of any information that may help me.
I really apprecieate it. Thankyou so much.
Cristin Filipuzzi
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