Hey there everyone

[slglaser]

My name is Sara and I'm 33 years old. I had my 1st gran mal seizure as a baby. However, after it was over I my muscles continued to clench and release. I was kept overnight for observation and the pediatrician put me on Phenobarbital as a precaution. In kindergarten they tried to take me off the meds since there had been no activity since. I ended up having a 45 minute long seizure and woke up in ICU 3 days later. (Still remember waking up there) Back on Phenobarbital

In 2nd grade I developed Petit Mal (Absence) seizures as well and Zarontin was added to the mix. 6th grade came and they tried to wean me again (I had outgrown the petit mal by this point). Didn't work and I spent that year going through med after med and wearing a 24 EEG to school. :soap: Yeah, that's fun to do in 6th grade! They eventually got me stable again. This time around on Depakane. I spent junior high (1987-1989) depressed and on Depakane. Who thought that was a good idea? I should mention that once I am taken off of a drug that has worked I am not able to go back on it. Not only will it not work, any of it's cousin drugs will also not work.

Right before 9th grade they tried to wean me again. (They kept hoping I'd outgrow the epilepsy) 3 weeks later I had a gran mal. :soap: For the next 4 years I was a walking zombie (just like in 6th grade). Tegretol triggered seizures. I had problems with Dilantin (hair growth) as well. Milanton, Celontin, Depakane, Depakote, etc. There were so many drugs I don't remember them all or what combinations I took them in. I went through all the meds available at the time (1989-1993).

During this time I developed other types of seizures as well. So in addition to the Gran Mal, I had Tonic Clonic, partial Tonic-Clonic, and Myclonic. Essentially I started having just about every seizure I could. The were almost always in the bathroom (usually while I was showering) and I could go from one seizure straight into another. I averaged 2 seizures a month, sometimes 3. I remember waking up on the floor of the shower wondering what I was doing there. So pretty quickly it was no shower for me unless one of my sisters was in the bathroom with me or the door was open (my sisters and I shared a bathroom) and I was keeping up a running conversation.

None of the drugs was working and by my junior year (1991-1992) I was one of the guinea pigs in the Felbamate (now Felbatol) experimental study. My seizures were not responding to meds at all. The worst was when I had 3 in one week, 2 of which were on the same day (finals week, junior year). I spent my 17th birthday in the hospital seeing if I was a candidate for brain surgery. However, I didn't pass the telemetry study since my seizures were generalized not localized. By this time I had been on Felbatol in varying dosages for a year.

When I got out of the hospital the doctors presented me with 3 options. An experimental drug available in Canada, another experimental drug available in both France & Mexico, trying a different dosage of the Felbatol, or trying (again) all the drugs we already knew didn't work in various cocktail combinations again. I chose to try the Felbatol since it was already in my system. I had a seizure at the end of that week and have been under control and seizure-free on Felbatol ever since. That was October of 1992.

I am now 33 and recently married a wonderful man (Nov.1 2008 ). We would love to have a family and I am looking for ANY information regarding Felbatol and it's effects on pregnancy. Also, I am doing everything the doctors told my parents I would never be able to do! I have gone to college, lived on my own, I have a career I enjoy, I drive, and I have a life. Also, I won't have to be "inheirited" by my siblings (none of the 3 have seizures or epilepsy). :clap:

So that' s my health history in a nutshell. Other than that, I work in the film industry as a sound mixer, live in Los Angeles, and try to convince our 2 cats that the household doesn't revolve around them. The last is a lost cause. :banana:

Sara

 

[RobinN]

Hi Sara - Welcome to CWE
I have a few friends in that industry in L.A. and I am also a cat lover.
Congratulations on your new marriage, and remaining seizure free.

 

[skillefer]

LOL...gotta love cats. I had three of them at one time....but hubby is allergic and was unwilling to get allergy shots. I live in Hemet...just a hop skip and jump from you. I think I replied yesterday...but from what I've found, felbatol is a class C. That means, there isn't any known link between felbatol and birth defects. However, as my neuro would say, there is NO 100% safe med. If your on an AED, you should be taking a folic acid supplement, prior to pregnacy as well as during, to minimize the risks of birth defects. Also, make sure you talk to your neuro before pregnancy if possible. And make sure you see him during, as your med levels may need to be adjusted due to the added stress of pregnancy.

right now felbatol is class C....but as my neuro would probably say, that's because they don't have enough data yet. Lamictal was class C until a few months ago. Then it got moved to class D due to a higher rate of cleft palate. Talk to your neuro and talk to your spouse about what you are and aren't willing to risk. My hubby and I talked about it 5 yrs before we got preggers...and for us, Dilantin was the best choice to switch to. Dilantin had a known track record and a 90% chance of a healthy baby. Each person is different. Others would say that that 10% chance of problems was unacceptable. for me it wasn't.
Good luck talking to the docs. Also, make sure that your ob/gyn has experience in treating women with epilepsy. My Ob does, and I wouldnt' trade him for all the tea in china.

 

[slglaser]

My husband's folks live in Hemet as well so I know exactly where you are! It's true Felbatol is a Class C but my neurologist has told me that's because of the lack of data. Unfortunately, switching meds is not an option for me. I was on Dilantin years ago (more than once) and it was horrible for me. My hubby has known since day one that I want to have children but may not be able to. Thankfully, he loves me and married me anyway. My neuro has me taking Metanx a combination of folate and B-vitamin (don't remember which B-vitamins). As for my OB, she handles high-risk pregnancies as well as genetic testing. I was floored when I went to see her the first time and she told me that based on the fact that I was taking Felbatol I needed to switch to a higher dose of birth control. The fact that she knew that (with FELBATOL!!! ) was really reassuring. Especially since it turned out to be true! (That means that for about 17 yrs although I was taking the pill I was really lucky! ) Hopefully everything will work out for us. If not, I decided a long time ago that if pregnancy wasn't an option for me I would probably try to adopt. Too many children out there who need good, loving homes.

Sara iano:

 

[skillefer]

*chuckle* It's a small world. As for your docs, sounds like you got some good ones. Like you, my hubby and I had decided that if pregnancy was a no no according to the docs, we'd adopt. Then, because I had been on the shot (depo-provera) for several years, it became, if we can't get pregnant....For me, it took about 4 -5 years after getting off depo to get pregnant. Good luck on getting pregnant. And just remember to take care of yourself and minimize your stress.