One Day I Will Be Seizure Free!

[OrganizedChaos]

It has definitely been a difficult couple of months. From the moment I found out I was pregnant I knew it wouldn't be easy. I knew I would have to come off the Topamax which was controlling my epilepsy wonderfully for years.

I was diagnosed with epilepsy at age 14 & had been on pretty much every anti seizure medication out there & only Topamax really worked.

When I had issues with Lamitcal while I was pregnant my neurologist took me off any medication completely. I was fine until the last couple weeks of my pregnancy, then I started having seizures & it hasn't ended.

I keep having break through seizures probably due to the fact that I'm sleep deprived & that I'm changing meds (going from the Keppra they put me on in the hospital back to Topamax).

I really hope to be seizure free soon because I love my son & I want to be able to fully care for him, which I can't now. It kills me because I can't breast feed & I was looking forward to it & now my mom has to watch my son at night so I can get enough sleep.

But one day I will be seizure free!!!

[OrganizedChaos, LVN]

My triggers are:

heat

elevated temp

hot flashes

extreme stress

being startled

strobing

lack of sleep

alcohol -- even the amount in mouthwash

Ah yes, alcohol. If I drink too much I will seize. I can't tell you how many times I woke up in the ER when I was younger because I wanted to "fit in" & drink like everyone. Yeah. I can drink, but I have a limit.

[WonderousIvy, BSN]

Yay! Other people like me:)

I've had seizures since I was 10 or 11? Ive been on Depekote,Topamax and Keppra. I'm on Topamax and Keppra now- I'm in the middle of coming off of topamax. My husband and I want to have kids and the high probability of birth defects on topamax just isn't worth it. I also had extreme mood swings on it.suicidal super depressed..its horrible idk how my husband stuck with me i was psycho some days lol. I'm going through it now also from time to time but it's getting much much better. I will say though, that my patience has declined. Idk if that is bc of the keppra or bc I'm a military spouse in a new area and have a lot going on. haha, i just know its not the time to mess with me! so far I'm just tired every time i lower topamax dose and have insane insomnia throughout the week. I have grandmal seizures also,primary epilepsy. My husband is Active Army and we're in Sacramento now. Completely blessed to see this epilepsy specialist at UC Davis,he's awesome. I've seen so many drs all over the country and I've been diagnosed with :

Hair combing syncope

fainting spells

unexplained seizures

but this dr diagnosed the type of epilepsy i have in less than 10 minutes. Ran an EEG and confirmed his diagnoses. No one has been able to treat me as well as he has before I feel confident about him, haven't been able to say that about ANYONE. it's a good feeling. Stick with it, this isn't a 'sickness' we all know what can happen to us worse case scenerio. That's why its important to have a support system and let your neighbors know etc. One bad seizure and its bad news for us. Epileptics can't be unsocial people haha we need people around us. Join in on your local Epilepsy foundation do whatever!

This is a part of me and I let everyone know it that I meet:)

[OrganizedChaos, LVN]

Don't give up on having kids! If it's a dream if yours talk to your neurologist about it & can happen. :) If you're depressed & angry think about going on medication. I was depressed too & I was put on Zoloft (I also had anger issues) & now I couldn't be happier & my anger problems are pretty much gone!

Good luck with everything!!

[NurseGirl525, ASN, RN]

Just a little info on the Topamax and pregnancy. I did not know I was pregnant with my son until 10 weeks along. I was recovering from gastropariesis and I got pregnant on the very first try. I also have PCOS and endo and was told my chances of getting pregnant were slim to none. So I most certainly did not even consider the fact that I would do it naturally on the first try!! I was puking in the beginning but due to my gastro, I just assumed that is why I was puking. I had spent the past year throwing up every 30 minutes or so, so it was normal for me. I hadn't gotten my period in 2 months. I took 8 home pregnancy tests that all came back negative. So I assumed it was PCOS. One time I went an entire year without a period. I was on my way into surgery for endo when they realized I was pregnant. Not kidding!! I did a pregnancy test right before hand that came up positive! I got the biggest and best shock of my life!! I had been on Topamax 500mg the entire time. 500mg is a very high dose, but my seizures were out of control and that was the only thing at the time giving me some control. My first thought was what did I do to my baby? I did some research on it and at the time, there had not been any children born to mothers on Topamax with a birth defect. They had only seen it mice and that is what had prompted the warning. There really is not a whole lot that can be done with neural tube defects as that part forms in the fetus at the 21-28 day mark. Make sure you work closely with your neurologist on pregnancy. I was put on Gabitril for the rest of the pregnancy which did not do a whole lot for me seizure wise and since the baby's neural tube had already been formed, I could have probably stayed on Topamax and been fine and controlled my seizure activity a little better during my pregnancy. The time to get off the Topamax is before pregnancy.

On a side note, I have a very healthy, very smart 8 year old boy now!! I was so freaked in the beginning because of all of my meds and I had drank and was in a car accident. Those little fetuses are very protected in our bellies!!! The first thing I did when I saw him was count all of his fingers and toes because even though I was reassured that he was fine, I would not relax until after he was born and in my arms and I could see for myself!!!