Epilim & starting a family

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Sezza

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Hi,

I'm new to this site. Its quite exciting to know there is a forum to answer any queries people might have.

A bit of background: I was diagnosed with Juvenile Mychlonic Epilepsy around 1992. I have been taking Epilim since then, but slowly have had my dosage reduced over the years and I am currently on 200mg per day.

My quesiton is: I am looking to start a family in the near future and my neurologist has advised me to go off the Epilim while I try to get pregnant and during the first trimester. Has anyone else, with the same condition as me, gone off epilim? Did you experience any seizures?

Thanks
 
Welcome to our home

:cheers:

I am glad to welcome you to CWE. Sorry, I can't personally help you. I have never taken Epilim, have adult onset tonic-clonic seizures, and am a 47 year old grandpa. That all kinda makes my experience irrelevant for you.

HOWEVER, I am sure that a few of our many members will be able to help you. They are all very supportive and most are willing to help others in their fight against seizures.

Anti-epileptic meds can have many side effects and I am VERY glad you have a cautious Neuro helping you through this great stage of your life. I hope your are blessed with a family when the time is right for you. As a grandpa of two and father of three, I really love little kids.

:cheers:
 
Hi Sezza! Welcome to CWE. :) If I remember correctly, Epilim is commonly referred to as Depakote here in US. I was on it for 9 years, in addition to phenobarbital. When I told my doctor that I was considering starting a family he took me off the Depakote/Epilim. He said there were higher chances of neural tube birth defects in children whose mothers took Depakote/Epilim. Especially if they were already on another Anti-seizure medicine. He also told me to get on prenatal vitamins, even before conceiving, as well as taking folic acid. I have had seizures since then. About 2 a month. I have tonic clonic seizures. However, in the last month, ...wow, month and one week, I haven't had any. Last month I started taking 1000 mg. of Magnesium and 3000 mg. of Omega 3 and Omega 6 complex (fish oil capsules) every day. If you are going to go off of the Epilim, you might want to seriously consider taking some vitamin supplements, and talking it over with your doctor. Tell him/her about the fact that you don't want to have any breakthrough seizures but you do want to have a family. Unfortunately, I was also on Depo Provera (birth control shot) for about 4 years to make sure that I wouldn't get pregnant while I was on Depakote. Since getting off of it, My periods have gone from 5 days long to 2 days long, and my husband and I have not been able to have kids...not for lack of trying. My doctor now suggests that I go see a fertility specialist. We've been trying to have kids for the last four years. So, depending on the type of birth control you've been using, if you've been using, you may have some difficulty getting pregnant anyway. I hope I was able to help.
 
Hi Skillefer,
Thanks for your reply and the tips on taking the vitamins I think I will definitely do something like that.
My Neuro advised me that if I could not get pregnant after 3 cycles, then I should go to the doctor as I might have polycystic ovaries....which is known to be caused by Epilim. Pretty scary thing to hear, but worth checking out.
I haven't actually had any seizures like the initial one I had - which occured when I was about 15 years old (now I'm 31) - I just woke up one morning staring at the ceiling (known as an absence seizure). Since then the seizures I've had have been more jerky movements as I'm waking up (myoclonic seizures). I used to get them quite regularly, but now its kind of every 3 - 6 months. I might get the rare one-off 'one-arm jerk' when I'm on the computer (during the day). But its nothing too crazy. It seems very well controlled and I'm on the lowest dose you can be on.
I'm not even off the Epilim yet and I've noticed my periods have also gone from 6 days to 3 days long - and that's been in the last 6 months or so. I wonder what will happen when we start trying. I've been on Levlen ED (birth control pill) for 10 years.
Gosh, its quite scary not knowing.
Thanks for sharing your story with me. I wish you luck in your quest to start a family and I reckon for sure you should go see a fertility specialist. Friends of ours didn't think they could have children and they've got a 2 year old boy and they just gave birth to twins. So chin up....it can happen!
 
Hi Sezza, most docs advise weaning of Epilim/Depakote/sodium valproate for women wishing to be pregnant because of the risk of birth defects. There is a class action lawsuit pending in the UK over this.

Please consider joining the AED Pregnancy Registry to help improve knowledge about rates of birth defects no matter which AED you are taking.

My wife was taking sodium valproate during her pregnancy with our second child. It didn't control her seizures at all and our child was born healthy and normal (with a touch of eczema/borderline asthma and farsighted).
 
Hi Bernard,

Thank you for sharing your information. The lawsuit is very interesting!

I totally plan to go off the Epilim when we start trying to get pregnant - its not a risk I'm willing to take to stay on it. My neuro advises it takes 7 days to get out of my system...and I am dropping to taking 200mg every second day, slowly weaning off it.

I really wanted to find someone who perhaps had the same level of epilepsy as me and who might have gone off it. I realise everyone is different, but it seems most of the people reponding to me seem to have a more severe case of epilepsy and are on 5 times the amount of epilim I am taking.

Anyway, thanks again for your advice. I really appreciate it.

Rgds
Sarah
 
When you are on it things change when you get pregnant. You gain weight, water in your brain and body. You have a whole person that you are responsible for. I was told I could not get pregnant. Ta Da. I had a boy. On Depakote. I was on every vitamin there was, I had my baby at the University of Washington. They told me there was less than 2 percent chance that he would have epilepsy, but that I was on the worst med for birth defects. Now I was willing to go thru with it then, but now , every day I look into his eyes. He regresses everytime he goes into clusters of seizures. His dad was so stressed out he left us. Now I just want you to think hard about your decision. It is not what you are willing to go through, if something does occur, which it does, it is the child who is going to go thru this, you, your family, school mates, it's hard. My son not only has epilepsy, he has one kidney, high blood pressure , behavior issues etc. Please , take your time in this. It's not just what you are willing to go thru. I am very sorry for being so blunt.I'm just a child advocate.Teresa
 
Sezza said:
I am looking to start a family in the near future
Click to expand...

Yay for you! I am going through the same thing, but a different drug. It can be so exciting to think about the future and yet it is incredibly stressful to think *if I do this I could damage my child, but if I don't do this I could damage my child and me, or ....*

I was on tegratol (carbemazpine), but am slowly switching to Lamictol. My epilepsy is closely tied with my horomones (no one should ever complain about their pms again!) and therefore my neurologist didn't want to risk not taking any drugs.

I now have an OBGYN who specializes in high risk pregnancies, a neurologist who listens and the greatest doctor... she is young, just finished school and has an amazing look out on the world. She thinks anyone can do anything with the right help - she is the one who found my OBGYN for me.

I wish you all the luck!
 
Just be smart, if your Dr. thinks you can come off your meds, then do it before you decide to get pregnant.Don't get me wrong. My son is #1 in my life. I love him so much I would do anything for him. But I wish I could take away his suffering. If you pray, pray hard.
 
Pregnancy

Pregnancy is such a difficult subject when you have epilepsy. I was taking tegretol and did get pregnant with twins. Healthy, beautiful, twins. Now, being frank, I was on a whopping dose of folic acid, prenatal vitamins, etc. well before I became pregnant. Since I have T-C (usually catamenial) seizures, my doctor and I thought it would hurt the babies more to go through a seizure as opposed to go off meds. Thus, coming off meds was never in the discussion.
Not only did I stay on the meds, due to the fact that my kids were born prematurely (25 weeks----a commonality when you have epilepsy) my kids received breast milk (yes, laced with tegretol).

I know the AED registry is working hard to understand and help with this issue, but there is so much we don't know. I did a lot of reading, vitamin popping, and praying for my kids. You'll find that many women have had perfectly healthy children.

I wish you all the luck in the world and if I can answer any questions, let me know.
 
The type of seizures you have have a higher chance of passing on to the next generation to. So it's not just a med. change. I know I sound mean and very forward. But it is a very, very serious thing.I know the craving of wanting to have a child.To have a family.
 
So I thought I'd give an update that I'm just over 4 months pregnant and have been off my medication for 5 months without any seizures.

I have experienced a few arm jerks - but it's once every week or so and always just as I'm waking up.

I've been for my 12 week ultrasound and have been given a very low risk factor for birth defects. Was around 1 in 15,000. Fingers crossed for the 18 week scan!
 
Thanks for the update.

My fingers are crossed for you.

Congratulations on your baby!
 
Well then lets be positive and go for it. I'm sorry I was so hard on you. Anyway, it sounds good so far. Are you getting scans done a lot. Dont mind me tonight. I am kind of out of it. Some seizures and a lot of meds.
 
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