AEDs for Juvenile Myoclonic Epilepsy

[Kate123]

Hi all,

I was diagnosed as having juvenile myoclonic epilepsy when I was 13 when I had a large grand-mal seizure induced by flickering lights on a TV. Seizures have always been brought on by flickering light, and I'm particularly prone when I'm tired, stressed or low in blood sugar. I've been on sodium valproate for about 15 years now and it's controlling the seizures really well, but I have been told not to have a family as the valproate will cause neural tube defects. My neurologist was really dismissive and said that was my only option. I disagree - there's usually a way round everything, right? (Incidentally, he does not have epilepsy, I asked him!)

Does anyone know of any other anti-epileptic drugs for juvenile myoclonic epilepsy that I could investigate being switched onto from the valproate, so I could start a family? I can't just take this one person's rushed opinion as gospel!

Thanks ...

Kate

[angel]

look at this site

http://www.epilepsy.com/info/women_pregnancy_fda

Women who are pregnant or considering pregnancy are rightly concerned about whether the medicines they take might cause birth defects or other harm to their developing baby. Doctors are looking for the same kind of information when choosing the best medications to prescribe for young women. In the United States, the Food and Drug Administration (FDA) is one source of guidance. The FDA looks at the evidence available about the risk of harm if each medication is used during pregnancy. Then it assigns each one to a "Pregnancy Category" (A, B, C, D, or X). The category for each medication is reported in its package insert.

If i were you I woud go through the list of anti-epileptic drugs online and go by "Pregnancy Category" (A, B, C, D, or X) with meds

Keppra is category C meaning =here have been no adequate, well-controlled studies in women, but studies using animals have shown a harmful effect on the fetus, or there haven't been any studies in either women or animals. Caution is advised, but the benefits of the medication may outweigh the potential risks.

Category Description

A Adequate, well-controlled studies in pregnant women have not shown any risk to the fetus in the first three months of pregnancy, and there's no evidence of later risk either. Very few medications have been tested to this level.

B There have been no adequate, well-controlled studies in women but studies using animals have not found any risk to the fetus, or animal studies have found risk that was not confirmed by adequate studies in pregnant women. Not many adequate studies have been performed in pregnant women, so the first situation (not enough information) usually applies if a medication is assigned to this category.

C There have been no adequate, well-controlled studies in women, but studies using animals have shown a harmful effect on the fetus, or there haven't been any studies in either women or animals. Caution is advised, but the benefits of the medication may outweigh the potential risks.

D There is clear evidence of risk to the human fetus, but the benefits may outweigh the risk for pregnant women who have a serious condition that cannot be treated effectively with a safer drug.

X There is clear evidence that the medication causes abnormalities in the fetus. The risks outweigh any potential benefits for women who are (or may become) pregnant.

[Calley33]

I'm Calley, and was diagnosed in May with Epilepsy, and my neurologist narrowed it down to Myoclonic Epilpesy two days ago. We still have to narrow it down further - juvenile or progressive, but 'till then, I'm on Depakote (1250 mg/day) to prevent the tonic-clonic seizures and and klonopin (2mg/day) to help with the anxiety and to prevent the myoclonic jerks at night.

I'm happily married, living in New England under a blanket of snow with my two chocolate labs and four egg laying hens, working part time in interior design. I don't drive, and I'm not sure I would if I was allowed.

I look forward to getting to know you all!

[Calley33]

My neurologist told me two days ago that there are safe drugs to take if you want to start a family - don't give up!!!! I know it's a sensitive subject, but there is also adoption!

[Bernard]

Hi Kate,

There might be another drug that will control your seizures and be less risky for birth defects, but when you start the anti-epileptic drug trial and error merry-go-round, you never know where the ride is going to take you.

I would highly recommend you look into EEG neurofeedback. My wife was able to gain 100% seizure control with it (and a pseudo-LGIT diet) and start our family without being on any anti-epileptic drugs.

It may or may not work the same for you, but at least you don't have to experiment with your anti-epileptic drugs and possibly unbalance your system's tolerance for Depakote/Epilim/valproate. IOW, it won't hurt anything (other than your pocketbook) to try.

[Kate123]

Hi guys,
I've only just seen all your replies - thanks so much for all the encouragement! I'm trying to find a different (more positive!) neurologist and see what other options there are - it would be great if I could manage it without any anti-epileptic drugs ... especially now I know that some others have been able to do this just fine. Really encouraging. Definitely not going to give up yet!

Hope your new year has started well

Kate x

[stilldancing_98]

I was on Depakote when I had my son. Don't have a child on it. He has epilepsy, he was born 6 weeks early, scoliosis, reflux in his kidneys, only has one now, slightly mentaly retarded. I was not trying to get pregnant. It was a surprise he is the love of my life. He had with drawls from the medication and now he is on it for myoclonic seizures. High blood pressure for his one kidney. He lost the other one. Very good sense of humor. Thank the Lord. And loves his mommy.lol My epileptologist said unfortunatly that it is one of the worst for birth defects.