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.

[stilldancing_98]

Also, if you are having myoclonic seizures, they are the highest for passing on to our children. Please don't hate me for saying that, but I have researched this for a long time. It's not only the meds it's the seizures itself.

[mre00lc96]

This message may be late, but in any event, I thought I would reply. Has your doctor mentioned Lamictal (lamotrigine)? Lamictal has done a good job of controling my seizures (as long as I remember to take it). I have juvenile myoclonic epilepsy and was on Depakote for 5 years. When I switched neurologists after I graduated college, my new neurologist wanted to switch me to Lamictal right away. He said that for a woman of child bearing age, being on Depakote was not the best option. Lamictal is not without its own risks (cleft lip and palate) in pregnancy, but studies thus far have shown the risks to be far lower and less harmful with Lamictal and other sort of next-gen anti-epileptic drugs than Depakote. Taking supplemental folic acid is extremely important, regardless of what anti-epileptic drug you're on, if you are even thinking about getting pregnant. My OB/Gyn put me on 5mg/day. Consider having a preconception visit with an OB before you start trying to conceive. If you do become pregnant, please consider registering with the anti-epileptic drug Pregnancy Registry (Google it. The system won't let me post links.) It's quick and easy to register. I should add that going off your meds is probably not a good option. juvenile myoclonic epilepsy has a very high rate of recurrence even after being controlled with meds for years. It would do more damage to your baby if you have a seizure when you're pregnant than the possibility of birth defects with most drugs. If you switch meds, give yourself some time to get used to them before you start trying to conceive, and go with what works for your seizure control. Good luck!

[Meetz1064]

a link that you can use to email to ask for more information about the anti-epileptic drug Pregnancy Registry:

info@aedpregnancyregistry.org

Hopefully that will help you some.

Take care,

Meetz

[cubsmum]

i am 20 i have had myoclonic epilepsy for 7yrs now i have had 1 child and planning for another my doctor plans out my whole pregnancy i have 3 months of medication changes before concieving i get taken off epilim slowly over 10 to 15 weeks while increased lamictal which is harmless during pregnancy and very effective with seziures if you have any more questions i can help or get a hold of my doctor ( specialist dr silbert perth wa ) he specialises in pregnancy and epilepsy he makes pregnancy a breeze

[stilldancing_98]

Lamictal can worson myos or make them better. I can not take it. Myoclonics are a generalized seizure and I got them from a brain infection with cancer cells. I am going to VNS. Good luck with the pregnancy.

[SuzetteG]

Hi Kate! I know this is really late, but I'm hoping you'll get it anyway! I have juvenile myoclonic epilepsy as well, have had it since just before my 14th birthday. I went through quite a bit before I found a great neurologist who diagnosed the seizures properly. I just recently, while pregnant, met with an Epilepsy Expert in Nashville who told me that juvenile myoclonic epilepsy can be sporadically genetic. In speaking with him I mentioned that we had gone through my family lineage, both sides, to attempt to track where I'd received this gene because there was no injury that caused it. No one in my family has had epilepsy as far as we can tell. That's where the sporadically genetic came up. I found that rather interesting. The reason I met with him was because my neurologist now, who is amazing, wanted to increase my dosage of Topamax while pregnant. I was concerned, so he referred me to the Expert for an opinion.

Topamax works wonders for me. I'd been put on Phenobarbitol when the seizures first started. It's evil for juvenile myoclonic epilepsy, at least for me. Then on to Tegratol, I broke out with an allergic reaction. Then we tried Depakote, that didn't work well. Then on to Dilantin and that ruined my teeth and didn't help seizures either. Topamax is the only thing that has worked for me, and worked very well. Increasing the dosage was necessary. (My start out dosage was only 200mg and I went up to 400mg.)

My baby girl is healthy and happy. She will be a year old soon, no problems thus far. I'm crossing my fingers that this "genetically sporadic" thing doesn't rear it's head with her. If it does though, at least I know how to deal with it, unlike my family did with me. They did their best but it was hard for all concerned. As I'm sure you all know it can be.

My suggestion is to find a specialist/expert in your area in Epilepsy. They are the best when it comes to answering any questions you can think of, they will usually block out a two hour time frame to sit and speak with you. At least the one I spoke with did. And, they have studied numerous types of epilepsy, as it's their chosen field, and will have answers a general neurologist may or may not have. Good luck!

[gr33nr0se]

i'm on lamictal but i was also on keppra and topamax

[stilldancing_98]

My ex had myoclonic epilepsy. I never had myoclonic until an infection. It is very genetic. My son got it from his dad. And it didn't hurt that I had other kinds of epilepsy. But get this. I didn't even know he had them. His dad that is. He isn't on any meds. Never was. But We had a lot of genetic testing done to see if it was any thing else.But Alex my son has been on Depakote since he was born. I was on it when I was pregnant.

[gr33nr0se]

kate just be aware, im not allowed to go on depakote because it makes polycystic ovaries worse, so if you have any experience with pcos, make sure you mention it to your dr

[SuzetteG]

My ex had myoclonic epilepsy. I never had myoclonic until an infection. It is very genetic. My son got it from his dad. And it didn't hurt that I had other kinds of epilepsy. But get this. I didn't even know he had them. His dad that is. He isn't on any meds. Never was. But We had a lot of genetic testing done to see if it was any thing else.But Alex my son has been on Depakote since he was born. I was on it when I was pregnant.

Right, it can be genetic and it can be sporadically genetic where it skips generations for years and years. As it was explained to me, it's the 'luck of the draw,' in a rather unlucky sense for some people. Maybe your ex has juvenile myoclonic epilepsy? Sometimes people can live with epilepsy without meds without ever having a tonic clonic seizure and they're lucky enough to just have the myoclonic seizures (ticks) instead. I'm not so lucky. I have all three types and used to have wandering seizures as well, thankfully those faded. I'm also the one who got to have it skip generations upon generations before it luckily picked me out.