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JME, Pregnancy,and Being Med Free
Tue, 06/20/2017 - 12:43Topic: Women With Epilepsy
Hello all. My principal question for the group is whether or not anyone has had luck phasing totally off medicines for the length of a pregnancy and been seizure free. A little personal context below...
I know various conversations like this have happened in the past but I wanted to see if anyone had any new or recent experience to offer. I am 33 yrs old, diagnosed at 23 yrs with JME and put on Keppra shortly there after. The dosage was always prescribed at 1000mg daily but i have never taken more than 500mg daily (i am a bad patient and believe i know my body better than any doctor). That dosage keeps me seizure free. I actually didnt have any incidents for 7 years and i decided to take myself off medicine. I was fine for almost a year and then had a not-so-fun tonic clonic that ended with 7 stiches in my head.
Since then i have had half a dozen more spread out of 4-5 years and only when i am extrememly tired and hungover. I am also not a model patient (i party, I travel, I do not follow a routine, etc).
My husband and I are starting to plan a family with a timeline of trying to get pregnant in about 18 months. The current plan with my OBGYN is to lower my dose to 250mg daily in 6 months. If that works for 6 months, then i will try to take nothing for 6-9 months and see how it goes. If all goes well and there are no tonic clonics, then i will try to get pregnant. To fix the whole "bad patient" part, I will only be working 15 hours a week and only a few days a week in an effort to establish a solid circadian routine in my life. When i am pregnant, I will not work. I already do not use alarms. Every seizure i have ever had is because i "have to wake up" rather than my body waking up when it feels its right.
My question is has anyone had luck phasing off medicines, taking life easy, and survived the pregnancy without medicines and seizures?
[After the baby is born, i will have a lot of help to make sure i do not wake up various times in the middle of the night.]
Comments
I did. I had 3 episodes. I
Submitted by murr88 on Tue, 2017-10-10 - 12:17
I did. I had 3 episodes. I took valproic acid for 5 years, no seizures, but had epilepsy activity on the EEGs. Then I slowly stopped to take the medicine. No medicine, got pregnant, gave a birth (stimulation). When my kid was 2yo, I had a seizure. Now I'm on Topamax for 4 years.1. I was 22 when I gave a birth. Pretty young, I think. Now I'm planning the second baby, and I'm afraid to stop taking the medicine.2. I was taking Magne B6 during all the pregnancy. I believe that it is really good for epileptics. But magnesium makes troubles with stool. So, now I bought just B-group vitamins.
It's nice to hear your story
Submitted by mary_maya on Sat, 2017-10-21 - 05:55
It's nice to hear your story and all your effort towards pregnancy.
thanks for the help and
Submitted by elleblack on Mon, 2017-07-10 - 11:47
thanks for the help and advice. I do need to find a good doctor here that I can work with. I had a great doc at Georgetown in DC but now I live in Mexico City. Doctors here are great but I have not connected with a neurologist in over 5 years (all anti-seizure meds are available over the counter here). There is a great doc very famous for only high risk cases (i also only have one kidney cause of some cancer a while back). I will plan to meet with him and see if he can recommend anyone on the neuro side. The only thing that keeps echoing in my mind was my doc in DC telling me that the effects of Keppra were simply unknown, and that there was once a time when everyone thought Depakote was safe and now we know it to not be safe. He was the head of research on epilepsy at NIH and I really enjoyed my visits with him. But his words do give me pause. He spoke of Keppra simply being too new of a drug to have long term follow up studies and determine its safety for a child. My thought is that i really want to try without meds and if i cannot successfully be pregnant and not seize, then I will use a surrogate (my sister who has already volunteered).