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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
Hi Elle,I am 10 weeks
Submitted by Kalyan on Wed, 2017-06-21 - 22:20
Hi Elle,I am 10 weeks pregnant after 17 years of trying with no luck. I was diagnosed with TLE a little over 8 years ago and was told that i was epileptic years before i even knew. When my pregnancy was confirmed at 6 weeks my doctors immediately reduced my dosage of carbamazepine from 800mg per day to 400mg...and within two weeks i began to experience petite mals. Even though I'm only in my first trimester because of the drastic changes your body goes through and your age...i am 38...it is almost impossible to not feel fatigued and needing to rest all the time. But no matter how much you rest you need your meds.I have asked my doc to go back to my regular dosage and am waiting for my next visit in one week to hear his decision.
I am currently in my 2nd
Submitted by Stormi on Sat, 2017-06-24 - 10:32
I am currently in my 2nd trimester(almost 3rd) and have been taking 2000mg of Keppra. It is far more dangerous for you to have a TC while pregnant than it is for you to take Keppra. We have been told our baby will more than likely be small, and as of now, he is measuring about a week behind weight wise. Everything else is perfect though.
I have JME and when I was
Submitted by Broooke denver on Tue, 2017-06-20 - 19:46
I have JME and when I was younger - I too was a bad patient. When I thought about getting pregnant I went off Depakote and started taking Lamictal. My son has had no side effects. During my pregnancy, I had a couple of jerks and one tonic-clonic. Having a tonic-clonic seizure while being pregnant scared me way more than any medication side effect ever will. Also, you may think that during your pregnancy sleep will be all honkey- dorey. But (for me) my sleep was off the rocker. Wake up hungry and had to get up so I didn't puke vs. the nice slow wake up I needed for JME. Not being able to fall asleep at night because of heartburn. When I got really big towards the end, sleeping in general just sucked. I was always uncomfortable. After my baby was born my husband took the "night' shifts - for about a week. It's really hard as a parent to sleep through your crying baby. Also if your planning on breast feeding your milk will come in at the same rate that the baby gets hungry. So you'll feel really sore if you don't wake up and feed. Then there was always the dreaded fear of a small jerk that would make me drop him. When I was pregnant I wanted the most control, I quit my job - no stress, no sleep requirements and made sure my meds were just right.