Epilepsy and Pregnancy
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Epilepsy and Pregnancy
Someone close to me, who is 33, would like to get pregnant. She
has a seizure disorder (diagnosed 7 years ago after 2 grand mal
seizures) and is on carbatrol. Her husband and she have been
trying for 5+ years to get pregnant but to no avail. After
seeking out a specialist, the dr. advised going off her drugs
completely under the advisement of her neurologist - which
would undoubtedly force her to significantly change her
lifestyle (i.e., no driving, etc.). Needless to say, this is
worrisome. They are contemplating adoption but are leaning
towards weaning off her meds in order to pursue IVF.
I'm wondering if anyone has gone through a similar experience
and can share any advice/insight? Other advice on local
resources - doctors, seminars, books, etc? All insight is
appreciated. Thank you
You want information/and maybe advise about having epilepsy and being
pregnant, in general? I have lived it two times.
Medicated fully both times. I have yet to give birth to my second child.
I am due in 2 weeks, but amnios and ultrasounds say everything is fine
with baby. My first child is a handful, and we are totally blessed to
have him. Epilepsy-wise, I know doctors (an ob, who I believe is a
fetility doctor as well, who is very positive about treating me while
pregnant and seizure disorder specialists), medications, personal
feelings. One thing is that I didn't have problems getting pregnant, so
I can't speak to that (that must be very difficult). But, I'd be happy
to talk with your friend about my experiences WHILE pregnant(not all of
them good, by the way. I have had a numeber of seizures while pregant
which has been very scary) and pass on whatever I can to help.
I am a woman with epilepsy and I've just had a beautiful baby boy in
2005. Here is my advice (in this order)
1) go to Stanford University Epilepsy Center - they are the foremost
center on Epilpsy in the country and we have it in our back-yard.
2) Ask for Dr. Fisher or Dr. Morrell - they are the foremost authorities
(Fisher is my dr)on the subject of reproduction, quality of life and
3) You don't have to get off drugs - I didn't - you just need to find
the correct ones that have a proven record during pregnancy. You may
need to transition off of what you are on now to something else.
watch this vedeo on line (ps that's me and Dr Morrell)
5) Don't skimp on the tests - get an amnio -
6) Find a good OB that will listen to you and give you the facts
streight and is willing to work with your Neurologist - I'll be glad to
Seizures have a wide variety of causes and so the underlying cause needs
to be clarified. There may be causes, such as neurotoxicity or
autoimmune reactions to tissue structures, that might be addressed
making the carbatrol unnecessary. I'm not saying that there is a cure,
just that there are times with chemical, physical, or nutritional causes
that impact the occurrence of seizures. Such things can also be related
to the infertility.
I am curious as to what tests have been done related to the difficulty
in getting pregnant. Of course, testing of free- fraction hormones in
both partners is absolutely vital in helping to elucidate what might be
the problem with pregnancy.
Thus, thorough investigation of that, with the proper tests, is of
importance in this case as well.
I have worked with patients with seizures and with difficulty
conceiving, but not at the same time. However, there are some areas of
commonality which I have mentioned above. Making sure that one also
explores alternative approaches is prudent to cover all bases and
potentially make the whole process easier with less drastic treatment
One place to look for advice on epilepsy drugs and pregancy is
the AED Pregnancy Registry, which ''is dedicated to determine the
safety of anticonvulsant medications that can be taken by women
during pregnancy to treat disorders such as epilepsy, mood
disorder, and chronic pain.'' http://www.mgh.harvard.edu/aed/
I don't know how helpful it is for advice on anticonvulsants and
I had two children while on Tegretol (the same as Carbatrol) and
they did not have any defects, although I did take folic acid,
which is supposed to reduce the chances. I also did not have
problems getting pregnant, although I did reduce my dosage first
(I didn't go off of it).
Good luck to your friend
someone with epilepsy
I gave birth to my first son in 2000-I was on phenobarb-something I had been on
most of my life/due to epilepsy-stay away from valproic acid-its been banned in the
UK for its high rate of spina bifida babies-Once I found out I was preggers I came
off my meds-my doctor at Kaiser said most women didn't have seizures when
pregnant-I restarted them at 8months-I figured sleep deprivation post baby would
up my chances of a seizure-I chose not to breastfeed to avoid the transfer of a
barbituate daily to my babe/we bonded great-I had a great big bouncing baby boy
(9.1) I had an epidural and amazingly enough I had my first NORMAL EEG sixmonths
post babe-my epilepsy was due to a frontal lobe injury sustained at birth(lack of
oxygen) pregnancy brain in my case helped heal my disease-not as uncommon as it
sounds. Baby number two was healthy also-I'm currently off meds and haven't had
an abnormal EEG for 6.5 years.
Does anyone out there know anything about epilepsy and
pregnancy? We are just beginning to think about having a baby,
and I am overwhelmed by the risks. I am currently on Gabapentin
(generic of Neurontin) to control my seizures, and my
neurologist tells me that not much is known about this drug and
pregnancy. He suggests I switch to Lamictal because it is
considered the best for pregnancy. I'm terrified of any drug's
affect on the baby, but obviously a seizure would be worse. I am
hoping some of you have experience with this and can give me
some good advice! Also looking for info on a good specialist to
would recommend you see a UCSF neurologist that specializes in seizures and ask
them which meds are best in pregnancy.
Neurontin is Class C and most OBs would recommend against it in pregnancy. C
means that animal studies show adverse fetal effects or there are no animal/human
better to find a class B medicine that controls your seizures BEFORE you get
another thought would be to find an OB that might know these things but I think the
UCSF neurologist would be the best way to go.
I have epilepsy and took Tegretol during the pregnancies of my
daughters, who turned out fine. I went through a lot of
testing/agony before the pregnancies. I lived in DC at the time,
and found a specialist I paid for out of my own pocket because my
insurance didn't pay for it. But honestly, no one was really
that much of a specialist, neither my neurologist nor a ob/gyn.
In the end, after testing to see how likely I was to have
seizures, I stayed on Tegretol (fairly high risk) but reduced the
dosage and took extra folic acid since Tegretol put the baby at
higher risk for neural tube defects. I also signed up for the
incipient (at the time) anti-epileptic drug registry at
Harvard/Mass General: http://www.massgeneral.org/aed/ which is
''dedicated to determine the safety of anticonvulsant medications
that can be taken by women during pregnancy to treat disorders
such as epilepsy, mood disorder, and chronic pain. '' and may help
you determine your risk. I did decide it was more important to
risk the defects than risk a seizure and for us it worked out.
I went through this very difficult time about 5 years ago. I was taking
Tegretol, and was told by everyone that it was better to stay on the
medication than have a seizure during pregnancy. Tegretol was
associated with a slight increase in the risk of neural tube defect, so I
took a lot of folic acid (10 times the RDA). In addition, I was given an
extra ultrasound to check the health of my baby's heart. It was fine.
It was hard for me -- I was scared the whole time -- but ultimately, I had a
very healthy baby, who's now a completely healthy 4.5 year old. The
overall risk associated with most medications is relatively small, though
it is frightening to think about.
I would recommend Joanna Cooper as a neurologist (she listens well,
and takes extremely good care of you), with only one caveat -- she's
very busy, and tends to be overbooked. However, I chose her because I
wanted a female neurologist -- someone who had really thought about
pregnancy, at least once. She had.
Feel free to contact me if you'd like.
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