Pregnancy Help

[rfranklin]

I have seizure disorder, complex partial seizures, Epilepsy whatever term is suitable. I had my first at 17 and had an MRI and the results were inconclusive and the same again at 18. Then I began having severe migraines around 21 when I met my husband. For five years I went from doctor to doctor, in addition to having increasing sleeping problems (which I have had my entire life, but not that bad). I went on Lunesta, which lost its affect after about a year and then was on Ambien for about three.

My internist was not thrilled due to me being so young. I thought maybe it was birth control pills causing my migraines and went off those. Then I went to an ENT and was on Allergra. I had good and bad days. My internist (who is amazing, but very conservative on his views of medication) finally sent me to a neurologist the summer I turned 27. My neurologist is not only academically and medically at the top of his game, but embodies all that a doctor should. Yet, even he put me on various pain pills and others, among them a Menstrual migraine pill. To no avail after the end of summer he said I am "incureable". I told him I was going to a migraine specialist who recommended I go off everything to start with. That day I had my third and fourth seizure and found out I had epilepsy. My paternal grandmother, who is not alive, had epilepsy and was on phenobarbital.

He asked why i hadnt told him and I saw no reason not thinking it is genetic or it has to do with migraines. I had two that night, it was Septmeber of 2007. I was in graduate school and in my last semester before beginning my thesis (which I am currently doing) and had to drop out. I was so out of it and being as small as I am dropped from 115 lbs to 105. I could barely walk and was still eating the same. I was put on potassium pills and topomax which made me even worse and slur my speech and walk funny. I was switched slowly to Depakote and it was hard the first weeks adjusting because I threw up alot but I took to it and am on 1000 mg of it.

I also went to the UCLA center for sleeping disorders and was put on Klonopins. Nearing the end of my thesis, my husband and I are thinking of starting a family next year, G-D Willing. I have spoken with my neurologist and how he thinks I have made an amazing recovery. Going off my current medication is out of the question and we had explored surrogacy but my neurologist had said that me being on what I am is no different than carrying the baby. However, my internist says its risky and my OB said I needed to go to a high risk doctor as well as her. She told me to go off the Klonopins and was not very supportive. I live in LA and wanted to know if there are any women who have been on either or one of these medications throughout their pregnancies and not had complications. Are there special epileptic OB's? Please let me know..I feel that only my neurologist knows where I am coming from and that risking my life is not an option I just wanted some reassurance. Any ideas.. Treatments..

[Bernard]

Hi rfranklin, welcome to the forum.

... I began having severe migraines around 21 when I met my husband. ...

There is a joke in there, but I'm not going to touch it.

There is quite a lot of info discussed in here about migraines. Maybe some of it will be helpful for you.

... increasing sleeping problems (which I have had my entire life, but not that bad). ... I also went to the UCLA center for sleeping disorders and was put on Klonopins. ...

Did the UCLA center test you for sleep apnea?

... I live in LA and wanted to know if there are any women who have been on either or one of these medications throughout their pregnancies and not had complications. ...

Depakote (aka sodium valproate) is well known to put babies at a high risk for birth defects ranging from cleft palate / cleft lip to low IQ and autism spectrum disorders. There was actually a class action lawsuit over it brewing in the UK not too long ago.

Lamictal was widely touted as the "safe" AED for pregnancy, but later evidence showed this isn't necessarily so.

Both Depakote and Klonopin carry the FDA's Pregnancy Category D rating (given to medicines that have shown clear evidence of risk to the fetus in studies).

There are some possible options that might allow you to improve your seizure control and lessen your dependence on these drugs. Have a look at the Proactive Prescription for Epilepsy. Based upon your history of having migraines, I'd suggest experimenting with ionized magnesium.

If you do move forward with a pregnancy while taking anti-epileptic drugs, please consider registering with the AED Pregnancy Registry.

[drarvindr]

Dear rfranklin,
Welcome to the forum. You need to know that depakote is pretty bad for a baby and here is the ideal scheme of things as of now:
1) Talk to your neurologist . He will most probably recommend you go off depakote so he will need to wean you off slowly and change you over to another drug temporarily , one that carries fewer risks to you and your potential baby(ies)

2) you need to know this before you begin trying - THERE ARE NO COMPLETELY SAFE anti-epileptic drugs in pregnancy. Some drugs are less dangerous than others , that's all.Suddenly decreasing your blood levels of drugs from 1000mg a day to nothing is not something i recommend (i've tried it myself when i was younger and dumber ) it can lead to status epilepticus ( it did for me) , which is a life threatening sequence of seizure after seizure and carries a 10-15% risk of death.

3) Women with epilepsy often have difficulty during labour , so you will need a good OB/GYN to handle your case. start hunting for one now.

4) IMPORTANT: While you are trying , even if you aren't pregnant , you need to keep taking high doses of folic acid. the usual dose in pregnant women as a supplement is 400 micrograms. you will need at least 1000( your neurologist will most likely prescribe these for you anyway). You need to keep taking them because the most common birth defects with anti-epileptic drugs are neural tube defects. The neural tube is the embryonic structure which develops into your baby's brain and spinal cord. It develops within he first few weeks of the first trimester , a point when many women don't realise they are pregnant. So you need to keep popping those folate supplements to prevent any damage to your baby's neural tube.

5) Not really a suggestion for the pregnancy , but: Many other women on this forum have dealt with epilepsy while pregnant. I suggest you start a group as i feel this is an important point and every new member needs to be informed of the best way to deliver a healthy baby.

6) If you want to experiment with alternatives (ionised mg+, maybe neurofeedback, or other therapies) , do so BEFORE you get pregnant. I don't feel that messing around with different therapies is wise when you are pregnant

I hope i've been of help
Best of luck and wish for you a healthy happy baby soon
Arvind
P.S. will be back on the forum properly (am currently zipping through like speedy gonzales when i get time) on the 27th , so if you have any queries , feel free to PM me and i'll get back to you

[skillefer]

*sigh* I had typed a beautiful (yet long) reply, and found out that I got timed out....so let me do this again.

Welcome to CWE. A very friendly group. Feel free to chime in, ask questions, or vent in the padded room here. E can be stressful at times. OK...now to the issue at hand...pregnancy.

I'm pregnant right now. I have grand mals, and I have had to switch to Dilantin while pregnant. Others here had perfectly healthy babies while on meds...including Depakote..so don't panic. The first thing you need to remember is to talk to your neurologist. Make sure he knows all the meds your on. Also, keep in mind that migraines have been reclassified as seizures..so if you could get a med that dealt with both your seizures and your migraines, that would be great. IF not, try Magnesium for the migraines. Several people here have been able to quit migraine meds because they found that Magnesium took care of it. Also, Magnesium can help with seizure control too.

So after you talk to your neurologist...make sure that you start taking at least 600mg of Folic Acid every day. Even though you aren't already pregnant. Why? Because taking it before pregnancy can bring the chances of neural tube birth defects down to almost nothing. And that's what you want.

Remember that Depakote, Dilantin, and Tegratol are all Class D drugs. They can harm the fetus. But also remember that 80% of women with epilepsy have completely healthy babies with no diminished IQ or later developmental delays. And if you take the folic acid now, that can give you an even better chance for a healthy baby. The thing to remember is to take care of you, eat right, excercise right, make the med changes now if you have to...it'll be easier on you and healthier on the baby. Your neurologist is your best friend. Trust their advice, add a magnesium supplement , and take care of yourself...and dont' stress. Stress isnt' good for you or a child in the future. Take it from me, a soon to be mom.

[janey]

I had 2 pregnancies while on Dilantin, approximately 30 years ago. Both kids are grown now and both now have masters degrees and are healthy. I even had permission from their pediatrician to breast feed them! His theory (which probably would not be allowed any more) was that it was better for the baby to slowly get weaned off the medicine rather than to have to go cold turkey.

I will say however that when I told my OB that I wanted to have my tubes tied while he did the 2nd c-section, he was really happy not to have to worry about another pregnancy.

Wish there had been a registry at that time -- I would love to have been able to give good statistics to someone.

[Junebug]

Welcome to CWE. A very friendly group. Feel free to chime in, ask questions, or vent in the padded room here. E can be stressful at times. OK...now to the issue at hand...pregnancy.

I'm pregnant right now. I have grand mals, and I have had to switch to Dilantin while pregnant. Others here had perfectly healthy babies while on meds...including Depakote..so don't panic. The first thing you need to remember is to talk to your neurologist. Make sure he knows all the meds your on. Also, keep in mind that migraines have been reclassified as seizures..so if you could get a med that dealt with both your seizures and your migraines, that would be great. IF not, try Magnesium for the migraines. Several people here have been able to quit migraine meds because they found that Magnesium took care of it. Also, Magnesium can help with seizure control too.

So after you talk to your neurologist...make sure that you start taking at least 600mg of Folic Acid every day. Even though you aren't already pregnant. Why? Because taking it before pregnancy can bring the chances of neural tube birth defects down to almost nothing. And that's what you want.

Remember that Depakote, Dilantin, and Tegratol are all Class D drugs. They can harm the fetus. But also remember that 80% of women with epilepsy have completely healthy babies with no diminished IQ or later developmental delays. And if you take the folic acid now, that can give you an even better chance for a healthy baby. The thing to remember is to take care of you, eat right, excercise right, make the med changes now if you have to...it'll be easier on you and healthier on the baby. Your neurologist is your best friend. Trust their advice, add a magnesium supplement , and take care of yourself...and dont' stress. Stress isnt' good for you or a child in the future. Take it from me, a soon to be mom.

I had two pregnancies while on Depakote. My oldest daughter was born without any problems, except low birth weight which is very common for babies who's mothers took Depakote while preg. My youngest daughter who is 4 was born with Valproic Acid, (Depakote,) Syndrome, AKA Fetal Anti-convusant syndrome, (FACS.) She has a lot of developmental delays among other medical probs including walking, feeding, (she needed to get a feeding tube before she could come home from the hospital because she had a high soft palate and could not swallow,) and will have delays prob for the rest of her life. My neurologist told me that he had never heard of FACS and did not realize that this drug had these kind of risks. *cough*Cough* Liar *cough**cough* A neurologist practicing for 25+ years KNOWS this, even those who are fresh from med school. Anyways, my point is, besides the Spina Bifida and Cleft lip/pallate that is most commonly caused by Depakote during pgncy things like this do happen. Both of my girls had low birthweight, (4lbs 15 oz and 4lbs 5 oz respectively at 37 wks.,) and had an adjusted gestational age at 34 wks and 33wks because of their weight. I myself would NOT reccomend a pgncy with Depakote because of the risks. My husband and I have both agreed that having another child when I'm on anti-epileptic drug's is not a good idea so we have decided that our family is complete. Of course that is my opinion but just be aware of these risks. And DEFINATELY get on folic acid before you get pgn't. Every pg woman should take folic acid regardless if they are on Depakote or not. It is good for the baby and decreses many other birth defects, not just neural tube defects.