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Epilepsy and TTC
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mysngs2u posted:
Hi Everyone,

My husband and I are eager to start trying to conceive... A little backstory...I've had epilepsy since I was 9 (partial complex seizures) They affect my right arm and I mostly have them in my sleep. When they aren't managed well I don't have them that often, maybe once a month or maybe even more spread out than that. It's been many years since they weren't under good control. Right now they are very well managed on 100mg of Topamax 2x a day. Seizure free for a little over a year.

I spoke to my doctor in the past about us wanting to start a family and he had mentioned the possibility of switching medications. At the time I was opposed to this idea. I've tried many medications in the past with no success. Topamax is the only one that's worked for me. He told me I could not get pregnant on Topamax and so I would have to come off of it and therefore would not be able to drive. So for a while now I was picturing this would be how my life would be when we would TTC and throughout pregnancy.

Recently though, I realized, maybe I should at least TRY switching to a medication that is safe to be on while pregnant. I think for my overall health if it works, it would be for the best. I have an appointment on the 19th to discuss with my doctor.

Thanks for listening. I'd love to hear any thoughts or others experience with ep meds and TTC.
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dancer86442 responded:
Hello mysngs,


If your Dr doesn't want you on Topamax, it is probably becuz it isn't recognized as a safe drug for a conceived child. So, you are rite, it would be for the Best. The Epilepsy Health Center may have a list of 'approved' meds. Check our 'Weblinks for Epilepsy; in Popular Discussions. May be some more helpful links there, too. I know there is a PG registry for ppl w/ Epilepsy. I Think it is posted on the EP center site too.


My second child was unplanned. Drs had just started me on Phenobarbital, after 10 yrs of 'trial & error' meds, it Worked to control mine. I was Told by by OB that Pheno's were 'safe'. Yrs later, it was discovered there were possible issues. Some my son was born w/ But, since I was 37 & considered 'high risk' the docs still think my age had a Lot to do w/ the issues. He was born w/ a hole in his heart (healed w/in the first week), underweight (wouldn't release him from hospital till he reached 5 Lbs.) a Huge lump on his head (took Yrs to disappear). He is now 25 & doing great, except for being a bit 'slow' in the head. No one but me seems to notice That Issue.


But, that is just My personal experience. I have read many other Journeys w/ PG & EP & everyone is all Fine. If you would like to read some of those stories they are in our archives. To find them just use our Tool "Search This Community' PG & Epilepsy should bring a lot of stories, info.


One thing that IS suggested: Start taking Folic Acid, Now, B4 trying to conceive.


Keep us posted. Know we care. Hugs & Good Luck!


Love Candi
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