Narcolepsy Forum Posting

Posted by Toast on August 19, 2001 at 08:37:30:

In Reply to: NARCOLEPSY AND PREGNANCY posted by Sleepy in Ohio on August 13, 2001 at 21:20:42:

Hi. I'm 27 weeks pregnant and also have narcolepsy. I was diagnosed less than a year ago, but have suffered the symptoms for much longer. I posted a couple weeks ago with a vey similar question to yours. I found out that I was 24 weeks pregnant and freaked out because I had been taking my medication the entire time. I asked my neurologist, my midwife and posted a message as you are, and no one had an answer for me. It was very discouraging. Finally, I contacted the company that makes provigal (modafinil), cephalon. They called me at work the next day. It turns out that I am only the eighth person on record to have taken the meds during pregnancy. They said that the other deliveries were to healthy babies, one woman delived three weeks early. They are going to keep track of the delivery and the babies progress. I'm basically a guinnea pig, but I don't mind as long as it will help other women out in the future. This is not saying that this particular medication is safe to use throughout pregnancy, but so far there have been no deformities or development problems. All of this of course is from the company's point of view. My neurologist and numerous other doctors that have involved themselves in my situation, feel that i shouldn't take any meds for the last three months. I can deal with that. It's not the easiest thing to do, since I have two children, 5 and 1, and that tiring as it is. The peace of mind knowing that so far everything is in perfect order with the baby and no harm has been done is worth the extreme lack of energy I have. At times it is unbearable, but it wourld be even more unbearable to worry about what might be happening to the baby. I think, that until there is substanstial documentation of the safety of the Central Nervous System (CNS) stimulants on unborn children, that women planning to become pregnant or discover they are pregnant should discontinue use of their meds. If you can find a way to manage with your sleepiness for nine months then then you are ready to have that baby because you value the life that you will give it. Maybe people who feel the need to have to continue their meds shouldn't have children at this point. It's an unfair judgement, but you just can't always have both. It comes down to the idea that to start that family, a woman with narcolepsy might have to stop other activities (work, driving, ect.) and focus only on the pregnancy so no medication needs to be involved. I don't mean to sound harsh or cruel if I am comong across that way. It's hard to express emotions while typing. Again, this is coming from someone who also has narcolepsy and who is 6 and 1/2 months pregnant. (The baby is kicking like a soccer star right now). I wish that there was information saying that it was okay to continue meds while pregnant, but there just isn't. I was told that you should not take ritalin. I was on Ritalin at one point in this pregancy myself, but only for a week. Anyway, life has become a big daze for me, but if I try my hardest to stay talking to people and go to the store and ride with other people, Ithink Ican make it through. There are definately days when I think I can't though. This year has been a huge test on me. I hope that I have helped you in some small way. You can read my message in Forum 14 under Pregnancy and Provigal. Good luck and let me know what you decided to do.

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