10 replies to this topic

[hannahpratt]

I am pregnant. I'd like to share with other moms about their experiances. I've been feeling a little extra tired lately and kind of alone. I have never met another woman who has had narcolepsy, let alone, one who has had children. I guess I am just seeking someone to identify with. I feel like the only narcoleptic pregnant mom in the world.

[sleepless sleeper]

you're not the only one in the world, and you're going to be fine.

are you married? is your spouse supportive of you? the first couple months of your baby's life will be difficult for everyone until he/she begins to sleep more than a few hours at a time with a schedule. it's going to be important that your husband does just as much in the middle of the night with the baby as you do. it is difficult to 'just go to sleep' on que, but try as hard as you can to sleep when the baby sleeps. it was difficult for me. it's a must that you not worry about what the house looks like during this time. you must snatch up anytime that you can get sleep when the baby allows it. some people think that these moments are the ones that allow you to catch up on chores. don't listen to them, lol. always remember that narcolepsy is a real medical condition and needs to be treated as such.

[hannahpratt]

Yes. I am married. My spouse is supportive and I will have plenty of help when the baby gets here. I just want to have a healthy pregnancy, a healthy baby, and I want to be able to stay awake during the delivery. Every pregnancy is different and I am feeling a little more tired than usual with this one. It makes me feel a little less adequate when I am nothing but tired all the time and I am so sick of hearing the word lazy. It is just frustrating. I know I am not the only pregnant woman with narcolepsy in the world but it would just be nice to be able to identify with someone.

[sleepless sleeper]

i thought maybe this was your first one. my second one definitely had a more profound affect on me. i tried as hard as i could to breastfeed my second one, but i had to get back on my meds. i barely made it to four months of nursing him, but that was the time period that the pediatrician gave as being crucial if i could make it. i did, but it was so hard. i don't really know what else to say other than it did get more difficult for me with a second pregnancy. do you have any specific questions? you can send me a message if there are things you want to say but are uncomfortable saying them. also, i can introduce you to other pwn mommies if you'd like.

also, you are NOT lazy. don't let anyone say that to you. explain what is going on, and if they don't want to understand, then they are making a conscious choice to be an a**hole to you and not respect you. they need to accept it regardless of whether or not they get it.

[hannahpratt]

I don't really have any specific questions right now. I do feel really uncomfortable asking people questions about N who are completely anonymous but I would really like to be introduced to other mommies with N. I tried to send a private message but it seems you are no longer accepting them.

[sleepyslp]

I am pregnant. I'd like to share with other moms about their experiances. I've been feeling a little extra tired lately and kind of alone. I have never met another woman who has had narcolepsy, let alone, one who has had children. I guess I am just seeking someone to identify with. I feel like the only narcoleptic pregnant mom in the world.

I was diagnosed with narcolepsy without cataplexy in Sept 2010. I'm currently weaning myself from clonazepam. I want to get pregnant but feel scared and alone, too. My husband wants to be supportive but his own grief at learning of my diagnosis sometimes gets in the way and comes out as anger. I was supposed to be the "healthy caretaker" and now he sees this as more of a struggle than it probably is. I know he'll be supportive but I'm freaked out. My doctor told me I should expect to be more tired than usual but he can't guess how my body will react. I feel for you and I hope your pregnancy goes well. I've been gathering a network of friends to help me while at work and, luckily, my family lives close so when my husband's out of town I still have support that I hopefully will not need to call upon..but that's was Dr's advice. Get lots of support and don't be afraid to use it. God luck!

[MsWebRaven]

I, too, was diagnosed with Narcolepsy without Cataplexy in September 2010 and had to stop breastfeeding to start Provigil (switched to Nuvigil 3 months later). We are now trying to get pregnant again and I've stopped the Nuvigil too. There just isn't enough medical information on it with respect to pregnancy. I survived my last pregnancy without even knowing I had Narcolepsy, so I'm hopeful I can manage another. I just took a lot of lunchtime naps and made sure to get adequate sleep at night. Hope you have a wonderful pregnancy.

[hannahpratt]

Really? When were you diagnosed with N?

I, too, was diagnosed with Narcolepsy without Cataplexy in September 2010 and had to stop breastfeeding to start Provigil (switched to Nuvigil 3 months later). We are now trying to get pregnant again and I've stopped the Nuvigil too. There just isn't enough medical information on it with respect to pregnancy. I survived my last pregnancy without even knowing I had Narcolepsy, so I'm hopeful I can manage another. I just took a lot of lunchtime naps and made sure to get adequate sleep at night. Hope you have a wonderful pregnancy.

[hannahpratt]

MsWebRaven,

I'm sorry I just re-read you post. I got stuck on "I survived my last pregnancy without even knowing I had Narcolepsy." I don't know much about Nuvigil and I took Provigil in my early twenties and felt the side effects out weighed the benefits. So I went back to my original med. I've found the original med I was prescribed at 15 really works best for me. However, it makes me a little leery to talk about medication on the internet. You know. I would like to feel more open but there's so many people who don't know what narcolepsy really is. It is amazing how many people can be so judgmental about N and/or the medications that are prescribed to manage it. Sometimes I just want to tell people that just because they have been fortunate enough not to have experienced something doesn't make it any less real.

So I listen to the doctors and try to take the opinions of non-medical professionals with a grain of salt. I have had two healthy children and one on the way. I hope you can continue to manage N medication free. It isn't an option for everyone. Good luck on trying to get pregnant.

[Sleepy Head]

I was diagnosed about 2 years ago after having a child. My husband and I decided that we wanted to have another and we got pregnant last August. I stopped taking all my meds- Xyrem and Nuvigil- in July so it wouldn't be in my system. This was a tough decision, because I had a 3 year old and worked full time. By November, I could no longer drive the 11 miles to work. I also developed cataplexy around month 3 of my pregnancy. I now have a 2 month old and a 3 1/2 year old and I am taking my Nuvigil and 1/2 of my Xyrem and I still have small episodes of sleepiness. My cataplexy hasn't went away but it has gotten better.

My recommendation is to go to someone to talk about things. Husbands are great but no one understands this "disorder" unless they have it. I did this and it did help. I talked about everything from work to being tired to getting big! I took on a lot of guilt because of not being about to drive. We don't have family around so my hubby drove me every day and it took a toll on him and his job. My daughter couldn't understand why I was so sleepy all the time and it was difficult becuase I was too tired to play with her.

In the end, when you hold your baby, it is all worth it but I do recommend getting a non-partial person to talk to. The one good thing is that I am more "rested" after the baby was born than before- other mothers are jealous ! I wish you the best.

[MsWebRaven]

It's been a struggle not taking the Nuvigil, but I'm managing so far. If the home test is correct, then I am 7 weeks pregnant now. I go for my first appt on Tuesday.

I definitely realize that being med-free with N isn't for everyone. I'm going to give it a go though. I do plan to talk to my OB about N and the meds I was taking, etc. to see what her thoughts are since I wasn't on any of them last time she saw me.