Jump to content


Photo

Getting Pregnant With N


  • Please log in to reply
12 replies to this topic

#1 sarahsleeps

sarahsleeps

    Member

  • Members
  • 1 posts

Posted 02 August 2011 - 12:06 PM

I have narcolepsy and my husband and I are ready to start a family together. Currently, I take Xyrem and Nuvigil but my doctor said I would have to be off all narcolepsy medicine for the first 8 weeks of preganancy. He said after 8 weeks I could start the Xyrem again if I needed to but I would not be able to be on Nuvigil again until after the baby was born. My husband would rather I stay off all of the medicine during the entire pregnancy. I am a teacher and the thought of being off my medication while working and being pregnant scares me. When I am off my medicine I am asleep all of the time. Has anyone out there gone through a preganancy without any medicine - is it doable? Did anyone have a child and stay on Xyrem during the preganancy? Any help or advice would be appreciated. Posted Image

#2 narcshark

narcshark

    Member

  • Members
  • 84 posts
  • Gender:Female
  • Interests:Being awake

Posted 08 August 2011 - 05:25 PM

I have narcolepsy and my husband and I are ready to start a family together. Currently, I take Xyrem and Nuvigil but my doctor said I would have to be off all narcolepsy medicine for the first 8 weeks of preganancy. He said after 8 weeks I could start the Xyrem again if I needed to but I would not be able to be on Nuvigil again until after the baby was born. My husband would rather I stay off all of the medicine during the entire pregnancy. I am a teacher and the thought of being off my medication while working and being pregnant scares me. When I am off my medicine I am asleep all of the time. Has anyone out there gone through a preganancy without any medicine - is it doable? Did anyone have a child and stay on Xyrem during the preganancy? Any help or advice would be appreciated. Posted Image



I had both of my children prior to being diagnosed, so I was certainly off all meds. I found myself to be unbelievably sleepy while pregnant. I slept during my lunch break at work and also during any downtime at work. When I got home, I undressed on the way in the door and fell into bed every evening, exhausted and sleepy beyond belief. My husband had to wake me up and convince me to eat dinner in bed, I was that tired. I would then sleep until morning. I attributed this to simply being pregnant, as I think it is common for pregnant women to be very tired, even without N. The first and third trimesters were the worst...I was more functional during the second trimester. All in all, it was totally worth it, and I was able to keep my job (but working consumed all of my available energy).

I am a big believer in medication-free pregnancies. At the same time, I have heard of some people taking xyrem throughout most of their pregnancies and they have reported that their babies have turned out fine. I'm just not sure that enough women have done this yet in order to be sure that it is safe.

#3 Shell

Shell

    Member

  • Members
  • 6 posts

Posted 21 August 2011 - 09:51 PM

I as well had both my children prior to being diagnosed.

With my first one I was VERY tired in the beginning. Like PP said its normal to be tired while pregnant. I thought my extreme fatigue was due to the fact that in general I was fatigued, so adding pregnancy to someone who is already naturally tired is why mine was so much worse. Not to scare you or anything, just being honest, but I lost my job. I couldnt get up. I didnt hear alarms, or people. If I did get up, it was to go to the bathroom and maybe eat. During these times I was so weak and exhausted I could barely sit up without feeling out of breath. It got better in the 2nd trimester. Only to the point that I could actually get out of bed and do things for a little bit.

My second child was when I had my first C attack where I couldnt get up. I had them before, but I was able to function through them, so I just thought I got weak and very very tired all of a sudden from time to time. But this one was different. I was trying to wake from a nap and couldnt. My eyes kept rolling back in my head and I couldnt move. I tried to yell for my husband who I could see in the room on the computer. I was so terrified. I again, contributed this to pregnancy.

I can see your dilemma. When my husband and I were considering having another child (after I have been diagnosed), the thought of having to give up my medication was scary. To go back to the way things were. By no means have the medications been a miracle, but what little they do help means so much to me.

The decision is up to you. Its only 9 months to insure your baby's health though. Thats something I thought about. Maybe you might consider not working? Or have that as an option if you are unable to function. Maybe take a 10 month break or something like that.

I really hope you the best!
-Shell




#4 cmcardle74

cmcardle74

    Member

  • Members
  • 14 posts
  • Gender:Male

Posted 26 November 2011 - 10:16 PM

I'm wondering if there are more folks out there with pregnancy stories involving Xyrem. My new wife is a longtime PWN with pretty intense C but it is controlled amazingly well with Provigil and Xyrem. We'd been operating under the assumption that pregnancy wasn't an option for us because without her Xyrem (she can go without the Provigil if necessary) her narcolepsy and cataplexy are so profound as to require skilled nursing care, but taking Xyrem while pregnant wasn't an option.

However, she didn't know that the FDA had put it in class B. After doing some reading online, including here, I learned that this means "no known effects" and I read about some Canadian study with rabbits where nothing bad ever cropped up. With that information, we quite suddenly are seeing pregnancy as a possibility, so we're obviously kind of excited.

We'll be talking to her doctors and such before we do anything about that, but I'd also like to hear more here from folks who have stayed on their Xyrem while pregnant. Thank you--the stories in this thread are also informative. :)

#5 sleepymomma

sleepymomma

    Member

  • Members
  • 9 posts
  • Gender:Female
  • Location:OH
  • Interests:cooking, dancing, Egypt, taking care of my baby

Posted 15 December 2011 - 07:51 PM

I have narcolepsy and my husband and I are ready to start a family together. Currently, I take Xyrem and Nuvigil but my doctor said I would have to be off all narcolepsy medicine for the first 8 weeks of preganancy. He said after 8 weeks I could start the Xyrem again if I needed to but I would not be able to be on Nuvigil again until after the baby was born. My husband would rather I stay off all of the medicine during the entire pregnancy. I am a teacher and the thought of being off my medication while working and being pregnant scares me. When I am off my medicine I am asleep all of the time. Has anyone out there gone through a preganancy without any medicine - is it doable? Did anyone have a child and stay on Xyrem during the preganancy? Any help or advice would be appreciated. Posted Image



Hi there! I'm new to this group but joined for just this reason. I have hypersomnia and went through one pregnancy completely med free and I was miserable. I did it, but I was miserable. Was wondering if anyone else out there did anything special that made them feel better. I'm thinking about getting pregnant again but am scared to death remembering how I was the first time.

#6 sleepymomma

sleepymomma

    Member

  • Members
  • 9 posts
  • Gender:Female
  • Location:OH
  • Interests:cooking, dancing, Egypt, taking care of my baby

Posted 15 December 2011 - 07:59 PM

Hi there! I'm new to this group but joined for just this reason. I have hypersomnia and went through one pregnancy completely med free and I was miserable. I did it, but I was miserable. Was wondering if anyone else out there did anything special that made them feel better. I'm thinking about getting pregnant again but am scared to death remembering how I was the first time.



also, what is Xyrem? I've never heard of it. I take Adderall and Halcion. I'm terrified to get pregnant again. How have others handled being off their meds and be pregnant and run after a toddler??? Thanks- Krisha

#7 cmcardle74

cmcardle74

    Member

  • Members
  • 14 posts
  • Gender:Male

Posted 19 December 2011 - 11:00 PM

Just as an update...

My wife and I spoke with her new neurologist a couple of weeks ago. Her advice was that the choice to stay on the Xyrem was a case of risk versus reward. She asked if my wife needed to stay on it, and the answer is absolutely--she can't get through the day at all without it. So, our the doctor said we should go ahead and get pregnant since the FDA decided it was Class B. My wife takes Provigil during the day, and the dr. said to get off of that at least a month before trying to get pregnant, but she'd prefer we waited 3 months.

It'll be a few months before we start trying to get pregnant, but that's the plan!

#8 Sleepy Head

Sleepy Head

    Member

  • Members
  • 14 posts

Posted 24 December 2011 - 11:13 PM

I have went through this without any medication. I stopped all meds when we started trying (for our second child- I now have a 4 year old and a 7 month old). It was the hardest thing I've ever had to do (including 2 c-sections!). I was on the same medications that you are on and I made the decision not to take either because there just wasn't enough evidence on if it harmed the baby or not. I was not diagnosed until my oldest was about 18 months old; so with her, I breast feed but with my youngest, I decided not to breast feed because I had to be medicated to be able to care for him. I developed cataplexy during my 2nd pregnancy (which I still have and am still getting used to it and dealing with it); and at the hospital, I was terrified of holding him because I had was having several cataplexic episodes with all the emotions of having a baby.

I completely understand that working would be near impossible without meds. I work full-time, as well, and I have to admit that I probably should have been put on bedrest a few weeks if not a month before my son was born. I could not make it through the day without a couple naps-which my boss (also my friend) was very understanding and allowed me to take naps throughout the day.

I got pregnant mid-August and stopped driving mid-November and didn't get to drive again until mid-June. I went nearly 7 months without driving. We've decided (even though we only wanted two kids anyway) that 2 kids is all we can have because I physically/mentally can't handle the tiredness (which is such an understandment) and have two kids that need me and a job.

The decision to keep taking the drugs is a hard one. Drugs or no drugs- a baby will bring so much joy to your life. The whole time I was pregnant with my second, I kept thinking "what made me think I could do this," then I saw his little face. And now he's saying "mama" and I know why I thought I could do what I did.

#9 sleepymomma

sleepymomma

    Member

  • Members
  • 9 posts
  • Gender:Female
  • Location:OH
  • Interests:cooking, dancing, Egypt, taking care of my baby

Posted 04 January 2012 - 03:17 PM

I love that story! I'm off all meds right now and I haven't crashed yet but I'll probably need to check in daily. We're trying to conceive and I didn't sleep all night and haven't yet crashed. Will check in soon to let everyone know when I get pregnant. Would like to keep in touch with you mom's out there w/ Narcolepsy and Hypersomnia as kindof a support group system.

#10 sleepystarz

sleepystarz

    Member

  • Members
  • 39 posts

Posted 22 January 2012 - 11:59 AM

Sometimes doctors just make up advice without getting their facts straight. It's ridiculous to make a narcolepsy patient get off meds 3 months before getting pregnant. First of all, conceiving is so unpredictable, that you could end up off meds for a year before getting pregnant if you went with that method.

I was told by a neurologist that it's fine to continue medications while trying to conceive. It has to do with maternal-fetal circulation. The fetus wouldn't be exposed to the medication until about 6 weeks gestation.

#11 cmcardle74

cmcardle74

    Member

  • Members
  • 14 posts
  • Gender:Male

Posted 31 January 2012 - 10:11 AM

Sometimes doctors just make up advice without getting their facts straight. It's ridiculous to make a narcolepsy patient get off meds 3 months before getting pregnant. First of all, conceiving is so unpredictable, that you could end up off meds for a year before getting pregnant if you went with that method.

I was told by a neurologist that it's fine to continue medications while trying to conceive. It has to do with maternal-fetal circulation. The fetus wouldn't be exposed to the medication until about 6 weeks gestation.


Just to be clear, my wife is going off the Provigil, not all meds--she's staying on the Xyrem by necessity. We actually started this a bit over a week ago and so far everything is okay. She just needs to take more naps during the day, and we can work with that easily enough because I'm the one who works outside the home. The three-month timeframe is just our neurologist wanting to be as careful as possible and we appreciate that level of caution!

#12 lndsylou111

lndsylou111

    Member

  • Members
  • 5 posts
  • Gender:Female
  • Location:Tyler, Texas
  • Interests:reading, sewing, teaching, TV junkie, being with friends and family, cooking out

Posted 08 August 2012 - 09:21 AM

I have narcolepsy and my husband and I are ready to start a family together. Currently, I take Xyrem and Nuvigil but my doctor said I would have to be off all narcolepsy medicine for the first 8 weeks of preganancy. He said after 8 weeks I could start the Xyrem again if I needed to but I would not be able to be on Nuvigil again until after the baby was born. My husband would rather I stay off all of the medicine during the entire pregnancy. I am a teacher and the thought of being off my medication while working and being pregnant scares me. When I am off my medicine I am asleep all of the time. Has anyone out there gone through a preganancy without any medicine - is it doable? Did anyone have a child and stay on Xyrem during the preganancy? Any help or advice would be appreciated. Posted Image


Hi Sarah,

I am so glad I saw this post - I too am a teacher with narcolepsy and cataplexy. I am on Xyrem and Methylphenidate. My husband and I are wanting to get pregnant as well and my doctor said that I would need to be off all medication before at least 2 months and all during a pregnancy. The thought of being off Xyrem absolutely terrifies me and being able to function at work is a huge concern. I would not be able to be off work. I am curious as to what you guys decided, are doing, tried, etc...any advice would be appreciated! Hope to hear from you soon!

lindsey

#13 Bunny0726

Bunny0726

    Member

  • Members
  • 4 posts

Posted 28 January 2013 - 02:05 PM

My partner and I are doing some preconception planning and are so thankful to have found this forum!  I currently take Nuvigil for narcolepsy, supplemented by Methylphenidate (though I haven't had to use this much lately).  I tried Xyrem for a few weeks but didn't tolerate the medication well so don't think that it will be an option for me during pregnancy, nor am I certain I would take it even if I tolerated it well.  I'm currently looking for a physician/midwifery practice in the Washington, DC area that can best support us through future pregnancies (we're planning to start trying for our first a little later this year), and I'd prefer care providers that don't take a highly medicalized approach to pregnancy and birth (probably asking for too much given that I manage narcolepsy and a few other chronic conditions that will affect this pregnancy! :).  If you or your loved ones have suggestions for doctors/midwives in this area, I would so appreciate the recommendation.  I realize it's probably against the rules to "name names" on this forum, so please message me individually, or let me know how else to connect with you.

 

I was doing some research and alarmed to find that there's a current practice guideline recommending planned c-section for women with narcolepsy with cataplexy.  My cataplexy isn't severe and so I'm unsure that I would experience some of the same difficulties that the women in the referenced case studies have (or others on this forum who have described their own experiences) - such as having drop attacks during contractions, pushing phase of labor, and/or during epidural insertion.  I'm curious as to what the experience has been with those on this forum re the advice of their care providers about this issue.

 

Also, I've read that some experience worse narcolepsy symptoms throughout pregnancy and find it difficult, if not impossible, to work.  I'm wondering whether anyone has experience to share regarding requesting an accommodation from their employer (either to work from home, to take naps during the work day) and/or going on disability for a time during/after pregnancy. 

 

This is a lot of questions for one post, though I do very much appreciate learning from your experiences...links to other sources/articles are also welcome.