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Trying For A Second Baby While Off Meds


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#1 sleepymomma

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Posted 20 December 2011 - 12:42 PM

Hey there! I'm new to this group and really need support from other people that have gone through pregnancy while off their meds. I have hypersomnia and currently take Adderall and Halcion. I am finding it extremely difficult to get up in the morning with my 16mo. old and am wondering how I am going to manage being pregnant and running after a very active toddler while off my meds. Can anyone relate to my situation? I am absolutely love my child and would love to have another baby but the thought of doing it again off scares me to death. If anyone has any suggestions they are all welcomed!! Thank you!!

#2 Sleepy Head

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Posted 24 December 2011 - 06:31 PM

I am not sure that you'll really want to hear my experience but I recently went through the same thing you are currently doing. I was diagnosed with Narcolepsy when my oldest was about 18 months old. I think that I started having symptoms in high school, got worse in college and the following years but I think my first pregnancy made the symptoms so prevalent that I had to go have it checked out.

I got into shape, was in a good place with this disorder and then we decided to "try" for a second- we didn't want our daughter to not have more family later in life. Well, going off the meds was hard (I take Xyrem at night and at the time, Nuvigil in the day). However, once I got pregnant (mid-August), I had to stop driving by the end of November (and didn't restart until my baby was a month old in June and developed cataplexy as well (which I am still trying to get used to). I worked full-time and that was hard! My boss, who is also my best friend was totally understanding- she actually told me to take naps in the day if needed.

If it had not been for my family, friends,and my wonderful co-workers I don't think I could have made it. My co-workers would shuttle me around if needed. You have to have a great support group.

The one thing that was the hardest is what that time period took from my daughter. I was so tired by the time I got home from work that I barely could make it through the evening to get her in bed. And reading a story to her was the worst. I would fall asleep reading to her or I'd hear myself "reading" to her and it wouldn't be the book at all- it was weird stuff like about cooking cupcakes or buying clothes! I still occassionally do this if I am really tired and she now says "Mommy, that is not how the story goes!" and of course that snaps me out of it.

I have a healthy baby boy now, who loves life. Even though I am almost fully medicated again, I do feel exhausted faster because of having 2 kids and working. However, I would not trade him for the world.

I guess my piece of advice would be this- this disorder should not steal life from you; the decision you make will be hard either way (deciding not to have a baby because of the disorder or deciding to have a baby, which will result in being beyond tired). We decided to 'deal' with the tiredness but it wasn't without frustration.

I wish you the best of luck either way you decide.

#3 sleepymomma

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Posted 02 January 2012 - 01:31 PM

I am not sure that you'll really want to hear my experience but I recently went through the same thing you are currently doing. I was diagnosed with Narcolepsy when my oldest was about 18 months old. I think that I started having symptoms in high school, got worse in college and the following years but I think my first pregnancy made the symptoms so prevalent that I had to go have it checked out.

I got into shape, was in a good place with this disorder and then we decided to "try" for a second- we didn't want our daughter to not have more family later in life. Well, going off the meds was hard (I take Xyrem at night and at the time, Nuvigil in the day). However, once I got pregnant (mid-August), I had to stop driving by the end of November (and didn't restart until my baby was a month old in June and developed cataplexy as well (which I am still trying to get used to). I worked full-time and that was hard! My boss, who is also my best friend was totally understanding- she actually told me to take naps in the day if needed.

If it had not been for my family, friends,and my wonderful co-workers I don't think I could have made it. My co-workers would shuttle me around if needed. You have to have a great support group.

The one thing that was the hardest is what that time period took from my daughter. I was so tired by the time I got home from work that I barely could make it through the evening to get her in bed. And reading a story to her was the worst. I would fall asleep reading to her or I'd hear myself "reading" to her and it wouldn't be the book at all- it was weird stuff like about cooking cupcakes or buying clothes! I still occassionally do this if I am really tired and she now says "Mommy, that is not how the story goes!" and of course that snaps me out of it.

I have a healthy baby boy now, who loves life. Even though I am almost fully medicated again, I do feel exhausted faster because of having 2 kids and working. However, I would not trade him for the world.

I guess my piece of advice would be this- this disorder should not steal life from you; the decision you make will be hard either way (deciding not to have a baby because of the disorder or deciding to have a baby, which will result in being beyond tired). We decided to 'deal' with the tiredness but it wasn't without frustration.

I wish you the best of luck either way you decide.



Thank you for your story. I do appreciate the fact that you did it. I know this is going to be difficult. Did you take anything to help you sleep while you were pregnant? I took nothing with my first but I don't know if I can go without sleep with this next one. I am lucky that I work only 2 days a week and can be at home most of the time. That helps a lot. I don't want to lose this time with my son but I know I'm going to lose some, unfortunately. I really don't want him to grow up being the only child. I also don't know how I'm going to do this!

#4 Sleepy Head

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Posted 03 January 2012 - 11:01 PM

I totally understand wanting your child to have a sibling. That is why we had a second child- especially with the fact that our extended family is small as it is.
I didn't take anything throughout my pregnancy- I do admit I drank some caffine during my pregnancy to help on days I had meetings or absolutely had to drive. Other than that, I just took vitamins.

Narcolepsy is a very interesting disorder. I just pray that what you and I are going through will educate doctors and the medical field in a way that will help find a cure so if our kids or grandkids have this disorder, they will not have to figure things out via trial and error.

#5 sleepymomma

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Posted 04 January 2012 - 12:53 PM

I totally understand wanting your child to have a sibling. That is why we had a second child- especially with the fact that our extended family is small as it is.
I didn't take anything throughout my pregnancy- I do admit I drank some caffine during my pregnancy to help on days I had meetings or absolutely had to drive. Other than that, I just took vitamins.

Narcolepsy is a very interesting disorder. I just pray that what you and I are going through will educate doctors and the medical field in a way that will help find a cure so if our kids or grandkids have this disorder, they will not have to figure things out via trial and error.


What I don't understand with my hypersomnia is why I can't sleep. I guess initially, it's because I've been on sleeping pills for so long that my body doesn't know how to fall asleep on it's own anymore. BUT I would think after 9 mo. of being off all meds would snap me back out of it. Well it never got better. We just started trying again and am off all meds. The paralyis I experience when I do fall asleep off and on is very scary. Not sure if I should talk to my doctor about this or just do what I did last time, which was nothing and just beared it. I am drinking caffeine and telling my husband he needs to go to the store with me and help me make meals because my energy is zapped!!

#6 RebKey

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Posted 07 February 2013 - 11:56 PM

I'm so glad to read both of your posts.  Last year I was diagnosed with narcolepsy and have been on Nuvigil ever since.  This have worked out fine for now but this summer my husband and I are thinking about trying to start a family.  This has surfaced new anxiety for me regarding being off medication, how to approach work about my condition, and dealing with the overwhelming sleepiness.  Any suggestions or lessons learned? 



#7 h.wynn

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Posted 28 February 2013 - 08:37 PM

People have asked me why I had kids when I have Narcolepsy. My answer is that I dident know I had it. I found out 6mo after my youngest was born.I have 4 kids ages 25, 20, 13, and 10. Best guess the N started when I was around age 7. Thats when I started to feel tired. If I had known would I have had 4 kids. Mabie not but one for shure. The point is it can be done with no meds. Its not easy but who ever said that being a mom is. Good luck I wish you all happy and healthy children.

 

p.s. Take lots of photos. They help with the memory loss.



#8 blue7fairy

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Posted 02 March 2013 - 09:30 AM

Thanks so much for sharinbg this. I am newly married and have always wanted kids but am terrified of how I will function with my narcolepsy and cataplexy. I had a doctor suggest staying on medication while pregnant becuase the effects of stress can be risky for a pregnancy as well. Has anyone else been suggested this or stayed on medication? I know it is a personal question, I really appreciate this form it has been esactly what I needed, I have never meet anyone else with sleep disorders before and have been all alone in these thoughts for way to long. So thank you so much for this place to connect it means a lot.



#9 cmcardle74

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Posted 17 March 2013 - 08:32 PM

Thanks so much for sharinbg this. I am newly married and have always wanted kids but am terrified of how I will function with my narcolepsy and cataplexy. I had a doctor suggest staying on medication while pregnant becuase the effects of stress can be risky for a pregnancy as well. Has anyone else been suggested this or stayed on medication? I know it is a personal question, I really appreciate this form it has been esactly what I needed, I have never meet anyone else with sleep disorders before and have been all alone in these thoughts for way to long. So thank you so much for this place to connect it means a lot.

 

blue74fairy, do you work outside the home?  I know that's a big complication; my wife, who has narcolepsy and cataplexy, does not work outside the home.  When we found out Xyrem was declared FDA class B we decided to try for a baby.  She stopped taking Provigil for the duration of our trying and also the subsequent pregnancy.  She stayed on the Xyrem the entire time.  We had no difficulties at all with the Xyrem--it just meant that I had to be more attentive to her needs, and it was up to me to get up with the baby in the night!  Neither the pregnancy nor our son suffered any ill effects from the Xyrem.  (We formula feed so my wife can take her Provigil now.)



#10 tennessee

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Posted 04 April 2013 - 05:21 PM

I have 2 children ages 9 and 16 months. I had two miscarriages and with each miscarriage I was NOT taking my medicine. The third time I was pregnant I decided I wasn't going to change a thing, I remained on 60mg desoxyn and 30mg adderall daily. This time I decided to go to a different doctor and he was a high risk pregnancy doctor. He assured me this medication doesn't feed the fetus but it is excreted through the breast milk. I remained medicated and delivered two healthy boys.
Good luck!

#11 tennessee

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Posted 04 April 2013 - 05:29 PM

Adderall is ok but I didn't realize Halcion is a category X.
Would there be any alternative to the halcion?