Pregnancy with Narcolepsy: Guest Post by Natalie Kwadrans

by julie on February 6, 2014

REM Runner’s Note: Planning pregnancy with narcolepsy? I’m thrilled to share guest stories about pregnancy and parenting with narcolepsy. It’s such an important topic for many and personally, I think parents with narcolepsy are SUPERHEROES!  Thank you, Natalie for sharing your experience and congratulations on being a new mom.

Natalie’s Guest Post:

narcolepsy pregnancy blog post 2My husband and I were married in October 2012 and wanted to have a baby soon after. We decided not to try to conceive before the wedding, since I would have to wean myself off my narcolepsy meds and I wanted to be “awake” for our special day. Immediately after the wedding, we set our plan in motion. Even though my employer, colleagues and employees all knew I was narcoleptic, I didn’t want them knowing we were trying to conceive. During this time, I was able to get away with only napping at my lunch break and after work, so I was able to hide the fact that I was off my meds.

I found out I was pregnant in April, with our baby due December 24, 2013. My first trimester was relatively easy. Although I found myself more tired than usual, I was still able to manage my symptoms at work. Towards the end of my first trimester, I felt increasingly tired.

Coming into the second trimester, I shared the news with my boss and team and let them know I needed to nap throughout the day. They were all very supportive and I was able to take short naps when needed. Interestingly enough, my napping actually decreased slightly, and some days I was able to get away with only one nap. I thought the worst was over. In fact, I felt so good, I joined my husband and some of our friends for a grueling hike in the Rocky Mountains. While I make this sound like a piece of cake, it wasn’t. I still had to have naps on the hike up, but I was confident I could accomplish even with the pregnancy and being narcoleptic.

narcolepsy pregnancy blog postOnce we came back, however, things changed drastically. My scheduled naps were no longer working. I was exhausted and was now falling asleep in meetings. The quality of my work was decreasing rapidly causing me to make errors. My boss thought I was forgetful and not paying attention and I am sure my employees thought I was losing it. When my boss brought up some of the issues (I wasn’t necessarily aware of them myself at the time), I recognized what was happening: automatic behavior and micro-sleeps were a regular occurrences and getting out of control.

I became so exhausted that I ended up calling in sick for 2 days. I slept between 17 and 20 hours on those days. I knew that wasn’t normal, so I called my OBGYN in tears to see if I could come in the following day instead of waiting for my appointment scheduled later in the week. Of course, the OBGYN clinic isn’t used to having patients with narcolepsy, so when I told her how exhausted I was, she put me through to the nurse on duty out of fear that I had become very depressed. I spoke to the nurse, who confirmed I was tired and not depressed and she slotted me in for the next day. The next day, I met with the doctor and was put me on medical leave for 2 weeks to try and “reset” my sleep schedule. I was able to reset it enough to go back to work 2 weeks later, however after 2 more weeks of working, it was off the rails again. In mid-October, I was placed on medical leave until the baby was born.

My third trimester was spent mostly at home and my narcolepsy symptoms became more erratic. On top of that, I developed Restless Leg Syndrome (RLS) and struggled to fall asleep despite being exhausted. I was sleeping 16-18 hours a day on average but tried to stay active. I would go to Aquafit and Zumba twice a week, however this required at least a 1-hour nap before and 2+ hours afterwards. I started developing stage 1 bedsores (pressure points) on my hips, thighs, shoulders and elbows from sleeping on my sides. At one point, I dreaded lying down to go to sleep and would cry before bed every night.

I also felt very isolated as I was confined to the house. I don’t have cataplexy but I started falling asleep randomly, without warning. I fell asleep on a street corner, sitting on the ground against a construction site fence close to my home. I was only 5 blocks away, but couldn’t make it. I fell asleep in stores, parks, the gym, etc. I stopped driving and would not go out unless I was within a 3-4 minute radius from the house or was escorted. But, when I was out and about, I found that moving around increased my circulation and seemed to help reduce the pain from the bedsores. I also started massage and physiotherapy to help with managing the pain. So whenever I had the energy, I would go out to the park with my husband to play with the dog and socialize with other dog owners. I also dragged myself out to two Christmas parties and I felt human again for a short time.

As I write this, I am now only five days away from my Christmas Eve due date. While the pregnancy was tough, I can’t wait to hold my little baby boy or girl. 

The best advice I can give anyone who is narcoleptic and pregnant is to listen to your body and take advantage of it when you have the energy. 

narcolepsy pregnancy

Update: Natalie is now the proud mother of a baby girl born on Christmas Day! Post-pregnancy, Natalie has found that other moms often tell her that she finally understands how exhausting motherhood is. Her response to those mothers is that she feels better than she has in a long time because she can now nap guilt-free when Victoria naps. Narcolepsy is still far more tiring than motherhood is and they, as a tired mom, can therefore almost appreciate how tiring narcolepsy is.

{ 41 comments… read them below or add one }

jenny February 6, 2014 at 10:23 am

Thankyou for sharing your experience natalie. I have N with C I’m currently 5 months into my second pregnancy. My son is 20 months old..
My first pregnancy was relatively easy as i wasnt working and i could nap when i needed… this time round i am constantly exhausted. I can barely leave the house. I cry all the time, i am suffering sciatica in my back.
My partner thinks i am depresses but i know i’m just over tired.
It upsets me knowing that my friends and family know my situation but none of them come to visit. Some people expect me to still be able to the same things i was doing pre-pregnancy.
I will not be having anymore children. 2 children is plenty for a narcoleptic parent.. wishing you and your family all the best. Welcomebto parenthood :)

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Natalie Kwadrans April 9, 2014 at 4:29 am

Jenny – congrats on your pregnancy! While it might feel hard now, hang in there. I didn’t have any family in within the province, and all my friends were working, so I also felt isolated. I relied very heavily in my husband for everything.

Remember that this is only a temporary state you are in. Once the baby arrives, hopefully you will also feel better than you have in a long time.

Let us know when you deliver your precious little baby!

Natalie

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Megan August 30, 2015 at 5:30 pm

Hi Jenny. My story is identical to yours. I’m due with number 2 in January. Any chance you live in South Carolina?:) would love to have a friend like me near me!

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Julie September 1, 2015 at 6:51 pm

Megan,
Hey my names Julie and I have narcolepsy. I am 21 weeks pregnant and due January 10th. I live in Campobello, SC. It is REALLY tough doing the pregnancy thing off my medicine (I normally take Provigil). I’m not working right now because I am sooooo tired ALL of the time. My husband is having a hard time adjusting to me being so inactive. He is being supportive though. I would love to talk to someone that understands. Do u live in SC?

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Shannon Hall February 6, 2014 at 7:59 pm

I love that you are featuring this. I am a mother of girls 4&6 and have narcolepsy with cataplexy. I am thrilled that this issue brings another aspect to awareness with narcolepsy. The resources and connections to others were scarce when I was deciding to have children. It is so helpful to hear other stories for anyone planning or expecting children. As with motherhood and narcolepsy everyone has a story but it strengthens a community when you no longer feel isolated.

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Kristine February 7, 2014 at 9:24 pm

This is a great topic and I am sure experiences vary greatly. I hate to be a downer but my pregnancy experiences were downright horrible. During my first pregnancy I did not have a Dx of narcolepsy. I got my Dx right before my second pregnancy with twins. Both pregnancies came with SEVERE hyperemesis gravidarum, 24 hours a day, which lasted 5 months the first pregnancy and 8 months the second pregnancy. Since narcolepsy wasn’t on the radar for my doctors either time I was prescribed Rx antihistamines for nausea and vomiting which knocked me out for several hours at a time. I ended up dehydrating, starving, muscle wasting and passing out and losing 30 pounds pregnant with the twins! At the end of each pregnancy my blood pressure skyrocketed when usually it is very low. I also retained exhorbitant amounts of fluid which doctors ignored. I can assure you that if I had known how miserable pregnancy would be and what narcolepsy would bring I would have made sure I prevented pregnancy and parenting altogether! But this is where the blessing comes in. My life has been forever changed for having children who are healthy and beautiful! My advice to pregnant PWN would be to make sure you have a doctor who acknowledges your narcolepsy, understands it and how medications and physical conditions affect PWN differently than healthy people. Then make sure you have a support system in place to help you while pregnant and after baby is born. Also make sure you have your finances in order and back up savings for lost work time. I ended up using up my FMLA during pregnancy and losing my job. Being low income, narcoleptic, with a 4 year old and newborn twins, no help and no friends was very difficult and lonely (and at times bordering insanity!) but things always change and get better eventually. I actually surprised myself at what I could accomplish with the help of (at least) one super fantastic guardian angel!

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Ms. Ladybug February 10, 2014 at 3:42 am

There aren’t enough resources like this, so your experience, strength and hope are greatly appreciated. Before I was diagnosed with narcolepsy, I became pregnant but miscarried about halfway through the first trimester. During the pregnancy, I was the most tired, fatigued & exhausted that I had ever been in my life and it was all I could do to get through my days. Now being diagnosed with narcolepsy, I understand why my fatigue symptom were so exaggerated…I am relieved to know that I’m not alone and I really appreciate you speaking up on this topic.

On the note of my miscarriage and in light of my background as a biologist, I wonder if my body was just too taxed to support the fetus. I can’t even imagine taking care of children when I can barely take care of myself, but yet I would love the opportunity to have and raise children one day. Sadly, I wonder if my narcolepsy will make it more difficult for my body to successfully carry to term. Anyone else have any thoughts, education or experience on this side of it?

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Natalie Kwadrans April 9, 2014 at 4:34 am

Hi Ms. Ladybug,

I’m so sorry to hear about your miscarriage. I haven’t heard anything about narcoleptics having a harder time seeing a pregnancy though, however I found very little research on pregnant narcoleptics.

In terms of taking care of the baby, it hadn’t been that bad. I’m now on Ritalin and also nap when Victoria naps. I haven’t felt this good in years. :)

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Katie February 18, 2014 at 10:43 pm

Thank you so much for sharing your experiences with narcolepsy and pregnancy. I just got married this past summer and we are trying to research what pregnancy will be like for me… if I can take my medications, if I can work, how I will feel.. etc. It has been pretty frustrating finding information on narcolepsy and pregnancy. I even went to a sleep specialist-neurologist and she was completely useless. Has anyone found any helpful information on taking Provigil while pregnant or any alternative medications to use?

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Natalie Kwadrans April 9, 2014 at 4:38 am

Hi Katie,

My doctor told me Xyrem is safe during pregnancy. I didn’t go on it because I had never been on it before so my doctor didn’t know how my body would handle it and what kind of side effects I might experience. I may consider going on Xyrem before I have my next child.

You might want to speak with your doctor to see if that is an option for you.

Natalie

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Teenuh February 27, 2014 at 2:02 am

Thank you, thank you, thank you! I have a 2 year old son, and he is all boy. I just recently stopped working, it was too much. My husband wants another child and i am really nervous because we do not live near family and one is a hand full. Hearing these stores really are helpful.

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Lindsey March 26, 2014 at 3:57 am

I have what my doctors have described as a severe case of narcolepsy (without cataplexy). My husband and I recently began trying to conceive our first child, and the thought of no medication coupled with pregnancy-induced fatigue really worries me. I do plan to discontinue my use of Provigil during pregnancy as it’s a “Category C” drug and there have been no research-based studies on its effects in a human fetus. However, I’m really worried about being able to continue to work full-time. I’m an elementary school teacher and scheduled naps won’t be possible. I’ve already signed-up for short-term disability insurance and am not so much worried about the financial aspect as I am about people viewing me as lazy or as though I’m exaggerating my condition. Did you experience these feelings, and if so, how did you cope?
I appreciate you sharing your story as these testimonies are difficult to come across and hope to share my own pregnancy experience in the near future! :o)

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Cal November 17, 2016 at 9:10 pm

Lindsey,
I am a teacher and planning to have my first child soon. Any chance you can contact me to let me know how you managed it? I am scared because I know scheduled naps are out of the question.

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Sham April 9, 2014 at 2:51 pm

Hello! I recently found out I was pregnant. The doctor called this morning and said it looks like I’m about 7-8 weeks along. I stopped taking my Nuvigil about 2 weeks ago. Has anyone taken meds during the first trimester? I’m really worried that there will be complications. There is really no uplifting information out there about this. Any ideas or experiences?

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Renee July 28, 2014 at 8:10 pm

My OB told me it was ok to continue taking my 5mg dosage of Adderall XR (I was just diagnosed with N w/out C in June). I’m 6 weeks pregnant and have had no problems, however due to restless legs and nauseousness at night I’m getting horrible sleep, which means I’m exhausted during the day at work. I have done a lot of research and found that most women had no problems with taking their Adderall at a low dosage (below 20mg) throughout their pregnancy. I’m about to have to bump up my dosage to 7.5mg I believe though; it’s either that or drink an excess of caffeine just to function at my job. Still makes me very scared and hesitant though…I’m definitely conflicted!

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Nicole April 20, 2014 at 7:25 am

I was diagnosed with severe narcolepsy on 2003. At that time I was a single mother to an energetic 5 year old boy. In 2006 I married and we started right away on expanding out family. In 2007 we had a boy, and in 2009 we had a girl. My husband had a vasectomy, but never went back for the check up. Low and behold in 2011 we had another little girl. My husband also has a daughter from a previous relationship. So together we have 5 kids. Thankfully my husband is super understanding and since we’ve been married I have worked part time. In the last year I cut down to only 2 days a week. I did continue meds (adderall) while pregnant. Once I had my babies I switched to Ritalin while breast feeding. And when I was done breastfeeding I went back to Adderall. I am currently on 40mg in the am and 40mg at noon. I still struggle to get up and going in the am and by 5/6pm I can fell my body shutting down. It is definitely a challenge having so many kids and different start and end times to their schools and running them around in addition to trying to maintain the house, etc. Sometimes I wonder why I was dealt the narcolepsy card, but then blessed with these beautiful, healthy children that I barely have the energy for. Just doesn’t seem fair.

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Darla Sneed July 21, 2016 at 3:08 pm

Nicole,
I feel the same way. I have three kids, ages 15, 8, and 5, all in different schools with different schedules. Plus, I work in the preschool (as a trade.) I am lucky that my husband works(high school teacher) and still makes dinner. My 8 year old is ADHD, my opposite, and my 5 year old is also very active. The 8 year old is borderline oppositional defiance disorder. She’s a challenger of all rules and often wears me down to the point I feel like the other two are not getting their fair share of care.
I have also found myself feeling badly that I am as limited as I am when it comes to energy. I’m on the maximum daily dose of Dexedrine and taking Xyrem at night. When I start to feel this way, my husband pulls me back and reminds me that it’s not fatal, annoying yes, but not terminal and is manageable.
My family is full of ADHD peopledoesn’t (go figure… I’m the only N with C person). They seem to understand and often criticize me for “being lazy and sleeping”, which is frustrating because my parents are both dentists and should know better, but nobody’s perfect.
I guess that’s my point. Nobody’s perfect. We have our limitations and our boundaries, but we have ways to manage them and we are lucky enough to have healthy and beautiful children. Those children will face challenges of their own, especially when they become parents, and what better role models could they have had to show them how to keep going and push through the really tough times and succeed? We succeed every single day. We will our bodies to wake up, raise children, maintain our homes, shuffle schedules, etc. We do that every single day, tired and exhausted – sick or healthy- it doesn’t matter. We still get up and get things done. That’s what we show our children every single day. That’s what they learn from us. They know we love them every minute (even when we’re mad or tired).
So, when you feel like it’s unfair to your kids, I hope reading this helps. Remember, our children love us just as we love them. It’s a challenge, yes, and we overcome our main obstacle millions of times every year.
Take care,
Darla

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Sharon July 5, 2014 at 1:05 am

Though I did not have a diagnosis for N when I got pregnant at 25 and 28, I had been batttling the gamut of symptoms since the age of 17. My experiences being pregnant and as a mom: When I was no longer able to use stress and pressure at a busy, frenetic pace of work to stay awake, I struggled emotionally…it really hit me how fatigued and close to sleep I was, when I was home with my first baby. The quietness, lack of chronic stimulation, slow pace made me feel like a zombie. I defeated this as much as possible by forcing myself to sign up for volleyball, mommy and me music classes, going for adventures to the zoo, developing mommy friendships. When I had my second, my oldest was 2 and a half and bless her heart, she made me feel normal, because she did not know any better. My body hurt much of the time, my bones ached and my skin burned, from exhaustion. The pregnancies were both healthy but I did have a lot of morning sickness all day long. I think it actually helped me to assume that was part of why I felt so wiped out and quiet on the inside, I remember feeling very vulnerable. When the kids were really little, one of my mommy friends remarked that I seemed to contend with the usual ‘having young kids’ sleep deprivation better than anyone she knew. It was because feeling sleep deprived and exhausted was my constant background, the difference was less for me to grow accustomed to than for her. I already mastered that. So to anyone new mom with N who is scared, you’ve got this. All the other moms are going to be adjusting too, but you probably already have some secret coping skills of your own! YOU WILL FEEL GUILTY. Welcome to Motherhood. Try not to be too hard on yourself. It is going to be okay. The N is permanent but the neediest stages of infancy will soon pass, and you will miss them. Nap when the baby naps. Teach your kids from a young age what they need to do, and reward or reinforce it. When I needed to close my eyes, I would put on their favourite show, have my toddler sit on my feet and my baby on my chest or in the crib, while I napped on the couch. The great thing is that kids will keep you going, because they are needy and hungry and hilarious, and you will actually find your groove, because they will regulate you…they will keep you on a schedule. Forgive yourself for being human, and know that everyone struggles with something. And never, ever, compare yourself to moms with clean houses and boundless energy- they are jacked up on coffee and secretly hire cleaning help. Your kids will grow up with more empathy, compassion, and humour than you can imagine. Enjoy every second, and trust that your heart can handle all the joy and challenges ahead! Pace and brace yourself!

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Anna November 5, 2014 at 5:10 pm

Sharon and everyone, so many thanks for your stories. (Some tears thanks to Sharon’s lovely encouraging words)

I’m 8 weeks pregnant with my first baby and am thrilled with joy and happiness but also with fear. Have been narcoleptic since teenage years, diagnosed 9 years ago, had heavy cataplexy but not for years anymore. I’ve always tried to do without medicine, having chosen artistic career = not much money but able to nap and rest daily. I take epehdrine when needed and drink loads of coffee and sleep much. Refused to start Xyrem this sunmer as I read the manufacturers warnings and they scared me totally, it seemed like a heavy drug to me, they also stated clearly Xyrem should not be used during pregnancy, breastfeeding or while trying to conceive. (This in Scandinavia, I dont know if the information laws are different in different countries. However, that statement was clear in the next in my native Scandinavian language)

I dropped ephedrine AND coffee the day I found out I’m pregnant, I’m very very tired and confused already now. I get pretty much nothing done except taking care of our dog and eating, am hungry all the time. Then again, I’m a painter, so I could not really paint now anyway that being dangerous to the fetus aswell.

What worries me maybe most is the idea of going to cataplexy while delivering. Do you have any info or experience on that?

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Geraldine October 13, 2015 at 3:36 pm

Hi there, my name is Geraldine and I have Narcolepsy with Cataplexy.
I am in my 37 pregnancy week now, and I would like to know if you could get some information about delivering naturally with cataplexy. I will appreciate very much your response.

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Karla Bruck November 9, 2014 at 8:40 pm

I am soooo glad I found this site! I am currently 6 mos and a week with my sixth child. I did not have the Narcolepsy dx with the others, but I did have the bi polar dx. I am taking care of my kids and trying to go to school and I am at my wits end. I feel so alone. I am an only child and my parents are deceased. My ob doesn’t know anything about Provigil, but I did take it while I was in my first trimester. I get so tired of my family making comments about me “sleeping all the time”, they just don’t get it. I will not be having anymore children but I still have a ways to go. I am struggling in school and I just lay around like a potato all the time. It is so hard! Glad to know there is a “light at the end of the tunnel”. thank you for all the wonderful comments and posts.

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Emily January 21, 2015 at 5:38 pm

I am currently 21 weeks pregnant, and am prescribed Nuvigil for my Narcolepsy/Hypersomnia. I was about 2 months into my pregnancy before I found out that I was pregnant. I was taking my Nuvigil throughout those 2 months. I am nervous that it will affect my baby. There is hardly any research done on Nuvigil and pregnancy, and I’m scared that it will have a negative affect. I had my 20 week ultrasound yesterday, and they said she is developing fine, and everything looks good, but I still have some anxiety about it. Has anyone taken Nuvigil throughout their pregnancy? Any stories or experiences would definitely help calm my mind!

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Nancy February 2, 2015 at 3:28 am

Hi Emily. I was just looking through some of Julie’s old posts and saw your recent comment. I took Provigil (I’m old-school, LOL!) during my pregnancy. I’d rather not get into details here, but please feel free to email me at nancylackerman@gmail.com if you would like to know how it went for me.

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Morgan November 8, 2016 at 10:56 pm

Nancy I emailed you!

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Pam Schul January 27, 2015 at 8:32 pm

Thank you for this article and to everyone who has commented. I am currently 26-weeks pregnant and I have a 26-month-old running around. I have narcolepsy w/o cataplexy. I also know the exhaustion, and the pain, as well as the guilt and the loneliness that you all talk about. Prayer helps me some. But it is so nice to know that I am not the only one experiencing all of this.

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Leah March 4, 2015 at 4:08 am

I have a 2 year old and a 6 year old. I’m a single mom, and I have a demanding (but rewarding) career in public accounting. I am 31 years old, and I was diagnosed with Narcolepsy with Cataplexy in 2006. I believe my symptoms started in 2001.

My first pregnancy was in 2007, and I miscarried almost immediately. At the time I was taking 120mg of Adderall a day. I stopped as soon as I found out I was pregnant just because I figured that was what would be best for the baby. I had just finished college and didn’t have a good narcolepsy doctor or a good OBGYN – which was a bad combination.

I got pregnant again in 2008. By this time I had found a wonderful OBGYN, but I was still using the same narcolepsy doctor. I was super nervous since the first pregnancy had ended the way it did, so I stopped taking all of my meds and didn’t even drink any caffeine during the pregnancy. I slept all the time. It was difficult because I was already single early on in the pregnancy, and I was still working full time. Everyone in the office knew I had narcolepsy, but that didn’t make it any less frustrating to fall asleep while meeting with a client or in the middle of a tax return or in any other similar situation. I would wake up, struggle to get out of bed and *DRIVE* to the office, where I would usually sleep for several more hours on and off throughout the day. When I got home I would lay on the couch and sleep until about midnight and then I would go to bed and do everything all over again. On the weekends I stayed in bed pretty much the entire time. I remember people asking me if I was “nesting” or if I had everything I needed for the baby, and I would just look at them like, huh? I don’t even have the energy to come up with a name for the baby much less decorate a nursery and wash brand new baby clothes and go to child birth classes and all of the other million things they tell newly expecting parents to do. All I wanted to do was sleep. When I would go to the doctor, it was not unusual for me to sleep through them calling my name – I even had to reschedule a couple of times because I slept so long the doctor had left.
OK – fast forward to the delivery. I practically slept through it. Seriously. I got to the hospital early in the morning because I was scheduled to be induced, but when I got there I was already having contractions. I was admitted to a room and I made sure to tell all the nurses that I had narcolepsy and that I would probably be their easiest patient ever because all I wanted to do was sleep. None of them had any experience with narcolepsy, which was disheartening. I got an epidural a few hours later, and slept until about 5:00 that afternoon (and felt lovely). Things started picking up pace and I delivered a 9 lb 5 oz baby girl at 7:15 that evening after about maybe 8-10 minutes of really intense pushing. Then I threw up the grape popsicle that I had begged the nurse for an hour earlier since they don’t let you eat while you’re in labor. I was fine, the baby was fine but a bit jaundiced. I had planned to breastfeed for at least a couple weeks, but we had to supplement with formula and once she had the bottle there was no going back. I started back on my meds and learned to change diapers and wash bottles in my sleep. I remember thinking after she was born, “what was I doing before she was here?” She gave my life a purpose that I didn’t know it lacked. She turns 6 tomorrow :)

My son conceived in 2011, but I didn’t notice until about March of 2012 – when I felt him kick me. It was tax season, I was working long hours and I attributed the missed periods to stress and the weight gain to all of the eating out I do during tax season. I was taking 120mg of Adderall a day and Imipramine at night for cataplexy. I was seeing a much better narcolepsy doctor, and still using the same OBGYN. The narcolepsy doctor gave me what I think was a valuable perspective regarding the meds during pregnancy. He said it wouldn’t make sense to stop taking the meds that have never been studied on pregnant women and are not tied to any birth defects only to kill yourself and the baby in a fatal car accident because you couldn’t stay awake behind the wheel. He said that cases of pregnant women taking Adderall had to exist, and that if there had been birth defects that information would be available. The lack of information tends to indicate a lower risk for the baby. I did cut back and I tried to only take it for driving and important meetings. After tax season I really only took it to drive the 10 minutes home or to the office. I had no complications during the pregnancy and I delivered an 8 lb 6 oz boy in July of 2012. I even got to stay home with him the whole first 6 weeks since he wasn’t born in the middle of tax season.

This is going on a bit long, I know. I just want to say that anything is possible. I couldn’t have ever dreamed what life with kids would be like. Yes, it’s hard. My daughter is starting to realize that I have different sleep habits than pretty much anyone else. She is also starting to take advantage of me dozing off on the couch by seizing the moment to raid the refrigerator or give herself a makeover. My 2 year old will randomly yell, “Mommy – WAKE UP!” even when I’m fully awake. I have a team of about three babysitters, along with a fantastic daycare that is walking distance from my office. I am in the process of getting rid of my car – I’ve been too lucky this far to keep pushing it. I’ve had dozens of accidents, with and without the kids, and we have been extremely lucky that none of them have been serious. One day soon my daughter can go get a hardship license and start driving me around maybe…. she’s pretty tall for 6.

I would love to talk if anyone wants to reach out to me – I am always frustrated by not having more PWN in my life to talk to about pretty much everything. You can email me at leah.gillen@gmail.com

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Ashleigh September 2, 2015 at 10:23 am

Thanks for your story Leah. My name is Ashleigh I am a 26yo living in Syd Australia. Myself and my hubby would like to try for a baby at end of year but i have many concerns. I have emailed you to ask you a few questions if you have the time (or energy ) to reply that would be much appreciated!
Thanks Again

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Marielle November 2, 2016 at 1:14 am

Hello Ashleigh,

I wonder how you are doing and if you are pregnant now. How is it all going? :)

I’m also in Sydney; I have narcolepsy and cataplexy (I’m being treated by Dr Brendon Yee at RPAH), and have a 2 year old son.

At my last visit Brendon mentioned he was seeing a patient who was pregnant and continuing her mediations on low dosage. I asked him to pass on my details the next time he saw her.

I felt incredibly isolated during my pregnancy because there weren’t any other people who shared my experience. I would be so interested to hear how you are doing, and also happy to meet up.

We would like to have more children, but I am fearful of how I will cope physically without medication. I’m particularly worried about caring for my energetic toddler son and a newborn. I am trying to sort out a support network, and understand how our day-to-day lives will work. There are times already, even when on full meds I fall asleep unexpectedly and I notice I am in potentially dangerous situations.

Also, I wonder is anyone else afraid of dropping a baby, or falling over with a baby during cataplexy?

Best,

Marielle

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Lindsay March 25, 2015 at 10:23 pm

I am currently 12 weeks pregnant. I have severe narcolepsy. Before I found out I was pregnant I was on 150mg of Adderall and 250mg of Nuvigil. I now take 500mg of Nuvigil. I just had an ultrasound at 11 weeks and everything appeared to be going as normal as possible. Has anyone taken Nuvigil throughout their pregnancy. I do not function without meds I literally have taken med holidays and I sleep between 20 to 22 hours a day. Any information would be greatly appreciated. Thanks

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Morgan H November 9, 2016 at 12:28 am

Lindsay,
Can you email me? I have so many questions for you. MorganLynea07@yahoo.com

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Sarah April 2, 2015 at 4:09 pm

Hello,

I’m so thankful for this website and blog. It’s nice to know that there are others who experience what I experience and understand what I’m talking about. I have a few questions for Lindsay. I am also a teacher and I have cataplexy. I’m wondering how that all works. Am I able to qualify for disability. That is one of my concerns, plus the fact that everyone else just will think I’m lazy. The struggle never ends

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Christine May 6, 2015 at 8:25 am

this is so relieving to read to know that I’m not on my own. I have Narcolespsey with Cataplexy. I was diagnosed in 1999 but had symptoms since I was 11. I am pregnant (9wks) with my fifth child. My two eldest are older so they help me a lot when my husband is at work. I come off my med whilst pregnant and go back on them when the baby comes. I have a nap just before dinner when the little ones go down for theirs and then I’m usually falling asleep once they go to bed. I don’t know how or why but the Cataplexy seams to ease off during my pregnancies, the tiredness though sometimes gets too much. So my mum comes round to watch the kids so I can nap. Mum stays with me before labour to prepare and rest and then for the first week after baby is born. I am very fortune to be able to be a stay home mum and have a supportive family. I sometimes feel my husband doesn’t full understand how hard it can be having Narcolespsey and being a parent. Mum is great because she has seen how it has effected me growing up.

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char June 11, 2015 at 1:49 am

Hello It’s amazing reading all the stories from people going through the same things as me when I have felt so alone all of these years. I have n with c and am 27 years old. my boys are two and three. For the longest time I thought I had post partum psychosis because of the hypnogogic hallucinations. but it didn’t stop. My family has made me feel embarased for sleeping and for the Times I zone out. I finally signed myself into the hospital only to be told that I had an anxiety disorder and that child services would be visiting because of the black outs and times that I wasn’t able to move. so when I saw the scycyatrist and sleep doctor I didn’t repete what I had said for fear that they would take my children away.
Big mistake! The sleep doctor had mentioned that I had entered rem to fast during the sleep test and mentioned narcolepsy so I looked it up a few days later. All my questions were answerd. Now I don’t think my doc believes me and for good reason. I wish I hadn’t been so ashamed. My message to anyone in the same position is to be fully upfront with your doc because having toddlers and untreated narcolepsy isn’t fun especially when you fall down whenever you get stressed. I’m going through testing now but wish I had done so earlier. The c-pap is helping and I have an angel for a husband. thank you so much for your comments they are so helpfull!

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Claudia August 23, 2015 at 12:20 am

I am so happy I found this! Thanks for sharing, it just so happens that my husband and I have been married for only 5 months and we want to have a baby next year but I am terrified about going off my medication; I am on Concerta and Ritalin adding to 64 milligrams a day (very allergic to Modafinil) and need to gradualy go down to nothing two months before conceiving; at least that is what my neurologists recommended but it is so scary, I am currently unemployed, I know I am a wonderful teacher but this is the third job in 9 years of my teaching career when I have been laid off because they found out about it, I pretend to be ok about it but it really does hurt my sense of self worth which is why I am so afraid of going back to my unmedicated self, I even worry about my husband getting to know the real me, I feel like a werewolf approaching the full moon and I wish I could just hide away for my whole pregnancy and nursing time :( do you have any closed group suggestions on FB or something? Something under the radar though… Only close family and friends know I have narcolepsy and whenever anyone else has foud out it has brought me mayor shame :(

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Elizabeth September 18, 2015 at 1:34 am

Thanks to everyone for sharing. Everyone’s stories have made me feel better. I just found out that I am 5 weeks pregnant. I was diagnosed with narcolepsy and debilitating ADHD in 2005 and have pretty much been on Adderall xr since then with the exception of trying a few other medicines that either did not work at all or I had severe side effects from. I came off of it about 2 years ago for 2 weeks to do a repeat sleep study with a new doctor. The first week I went through what I guess would have been withdrawal symptoms from being on it for so long. I was in a coma like state, sweats, chills, nausea, loss of appetite- unable to eat, and my oh so forgotten narcolepsy symptoms- sleeping uncontrollably for days- I was only conscious for a total of 1-3 hours a day. By the end of the 2 weeks I had started to feel slightly better in some ways, but my narcolepsy seemed worse. I think because for so many years I had not had to fight as hard, going without the help from medicine made things seem so much worse. And knowing that I could take medicine and be more like a “normal” person didn’t help. I also have other health problems and was told I would probably never be able to have children- which I was completely ok with. In April this year- with what I had been told was a less than 1% chance- I found out I was 4 weeks pregnant- but miscarried within a few days. During that time any doctor I spoke with had different advice regarding narcolepsy, taking Adderall, and pregnancy. Or they had no advice and kept passing me off on someone else. Since I miscarried before I made a choice on medicine, and I thought it would never happen again, I haven’t given any more thought to it. BUT here I sit having just found out again and trying to call doctors and getting the same run around. I have tried to research and still cannot decide what is best. I’m afraid if I quit cold turkey that if I have symptoms like before when I wasn’t pregnant that it will cause more harm to the baby or even another miscarriage. On the other hand I’m terrified of the effects that continuing my medicine might have. I truly cannot decide which decision is best! Has anyone been through anything similar with Adderall or does anyone have any advice?

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Sara January 5, 2016 at 5:19 pm

Hello,

I have narcolepsy+cataplexy and I am 5 months pregnant, and so worried about giving birth, as a narcoleptic im not sure how anesthesia or epidural might react to my neevous system..i am wondering what were your choice of delivery? With epidural, c sec or natural?

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Paula March 2, 2016 at 4:53 pm

Hi Sara,

No two women are the same, and no two narcoleptics are the same. What triggers your cataplexy? Is it excitement, pain or laughter? In my case it is anger, which makes tiffs with my husband frustrating. If you experience a cataplectic attack during natural childbirth, are you comfortable in your care team’s ability to manage the situation in accordance with your wishes and the best needs of the child, if need be? If not, can you reach that level of comfort with additional conversations, or do you need to call in a new team-member?

Yes, if your cataplexy starts to interfere with the birthing process, an emergency C-section might be called for. I stress the word “might” as it is not a certainty. However, hospitals may not be overwhelmed with narcoleptic moms, but they are well-practised in the art of the emergency C-section. Obviously, this is a good argument for utilizing a hospital over a separate birthing center, but cataplexy, in itself, is not usually a solid argument against attempting a natural or assisted birth if this is your first pregnancy. However, your personal comfort level and sanity have to factor in. Only you know your own body and triggers. If a planned C-section will put you at far more ease than a natural birth, then there is your answer.

I myself am pregnant with my second and am electing to have a planned C-section. I had an emergency C-section the first time after a week of on again-off again labor. I was still only classified as having idiopathic hypersomnia the first time around as my sleep architecture hadn’t degraded fully into Narcolepsy yet. My sleep issues had no bearing on my outcome nor do they weigh into my present decision not to attempt a VBAC. Several weeks after the birth of my first child, a friend of mine, who also has narcolepsy, delivered a healthy baby girl naturally and with no complications.

Don’t let the online mommy guilt folks dictate your decisions on birth, breastfeeding and child-rearing. We have enough fatigue already. Attempting to live up to their standards is an exhausting mistake I made the first time around. You saw that I was in labor a week, right? I was a stubborn dummy. Births have a tendency to be like weddings and birthday parties. We want certain things from them and go in with certain expectations. Yet, if we are too married to those expectations, we will miss out on the true beauty of the moment. I practically laminated the copies of my birth plan, and I had what my doctor called “the most traumatic birth experience” she had ever witnessed. What birth plan would make you feel most comfortable? Write it out and then prepare to be flexible. And since hospitals are afraid of litigation, put on your birth plan that a healthy child is your goal, and if one of your care providers feels that the plan is no longer the best means of achieving that goal, they should feel free to address that concern.

My anesthesia was delivered via the spinal tap they did for my epidural. (Mommy judges, I was in labor a week, you can shut-up now) I puked in my doctor’s face immediately after birth and then passed out for hours. I think my reactions were more due to prolonged labor than anesthesia. I have a frequent surgery punch card, and I can say I’m usually groggy and little nauseous afterwards. If the anesthesiologist is kind enough to give me a dramamine patch for behind my ear, it helps immensely. Even if you choose a natural birth, talk to your doctor about anesthesia. She knows the hospital’s procedures and the anesthesiologists best. If an emergency C-section is required, she will be your best educator and advocate.

Congratulations!

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Danielle June 29, 2016 at 6:02 pm

Hi Sara,

You may consider a water birth if you are worried about cataplexy. They bring in a big blow-up tub and set it up at your house, or some hospital/birth centers have a large tub for you to use. You can stay in the bath for most of the labor, and your husband or a midwife can hold you up in the water if you have full-body cataplexy in the tub. If you only have lower-body cataplexy it will be easier to be in the tub by yourself, as you can just hang onto the rim. Then you won’t have as much fears about falling and such. :) You can actually give birth to a baby in water – it’s good for them, as they are in a water bubble in your body and used to it.

I’d go for the natural route, your body will release all kinds of hormones that will make you feel great for a while after the birth.

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Amanda June 15, 2016 at 3:27 pm

Hi,

I had just recently found out that I am pregnant with my 2nd child. I am between 6-8weeks pregnant. I have both Narcolepsy and Cataplexy my neurologist that I see said that I have the worst case of both that he has ever seen. It all started in the beginning of 2014 and seemed to get only worse. I didn’t know exactly what it was that I had so I went to a regular family doctor and told her when i laugh I fall and she looked at me like I was completely crazy. So my mom started doing research and came across a YouTube video of a girl explaining when her friends make her laugh her muscle tone gives out on her and she falls. The girl in the YouTube video said she had been diagnosed as a narcoleptic and had both Narcolepsy and Cataplexy. So after watching the girls video me and my mom realized that I am narcoleptic. So I told my family doctor the one who looked at me like I was crazy and she said she has never dealt with a narcoleptic patient before. So she signed some papers and had me do sleep studies which had reported that I was indeed narcoleptic. So I saw their neurologist and he looked at me and said he didn’t want to treat my condition. So he gave me a card for a different neurologist which he’s much better any way. I walked into the new neurologist office and he took one look at me and diagnosed me Immediately after I walked in. I’m supposed to take 3omg in the morning along with protriptaline a long with another 30mg. I really want take my meds but since I’m pregnant I’m worried about trying to stay awake to take care of my 7 year old child. At night I still have sleep paralysis which scares me. I was wondering should I still take my adderall or if I should see if I can take something else? All your help and advice.

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Aleigha June 22, 2016 at 4:50 pm

Thank you all for your stories and making me feel “normal”. I was diagnosed with Narcolepsy in 2013, I was the single mother of a very active little boy. I just got married last July and have been stable on my meds for sometime. We didn’t plan on having any more children (he has a son 3 weeks younger than my son). I had the IUD in and somehow (they say most likely with a bad menstrual) it came out. I have wanted another child for some time but with my Narcolepsy and other health issues we thought it was to risky. We found out that my period we were waiting on wasn’t coming on Mothers Day. I haven’t had medication since. The first couple of weeks were fine (I think it was due to the excitement of finding out). Then it was like I hit a wall, and not the normal wall that I would hit half way through my work day and then take another dose to make it through, it is like the great wall of china and no amount of sleep or rest is able to get me past it. I haven’t been utilizing coffee due to the recommendations (trying to go no caffeine). I work full time and my job is super rewarding but extremely stressful. I am napping daily at lunch and I try to rest when I get home but just feel lazy (I know I am not but hormones are messing with me). I identified with this article so much, I find myself making little mistakes throughout the day, and I’m not my normal OCD self when it comes to my work (I know people around me have noticed). My employer is aware of my Narcolepsy and aware of my pregnancy, however being aware isn’t being informed and I don’t think they understand what my body/brain is actually going through. I cry all the time, I know I am not depressed.. I AM EXHAUSTED. Suffering from symptoms of extreme sleep depervation even though I am sleeping frequently I AM NEVER RESTED. I have had a migraine that won’t even give a little for about 3 weeks now. My sleep paralysis along with my awesome realistic movie like nightmares are becoming more frequent. By the time I get home from work and picking up the kids and making dinner I don’t have it in my to shower much less take care of the house. I feel like I am not carrying my weight but I know my husband gets it, and I know he has my back. He is the most supportive over protective person I have ever met, and I am beyond blessed. My mom is a huge help too, she is always there for me and I am lucky to have such a great support system. However, I am a very independant person and it sometimes really bothers me how dependent I am becoming, but this article gave me a different perspective that me becoming dependent isn’t as big as a burden as it is a blessing. I am bring a life into this world and I want to be excited about it, but I’m too tired to get excited :) It sounds like a lot of people feel a little better in the second trimester and I am almost there. Did any of you working mom’s make it all the way to your due date working full time without medication? Thank you again for this article.

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Doc with narcolepsy February 28, 2017 at 4:50 am

I would love to know if there are individuals who had to give up the dream of having biological children due to their narcolepsy. As a physician who must do shift work, there is no option not to work (I have $200,000 student loans) or to nap during work. I was diagnosed with narcolepsy after commencing medical school so my career path was set. My husband has a line in the sand regarding the nuvigil issue: he does not want me to take any medications that could possibly pose harm to the fetus. He is dead set against IVF. My husband was less than enthusiastic about children and by the time he was willing to entertain the idea and we went to maternal fetal medicine, it was like all doors were closed, they never had a patient with narcolepsy so were puzzled and no one could give us any answers. Now my husband feels we are too old to parent (he’s older than me by several years) and I’m looking at never having any child.

So I likely will never know motherhood. I know adoption is wonderful but there is a part of me that desperately hoped for a child made of the flaws and good points of my husband and me. I will never even get a chance to try and while I am blessed beyond belief to have a caring loving husband, there is a part of me that cries in silence and grieves. Thanks for listening. I don’t know anyone except for some of my patients who have narcolepsy and so there is no one to ever speak to about the challenges. Have a great day everyone.

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