Narcolepsy and Pregnancy

Index Support Center Forums Living with N Narcolepsy and Pregnancy

This topic contains 13 replies, has 5 voices, and was last updated by NayChan07 2 months, 2 weeks ago. This post has been viewed 1038 times

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #3503
    mrslawlshark
    mrslawlshark
    Participant
    @mrslawlshark

    Hi there, I’m 27 year old female, diagnosed with N w/o Cataplexy a year and a half ago. My husband and I want to start trying to have a baby, but my pulmonary doctor advises that I can’t be on Ritalin while pregnant. Has anyone used their medication while pregnant? If not, what did you do? I’m also worried that if/when baby comes, I won’t wake up to their cries. When I sleep, I sleep deep– I’ve slept through fire alarms and tornadoes. I often have night terrors where I scream and move around; my husband will try to wake me up while shaking me and yelling my name but it often takes quite a while before I will come awake.

    Thanks in advance!
    The Lady With N Who Wants to Have a Baby

    #3505
    Avatar
    Natdoc
    Participant
    @natdoc

    Good for you guys! I believe your pulmonary doc is right, you should not be on stimulants during pregnancy.I am wondering if you treat the night terrors?
    For pregnancies my main recommendation remains the same get plenty of sunlight, plenty of exercise, eat a well balanced diet, maintain a healthy sleep schedule. You may want to try some Ashwaganda which supports your immune system and stimulates you throughout the day. It is safe to use in pregnancy.
    Plan your naps and stick to them.
    Don’t worry Mothers have a built in instinct to alert them when their child is in need you will wake up if needed.
    Lastly, if all else fails xyrem has been used successfully in pregnancy but will need close monitoring by a practitioner familiar with the medication
    Best of luck guys.

    #3507
    mrslawlshark
    mrslawlshark
    Participant
    @mrslawlshark

    For the night terrors, I am taking Clonazepam– it has helped out quite a bit with the screaming, but not with the moving about and still having them.

    I do work part time, so I’m really worried about trying to work and keep a normal schedule without meds! I have a really hard time exercising as it is, I just get so tired!

    #3509
    Avatar
    Natdoc
    Participant
    @natdoc

    mrslawlshark
    Do the night terrors occur at about the same time each night?
    If pregnant you will most certainly need to stop the klonopin, perhaps another consideration that is safer is a small dosage of clonidine, which would alleviate the movements and screaming, or Prazosin which is also effective and safe in pregnancy.
    The more you try to exercise now even for small amounts of time a couple times per day ,say walking for 1/2 mile will pay off for you in the end. Also if you could eliminate most carbohydrates from your diet you would notice almost an instant increase in your energy level.
    Medications are great and useful, however , they are not and should not be used as your basis for treatment.
    Good luck

    #3682
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    ElleElle
    Participant
    @elleelle

    mrslawlshark – I wasn’t diagnosed with narcolepsy with cataplexy until half a year after having a baby. It was hard, but what helped me at work was taking naps in my car on my lunch break. I also hired someone to clean my house because I was completely useless at times. I made sure to exercise when I could. Once you’re visibly pregnant, people are extremely forgiving and helpful so it is nice not to have so much pressure to be totally with it. I wish I had been less hard on myself, but I didn’t know I had narcolepsy and although everyone kept telling me it was normal to be so “tired” I felt horrible because I couldn’t keep my eyes open. I stopped working 4 weeks before the due date and was horribly disappointed in myself because I felt so useless. I was so out of it those last few weeks I couldn’t even watch TV or read.

    I’m planning on getting pregnant again soon and will get off my meds. Knowing what I do now, I will be sure to schedule naps. I really think naps are the key to maintaining sanity when off of meds. I have to do IVF to get pregnant so we are planning on scheduling it so the 2nd half of the pregnancy is in the winter. That will make it easier for me to nap in my car on days that I work. I live in California so too hot much of the year to do that. I will also probably drink a little coffee here and there. I will probably stop work again 4 weeks before I’m due or possibly even before that.

    As far as waking up for the baby, you might want to check out some monitors. A lot of them can link to your phone or smartwatch and you might find something that works for you.

    Good luck to you and let us know if you find any strategies to deal without meds that work.

    #3695
    Avatar
    NayChan07
    Participant
    @naychan07

    Hi there! I’m a 27 y/o mother with N w/o cataplexy. I had been disgnosed a little over half a year before I found a good med regimen for myself (adderal + nuvigil). A month later my husband & I were surprised to find out about our pregnancy. I came off all my meds, including cymbalta I take for anxiety/depression.

    I took naps whenever I could, & went to the gym almost every day. I walked on the treadmill & did some arm machines. Naps & exercising really helped me feel better in general. When I drove to the gym I didn’t want to go – I just wanted to stay home & sleep! But once I was halfway through my exercise routine I felt awesome. I kept thinking to myself “look at the pregnant narcoleptic girl at the gym! I’m awesome!” Lol.

    My son was born 2 months early because I went into pre-term labor due to preeclampsia. The hospital we were at have “private” nicu rooms where parents could room in with their babies. One night a nurse had to adjust another baby’s security anklet & forgot to disable it. The alarms went off & I slept right through it! I had no idea. When I woke up the nurse apologized & was shocked it didn’t wake me – then I explained I had N. A good majority of the time though I woke up to his cries.

    I’ve been back on all my meds since March & went back to working part-time in April. Being a mother with N is hard, & not for the weak lol. Luckily, newborns in general just sleep & eat. So all the snuggles & naptime really help mama. 😉

    #3697
    mrslawlshark
    mrslawlshark
    Participant
    @mrslawlshark

    Hi Natdoc,

    The night terrors do not occur at the same time each night, nor do they happen every night. I guess I should probably be better at tracking them so that I could find any patterns there might be! Thank you for your recommendations.

    #3699
    mrslawlshark
    mrslawlshark
    Participant
    @mrslawlshark

    ElleElle and NayChan,

    Thank you so much for your advice, support and words of encouragement. It’s good to know that there are other people out there living with similar situations. I will definitely try scheduling naps, and work on getting my but into the gym. I know its good for me, but I lack motivation and energy.

    NayChan— are you able to do more intensive exercise now? I don’t have a lot of motivation to just go to the equipment and workout for long periods of times, I would like to do classes but I feel like I need to build up some sort of stamina before I can jump in to one of those! The exercise classes can be really intense and intimidating!

    #3701
    Avatar
    NayChan07
    Participant
    @naychan07

    🤣😂 I would love to go back to the gym, but I would have to go after work. I’m too exhausted after my shifts to do anything but make it home. & my kid is full of energy & needs almost constant attention. We don’t have him in daycare as well, so that puts a constraint on gym time. There are walking trails & parks around our area but it makes me nervous going by myself with him. I worry about us getting mugged or he gets taken somehow (hello anxiety my old friend lol). When it was warmer my mom & I would take him for short walks but it wasn’t every day.

    I went to planet fitness, so I would take a book to read while walking & music as well. I just did the machines in their 30 min workout area so it wasn’t as intimidating as the regular machines if that makes any sense. I would also go with one of my besties, which helped with motivation too.

    Dear son will be walking soon, so that’ll help me with exercise lol

    #3703
    Avatar
    ElleElle
    Participant
    @elleelle

    Mrslawlshark – As far as exercise goes, when pregnant, just do anything you can and try not to make it too complicated. I think one of the hardest things was realizing that in exercising I will not progress, but only regress. It’s too easy to just give up. I was going to a gym when I was in my first trimester and was so exhausted it was hard to motivate myself to actually drive to the gym. I realized that wasn’t working for me because I kept using the drive as an excuse for why it was too hard or took up too much of my time or energy. I decided to quit the gym and started at home workouts with dailyburn. I also got a lighter coffee table for the living room so I could move it out of the way easily to use the space to workout. It sounds silly, but I felt like I had to get rid of any barrier that could get in the way and give me an excuse to forgo exercise. I still use dailyburn today, over a year after my daughter was born. Of course these days I can only get it done without interruption if I wake up at 5am.

    #3715
    Avatar
    NayChan07
    Participant
    @naychan07

    Agreed. As the pregnancy went on it got to a point where it took all i had to just walk 30 mins on the treadmill. But thats okay. Just do your best & know that whatever exercise you accomplish (even if its just vaccuuming) is awesome & good enough! 💪👍😀

    #3746
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    Wonderfulworld
    Participant
    @wonderfulworld

    When I was pregnant with my first I wasn’t diagnosed yet but I knew that a train could crash into our house and I’d still be sleeping. I was also afraid I wouldn’t be able to wake up when my baby would be hungry and my husband and I agreed that he would just go get the baby when she cried.

    When the time came I was the one waking up and my husband was the one not hearing the baby!

    I guess that’s just a mother-thing.

    #3753
    mrslawlshark
    mrslawlshark
    Participant
    @mrslawlshark

    Wonderfulworld,

    Thank you very much for posting this! I find it very helpful 🙂

    #9773
    Avatar
    NayChan07
    Participant
    @naychan07

    Just thought I would post an update! My son is 2.5 y/o & still a little energizer bunny. I switched from adderall to concerta sometime last year which helped a lot & felt like i could keep up with him. Well now, we’re surprised with baby #2 (thanks, nuvigil) lol. Again, I’m off the concerta & nuvigil but this time I’m staying on the cymbalta (i had pretty bad ppd). I work part-time so that’s been interesting since I have to travel to multiple work sites. I’ve been okay at work & able to focus for the most part, but at home I’m a couch potato. My son’s been as understanding as a toddler can & luckily i have family to help. I honestly didn’t think we would have another baby but God/the universe/etc must’ve had other plans. It’s just hard not doing everything I was & readjusting to lower expectations of myself.

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