Pregnancy with narcolepsy - treatment options?
I am planning on getting pregnant soon but I am concerned with my narcolepsy. I haven't done a sleep study yet - just basing the diagnosis off of what my physiatrist tells me. I was talking modafinil which seemed to help most days but my doctor wants me to discontinue this while trying to get pregnant/breast feeding. I have been off of it 1.5 months now and struggle pretty much daily to stay awake.
How else can I treat the narcolepsy?
This may be a little late but perhaps other people are interested in narcolepsy and pregnancy. For both my pregnancies (about 20 & 25 years ago) my doctors consulted with the teratogen specialists and at that time very little research was done on amphetamines and pregnancies. A lot of studies were from drug users taking very high doses. The main issue was possible low birthweight. My doctors and I talked about benefits and risks and I decided that in order to be able to function somewhat normally during my pregnancies, I would still take amphetamines (I don’t recall which one at that time, I think it was dextroamphetamine) but at a much lower dose. Thankfully both my kids were healthy and at just over 10lbs, they certainly weren’t too little. My suggestion is to talk with your doctor and have them help you with researching the medications you are taking and compare benefits vs risks.
Hi
. Thanks for sharing your experience. Clearly, low-birthweight was not an issue for you! 😀 Wishing you the best. - Lori (Team Member)
I don't know about meds but be really intentional with your nutrition and as backwards as it sounds, get some movement into your days.
Omega is a big one, I take fish oil every morning and I save my carbs for dinner. If I eat carbs in the morning, like toast with breakfast, I am done for.
I am more exhausted on the days I don't workout than the ones I do. Obviously, once you get pregnant, you might have to modify movement but even a walk is beneficial.
I hope you get your sleep study soon! Wishing you all the best on your journey to diagnosis and pregnancy.
I'm so glad you have techniques that help you deal with your narcolepsy symptoms! I've also noticed that eating makes me tired, in particular eating carbs like you said. In the mornings I try to eat protein because of that. I have not heard from people with narcolepsy that fish oil is helpful! I suppose it makes sense, since it's good for the brain and that's where our illness is based from. Thanks so much for sharing what works for you! I discuss food and narcolepsy symptoms in this article: https://narcolepsy.sleep-disorders.net/living/foods-trigger-symptoms Maybe you can relate to some of it! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Sorry that you are having these symptoms, and having to live with them untreated! People with narcolepsy often have to go off their medications while pregnant too, which is awful because it brings back symptoms full force! I hope you're able to get in to get a sleep study quickly! Please keep us updated if you feel comfortable doing so. Warmly, Tatiana (Narcolepsy.sleep-disorders.net Team Member) I have a referral in for a sleep study but the wait list is ridiculously long so who knows how long it will be before I get in for a test! I started showing symptoms of narcolepsy during my first pregnancy and it has hit me hard. I am most concerned with my inability to stay awake while driving. Falling asleep at my work desk - not a huge deal. They are pretty understanding of the situation. It helps that I am in Human Resources 😀 But - driving. Huge worry of mine. Especially now that I am no longer taking a stimulant - staying awake has been extremely difficult. I sleep during the night in approximately 2 hour increments.. So it's hard to say what is causing what at this point.
Hi
. I am glad your doctor is treating you as if you have narcolepsy while you wait for the sleep study. Driving is a serious concern for people with narcolepsy. Do you have to drive or are there other alternatives, such as public transportation or ride sharing? One of our advocates wrote a two-part article about drowsy driving with tips for driving safely. Here is part one: https://narcolepsy.sleep-disorders.net/living/driving-safe and here is part two: https://narcolepsy.sleep-disorders.net/living/car-nap-guide. I hope you find something in the articles that helps. Many people with narcolepsy also suffer insomnia or have odd sleep patterns. So you are not alone in that. How awesome that your employer is so understanding. They are fortunate to have you in human resources. Your own experiences will make you more empathetic to others with disabling health conditions. Warm wishes. - Lori (Team Member)
