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Narcolepsy and Pregnancy

Has anyone else found that their symptoms are exacerbated while pregnant?

Usually, my paralysis/hallucinating state only last for 10 seconds to a minute at most. Lately i have been stuck in an episode of paralysis for up to twenty minutes.

My dreams are horrifying and feel more realistic than ever. My other senses such as physical touch are heightened too. Usually, i am aware when i am experiencing night terror and can wake myself up by focusing on moving a body part eg my pinky finger.

Lately, i am completely unaware i am in a state of sleep paralysis and truly believe in that moment that it is a wakeful experience. My hallucinations have gone from scry to beyond horrifying and are occurring frequently throughout the night. It is awful and affecting my moods during the day! I find i am quite withdrawn, scared or often reflecting on what happened to me during that moment of helplessness.

Only thing i can think of is that pregnancy hormones have something to do with it. Any information or insight would be appreciated.

  1. Hi . I wanted to follow up on Tatiana's advice and see whether you made an appointment with a specialist and how you have fared so far through the holidays. So much has changed in narcolepsy treatment even in the last ten years. I would think it would be really beneficial for you to see a neurologist or a sleep specialist, especially since you will soon be a mom. Do you mind me asking when you are due? I hope you are doing well and that you have a wonderful New Year. - Lori (Team Member)

    1. Thanks for your response, and well wishes Lori. No, i don't have a neurologist or a sleep specialist. I was diagnosed in childhood, however, have only ever addressed the diagnosis with my GP. Would you recommend engaging with a specialist? Could you let me know what to expect from the appointments and whether it would be beneficial?

      Answering your questions above, i have a great sleep routine. I sleep around 9 hours every night and rarely get little or broken sleep, unless of course i have an episode!

      I am 18 weeks and this is my third pregnancy. I am 33 years old. I had my fist child at 23, and second at 26 and never had issues with my other two pregnancies.

      1. If you have new or worsening symptoms, which it sounds like you are experiencing, it is important to check in with your doctor about them. Specialists in sleep neurology tend to know more about narcolepsy than general practitioners, so that is something to think about. There are medications that are available to help with these symptoms but generally a GP might not know about them due to how little the medical community at large knows about narcolepsy. Best of luck to you, stay healthy, take care of yourself and that little one! Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member)

    2. How terrifying, . Do you have a neurologist or see a sleep specialist? It would be good to talk with a medical professional about what's happening. Every pregnancy is different and every case of narcolepsy is different, so it can be hard sometimes to find people who have been through the same thing. I hope others chime in here though with their own stories and that they offer advice and support. Here is an article from one of our advocates about narcolepsy and pregnancy: https://narcolepsy.sleep-disorders.net/living/mom-life-pregnancy. She notes that extra sleep is important. Do you find your episodes are reduced if you are able to get more sleep? Here is another article that might be helpful: https://narcolepsy.sleep-disorders.net/living/meet-taylor-from-project-sleep. It's about a project designed to help women navigate narcolepsy and pregnancy. You will find a link in the article to The Pregnancy & Narcolepsy Toolkit. You might find more answers or potential solutions there. If you don't mind me asking, how are along are you into your pregnancy? Thinking of you and sending the very best of wishes your way. - Lori (Team Member)

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