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Which narcolepsy symptom impacts your daily activities the most?

In your experiences, which narcolepsy symptom(s) impacts your daily life activities the most? Has this changed over time? Also, do you have any tips on how to deal with it?

I would love to hear your perspective!

  1. It depends on the day. I have Type 1 Narcolepsy, and Cataplexy is very debilitating. However, I can sometimes avoid it, if I can keep away from triggers. No matter what I do, I still suffer from EDS and I feel like it's sucking away my life. I never have enough energy to play with my toddler, or go to the store, and leaving the house is a doubly scary proposition, because the real world is where the most triggers for Cataplexy live... Not to mention that driving is so worrisome for me that I sometimes trigger my own Cataplexy if I start to think about what would happen if I fell asleep driving. The hardest thing of all though, is that I am a single parent, so I have zero help with anything. I'm also still waiting on my disability determination, so, that makes things even more dicey. I feel like it should be on the automatic list of approved disabilities, because having a life with type 1 Narcolepsy is difficult enough without having to fight the SSA for money to be able to live on top of everything else.

    1. thank you for taking the time to respond. Im so sorry youre gping through this crap too. Youre absolutely right about fisability being inaccessible to the disabled. Its utterly ridiculous. My trial was a joke, too... they also tried to focus on irrelevant things, my migraines of all the things wrong with me (what?!) When i clearly told them i can't even stand for longer than 10 mimutes at a time (i have psoriatic arthritis on top of this lovely narcolepsy) and then they twisted everything i said and it upset me so badly i didnt even want to talk to anyone for almost a month afterwards. I still havent even brought myself to finish reading the 14 page decision yet. I cant get past page 6.
      I hope that things go better for you and try not to be so hard on yourself, i cant imagine how much more difficult things would be with 4 kids! Sending you all the hugs and good vibes 🫂

    2. Hi and . TalyaB, it breaks my heart to think you haven't been approved yet. It's been two years. I hope you both consider hiring lawyers who specialize in disability claims. Many with take your case on contingency, where they take a percentage of the settlement. So you pay nothing up front and nothing if you are not approved. They know the system better than anyone and should be much more able to get your claims through. You both clearly need disability. I hope you continue to advocate for yourselves and that you eventually get approved. Gentle hugs. - Lori (Team Member)

  2. Mine has definitely changed over time. When I was unmedicated, it was cataplexy that impacted my daily activities most. Now that I take medication for it and it works pretty well, I'd say the day time sleepiness impacts my daily activities most. As well as this, I'd say nightmares can have a massive impact on my mental health and if they are really bad have a massive impact the next day and I will struggle to function.
    In terms of tips how to deal with it: I think different things work for different people but for me in terms of nightmares, two things that I have found to make them less intense / able to cope better is sleeping with a night light and avoiding being too warm. I'm not sure why the avoiding being too warm helps but it is something that definitely works for me.
    Day time sleepiness: for me, it's coffee, medication and prioritising my time. So engaging in activities that I know are more likely to make me sleepy at times of the day I'm more likely feel most alert.

    1. That's really hard to quantify. I want to say excessive daytime sleepiness but brain fog and cataplexy are also extremely impactful and depending on the day which symptom is more prominent. The nightmares and sleep paralysis impact my mental health and the nights they are bad, the next day could be negatively impacted! My narcolepsy has changed over time. My cataplexy has more triggers but is generally less extreme. My sleep paralysis hallucinations became more varied and vivid. My excessive daytime sleepiness remains the same or possibly more prominent. Regarding tips: find what works for you! Don't be put off to keep trying to get a treatment whose positives outweigh any side effects. Trust that you know your body and if something isn't working it isn't! Speak to people in our community, which is the best support and knowing you aren't alone. People try all kinds of things including diet change etc to manage symptoms. See what works for other people and maybe try some of those things and weight them up for pros and cons and what works for you. Best Wishes, Lauren (Team Member)

      1. For me, it's hard to choose but I'm definitely in between the daytime sleepiness and the cataplexy...but now that I'm back to working in an office 9-5 I guess the daytime sleepiness affects me the most! It's horrible! Especially after difficult to concentrate! 🙁

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