What is your worst symptom?
What symptom of narcolepsy impacts you the most?
The most annoying thing I deal with are triggers and avoiding them! Anxiety is a major trigger for my cataplexy and I will avoid it at all cost. Unfortunately, the price I have paid for protecting myself has cost me friendships and employment. It took a long time to come to terms with the guilt of being my own advocate!
The worst symptom I deal with is the excessive daytime sleepiness. I am grateful for the medications that help promote wakefulness, and I am a big advocate for daily naps. However, I wake up every morning and immediately start anticipating when I will be able to lay down to sleep again.
I also struggle with brain fog. I often tell people who don't know me well that I'm pretty ditzy or scatterbrained. There will be times when I thought I was fully engaged in a conversation only to find out that I only heard half of what the other person said. It is frustrating when I have to ask "sorry, what did you say?" or "can you repeat that again?" time after time. However, I am thankful for those in my life who are understanding about what I live with. My boyfriend for example is always ready to re-explain something to me or answer questions when my brain is struggling. It is important to have that kind of support when dealing with this condition!
Xoxo/Zzz, Gabrielle (team member)
my issues with Narcolepsy without cataplexy is exactly like yours.
Gotta have that excessive day sleep and I be up late at night midnight from 2am-4am sometimes
For me the worst issue is not knowing how I will feel when I wake up. It's hard to plan for anything because I may not have the energy or my energy may run out. More often now I find that when my energy decreases I also lose interest -- that didn't happen in the past -- and it makes it hard to push myself. I'm happy that taking XYWAV has mostly controlled my cataplexy. But it doesn't guarantee a good energy level the next day. Thanks for asking question! It's very helpful to think through questions like this.
Yes, it can definitely be intimidating to think about switching medications... I know from experience! Especially antidepressants. I think it's important to ask your doctor/pharmacist for a list of possible side effects to look out for that might indicate that stopping a new medication is needed. Best of luck to you! If you'd like to read more about treating narcolepsy with antidepressants you can do so here: https://narcolepsy.sleep-disorders.net/antidepressants I totally understand what you mean about sleep inertia. Before I had narcolepsy, I was able to bounce out of bed and be awake. But now it takes hours for me to feel any sort of wakefulness, and even then it's very low. Can be very frustrating. Especially missing alarms due to narcolepsy symptoms. Oh hey, I also take my medications earlier than I plan to be awake! That way it feels like my body is waking up on its own. Kinda a useful narcolepsy trick. Warmest regards, Tatiana (narcolepsy.sleep-disorders.net Team Member) 
That sounds like quite a struggle,
. I can understand your reluctance to try Xywav though if you have to switch antidepressants. They can be difficult to wean off and it's hard to give up something you know works for something that might not be as effective. Thanks for chiming in. - Lori (Team Member)
For me the worst symptoms have always been the sleep paralysis and the nightmares. I've always had nightmares so I could 'get used' to it. But when I was 15 I had my first sleep paralysis, and from then they have been accompanying me, and there's no way to get used to that, even more when they appear every night or many times in just one night. The terrible balance between being sleepy and afraid of sleep make those the worst symptom for me.
Thank u for asking, and sorry for my English (I speak Spanish)
Alon
Heya! Firstly, you're English is amazing so no need to apologise! 😁 And yes I can so understand because I used to have a LOT of nightmares, hallucinations and sleep paralysis episodes to the point of being terrified to go to sleep. It's such a horrible way to live! Luckily I haven't had so many in the last few years so I am very thankful for this. Sorry to hear that you have them so badly! Always here to help! Take care, Iris xxx I totally relate when it comes to nightmares. I have always had lots of dreams, all the way back to my childhood. I dealt with a lot of hallucinations at night (often accompanied by sleep paralysis) prior to getting diagnosed with narcolepsy. I actually started believing I was crazy and needed to go to a mental hospital. I was seeing a therapist at the time my hallucinations and dreams were climaxing. Thankfully after opening up to my doctor, she suggested I get a sleep study. A few months after that, I was diagnosed and finally had answers to the issues I had dealt with for so long.
I hope you find a solution to your nightmares and sleep paralysis. Maybe you should talk to your doctor about medications that might aid in some of those things? Or perhaps there are natural alternatives to help? Best of luck to you!
Xoxo/Zzz, Gabrielle (team member)
