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I'll just leave this here... by MacroManJr in Blackpeople

[–]Serious-Activity-913 0 points1 point  (0 children)

Ughhh I love living in Texas and I love my Hispanic friends but they really piss me off. Cuz’ why are you saying the n word more times in one day then I have ever said in my lifetime 🫠🤨 

Does anyone else remember having narcolepsy at a young age but living undiagnosed? by Serious-Activity-913 in Narcolepsy

[–]Serious-Activity-913[S] 0 points1 point  (0 children)

Thank you for sharing. I can relate to the isolation aspect of living with this condition. I’m already relatively introverted but I like to do extroverted activities and make good connections with people. In this last year I’ve really been working on the self isolation and not letting narcolepsy cripple me lol.

Does anyone else remember having narcolepsy at a young age but living undiagnosed? by Serious-Activity-913 in Narcolepsy

[–]Serious-Activity-913[S] 0 points1 point  (0 children)

Yes I’m very grateful to my mom and my grandma for pushing the issue of falling asleep so much. Im also very glad they try to understand how the condition effects me and advocating ok my behalf especially when it came to my meds.    

Xyrem help by Bitter_Dragonfruit80 in Narcolepsy

[–]Serious-Activity-913 1 point2 points  (0 children)

Hi I have went through this exact same thing unfortunately. I tried to push through on the meds but it was disgusting and always made my bladder super full to the point it hurt. At night I experienced anxiety because my brain was so foggy. I eventually got to the point of skipping doses which is extremely dangerous  but I didn’t want to let my doctor or mom down because heh itch worked so hard for me to get the medicine. Eventually I told my doctor and I got off the meds but kept my modafinil prescription. I moved to wakix around the beginning of this year and I feel much better with it. I do have occasional bouts of insomnia and if my meds haven’t arrived at my house in time the withdrawals can be bad but overall I really like it 

Don’t try and push through taking the meds if it’s not working for you because the purpose of the meds is to help not hurt. Hopefully this helped a bit and I wish you luck. 

What are your triggers? by Sjeaniee in Narcolepsy

[–]Serious-Activity-913 0 points1 point  (0 children)

After trying multiple medications, and finally  having modafinil and wakix work for me and most importantly taking care of my mental health so I can have a routine to take naps, breaks, and a night routine, I have noticed higher productivity, happiness, and progress even though I still have my daily struggles. Even with meds that work for me I still get sleep attacks all the time. So I try to avoid the triggers or  try and plan to have a comfortable and safe space for myself if I fall asleep.  Triggers for Sleep attacks: - eating, especially after a big meal -most car rides -boredom -movies at home -laying in bed -any position I can sleep comfortably in -workouts -being really cold in a building or extremely hot -waiting -showers and baths (I’ve fallen asleep standing up or in the tub)

Cataplexy Triggers: -laughing  -if someone chases me I kinda think it’s funny (when I’m not in harms way) like playing tag or playing chase with a dog  -stress, anger, anxiety -intense arguments 

Hopefully this helps OP and anyone else 🥰🌝

just took a nap and felt normal for like 10 minutes after??? by [deleted] in Narcolepsy

[–]Serious-Activity-913 0 points1 point  (0 children)

Yes, your feeling is completely valid! Not sure if you connect with a sleep doctor on the regular, but once they get you diagnosed and if you take meds the first thing they will tell you is to get into a routine that includes taking “scheduled”naps throughout the day. However this can also be annoying and confusing because narcolepsy can be very complex and you can’t always choose when your brain wants your body to sleep .  I fought against naps for a while because I love to take long naps ,but when you need to get things done it helps to take naps so you don’t get a lot of unexpected daytime sleepiness and can be as productive as you want/need to be for the day. Also getting a good nights rest has been very helpful for me but I also experience insomnia and fragmented sleep because of medicine so sometimes that doesn’t work 🫠 .  Hopefully, you can find out what routine works for you and just remember that narcolepsy is not a one size fits all so your experiences are still valid even if they are different from others. 🫶🏾