Allison Echols
What is the hardest thing about living with narcolepsy? Share your answers below!
CommunityMember0104ad Member
Most frustrating for me is waking up after "sleeping" for at least 7 hours and feeling as though I haven't slept in days! Then, if I try to go back to sleep, I start dreaming right away. When I wake up again, my head is buzzing (like white noise) and it takes me a while to fully awaken. Very frustrating!!<span style="font-size: 1rem;"></span>
Lori.Foster Community Admin
That does sound frustrating,
Tatiana Corbitt Moderator
SleepyTwin Member
Hardest? How do you pick just one??
1. Even with meds, I still get sleep attacks daily, some larger than others.
2. Pre meds, I was having frequent cataplexy that looked like seizures. With meds, my cataplexy is significantly smaller, but the frequency has increased to almost daily. I am constantly toning myself down and trying not to laugh.
<span style="font-size: 1rem;">3. The result of #2 is I appear to be the grumpy one at work. </span><span style="font-size: 1rem;">People at work talk behind my back but I hear whispers still. Genuinely worried I am going to loose my job soon.</span>
4. As a result of #1, I have managed to keep my license but have had to significantly lessen to driving. It feels like my independence has been taken away.
5. I am constantly choosing between social events or errands, or naps. If I push through with no nap, I end up with a migraine and my cataplexy is worse for the rest of the night and into the following couple of days.
The list goes on but those are daily "hard" things for me.
Lori.Foster Community Admin
Hi
Tatiana Corbitt Moderator
TalyaB Member
Living. I have zero quality of life between narcolepsy and being in constant pain and i cant do any of the things i wish i could be doing instead of sitting on this couch.
Lori.Foster Community Admin
You have so much to contend with,
Tatiana Corbitt Moderator
dgrigsby1976 Member
Staying awake throughout the day. It irritates me and makes me depressed in just sleeping all day.
Lori.Foster Community Admin
Sleepiness can make anyone irritated, but facing it every single day, all day, no matter how much or how little you sleep at night must be maddening,
Tatiana Corbitt Moderator