Surprising Symptoms of Narcolepsy
What are your most surprising symptoms of narcolepsy? How do you manage them?
My most surprising symptom is the lack of appetite. I'm Italian, I've always loved food. Since becoming full bown disabled due to narcolepsy and like 20 other conditions, I don't eat. I eat once every 3 days. But if I don't eat a small bit of carbs before bed when.i eat, I can't sleep. at all. I'm just over the gazillion symptoms this condition is bringing into my life.
Hi
. It must be awfully hard to maintain your weight. Would it help to develop an eating schedule and small-bites menu with a nutritionalist? Maybe eating little bits throughout the day even if you have no appetite will help. Thinking of you. - Lori (Team Member)
I was getting the sinking and cant breathe panicked horrible experience alot when I was stressed and possible fever, struggling to breathe trying to wake up cant move awfully scary, I was sinking back I thought if I stop struggling I will die. I wake up panicked sweating and breathless my partner witnessed it said it was scary.
I used to wake up every morning to a panic attack when my narcolepsy was diagnosed due to going off ADHD meds for the first time in a decade. I was 33 yrs old. It was TERRIBLE. Because I live in a tiny town with, at that point, one psych who ran everything.... his father was wonderful and I functioned spectacularly under his care for a decade
But when he died very quickly due to.prostate cancer, his son took over the practice (despite not being a psychiatrist)and took every patient off all controlled substances. I was a very busy paralegal who handled 9 attorneys sometimes 16 to 18 hrs a day, and he stopped my refills of Ritain 60 mg a day, xanax 3 mg a day as needed, and 3 other meds, and wouldn't help me at all. I am finally back on a low dose of Ritain and xanax at 45 yrs old. It was terrible. I. Feel for you honey.I experienced that alot when I was really stressed not sleeping I was terrified to fall back asleep as it kept happening obviously as I was still exhausted even if I lay on sofa for an hour I would get it, I thought if I stop fighting I will stop breathing and die. Now I get alot of faces in Patters which might be down to lack of good sleep, bed time is torture
The horrid life-like nightmares. I kicked a huge hole in my bedroom wall and ripped a tall lamp apart while totally asleep. I tend to act out my dreams, which are typically very disturbing.
How scary,
. Do you live alone or is there someone to look out for you when you have your worst dreams? Thinking of you. - Lori (Team Member)
Before I knew i was narcoleptic I would get sleep paralysis quit breathing and I would try to cry out but couldn't open my mouth I realize I wasn't breathing and would tell myself if I could just turn over I could breathe.by that time which seemed forever I would breathe again wake up be drenched in sweat.my 1st episode I remember was a junior in high school and wasn't diagnosed with narcolepsy til I was 33.a lot of scary years in between.
I was just told I had sleep paralysis and sent home dont get any support from gp, Scotland. I never sleep, in alot of pain, drip everything trip up, loose my balance, slurry speech unreal. Hi
. I wish you had a better doctor. You need and deserve better treatment. Can you get a referral to a sleep specialist or are you limited to your GP? Can you afford to pay for a private consultation? Thinking of you. - Lori (Team Member)
