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Does Anyone Know If You Can Carry Sodium Oxybate On An Airline?
Yes, but the bigger question is whether it is allowed in another country if you are traveling out of country. I had my doc write a brief letter noting my prescription and dates of travel.
How Do You Deal With Other Peoples Judgment?
From my experience people are usually very judgmental and rude, even tho I have explained my condition, they still just think I'm lazy and uninterested, even though I have explained why I'm more tired and sleepy then the other people around me. i think it's because in my country only about 30 people are officially diagnosed with narcolepsy, so many people don't know what it is and refuse to learn about it and acknowledge that it is a real and seriously life changing.
I constantly feel judged and very misunderstood. It frustrates me that people don’t realize that it is a true struggle to live with narcolepsy. We can educate others and we can spread awareness but we… read more
Does Social Interaction Exhaust You More Than Other Activities?
Even a 30 minute conversation absolutely drains me. But if I spent that same time doing something else, it's not as tiring???
Seems like most time it's the same for me
Does Anyone Have A Severe Startle Reflex With Their Cataplexy
As under certain circumstances I am experiencing some startle reflex. Could you described, if you feel comfortable with it naturally. What kind of startle reflex and the level of severity which… read more
Does Anybody Else Experience Facial Twitching In Their Sleep ? It Feels Like I Am Trying To Fight My Way Awake As My Face Twitches
When my facial twitch starts I can feel it.I am alseep but am totally aware of my facial twitching as it feels like my body is trying to fight it’s sleep, often it terrifies me so my husband knows to wake me up, when he wakes me u out of this horrible state my neck and back give out on me as if I have no muscles , feels like my body falls asleep when it’s still awake?
No facial but legs.
CBD Question
Hello - I am looking into CBD oil or oral spray - curious if anyone has tried this and what dosage was beneficial? thanks!
Full Spectrum CBD Tincture (oil) has been a game changer for me. It almost completely removes my daytime symptoms. When I start feeling severe fatigue I take 1 Ml (50 mg) and within 20 minutes I am… read more
How To Stop Sleep Talking
If you have family or a partner you live with, ask them to wake you up when you are being extra active, that has been very important for me. When I sleep talk or walk the best thing is when I'm… read more
What Is The Strongest Stimulant For Narcolepsy?
It really really depends on the individual. Some stimulants work well for some, but not others. Some people have adverse side effects to a medication while others don't. Often a person has to try… read more
Hey, Does Anyone On Here Receive PIP Payment For Help?
So I have applied for PIP three times now, once on my own, once with help from Narcolepsy UK and this last time with help from a disability service local to myself. I struggle to work full time, I've had to give up a second job because it was dangerous for me to work. And this current job I've reduced my hours. Like most of us I am mobile and can do things but struggle, I can drive with my meds but struggle, I feel we fall into a crack in-between being well and disabled to a lot of people. I am… read more
I am currently awaiting a tribunal for my PIP claim (applied for DLA when diagnosed in 2008 but got refused and haven’t bothered trying again until now) just the process of the form was so much, then… read more
So After Multiple Cataplexy Spells In A Roll Does Anyone Ever Get Headaches After Pr Walk Around With Your Head Feeling Numb?
Confusion is a bit hard to get used to with Cataplexy. It takes a bit for me to realize I am going through Cataplexy. Normally I realize I am having issues and Now I have a plan to help myself. I… read more
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