I have been diagnosed for almost 3 years now and I still have family members that believe I'm just lazy. On my bad days I can sleep 19 hours a day or more. If I'm cold I go into hibernation mode and can't wake up til I warm up and some of my family act like I chose to sleep. Luckily my husband isn't like that. If y'all had similar experience how did u deal with it?
I am very fortunate. My psychiatrist and neurologist talk to each other. My medication are monitored by both and they work together. I want people to understand. You can require a consultation with… read more
I have Fibromyalgia and other issues but not ADHD
Has anyone else figured out that they had narcolepsy before their doctors? I always have trouble getting my doctors to truly listen to what I’m saying, and for them to not say that EVERYTHING wrong with me is because of my anxiety/mental health. No one would listen, so I talked to my psychiatrist and told HIM I was pretty sure I had it, told him my symptoms... HE referred me to a sleep specialist, I did the studies, and now it’s confirmed. I’m 32. I’ve been having symptoms since I was a kid. 8th… read more
It sucks that alot of people say the same thing. Doctors need to be more involve and if they really have a passion for their career, that they went to school for so many years. They should start… read more
I am so sorry for all of us with Narcolepsy plus a lot of us come with many other health issues. I think we have gone through a lot and if only the ones that don't get it would only go a day in our shoes. My friends here I would like to say I am proud of you getting by and doing what you have to to complete your days. This is our life and we have to except how difficult some days can be. Do you know we don't no how strong we are until we have to be. So fell good inside because I know you guys… read more
I am thankful that after being diagnosed with NwC, I got educated and made changes to be able to function. Thankfully, I'm a fighter and I am no stranger to God's love ❤️ for us all. After many… read more
I know with chronic fatigue syndrome, you can push yourself too hard and then have consequences of that in the following days. Do you feel the same thing with narcolepsy?
If I feel good, then I can keep doing whatever I’d like.
But if I push back against the sleep attack, I pay for it immediately. I get super grouchy, incredibly Sleepy progressing to confusion. I’m… read more
Has anyone ever in the past been told by a doctor they think you have narcolepsy and put you on meds for narcolepsy. This happened to me years ago. Just wondering if anyone has ever been diagnosed with narcolepsy with a physicitrist when you told them all of your chronic health issues . Mine ask alot of questions about all my disorders and concluded that I did have narcolepsy in his judgment because as a child the mental issues I had up until adulthood was linked to narcolepsy. Physicitrist if… read more
I agree with Jeanne. I have NWC too and too much sugar throws me into a cataplexy attack
I was dynose for Narcolepsy at a young age. I had to deal with it and on my own learned how to help myself. When in my 40tys I found out What I had and got on med. I would say being young in some ways coping was a learn g thing not saying it's easy young or older , but for some reason I would think it would be crazy finding out older. What you think - the ones that got it later in the years?
I am amazed at all the replies! I think anyone with Narcolepsy can relate to the experiences and emotional difficulties that go hand in hand with Narcolepsy: it is a 24/7 and insideous disease! I was… read more
Maria & I have been nerding out about the beautiful rocks and crystals we've found (aka: Rockhounding). I hike & rockhound the beach 3-4 times a week. It motivates me to get some exercise and wakes me up in the afternoon when my symptoms are at their highest. Besides Rockhounding, I metal detect and create Bonsai Tree sculptures out of wire and the rocks I find. What's your hobby?
I wouldn't call that a hobby but definitely an activity worth doing. Sounds very cataplectic. Maybe a hobby that requires you to be laying on the ground...like sidewalk chalk art or a sport like Luge… read more
Where you dont fall asleep but have no ability to focus, hear, or comprehend. It only lasts minutes but it takes a min or two to shake it off
Yes
Is it working? Are you considering other medications to help you get a better night's sleep?
I take trazadone 300mg.