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Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?
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
Do You Consume Or Avoid Caffeine?
I have to have caffeine! My neurologist has suggested decreasing a bit which I have done but still need some. With the narcolepsy and migraine issues no caffeine at all is a no go for me for sure.
What Aspect Of Narcolepsy Worries You The Most?
Medications constantly becoming ineffective
How Do Beverages With Caffeine Affect Your Narcolepsy?
I'm not a doctor, but I would venture a guess it has to do with the actual quantity of caffeine in the cup of coffee. If you have a cup of coffee that has a dose of caffeine in it that reaches what… read more
Were You Forced To Give Up Your Driver's License After Your Diagnosis? How Did You Cope?
I have not been forced to stop driving. Everywhere I drive is within 15 miles. If I have to go farther I ask for help from support group (family). They love me and understand what I am going through.
What’s One Thing You Wish People Who Aren’t Living With Narcolepsy Could Understand?
I wish they could understand that it is not that I am lazy. I get tired. Also that I am not losing my mind when it comes to the cataplexy spells. They are very rough on the body.
Did Anyone Else “diagnose” Themselves First?
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
Do Stimulants Help?
When I was first diagnosed beginning of high school, my doctor had me try a couple different treatments. One of them was Ritalin, but I was wary of pills and didn't want to go that route. College has really been testing my limits, and I'm starting to fall behind. Do stimulants help any of you guys? Which kinds help the most? Do side effects outweigh the pros? Thank you!
I’m taking Modafinil and it is helpful. At times I feel a bit anxious in the mornings after I’ve taken my modafinil.
What Medication Are You Taking To Help You Sleep At Night?
Is it working? Are you considering other medications to help you get a better night's sleep?
I take Melatonin... my doc wants me to try Zywave (sp?) but have not been in place where I can mess up my sleep schedule even more because of work.
What Symptom Of Narcolepsy Do You Find Hardest To Manage?
EDS
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