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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is There Anything That Helps You To Lead A Normal(er) Life?

Is There Anything That Helps You To Lead A Normal(er) Life?

Have had a diagnosis of narcolepsy with cataplexy for about 10 years. While sleep was always important to me, I never knew it was narcolepsy until I started collapsing at work. I was embarrassed at what was happening and withdrew from life to continue to hide it. I did my research and suspected cataplexy. A couple of doctor visits later it was confirmed. What to do about it? Doctor prescribed Xyrem at night. Took some getting used to, but it helps with sleep. Crazy, a narcoleptic needs… read more

A MyNarcolepsyTeam Member said:

Have u talked to the people at wakix for you? I qualified for a year free

posted over 1 year ago
A MyNarcolepsyTeam Member said:

I take wakix...i weaned off of adderall xr. Wakix is doing ok i guess...struggling some without the adderall. Very hard to get up. Wakix is not a stimulant. It increases hystimine which they say those w narcolepsy lack enough of.

posted over 1 year ago
A MyNarcolepsyTeam Member said:

My cataplexy is so severe I had to go on disability. I'm currently on Medicare and not eligible for their programs. I do not respond to stimulants so Wakix sounds like a miracle drug! I looked at paying for it, but in no way can I afford it. I'm taking Venlafaxine for the symptoms but it creates other problems. I want off it!
So, you took Wakix for a year? Did it help? Were there side effects? What happened after your year was up?

posted over 1 year ago
A MyNarcolepsyTeam Member said:

I'm trying to get to try Wakix, but my insurance won't cover it. I certainly can't afford $14,000 a month. How do people afford it.
I'm on Medicare and they do not allow reduced costs for the drug.

posted over 1 year ago
A MyNarcolepsyTeam Member said:

My son's dr said he would like to try wakix for his cataplexy. He also said he has never prescribed it and is new. So I want to know as well has anyone used this med? If so does it work?

posted over 1 year ago
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