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

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Is There Anything That Helps You To Lead A Normal(er) Life?
A MyNarcolepsyTeam Member asked a question 💭

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

posted February 25, 2021
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A MyNarcolepsyTeam Member

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

posted March 4, 2021
A MyNarcolepsyTeam Member

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 March 2, 2021
A MyNarcolepsyTeam Member

Wakix works for me.Not a cure just takes the edge off. My cataplexy is much less , I seem to stay awake longer,sleep longer but still only going to REM sleep I am not rested completely when i wake up. my dreams are not as vivid it seems so I do not remember much of the dreams as I used to. I still hallucinate as I tire during the day or night when I am awake but very tired. I have trained myself to get to bed when I get this tired so I do not engage in automatic behavior as I am wandering around the house at 2 in the morning,then find myself standing in some room in my house thinking I was in the kitchen , I was really in the living room. Still wakix seems to better my situation. Yes , it is expensive. My copay was 3200.00 per month which I cannot afford. The Wakix people directed me to NORD, National organization for Rare Diseases. I called and filled out an application over the phone and the next day they called me back and I was approved. Now last year I called NORD and they said that they were not covering Narcolepsy but the next year 2023 they covered it with no cost to me. It is a year contract which I now am coverd up through December of this year. I would suggest calling the Wakix people and asking for the connection to NORD. I wish you well and understand your plight in trying to live a better life.

posted February 19
A MyNarcolepsyTeam Member

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 March 5, 2021
A MyNarcolepsyTeam Member

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 March 2, 2021

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