Narcolepsy Nightmare

by Jason
(UK)

Hello, what a great website. Thanks to others who have posted their stories.

My life is a daily struggle with a narcolepsy nightmare. I hoped when I started medication life would get easier. It has but at same time it has not.

About 8 years ago I had to stop working due to other health problems. EDS ( excessive daytime sleepyness) highjacked my life with frightening serverety. I was diognosed with OSA (obstructive sleep apnea) 130 apneas a hour. Was prescribed a CPAP machine. My apneas (AHI) Index went into normal range. EDS was getting worst.

After 3 years of being u Dre care ENT consultants. Was offered no relief, answered, solutions. My G.P prescribed MODAFINAL only because I asked. Had become suicidal ( this was about 3 years ago) I'm not suicidal now, EDS EASED. But withn a year it was back. ENT doctor fettered me too neouroligist. Why I was not referred years earlier. Or referred was sleep studies I don't know. Soon seen neouroligist. He ordered sleep studies. Was on waiting list for 1 year ( I'm in UK). Chased appointment found out would need too stop taking modafinal for sleep studies. Explained i can't. Won't go back to how I was when unmedicated
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Soon neouroligist prescribed Dexamphetamine 3 tablets a day. A year ago. I'm up too 55mg dex a day. And 400mg modafinal. I'm still sleepy. Get random sleep attacks. Seem too have mild cataplexy which neouro decides to ignore.

Soon much I want too do in life. Assess too medical help frastratenly takes time. G.p admits this out of her area of expertise. Neouro consultant, too see him g.p must refer me. Not possible too phone speak too him. He's too busy. Lack of support makes everything worst. Eventually so frustrated I'm just going to blow. And dem and help. Shouldn't have too be like this. Narcolepsy symptoms are bad enough. The Doctors who are meant to help actually aint helping. Don't know where I go from here.

-Jason, uk