New to Narcolepsy.
[Sleepnet.com's Homepage] [Sleep Disorders] [Sleep Links] [Search]

New to Narcolepsy.

[ Follow Ups ] [ Post Followup ] [ Narcolepsy Forum28 ] [ FAQ ]

Posted by 53Buick on August 13, 2008 at 14:51:29:

Hi All,
I just wanted to put my story here to see if my strain of Narcolepsy and my reactions are similar to others and also just to talk to other sufferers.

I am in the UK and I am a Electronic componant salesman, 41 and married with 5 children.
I drive around 50,000 miles a year and I often have dozed at the wheel for a few seconds over the last 4-5 years but never thought anything of it.

In June I was at a trade show and on my way home I fell asleep at the wheel and drifted across 2 lanes of traffic, scared myself and pulled off into a service station for a doze.
I fell asleep and when I woke 90 minutes later, I felt awful, drained and couldnt move much.
I went home straight to bed once I felt fit enough.
The next day I had 10 - 20 mini dozes whilst driving to work so I went straight to my GP and he sent me to a neurologist at last.
After a few sleep tests they said I didnt have Sleep Apnia but I could fall into a deep sleep very quickly and they diagnosed me with Narcolepsy.
I was prescribed Provigil, 100mg twice a day.

I was told I had to surrender my driving licence straight away until my neurologist was happy with my dosage and reactions to Provigil.

After 2 weeks of 100mg twice a day I found no change to my tiredness so I saw my local GP and asked if I could increase the dosage to 200mg twice a day.
He agreed.
I now find that I take my first at 9ish and then my second at 1ish but I get a headache at 2 and then at 7:30ish I get a raging headache and feel totaly useless and very depressed.
This has been happening for 10 days so today I spread the dose to 100mg at 9, 100mg at 12 and 100mg at 3.
At around 6pm I felt lower than low, no headache but totally worthless, i just curled into a ball and slept on the sofa.

I have to report back to the Neurologist on the 2nd of September with my feelings and reaction to the tablets but.........
My job is hinging on this meeting.
My company have said that as a salesman I have to be on the road and there are no jobs for someone to be working from home.
I live to my means and I am the only income for my family.
I am very worried that the Neurologist will change my tablets and then I will have to stay without a driving licence again for another 6-8 weeks while I am being monitored.
This I am sure will be the end of my career.

I am an engineer by trade so I have thought I may be able to try and start my own business working from home but this would take a while to grow...

I am concerned that my depression is maybe a bit of the medication and alot of the job and the family but how do I move forward?

It would seem that in the UK that nobody knows anything about Narcolepsy or how to deal with it.
That worries me also.
The local GP took my word for how much Provigil I should take as he knew nothing about it....

So, what can I do about the tablets, the only way I know they are in my system is when they wear off, they dont make me feel full of the joys of spring, coffee and all the boost drinks have never worked either btw.

What can I do about my job?

Does anyone else here suffer like this on Provigil? is it going to get better?

I appreciate any help that is posted....this is scaring me.


Follow Ups:


Post a Followup

E-Mail  :  required - same address used when you registered (will not show up in posting)
Password:  required (sent to you when you registered)

Subject : Re: New to Narcolepsy.

Comments:....note: including your email address here will result in the removal of your posting (See removal policy)

PLEASE ONLY CLICK THE SUBMIT FOLLOW UP BUTTON ONCE!!. Thanks, Sandman

[ Follow Ups ] [ Post Followup ] [ Narcolepsy Forum28 ] [ FAQ ]

WWWBoard 2.0a and WWWAdmin 2.0a © 1997, All Rights Reserved.
Matt Wright