RE: OT: Sleeping so much

[Guest guest]

Hi,

Two medications that help with narcolepsy and have recently been approved for

other uses are Nuvigil and Provigil. I take Nuvigil for daytime sleepiness. I

have ’s disease and fibro. I am on this group to help support daughter

with Still’s. But my illnesses are so similar in symptoms, it makes it all

seem like it crosses over. The Nuvigil has a pharmacy coupon which allows a

month free, and then refills at a reduced rate. I will post the link in case

anyone is interested. I have taken Adderall in the past. With Nuvigil, it is

long acting and need just take it once in the am. My dose is 250mg per day. They

make as small as 150 mg tablets. I would usually take two, but to be eligible

for the discount, I cut my dose by 50mg.

http://www.nuvigil.com/try-nuvigil-for-free

Hope you get to feeling much better soon . I also had sleep studies and

have sleep apnea. I use the CPAP machine, but not too sleep in, it helps

regulate my breathing during the day when the allergies are bad. The air is

filtered and it helps with my anxiety to keep my breathing steady while awake. I

just can’t get used to sleeping with it on and have at times, but figure some

use is better than none from it. Things could change.

Happy feelings of love and light with healing all around,

xoxo

From: Windsinging melt

Sent: Saturday, March 31, 2012 3:25 PM

To: stillsdisease

Subject: RE: OT: Sleeping so much

Thank you all for your replies and wishes! , I am so happy for

Hadleigh! I hope all goes very well for her with the procedure. I had a sleep

study a few years back and am apnic. I wasn't a candidate for surgeries because

really no tonsils, and/or other options the doctors said. The medication I have

been on since October was working until about a month ago. I spoke with my pain

doctor yesterday and we feel it MAY be that when I started the Nurontin for

daily headaches, it could have caused the Ritlin to become less effective. His

advise is to go back to just one or none of the Nurontin since my headaches have

improved and see if the need for sleep lessens again. I do know there are other

medications to help with Narcolepsy as well so onward from here I guess. I just

really appreciate all of your understanding and support. It would be nice if

there were a life with a middle road for us ;0) Smiles and hugs,

To: Stillsdisease

From: cbvvw1@...

Date: Fri, 30 Mar 2012 22:45:13 -0400

Subject: Re: OT: Sleeping so much

, have you ever had asleep study? Hadleigh was diagnosed with Sleep

Apnea. Without doc appts, etc., she would sleep all day. Seems she was not

able to get enough quality sleep. She will be getting her tonsils out along

with other issues soon...Finally cleared with Cardiology!

Hope you are able to get some help....Take good care!!

[Guest guest]

Hi all, I did take Provigil some years back and then some Nuvigil samples this

winter that worked well but of course the insurance company may now need to be

applied for one of those again as a special request. , I use a C-Pap

but because I am claustrophobic they gave me just the pillows that fit

under my nose. Much less invasive than the facial masks that I have seen others

use. I also have very narrow passages in my nose and one time the ENT tried to

pop them open. That was horrible. Never again. My pain management doctor I saw

on Friday thinks as I am suspecting that the Neuron tin dosage for the headaches

may be interfering with the Narcolepsy medication so had said to reduce that and

or discontinue it. when I took it some years back it took away my

daily persistent headaches at a certain dosage. It helped me so much and I no

longer had them for years until just a month ago. I've stopped having them again

but cannot live with the Narcolepsy. So, thank you all for your support. I'm

sure it will all work out given the options we have available. You are all so

kind.Much love,