Provigil - Narcolepsy Anyone?
Written: Jun 01 '08 (Updated Jun 01 '08)
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Product Rating:
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Pros: Very subtle in how it works.
Cons: Sometimes it worked. Sometimes it didn't work.
The Bottom Line: A breakthrough in treatment of symptoms for narcolepsy - but doesn't work for everybody.
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| kristinafh's Full Review: Provigil |
About Me
The first time I heard the term narcolepsy, I was just a wee youngster. It sounded kind of dirty. Like racy. But since I was watching a television show with my grandparents, and they didn't tell me to leave the room, I figured out that it wasn't a dirty word. Just a weird sounding one.
Eventually, I learned that it was a term used to describe a sleeping disorder - one that can truly alter an individual's life. But like all of the other disorders and diseases I have ever heard of (thanks to shows like M*A*S*H, Dr. Quincy, and Marcus Welby), I just filed it away as a piece of information to retrieved whenever some medical question would come up in Trivial Pursuit.
And then in 2006, my life changed. Most of you reading this today are familiar with what has occurred over the past 24 months. This is just another piece of the puzzle that I haven't shared with you until now.
Sometime in the August/September 2006 timeframe, I started having issues staying awake. I would get a full night's sleep, wake-up, take a shower, and go on my merry way. Any time that I stayed still for more than 2-3 minutes, I always had the urge to just sleep. It wasn't a conscious thing. Literally, my eyelids would just go into autopilot, shutting down as if they were under orders from a higher being (which they were - my brain).
I tried lots of things.
Caffeine.
Walking.
Listening to music.
They all helped some. But regardless of what I did, my body just wanted to sleep.
Okay I thought. Given what I had been through, I thought that perhaps my body needed to 'catch up' - to compensate for the wear and tear on it from the nesidioblastosis.
The only problem was, it was interfering with my ability to do anything - work, talk, watch television, interact with my family. It was horrible. I was irritated. There were times when I would be driving and I would have to pull off to a local fast food establishment and take a cat-nap. A cat nap? I never took cat naps! But usually after letting my body collapse (and this lasted 15-25 minutes), I woke refreshed like I had slept a full eight hours.
Weird.
When I mentioned this to my neurologist - Dr. M. - he mentioned that it sounded like I had a sleeping disorder. Nonsense! I thought. Sure, I snore some, but that doesn't keep me awake nor does it wake me up. When he mentioned narcolepsy - I looked at him with a screwed-up face.
Narcolepsy? No, I don't think so.
I mean, everyone who has narcolepsy are freaks you see in movies. They are these people who are the butt of jokes - who can't drive because they nod off at random moments. Thankfully, I squashed my seven year old kid reaction and I kept my mouth paralyzed as I worked on rearranging my racing thoughts into some logical chunks of data.
While I agreed that this whole situation wasn't right, I just chalked it up to the octreotide injections and everything else going on with my life.
I don't think that's possible.
Without even looking at me, he started talking while scribbling down something in his notes.
I want you to make an appointment with the sleep clinic. Let's see what they find out.
I went to a sleep clinic (arrived at 8 p.m.) and was put through a series of tests (which lasted until 3 p.m. the next day). There were two series of tests that they put me through - Polysomnogram (PSG) and Multiple Sleep Latency Test (MSLT).
Links provided if you'd like to find out more:
Polysomnogram (PSG)
http://en.wikipedia.org/wiki/Polysomnogram
Multiple Sleep Latency Test (MSLT)
http://en.wikipedia.org/wiki/Multiple_Sleep_Latency_Test
Oh my. The tests said it all. It was confirmed - I had narcolepsy.
What Really Is Narcolepsy?
Narcolepsy is a sleep disorder. The main symptoms include but are not limited to: excessive daytime sleepiness (EDS) including sudden, brief (about 15 minutes) sleep attacks, cataplexy (sudden loss of muscle tone), hallucinations (that occur at the onset or offset of sleep), and sleep paralysis.
It is estimated that narcolepsy occurs in approximately one in every 2,000 Americans (more than 135,000 individuals). It is not associated to any specific race or gender – it’s an equal opportunity disease.
According to the latest research, narcolepsy is believed to be caused by a deficiency of the brain chemical orexin A and B (also known as hypocretin 1 and 2). While medications can aleve some of the symptoms – to date – there is no known cure for narcolepsy.
About Provigil
One of the first medications that Dr. M. prescribed for me was Provigil. Kind of a cool name, right? That's actually the brand name - the active ingredient is known as Modafinil. Provigil is the brain child of drug-maker, Cephalon, Inc. It was approved by the FDA in late 1998.
What is it? Provigil is a is a wake-promoting medication prescribed for conditions like narcolepsy, shift work sleep disorder, and obstructive sleep apnea/hypopnea syndrome.
It is a rare beast - currently the only FDA regulated prescription medication of its kind because it acts differently than traditional stimulants.
What It's Approved to be Prescribed for
In the United States, Modafinil is approved by FDA for the treatment of narcolepsy, obstructive sleep apnea/hypopnea and shift work sleep disorder.
Recommended Dose + Daily Routine
The recommended dose of Provigil is 200 mg given once a day. This, of course, will vary patient by patient. For me, my dosage was 200 mg - twice a day. If you suffer from narcolepsy, your physician will most likely recommend that you take it in the morning. I took the first 200 mg in the morning - before I ate anything and then the second dose around 1 pm.
If you take Provigil with food, you'll see a lag between the time you take it and when it kicks in (about an hour).
What it interacts with
I didn't find anything that it interacted with. As always, check with your physician and the company for more info on this.
Possible side effects
The instructions told me that the most common side effects of Provigil were headache, nausea, nervousness, stuffy nose, diarrhea, back pain, anxiety, trouble sleeping, dizziness, and upset stomach.
Personally, I didn't experience anything bizarre.
Effectiveness
I liked Provigil. I really like it. The problem was that after taking it for a week, it would just stop working for me. My neurologist had to change the plan and every other week, I switched back and forth between this and Concerta.
When it worked - it worked well. When it didn't work (and I had to switch to Concerta), I was pretty miserable.
I found out later from others, that there are some people like me who have the same issue. For others though, this has been a miracle drug which has allowed them to lead semi-normal lives.
I am now completely off of it however, because of my semi-positive experience with it (and given the fact that narcolepsy has so little available in the way of prescriptions), I am giving this a thumbs up.
Link to Very Long FDA Approved Information About Modafinil
I wanted to include this for those of you who want to know about every single minute detail (as you should - it's a drug). This covers every single known drug interaction, the type of research/experiments conducted, and everything else that is known/unknown about Modafinil.
http://www.fda.gov/cder/foi/label/2007/020717s020s013s018lbl.pdf
Average retail price for Provigil:
• 100 mg (30 ea): $176.93
• 200 mg (30 ea): $267.76
Recommended:
Yes
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Epinions.com ID:
kristinafh
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Member: Kristina Frazier-Henry
Location: Indiana
Reviews written: 1344
Trusted by: 1169 members
About Me:
Cannot breathe. Missing Barbara.
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