4 replies to this topic

[sleepinginthesun]

After falling asleep while standing up at work in April I have been going through test after test to find out what is going on in my body. Looking back now (and after discussing with my doctors) I suppose that episode had been a long time coming. I am 26 years old and can't remember the last time I could sit still without falling asleep. Over the last few years, I have gone from being a full time student, with a FT job, and still having energy to volunteer and still have a social life to being a FT worker and coming home to sleep. My weekends now consist of mostly sleeping, no evergy for anything else... even when I do go to the movies for instance my boyfriend is constantly checking to make sure I haven't fallen asleep then we head straight home for a nap.
Not until the incident at work did I even notice this. Yeah, I noticed I was tired, but honestly I didn't seem to have the focus/memory/whatever to put it all together and see the drastic difference. My boyfriend had been bugging me for over a year to discuss it with my doctor and it took falling down at work in front of co-workers to motivate me to do so. Embarassing.

I was just diagnosed last week with narcoolepsy and was prescribed Provigil, 200mg at 6 am and again at 12pm. The first day seemed great... and that was it. Everyday since then has been filled with adverse side effects. I have severe tremors, my jaw muscles clench to the point they feel almost locked up, and my shoulders and lower back spasm. I went to see a friend of mine who is a chiropractor and has an in office massage therapist and they could not believe the effects this drug seemed to have on my muscles. On top of that I get the sweaty chills and dry mouth like crazy! Speaking of crazy, I am usually a very laid back mellow person, and now seem to become easily irritated. I have tried reducing the dosage significantly (now taking 1/2 a pill in the morning only) and it all still continues. I do notice a slight difference in my level of alertness (about half of the time, the other half seems like no change), but the side effects have left me wondering if the small difference is worth it. I stick to a very strict sleep schedule, take at least one nap every evening after work - short naps don't seem to help me, wake up feeling like I was hit with a ton of bricks. I have no trouble sleeping at night, or at any other point in the day... if I'm not moving, chances are I'm sleeping.
I have a call with my doctor tomorrow to discuss other possible treatments, however everything I have read/researched says that Provigil is one of the best, with the least side effects. Has anyone else experience something like this at first, and then it stopped? Has anyone else had side effects like this and then found something to work better? I know that every one responds differently to different medications, but it doesn't hurt to hear what others have tried

[greatbig47]

I have a call with my doctor tomorrow to discuss other possible treatments, however everything I have read/researched says that Provigil is one of the best, with the least side effects. Has anyone else experience something like this at first, and then it stopped? Has anyone else had side effects like this and then found something to work better? I know that every one responds differently to different medications, but it doesn't hurt to hear what others have tried

I only take my provigil when I need it. I have no hard-and-steady time I take it.

If I get sleepy, I take one. If it gets too late, I don't.
Other than "getting in to the habit" of taking it, I don't think there is any reason to have to take it at the same time, everytime.
I don't think there is a "level" that needs to maintain in your system.

I started doing this after it felt like the Provigil wasn't working. For me, giving provigil a break occasionally lets me re-discover the love all over again.

But that's just me

-Stu

[Heidi987]

My doctor stated that Provigil was the most popular medicine available for narcolepsy; the side effects are minimal and only happen to a small percentage of people. After taking Provigil for a few weeks, I noticed I was extremely irritable, unhappy, and I felt like I constantly had PMS. I complained and complained to my doctor and she finally switched me to Ritilin (which I love). I will never take Provigil again - it was such a horrible experience.

[Henry G]

My doctor stated that Provigil was the most popular medicine available for narcolepsy; the side effects are minimal and only happen to a small percentage of people. After taking Provigil for a few weeks, I noticed I was extremely irritable, unhappy, and I felt like I constantly had PMS. I complained and complained to my doctor and she finally switched me to Ritilin (which I love). I will never take Provigil again - it was such a horrible experience.

Provigil is a very over-hyped medicine.
I know of non-narcoleptics begging me to give my prescription to them - as they truly believed it would make them more "intelligent".
And I know of many narcoleptics who never seen Provigil in their lives but truly believe it is a cure sent from Heaven.
It's all due to the propaganda, astroturfing and viral campaign brilliantly designed by Cephalon.
And now that the patent is about to expiry - they thought they should introduce a new-kid on the block: "Nuvigil"
Which, from what I read, seems to be exactly the same as Provigil but not "quite".

Don't get me wrong Provigil has it's place somewhere - and whilst it seems to help some Narcoleptics; it doesn't seem to be the majority on the long term.

In an ideal world; medicines should be issued according to the patient needs rather than a patient needing to conform to the medicine rules of usage. For example - it would help me a lot if I could be prescribed only 1 pill of Ambien per week (but no more); but such is impossible it is either 28 pills (a very slippery road) or nothing.

Anyway Provigil seems to help on odd occasions, I don't know what the stats are, but I feel (and kindly point me if I am very wrong, please!) - there is no Narcoleptic person who managed to take Provigil regularly daily for over 6 months without either getting annoying side-effects or the medicine losing complete potency.

For 6 years I've been taking Ritalin and Benzindrine, they do not cure my N but they help (say a 20-25% improvement) - they have never lost their potency during those years. Their strength and effectiveness (however limited or small but nevertheless helpful) remained constant ever since.

I found one Provigil pill here in the house the other day, I am scared of taking it. I get all sorts of nasty side-effects now, my body became very allergic to it.

[sleepinginthesun]

I ended up talking with my primary care doctor while waiting the 2 months while i waited for the sleep specialist to have time for me (my neurologist is the one who perscribed the Provigil) and am thankful he is a wonderful provider and LISTENS to his patients. Within a couple of minutes of explaining how the Provigil made me feel he agreed that it was not a drug for me. While as far as he knew it was the "best drug available" he understood that it does not work for everyone. He did a lot of off-hours research on my behalf and forwarded me information by e-mail. He contacted doctors he had been through med school with and top neurologists/sleep specialists in the area he respected to help me temporarily while I waited for the "recommended sleep specialist" to see me.
We ended up choosing Ritilin (and it was a "we" decision all the way! So grateful for that!) as my temp fill in. I have had none of the annoying side effects as of yet (just about 1 month in)... However, we did choose to start me at a very low dose, and it seems to no longer be as effective as it once was (last week I had 4 episodes that altered my daily life even though I take naps and keep a very strict schedule).
Now I am waiting a couple more weeks to see this notorious sleep specialist and see what he recommends... but what makes me the most hopeful is my primary has already told me that he supports my decisions and believe I should have a say... if I go to see the specialist and try what he recommends, but don't like it... my primary will work to find what works for me.

This is the most encouraging, supportive efforts I have experienced since being diagnosed! Day to day is a struggle, I won't deny it, and I don't expect a magic cure... but just to know I have someone in my corner willing to rule out the hype and focus on me helps each day pass a bit easier. I could only hope that you all have at least one person who does the same for you... and if not see Dr. Fernando in Phoenix, AZ