Being started on Nuvigil

[eyeamdry]

Went to see my rheumy last week and I asked her if she thought I might try Provigil.  I am so tired of lying in bed/couch for 18 hours a day or more.  I have yet to get the med, which will be Nuvigil.  I will start with a small dose as I'm afraid to take things that make you go "fast." 

When I got home, I found a coupon for a free 7 day supply of Nuvigil with a written prescription.  Well, I called rheumy and said send me a new RX  for 7 and I won't have to buy a months worth to see if I can take them.

I'm also going on Carnitine and CoQ10.  I'm not starting those until after I'm on Nuvigil so I can get an idea of how the pill works.  Will add the supplements later.  My knees are killing me including the one with a partial replacement.  I had a shot of Nuvisc and it didn't work.  They used to have to do 3 or 5 shots years ago.  Lucy

[Suzie]

I wish I could try Nuvigil. They only give it to people with sleep disorders here.
I guess being half-dead with exhaustion doesn't count.

I'm also scared of taking something that might make me go fast - and do more than my body and/or mind can handle. But I want something that will make me go just a little bit more. A little push. A nudge.

Let us know how it goes. I just started Acetyl L Carnitine and ALA.
Fingers crossed for more energy for both of us.

Suzie

[becbec00]

Hello all let me start off by introducing myself. My name is Becky, I have recently been diagnosed with Sjogrens. It has been a long haul getting to this point. With that said i physically do not feel any better. I am actually getting worse. But now there is hope.
I might be able to help you out with info on both Provigil and Nuvigil. I have narcolepsy and have been on both for a total of 10 years. I currently take Nuvigil and I am a huge fan. Nuvigil is not classified as an amphetamine which means that it does not have the same effect on your CNS. Normally you will not have the jittery or racing feeling. But it brings you out of the fog and helps you to feel more awake. You won't feel as though you are a bundle of useless energy, just more like a normal human being. That also means that you won't have the crash at the end of the day. For me Nuvigil is far better than Provigil only because I was having some of the side effects. They were not bad but there was no harm in changing either. I know of a few other who is on one or the other for reasons other than a sleeping disorder. Keep pushing to get the medication. It could make a huge difference in your quality of life. Neither one of the medications have scary effects and if you try it and don't like it there is no half life to speak of.
I hope this helped a little. Please feel free to ask me anything about it. I have done a lot of research on both of them.
Becky

[Joe S.]

Welcome Becky. As you know you will find a lot of good information here. From your post I see that you are willing to help support our information base. Thank you.

I have nothing to offer you on Narcolepsy. I hope you have found good methods of management and understanding friends and family. I have one friend with it. He volunteers his time to help run a local Sci-fi convention.

Take care of yourself and be kind to yourself.

[irish]

Becky, Welcome to this site. Many people are here to give you info and help with personal experience with many aspects of this illness. Lots of different symptoms and people from all over the globe.

Hope you can find the info you need on this site. If you need info just ask cause if one person doesn't know about an issue the next person will. Hope you can get treatment that will make life better for you. Irish

[irish]

Lucy, I sure hope that the new pill will give you more energy. It is amazing that you have been "laid out" like this. I can't imagine doing that day after day. Bless you for your patience.

Are you getting hunkered down for winter? It will be in the 20's and the house is starting to feel cold so on comes the heat. Hate to start the furnace cause the gas bills are so high. We have a couple heaters that we have been using to keep the chill down at night so far but won't be enough now. Take care girl and keep us updated. Irish

[Autoimmunity]

Hello.  I take nuvigil for supposed narcolepsy.  Like somebody mentioned, it is not amphetamine like and doesn't make your mind go a million miles an hour.  But what it did do when I first started it was make my heart race severely and cause chest pain and I really thought I was going to have a heart attack (my endo had told me to take it on an empty stomach).  After researching, I found that I should actually take it with food.  I no longer had the racing heart and it is supposed to release the medication into your bloodstream more slowly.  Worked much better for me that way.
Good luck!

[eyeamdry]

I got my prescription for 7 FREE Nuvigil pills.  I can try them without buying a 30 day supply to see if they agree with me.  How lucky for me that i found the coupon on the internet the same day my rheumy wrote me the RX.

Now, I just got in the mail from the rheumy that my Vitamin B12 is very high.  It is like 2,000 and normal is 200-1100.  Dr. thought I was taking vitamin D supplements.  Not.  I had about 6 months ago but am not on vitamin B12.  Not sure what this is.  And--

My SS-A antibody id 3.4 positive.  This has not been the case with me and usually am within normal means since I've been so long in treatment.  All of a sudden my antibodies are up.  I have not talked to the dr about this as I just had this blood taken when I was there a few days ago.  Anybody have any ideas of the vitamin B12. 

I will write about my experience with NUVIGIL as soon as I get it filled and get the nerve to take it.  Lucy

[Linda196]

Good news about the FREE Nuvigil, anything free is priced right for me!

Re the Vitamin B 12......one possible cause is small intestinal bacterial overgrowth, specifically Pseudomonas and Klebsiella which can both produce Vitamin B12 within the colon, which is then absorbed by the body.This overgrowth can occur in people who have taken long term PPIs (Losec, Nexiium, etc) or who have had recurrent bouts of unexplained gastritis. Another possible cause is early (undiagnosed) Crohn's disease, which can cause small areas of bowel to become more sensitive to absorption of ingested Vitamin B12

[eyeamdry]

Thanks Linda, I have indeed had a couple of episodes recently of gastritis/GERD/stomach cramps...........by any name.  It will give me an idea to bring up when I talk to the rheumys office as they may call tonight.  I was away when they called last night.  Lucy

[irish]

LInda, Thanks for that interesting information. You know if they quit doing research and finding all this stuff wew could just be sick and die.

Now we end up with another diagnosis AND another medication or treatment. That's what happens when we live long enough, Irish

[BonusMom]

Good news about the FREE Nuvigil, anything free is priced right for me!

Re the Vitamin B 12......one possible cause is small intestinal bacterial overgrowth, specifically Pseudomonas and Klebsiella which can both produce Vitamin B12 within the colon, which is then absorbed by the body.This overgrowth can occur in people who have taken long term PPIs (Losec, Nexiium, etc) or who have had recurrent bouts of unexplained gastritis. Another possible cause is early (undiagnosed) Crohn's disease, which can cause small areas of bowel to become more sensitive to absorption of ingested Vitamin B12

Interesting info on the SIBO, Linda.  I've had two bouts of it and treated with Xifaxin.  I didn't have the classic signs of SIBO, i.e. diarrhea or gastritis.  I have chronic constipation when my gastroparesis is acting up, otherwise, I'm right as rain. I've never had my B12 tested and just recently had my D 25 tested for the first time which came back perfect.

I take Adderall XR on an empty stomach for better absorption for excessive daytime sleepiness, per my sleep specialist.  I have taken it since 1998 and don't bounce off the walls.  Actually, this week I've hit the wall with fatigue. The Icantgetoutofbedtogotoworkkindoffatigue.  I manage to go to work, but I'm not productive.  I go home and heat up something for DH's dinner 'cause he pretends he doesn't know how to use a microwave. I go to bed by 8:00.  I don't know what to do about it.  My labs are all WNL, except elevated liver enzymes.  I've lost weight (intentionally) and was feeling pretty darn good.  Up until three weeks ago I was walking at least 2 miles a day because I wanted to and I had the energy.  The only energy I have now is reserved for sleeping.  Food doesn't sound good.  When I eat, I vomit 50% of the time (gastroparesis).  I'm not depressed.  Considering the stressors of the year, we're in a good place.

I just don't get it.

[bloodless]

I'd love it if I could get a nuvigil prescription. I can't get my docs to prescribe anything for fatigue. I guess they figure if I can keep working, it can't be that bad. I drag my butt to work because I have no choice. If I didn't keep working, I don't know how they expect me to pay them. I don't have anyone to depend on, just the opposite I have people depending on me.

[becbec00]

For anyone interested in nuvigil along with the 7 day trial you get a prescription discount card that will save up to $50 dollars towards your out of pocket cost. It can be used along with insurance or without. I have had this card before and it really saves you some money. Oh yeah and it is good for up to a year then you have to request a new one. To find it google Nuvigil and go to the "Nuvigil" official site. Hope this is useful to someone.

Becky

[eyeamdry]

Well, I have the Nuvigil pills and am starting in the morning.  I have to make sure I have nothing planned for the next few days as I take this med in the morning and I'll have to stay home to see how it works out.  I'm only starting with 1/2 dose I think. 

Also my husband told me that it's this weekend he's leaving for deer hunting and I thought it was another week yet.  After all these years of living life around "the start of the hunt" I can't believe I forgot or missed it.  Well I have to know by Sunday how this is going to work.  He isn't going to be gone for very long and I could call someone if I have problems.  911 is who I could call. lol.

He would stay home if I insist, but there is really no reason.  I'll report on my Nuvigil use. Lucy