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
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
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
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.
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 ;D
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 ;D
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!
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
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
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
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 ;D
Quote from: Linda196 on November 05, 2010, 05:15:14 AM
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.
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.
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 ;D
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
Good luck. I agree 1/2 dose is probably a good idea. What strength do you have?
I would love to try Nuvigil, but can't because I have mitral valve prolapse. :(
Reanne, I also have MVP but it has been under control for years with atenol. I might call my cardiologist early in the a.m. to see if he thinks it's ok for me to take. The strength is the middle one.....165.......I think. I will start wih 1/2 of that and see how I do. I won't chance the drug again if that happens, as my family has all died of heart attacks and I'm afraid of this. However, living 20 hours a day in bed/couch is no way to live either. Will keep you posted. Lucy
I want to add that I had a very horrible night last night and am going to wait a week or so before starting Nuvigil.
I had night terrors all night for the past two nights. I have NOT started any new meds in many months so it's not that. I don't know if something got off kilter, but it was something I've never had before. Two nights in a row like this. I could not find my husband in the dreams and that type of thing. He is not sick or anything, but he had serious surgery recently--but is doing fine.
He is going huinting on Sunday and wants me to wait until he gets back to start the medicine. I think that is a good idea because I still am not feeling well. I will wait and then still report on my results later. Lucy
P.S. I called my heart dr and he said that is could cause heart palpatations and cautioned me of this and said to try and see what happens. I will be very careful.
Lucy,
I do agree you should wait. It is never a good idea to start a new med if you are on edge about it. Your state of mind can actually have an effect on it. But I will be waiting to hear how you do. But I hope it works for you as anything that improves your quality of life is worth trying.
Keep us posted.
Becky
Last night, I didn't have the terror type dreams I've had, but I had one bad dream. It was more of a straight normal kind of dream I'm used to. I dreamed that my cancer had returned. Not a good dream, but not all 3-d kind of flaky stuff. Lucy
After 12 years in heck, I was sent to a rheumatoligist. On first visit he put me on Nuvigil & predisone. First time I've felt normal in 12 years. I had forgotten how it felt. Miricle drug'
I know I have said this before, just wanted to say it again (but of course follow your doctors instructions). I take 250mg 1-2 a day at separate times and I have been on this medication for quite a while, so my system is used to it. I forgot to eat this morning with it (originally told by my dr to take it on empty stomach). Hours later sitting at my desk no exertion my heart started racing. My heart rate was around 120 sitting at my desk. This continued all day long and I felt like crap. Hot, racing heart, freezing hands. It makes a HUGE difference if you take the medication with food. Just wanted to share that.
OK, got all my obligations and husband is home from his hunting trip. Tomorrow, WEDNESDAY NOVEMBER 17TH, I will take my first 1/2 dose of Nuvigil.
I am retired and sleep odd hours such as staying up half the night and sleep all day. I want to change this somewhat. I have no need to get up at 6, 7 or even 8 o'clock. Hubby is up at 5 am every morning to sit in front of tv. Excuse me, sleep in front of tv.
If I get up around 9 or 10ish and EAT BREAKFAST AS MY DR DIRECTED, I'll see how I do. Will make a post if I remember tomorrow. Want to say that I am terrified of the fast beating heart thing. I've had that all my life, but is controlled. That;s why I'm going easy on the med. Lucy
Looking forward to hearing your results. I'm sure everything will be ok. Having positive thoughts for you. Let us know.
Well, I took my first "dose" of Nuvigil today. I have 150 mg tabs. I broke one in half. On part was a little smaller than the other and I took it. It would have been a tad less than 75 mg. I didn't go any where today as I was a bit afraid of any reactions. I did not have any reactions. I will take the other "bigger half" in the morning. If I do not have any reactions, I'll probably start with a full tab on Friday or Saturday depending on what I have to do. I am afraid of having heart palps or fast heartbeat that goes on all day. I know this is one of the possibilities of this med.
Lucy
Quote from: eyeamdry on November 17, 2010, 02:52:11 PM
Well, I took my first "dose" of Nuvigil today. I have 150 mg tabs. I broke one in half. On part was a little smaller than the other and I took it. It would have been a tad less than 75 mg. I didn't go any where today as I was a bit afraid of any reactions. I did not have any reactions. I will take the other "bigger half" in the morning. If I do not have any reactions, I'll probably start with a full tab on Friday or Saturday depending on what I have to do. I am afraid of having heart palps or fast heartbeat that goes on all day. I know this is one of the possibilities of this med.
Lucy
Glad to hear the first day went so well. Did it help with your fatigue at all?
AutoI---I have no idea if it helped with fatigue or not just on one day. I usually take several days before I have an answer to my questions on any med.
I envy people who can just know after one day if they are helped or not. I'm a bit dimmer. Will keep reporting though. Lucy
OK-OK--I've been basically Nuvigil-less and decided I had to get serious. It could only kill me once. First I have the sleeping pattern of a second or thirdd shifter. I always had day jobs and felt my body wanted to do something else in those hours. So now I sleep all day and half the night.......tadatada.
I have to get my self up and out of the house and exercise or I'm going to just get worse. My hubby woke me very gently at 8:30 am like I told him and said he hAD MY BREakfast ready. I whined and said I'd eat later I was going to sleep more. Then the phone rang. Back to sleep I tried. Then the phone rang again. Hubby was answering it, but the ring kept bothering me. OK, I get up again and go back to bed again. Then up again. By now it's 10:00 a.m. and I'm thinking if I can hurry, I'll be able to make my water class.
I made it. The gals were glad to see me. I took a whole Nuvigil and am still alive 5 hours later. I do not feel like I have energy, in fact I'm taking a nap. I did some C-mas shopping after I did the swim. I could hardly walk from the car in the garage to the house when I got home. My knees are bad and I'm waiting for my surgery on my big toe on Dec 17th. I at least want to get a months worth of the Nuvigil so I can tell if they're worth it or not. I know they will be expensive. I am going to keep taking the 150 every morning and will report sooner than later. Lucy
I didn't feel much in the beginning. I think it builds up in your system and you should start noticing some improvement. It does get me through the day. Do you have the discount card from the manufacturer? I only pay $10/month. I think it will go up in a few months though.
Auto...I will see if I can find that thing to print off the internet. BUT in reading the Nuvigil free 7 pills info, it said in small pring it would not pay if anyone was part of any .......blah blah...(not sure exact wording) but seems that it included some or all insurance companies and/or Mediccare. I will present this to the pharmacy and see what happens.
I took the pill about 10 am (my getting up time today) and after my exercise class and shopping I was dead and my knees (I need replacements) were so sore. I went to bed with my elecric blankie at 3 pm for about an hour but did not fall asleep. It's not 11:30 and I'm tired. Be going to bed soon.
I am not going to try and make my waking hours start at 7 am or anything, no reason to. I should be up by 9 or 10 though and not sleep all day. See how I can sleep (or not) tonight. It'ss snowing here and it's turned cold so bed is very inviting. lucy
That all reminds me when I first started the Nuvigil, I had been falling asleep at my desk at work :o With the Nuvigil, I was still tired at work and had the urge to sleep, but it was like I could not close my eyes. I do take a higher dose if necessary, but it does get better. Gosh, I can't remember the last time I fell asleep at work, so I know this is definately working. Doesn't mean I am never tired (esp. since I have a hard time going to sleep/falling asleep) and maybe get 4-6 hours of sleep a night, but now that I think about it the difference is amazing. I have had days where I had to get home after work and take a nap, but at least I get through my day. I have also had days I didn't work where I took it and I had energy to get some housework done (I rarely take it weekends, unless I need to go somewhere).
Here is the link for the discount and I do have insurance through my employer ($30 copay on brands) and with this card I only pay $10. http://www.nuvigil.com/pat/wakefulness_resources/7_day_coupon.php
Hang in there!
Sorry people that i am such a bad example of starting something, then stopping, then starting............Well, I have actually done that. For example when I want to sleep half the day, I don't even take the Nuvigil. That's what I'm trying to get away from.......sleeping all day. I have taken a couple of half doses and now about 3 full doses and I have not had any bad effects. Today I was a bit afraid because I went out by myself and went to 3 different stores a long way apart. I didn't do much shopping as my knees are killing me and I can hardly walk.
I got home about 5 pm and thought I would take a nap on the couch while the news was on. Well, I lie down and my feet and knees hurt so bad, I took a pain pill and thought I would fall asleep. I did not and I laid there for at least an hour. Since, I've been up and doing computer and watching tv since I can't walk.
I hope I can sleep tonight and I will take what I normally do at night (never mind).
Others I have read sound like it keeps them from daytime sleeping and this is what I need. I didn't feel like I had an injection of speed or anything--and that was what I was afraid of. I will get up sometime in the am. Before noon. :-)...........take my Nuvigil and see what trouble I can get into without having to walk. I also want to go to Fla in Feb and how is that possible when your knees hurt so bad you can't walk. I already have crutches, walker, canes etc.
I'm counting on one knee repl in early spring. Lucy