Status
Not open for further replies.
G

Guest

Guest
Hi ALL! Well, here is the story. My daughter was diagnosed with narcolepsy 2 weeks ago. Her doctor gave her 150mg tablet samples of NUVIGIL. She took one, and it was like she had just woken up from a 2 year sleep. Coincidentally, my dad went to his ALS specialist in Seattle who gave him samples of the same thing for ALS fatigue, only his were only 100mg. (he weighs 210 - my daughter 120) My dad said it didn't do anything for him and stopped taking them. I have Fibromyalgia and struggle with extreme fatigue, so after calling my pharmacist and making sure that it would not interact with anything I am already taking, I checked it on the internet, and sure enough Fibro patients take it for fatigue as well. I was just dragging the Monday of Memorial Day weekend, and was planning on having to do the usual of laying around and napping, and I thought, well, I will try this little pill. WOW! I got so many chores done! The next day at work I took 1/2 of one and WOW again, life is good! So, I called my dad and told him that I thought his dose was to small. So he tried 150mg. Nothing. The next day he went back to his ALS specialist and he upped my dads dose to 200mg in the am, and if he didnt feel better to take another 200mg at noon. Guess what folks! IT WORKS! My dad got his life back! He is now once again wanting to go on a cruise! He was out running errands, happy laughing.... feeling like his old self again energy wise! Now 400mg would put me in the hospital, but with PALS it is different. Happy days! Now my dad went to get his script filled at the pharmacy. Here is the bad news. Had he not had a co-pay with medicare it would have cost 1300.00 for a months worth! Now that would through him into the doughnut hole in about 2 1/2 months. Luckily, he has also the VA. They do not cover Nuvigil, as it was only released on the market in 2009. However, they do accept Provigil which is essentially the same drug except the effects do not last 15 hours like Nuvigil. I checked on the price for Provigil and it was the same as Nuvigil. Thats sucks for me, who is on medicare, and my daughter who does not have any insurance. If there is any type of generic out there I will find it and post it here. Now for CANADIANS Provigil is called Alertec. The key is to get the right dose that will give you the energy you need.
I find this to be a true miracle pill! You can go on Nuvigil dot com and download a free 1 week trial coupon. But it doesnt work for people on medicare or any other type of government assistance. It also does not work if you pay cash. Your doctor may have samples. Provigil has been talked about here on the forum a long time ago. So folks, this new drug Nuvigil is truly a non-stimulant miracle pill!
Hugs! Kari
 
G

Guest

Guest
That is fantastic. I am glad you have found something that works so well for you.
 
G

Guest

Guest
Provigil was ordered for us at the VA by our Neuro, but it has to be approved upstairs, then they will mail it to us. Hope it comes soon. HUGS Lori
 
G

Guest

Guest
Oh Lori, that would be soooooo great! He will need to start out slow and then work up on his dose like dad did. I read on the VA formulary that 2 other stimulants have to be tried first. Hope not. Provigil is a non-stimulant. Keep me posted on how it goes. I will be calling you tomorrow anyway!

And tdamess, you too, let me know how it goes! Remember if there is regular insurance involved you can print out a coupon from the Nuvigil site for a free weeks worth. It is worth every penny to get quality of life back!

Hugs, Kari
 
G

Guest

Guest
I feel hesitant to get too much energy back. How would I use it, stuck in this chair? It might backfire?
 
G

Guest

Guest
Well, for once hun I can relate a bit to that one! I take it on my really bad fatigue days and I get all excited that I now have energy, and then I go about trying to do things and I realize CRAP! I still have the pain issue! It does suck then having a mind that wants to do things and a body that says "Nope" but I did things slowly. You will want to take that chair into the garden, you will feel like going to the market, even if it is in a chair hun. The overwhelming fatigue will not be making you depressed on top of everything else. They say Nuvigil etc does not give euphoric effects, however I think on some level it does because it wakes you up, and you just dont feel the horrible fatigue, thus it will make you happier.
Hugs my luv!
Kari
 
G

Guest

Guest
I used Nuvigil but it gave me headaches, so I stick to 5 hour energy drinks.
 
G

Guest

Guest
Lori (sadaemay) said her husband was just put on Provigil, and he has a ton of energy! It is on her other thread, but I thought I would post any positive results here!
It's a good day when you hear someone with ALS is feeling better!
Hugs, Kari
 
G

Guest

Guest
Ton of energy yesterday, He overdid(wouldn't listen) and is paying for it today. Oh well, maybe he will listen to reason(me) from now on. It is going to be very helpful however. We may not use it every day, but we shall see. HUGS Lori
 
G

Guest

Guest
Does anyone know what category these drugs are in? What class? Triplicate required or not...It would have to be paid by insurance,or privately. Medicare,Medicaid(hospice) always uses cost effective drugs. Does anyone know how they work ,chemically? I am sooooo happy for everyone. Quality of life is so much more important than quantity.
 
G

Guest

Guest
Hi Peter 12155, Welcome to our forum hun but sorry you had to find your way here. I quickly looked at your link, and its really good. BUT, I would be VERY careful about those ad's that were on the side. Modifinil, Provigil and Nuvigil are all VERY expensive. They all have the same active ingredient of Modifinil. My dad takes it and gets it for free from the VA. When he first took it, it only worked a few days and then stopped working and then his neuro told him to STAY on it every day and now he is doing fabulous. He was first prescribed a script for Provigil and tried to get that filled at a local Wallgreens, and it was 1300.00 for a months worth! Myself, I have chronic fatigue issues and MEDICARE will NOT cover these meds. I was able to get my doctor in touch with the drug rep. for Nuvigil. He was able to get me a coupon for a free months worth. (it said I couldnt be on medicare to qualify for the coupon so I went to a different pharmacy than I usually go to and played dumb) and whalllaaaaaaa a 1300.00 prescription for free! It works guys, it really really does! Your appetite is the same, but your alertness and energy go through the roof. It is not a stimulant they say, but DONT have a cup of coffee when you are on it! Lordy, that puts you through the roof! It is not addictive. (I only use those bars of gold when I am in the hospital with my daughter over night or for emergencies with my dad)...... IT REALLY REALLY WORKS! Ask your doctor for samples, or to get a coupon from them and if you are VA, get it now and feel better!
Love ya!
Kari
 
G

Guest

Guest
Thanks for the tip on staying on the provigil. Bucky has been taking now for almost a month, and was just talking about how he's not feeling the same results he did the first week and wondering if he should call the doc to discontinue! I'll pass on your dad's situation!

It is bloody expensive though! We are not part of the VA "officially" yet, so it is covered by our insurance, but WITH insurance, it still cost us $400! BUT...if it gives him more time with energy each day, then I'm all for it!

Bucky says he feels good for 4-maybe 6 hours, but then when the medication wheres off, he is even MORE tired than before...does your dad have a similar reaction?

Luv to you!
Melody
 
Status
Not open for further replies.
Top