Provigil
 

Good morning to all. I am curious if any of you have tried Provigil, and if so, how did you like it? My neurologist said it may help me mentally to be more alert, and in doing so, I may be able to deal with my physical weakness better. She said the medication does not really help physical weakness. She usually prescribes it for narcoleptic patients.

I have taken Provigil for about a year - works great...I no longer feel like taking a nap at 10am! I can usually work full days, come home and do a few things like make dinner, etc... It keeps you alert but it doesn't really make you feel different. I sure notice if I forget to take it though. The doctor prescribed 200mg every morning but I cut it back to 100mg after a few months - it made me so wide awake that I was having trouble going to sleep at night. Good luck!
Gabe

I've never taken Provigil, but I appreciate you posting the question about it, and Gabe's answer. It's something to keep in mind should I need something like that in the future, since I'm "between" neuros, and my GP appreciates any info I can find to help her treat my MG better!
Hugs,

Thanks Gabe for your response. I am glad it is working so well for you. I took 1 100 mg pill yesterday. Yes, I felt more alert. This is what I posted on the original BT:
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Hi GodDreamer2007,

Thanks for your response. I tried 1 100mg Provigil yesterday and I did feel a "subtle" type of difference. I still did my napping like usual, but I felt that if I needed to be involved in a conversation or whatever, this pill would urge me forward a tad without me feeling like I would be pushing myself so much. Does that make any sense?

And as you said, "being awake doesn't strengthen the muscles," is so true. Myasthenia Gravis, to me, affects mostly my physical strength and this pill affects my mental state. Maybe the pill uplifts my mental state so I can perhaps feel a little stronger physically--mind over matter.

Anyway, I think I will save the pills for social types of gathering---talking, smiling, eating, etc. I think the pills will make things more pleasant

Thanks again for your input.
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Cindy
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So Gabe, with the holidays coming up and all I will probably use the Provigil. I am retired now so don't have to do this and that. I can rest all I want to and boy do I:) Thank you again for your input.

Yes Lois it is something to keep in mind. You ought to ask your GP for some Provigil. You might be like me and need a little pick me up around the holidays!

Cindy,
I am glad you were able to try it. I ususally take it through the week and skip on weekends - I am still working full-time and found myself falling asleep at my desk by 10 am. On weekends I just doze between things!
Gabe

Again Gabe, glad that Provigil works for you and thanks for your input.

Hi Cindy, I was wondering if you could explain the type of energy you get when you take provigil. Is it like a caffene? Do you feel shakey or hyper?

I sometimes feel that taking the mestinon gives me the stanima, then I think that I can do more and well end up doing to much. Its such a learning curve, always having to pace yourself. :D Thanks, Patricia

Patricia I have only taken 1 Provigil, so maybe I am not really qualified to say how I felt. Anyway, I did feel that it gave me the mental (not physical) edge to move forward somewhat, unlike when I have not taken one. For example, when I take Mestinon it is usually good for about 2 to 3 hours and then I need to rest and I don't feel mentally or physically strong to keep going. If I try and push I only feel worse and sometimes out of breath and achy in the area right below my breasts (diaphragm?) where I have been trying to sit upright and really need to just lay down. Back, neck and eye muscles can ache too...... Sometimes I use a heatpad on my diaphragm or back area when I am laying down and resting.

When I took the 1 Provigil I did not feel shaky, maybe a little hyper, but not a nervous or bad type of feeling.

Yes, I have found that "pacing" myself is the key. I have by my bed a paper that I write down the time I take my Mestinon. (It helps me to keep on schedule and not overdose like I did one time--yuck.) I usually take 1 1/2 pills at least every 3 hours. I usually lay down about every 2-3 hours for about 30 minutes to 60 minutes. Yes, I REST ALOT! I have recently retired and have found out I feel better now that I am home and can lay down often. I try and schedule any type of activity right after a nap and at the beginning of a new dose of Mestinon. Then I am good (most the time) for at least 2 hours before I need to rest again.

My life has become very simple that I am now home. I try and be more appreciative of the little things of life. I try not worrying about how dirty my house is, etc. My husband helps alot. He does all the shopping, cooking, cleaning, etc. I help when I feel I am able. Retirement is one of the best things that has happened to me most recently, along with a grand-daughter.

Did not mean to ramble, but you caught me off guard:) I hope I answered your question.

Thanks Cindy
 

I think I'll stay away from that for now. I really am a hyper-type person and the mestinon sometimes gets me into trouble. I totally get the need to rest. Thats been the hardest part for me. I use to be very active, hiking and out door physical stuff. I so wish to be able to do those things again. This has been the most frustrating part, because the drs seem to think that it no big deal.

Its great that you finally got to retire. And I understand the simple life. My husband and I moved to the bush for a year. Totally isolated, it was stress free. Just a little hard when one of us needed to see a dr, or get grocerys. I really loved it, and wish that we still lived there sometimes.

Maybe someday they will come up with a medicine that will help more. The mestinon is a love, hate thing, least for me it is. :D

Take care, Patricia :)

Patricia I understand you not wanting to take Provigil if you are hyper. And that Mestinon can be tricky at times. I understand about being frustrated when you can't do the things you used to. I, myself, used to be very active, also. Moving to the bush, how adventurous! Yes, it would be nice if they developed a medicine that could help us better deal with this Myasthenia stuff. In the meantime, I guess we will have to keep on plugging along:o You take care Patricia and I will do the same:)

Hi,
I think Provigil is an individual thing. For example, I've heard of some people who can only take one 100mg a day, and that keeps them awake all day, and even some of them have to take 50mg.
And then there's me....:rolleyes: I take 200mg in the morning, and 100mg in mid afternoon, and fall into bed like a rock at 10pm. It does Not make me gittery like coffee does, thank goodness, cause that would be horrible. I drink coffee,and the mixture still doesn't make me gittery, and I'm very caffiene sensitive. Again, we're all snowflakes, same disease, different reactions. It's so weird.
Provigil is often prescribed for MS patients too. For those who only take it once in a while, that's great, but I'll tell you, I can't go with out it, or I'd probably be in a coma. It has made a huge difference in my life.

Yes, GodDreamer2007 I agree with you that we are all snowflakes. And I am happy to hear that Provigil works so well for you. :)

GodDreamer2007,

I took 1 Provigil on Thanksgiving Day and felt pretty attentive all day. I was able to actually socialize for 3 hours straight and did not feel worn out. However, it was hard to get to sleep and only got about 3 hours of sleep. I felt worn out the next day and rested alot. My face muscles were worn out. I think I did alot of talking and smiling because I felt so good! I did not take another Provigil this next day.

Anyways, I am trying to take Provigil on special type occasion days. I will probably take another one on Christmas, or better yet a 1/2. Hopefully the following day will not feel like I have crashed. Perhaps I need to wean off the next day by taking 1/4?? And then the next 1/8???????????

I need your advice. Have you ever forgot to take one and felt worn out? Do you think you need to wean off of this type of medicine, even if you only take it for a day?

It seems like a pretty powerful type of drug, and they don't even know exactly how it works? That kind of scares me. Does it scare you? I think it is pretty new, right? As such, there have not been any real long term type of studies to see what is does to our bodies, right?

Thank you for any advice you may have.

Cindy

Lizzie thanks for your response. The last few days I have been taking 1/2 Provigil tablet and feel much better, more energy to do things. Haven't felt that crashing/worn out feeling like before. I almost feel normal or like I used to. I will read up on it at Provigil.com. I am so glad it works so well for you.
Hope it will continue to work for me, too. Thanks again Lizzie.

I have been trying to get my neuro to prescribe me the provigil for a while now..but my insurance comp. will not accept it. so they gave me Amantadine...I have had provigil in the past and if it makes you too hyper you can always take 1/2 at a time to see if it helps...The Amantadine doesn't do much for me. I work nights and wind up sleeping most of the day away and then going to work.. Good luck to you linda

Good morning
 

Good morning Linda, Lizzie, and other MGers,

Well, I have been feeling pretty good lately. I have gotten used to taking 1Provigil daily the last couple of weeks. My ability to function--stay awake and do things--has increased greatly due to Provigil. I can actually stay alert/awake for more than 2-3 hours at a time---maybe 4-5 hours. I hope this continues and I don't have to keep increasing the Provigil like I did with Mestinon. Now I can take my Mestinon every 4-5 hours instead of always every 3 hours.

With this new ability to stay awake/alert I have been Christmas shopping and really enjoying it! I actually almost feel like normal for a few hours!

I hope everyone is doing fine these days.

so glad that the provigil is working so well for you....i go back to the neurologist on thursday and am going to beg this time for it,even if i have to pay for it myself....i have been falling alot due to vertigo and my sleep attacks have been bad.. slept for 14 hrs straight ... no recolection of anything..didn't even hear phone ringing right next to me,alarm clock rining very loudly right by my ear or steve comiing home banging around loudly as usual..went to see the ENT today and he said all looked fine but set up a series of more tests for next week...just wish i could walk a straight line and stay awake for the holidays....doing the best i can these days with so much pain and depression....wishing all and little less pain anad stress for the new year....moonstar

yea!!!
 

went to the nerologist today and she had some free-samples of provigil to give to me...so maybe for the next couple of weeks i may be able to stay awake during the day to get things done and maybe try to have some fun?? well at least i will be awake....linda

Good luck Moonstar. I think you are going to enjoy yourself.

hi cindy....can't say i am enjoying myself yet but..... i did start the provigil 100 mgs. yesterday i still was very sleepy. couldn't hold my head up..sleeping sitting up...crazy..today i felt the same way so i took another 50 mgs and seemed to do thr trick..i am still in pain as my pain medds are not working great today but i am awake....it is very strange how one day the meds work well and then another they do nothing for me....at least the provigil seems to be working.. hope things are better for you today...linda

Linda, I understand what you said, "it is very strange how one day the meds work well and then another they do nothing for me." This happens to me also. With the Provigil I still have to rest but am wakeful for 3-4 hours at a time more so than just the 2-3 hours. Also, I drink coffee all day and it helps me to keep awake. When I feel achey, usually my ribcage area, I rest and use a heat pad. I also take extra strength tylenol once in awhile. REST is the key for me. I have also noticed with Provigil I do not always have to take my 1 1/2 tablets of Mestinon every 3 hours. I can stretch it to sometimes 5 or 6 hours. I also notice that I may have to take a 1/2 tab more of the Provigil. I only take 1 now.

Hang in there lady, every day is a new day! Best wishes.

Cindy