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667078 tn?1316000935

Modafinil provigil

Anyone had any luck with this. I am just so fatigued. I wake up tired. I read in the last study it was the same as the placebo. I am desperate. I see my doctor tommorrow.

Alex

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Avatar universal
Regarding Modafinil- I've been taking it for the past few years- started out with 100, up to 200, now I take 300 to 400 per day. I am unable to function w/out it. I'm a single mom w/ 4 children, and like everyone else- 2 mortgages! This year my insurance company denied it, and I had to do a sleep study test. This was to see if I had sleep apnea, which I do. So now they will cover it, but even with my insurance, it is over 100 dollars a month! I was just dx'ed w/ MS 2 weeks ago, so that may be why I had to do the sleep study. I do get anxiety, but I take clonipine for that anyway. My MD told me when he prescribed it that "the good thing about it is that you can still sleep while you're on it." Good luck to you.
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667078 tn?1316000935
I am psyched about the trip.

Alex
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Avatar universal
I hope the Nuvigil works for you! And I hope that the macrocytosis is from the chemo and not a leukemia.

Glad to hear that the red blood cells are getting bigger!

Your trip must be soon so I hope that you have a wonderful time.

Corrie
Helpful - 0
667078 tn?1316000935
My hemoglobin is 12 which is up. I too have had two transfusions. Now I have large red cells which is your body's way of fighting anemia. I am taking Folic acid and B12. The doctor says I do not need a transfusion.

I tried Ritalin and climbed the walls. I tried it twice. I also did Adderall. I just started the Nuvigil. My husband says I have more energy. I am so tired when I wake up. I could sleep past noon.

Alex
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710547 tn?1295446030
Hi - it's been a long long time since I've been around.  I've been so debilitated by fatigue that I thought I'd chime in.  I was put on Provigil years ago and found that at first I thought it helped - anything helped, due to being so paralyzed with fatigue.  However, the way it effects me, turned out to be counterproductive.  I wouldn't really get any energy until very late in the day - then couldn't sleep at night.  I tried several other drugs and finally settled on Methylphenidate - Ritalin.  I like it the best.  It is mild, doesn't cause anxiety or gittery feelings, and begins working right away and then slowly wears off so I can sleep at night.  I highly recommend it.  Of course, we're all different, so if one doesn't work - try another.

I've also had trouble with severe anemia.  I've had several transfusions over the years for hemoglobin in the upper 7s and 8s.  It's frequently 10 and under.  I've had transfusions of ferritin which has helped quite a bit.  Although it definitely causes fatigue, it's kind of a different fatigue than the ms fatigue.  But, until you've experienced them both several times, its hard to distinguish them.  So, check out your blood work, but also try some of the meds.  And don't get discouraged if one doesn't work for you.  There are several to try and we have to always keep in mind how different we all are!  Blessings to everyone
Helpful - 0
667078 tn?1316000935
I talked to the oncologist she said it takes months off chemo to go back to normal from macrocytosis. It has been two months. What scares me more is this last chemo can cause a leukemia and this is one of the symptoms ismacrocytosis.

If I get the Nuvigil before the trip I will try it. Otherwise I will take my B12 and Folic Acid and hope for the best. I just do not want to ruin my trip to Europe worrying about my health. If I had not asked for blood work I would not even know.

Turns out swimming an hour every day keeps my red blood cells bigger because of the oxygen. So I have to limit my swimming. Who would have thought I was exercising too much.

I am still in a very good mood. So many last minute details. Getting prozac for my cat and all the other details. The cat has anxiety! I guess they are like people. Anxiety is very real and can lead to all kinds of health issues like Cystitis in cats.Thanks for the advice.

Alex
Helpful - 0
382218 tn?1341181487
I previously tried Modafinil with no benefit but decided to try it again today and a 200 mg dose really seems to be making a difference. I'm hopeful I'll continue to get this benefit as my fatigue has been severe lately. I literally fell asleep in the middle of getting a filling at the dentist last week.

Alex, if your fatigue is caused by anemia I wonder how useful the Modafinil would be for you. I think if it were me I would seek to correct that problem first. ie: B12, iron, transfusion, etc and only after that consider Modafinil if the fatigue still hasn't improved.
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Avatar universal
Well, that would definitely explain the crazy fatigue you are having. It would be nice to get the transfusion before your trip.

I know Modafinil is used for Narcolepsy but they really want a sleep study to take it for MS? That seems unfair to slow the process down when it is such a common medication for MS and not just those with sleep disorders.

Corrie
Helpful - 0
667078 tn?1316000935
I am having trouble getting Modafinil. My insurance wants a sleep study. I also found out I Macrocytosis.  Could be the chemo or my liver.I am trying Folic Acid and B12. I probably need a blood transfusion. I do not know if I have time before my trip. It can be caused by your body fighting anemia or bone marrow. It explains why I am so tired.

I did not understand why I am tired when I exercise almost every day.

Alex
Helpful - 0
5509293 tn?1428531475
How did your appointment go, Alex? Did your pcp suggest anything for fatigue? I am surprised that no-one else has reported a positive experience with modafinil.
Helpful - 0
5112396 tn?1378017983
I honestly had to look on the app I used to keep track of my meds to ever tell whether I'd taken it or not. For me? Waste of money. More help from coffee!

That being said, if I was just starting to look for something to help, I'd still give it a try regardless of the anecdotes of others. They may mean zero for your particular reaction.

Personally, my pharmaceutical search may end here, at least for a while. The 'bigger guns' come with other possibilities that tip the risk-benefit ratio in a way I'm not prepared to deal with (increased anxiety, potential for addiction).
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5509293 tn?1428531475
Hi Alex,

I am sorry you are feeling so fatigued. It's rotten. Here is my experience.

The modafinil not only works, but it's a complete lifesaver for me. I would be in big trouble without it. I started out on 200mg. This was a disaster for me. I am small, and I think the dose was too much. It made me feel as if I was on a train that wouldn't stop and it gave me heart palpitations. This freaked me out and I stopped immediately. Neuro recommended trying 100mg.

I have been taking this 100mg regularly now and feel as if I am getting my life back together after what feels like a bunch of black holes where I was so fatigued I let things slide. I don't crash from fatigue any more, I focus better because I am not so exhausted, I feel better because I am more productive. I know when the effect has worn off. I get the "I can't move from this chair syndrome."

I'd say it's worth a try for you. You can pm me if you like and I can go into more details about what I was told about it etc.

You mentioned recently that you are swimming an hour a day. Is this new? If it is, then there could maybe be the possibility that this isn't helping a neurological fatigue, or perhaps you need different nutrition after these workouts? Probably not, but worth a thought.

I hope that helps. Fatigue is my biggest hurdle right now, and I just finally feel that I have it under control.

Take care, and good luck with the doc.
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Avatar universal
hi Alex, it didn't work for me either.  Like Barb I could nap within 2 hours of taking it.

Rather than try something like Adderall or Ritalin my physiatrist has me trying Fampyra (Ampyra in the U.S.).

It is for mobility issues but off label can help with a lot of MS symptoms including fatigue.

Like most MS drugs it works for less than half.

Good luck with your appointment,

Corrie
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Avatar universal
Hi Alex
I took a nap on provigil/modafanil. So it did nothing for me. I've read others here that have taken adderall for fatique with good results. Adderall will be my next step as I've already talked to the doc about it. My fatigue has been better since I stopped working.
Good your going to the doc tomorrow so u can talk over your options. Let us know how it goes.
Regards, barb
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