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I was put on Provigil recently by my doctor to help with fatigue, which has been one of my most debilitating symptoms. I have been taking it for about five days now and I feel great; I have much more energy during the day and I don't need to nap as much. This drug, coupled with Proamatine, salt tablets, and tons of fluids, seems to be helping immensely. I would love to hear what others have to say about this drug and hear what your experiences with it have been. Thanks.

Hope you all are feeling well!

Best Wishes!

~Meghan :)

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Hi, Meghan!

I just recently started taking this drug, about 3 weeks ago, and find it to be a great help in keeping my energy levels up. I was getting so bad during the day at work, that I could barely function. My productivity has improved and I feel much better. I still have to get down to what the root cause of the fatigue is (I was diagnosed with POTS over 2 years ago, but the feeling of immense fatigue started only a few months ago). At least now, though, I can stay awake!

I am glad to hear that you are having a good experience with Provigil, too!

Stacey

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I am really interested in this as well, I take just florinef, I'm off to see my proffesor in about a month, and i am going to ask him about this.

what kind of medication is this??

My brain fog is terrible at the moment, it has been geting worse over the last couple of months (i have also been diagnosed for about two years)

I wonder if as we become more "used" to the symptoms and down days that we end up pushing ourseleves harder and this contributes to the increase in brain fog, as without realising it we are exhasuted, with all those extra heart beats....

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I looked into it online and it said that it is actually a drug for narcolepsy. But I guess that it can fight fatigue as well. Those of you who are taking it, were you having problems just falling asleep in the middle of the day or was it more of just a fatigued feeling?

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I'd like to know more about the symptoms that Provigil is supposed to help relieve. I have fatigue, too, but I also fall asleep during the day. I just get so tired that I have to put my head down and sleep for a few minutes. Deb

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I was told that the drug was developed as a treatment for narcolepsy, but that it will help symptoms of excessive fatigue. I was put on Provigil for fatigue. At times, I did have those moments where I just couldn't keep my eyes open and had to put down my head, although I didn't necessarily fall asleep. Mostly, I found myself getting up from my desk at work just to walk around, or drinking lots of hot tea to keep myself awake. I would push through to the end of the day and then just collapse when I got home.

I take 100mg each morning, but my doctor said if I needed it, I could take another in the afternoon. I haven't needed it. It doesn't affect going to sleep at night, either. Things are a lot clearer for me now during the day (the less tired I feel, the less "brain fog" there is). I don't have that overwhelming sense of fatigue anymore. I get much more work done, am able to concentrate a lot better, and have a lot more energy (even at the end of the day). I haven't noticed any side effects, and it doesn't interact with my other meds. So, for me, it has been a wonderful treatment option.

I hope that this helps some,

Stacey

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It doesn't affect going to sleep at night, either.  Things are a lot clearer for me now during the day (the less tired I feel, the less "brain fog" there is).  I don't have that overwhelming sense of fatigue anymore.  I get much more work done, am able to concentrate a lot better, and have a lot more energy (even at the end of the day).  I haven't noticed any side effects, and it doesn't interact with my other meds. So, for me, it has been a wonderful treatment option.

I agree with all this. Provigil is an anti-narolepsy drug, but it can help with fatigue and daytime tiredness also, which is what I take it for. I take it in the morning, and do not find that I have trouble sleeping at night. Also, if I want to take a nap during the day I don't have trouble falling asleep then either. However, the Provigil has made me feel so much more awake during the day that sometimes I don't have to nap, which is great.

Has anyone had any negative experiences with this drug? My own experience and the posts so far seem to be positive, but I would like to hear other opinions too.

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Dr. Grubb just prescribed Provigil for my husband and the fatigue associated with his NCS. He suggested that he try 50 mg (1/2 pill) in the morning. He also said that some people have to take a booster dose (1/2 dose) around 1pm in the afternoon but to never take it later than that or you may experience trouble sleeping. Apparently the military is the largest customer for this drug. Here's the website: http://www.provigil.com/

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Hello Everyone

The idea that there is something out there that may stop my brain fog is heaven. I have been suffering very badly with it, and it is lasting for longer periods of time. I plan to do some research a little later this afternoon.

I try to remain as strong as I can, but I am fed up with being limited in so much of what I do.

I plan to ask for a 48 hour heart monitor/BP to be done whilst I am on my medication, to see what I am going through in my daily life - to see if I can work out the triggers for the brain fog.

When I have had the monitors in the past I have been off meds, and asked to carry out controlled tests to see the effect. As I was off my meds, I was at home and resting.

Maybe I should invest in my own monitor, I am starting to realise that whilst my professor is good, he doesn't understand what it's like to feel exhausted, to feel your heart leap out of your chest, not to be able to stand up right etc....

Sorry I completely hijacked this discussion, into a general moan - just had a realisation moment last night :lol:

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I tried Provigil and it made me feel kinda "antsy", someone else said like a few shots of espresso - this is how I felt.

I didn't like the feeling so I stopped taking it.

I think it's GREAT that it's helping some of you guys!

Lisa

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Provigil is definitely positive for some; and longer-lasting than coffee. But I don't think it has any vasoconstricting effects like traditional stimulants, which can be a plus for POTS people. Caffeine causes periphereal vasodilation, but central constriction, which accounts for its lessening of OT symptoms. I took the amphetamine preparation Adderall for a while, until I began having panic attacks; now that those are behind me (due to diet changes), I'm going to try Adderall again. It was a major help for both OT and the fatigue. I have an appointment on the 22nd.

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  • 2 weeks later...

I am going to the dr and want to ask him about starting on Provigil, but I am not sure what to say. When you guys got it prescribed, did you say that it was for fatigue? Also do you find that it helps with the brain fog. Mine is horrible today. I hope its bad tomorrow too so my dr can see.

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I tried Provigil but it didn't really do anything for me. The doctor now has me on Cylert (Pemoline). It is normally used for children with ADHD, but in adults it works as a nervous system stimulant. I have noticed some improvement. I started out taking one 37.5mg in the morning. Now he has me on one in the morning and one in the afternoon. The first week was great, but now I feel tireder than before. Maybe I'm getting too much. I'm gonna try for a while and see how it goes. That is the only medication I am on except for my thyroid medication (Synthroid). Fatigue is my worse symptom.

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guess i may be only one with negative. my hubby has narcolepsy and developed a drug induced hepatitis with one dose! :) he was sick for 6 weeks and had to have blood tests every couple of months for 1 year. so i just recommend that you get periodic lft's with it, but am glad it is helping so many people. my doc discussed it with me but decided against it as i am so sensitive to everything. i fall asleep all the time especially in the afternoon and early eves. then wake up with hanover feeling. kind of gross so i try really hard to stay awake. morgan

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  • 2 months later...

Hi Meghan,

I took Provigil for about 6 months and it did help...I was able to function yet I felt very focussed but 'drug.' I switch to Symmetrel which was also helpful but I develped hives on my scalp.

After I was referred to Dr. Grubb...put on Adderall XR and Cerefolin and the combo has been great for me. Also take b-12...for brain fog.

I am glad the Provigil works for you! Doesn't it feel great to have longer days?!?

Karen 'lorrell'

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Although Provigil was helping me a lot with fatigue, I recently stopping taking it because I found it made me really sick to my stomach. I am taking a lot of other meds too, so at first I thought it could be something else, but I always noticed that I got a really bad stomachache about 20-30 minutes after taking the Provigil. Has anyone else had this side effect? It's too bad that this happened, because it was really helping me feel more energized!

~ Meghan :)

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Answering your 2 questions.

I was diagnosis initially with CFS and was using treatment protcols from Dr. Cheney and Dr. Teitlebaum (think I spelled his name incorrectly) I researched and took the information to my family doctor and he prescribed it. It was the beginning of my body cooperating! My brain fog ended...my energy level was better...but still not great...the more significiant relief was the brain fog.

I have tried going for 3 days without the shot and I notice a difference in stamina nd cognitive clarity.

I take a intramuscular daily shot ..1ml..I did not have a deficiency..but was a'treatment plan.' My insurance company does cover it...at that time I was diagnosed by the Univ of Michigan's CFS so that was probably what it was billed under.

Since I am doing well and it has been over 9 months...I may try to switch to a nasal type b-12...I have 'heard' it is as effective but I didn't want to mess with success...I will explore it. The shots into the muscle are not pleasant but since it helps so much I am willing to do whatever it takes.

Again, I think once a patient is doing well it might be worth trying the nasal or another option. At the time, I was in pretty bad shape...unable to recall words, remember someone's name that have known for years...I wasn't able to comprehend what I was reading....a shot was worth it!

Since I have been placed on other meds and the combo is currently working for me.

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Hi Meghan,

What a bummer....at the time I was taking Provigil I had IBS so I don't know if the Provigil or not. I am not having IBS problems now.

Has your doctor talked about Adderall XR? Dr. Grubb (saw him 3 weeks ago) spoke highly of the sucess some people are having on it. I take a very small dose and it give me a fully energized day...and I have no 'crash' and best of all I don't feel 'drug.' I feel 'complete.' Just a thought...know everybody's body is different..but just a thought.

Take care!

Karen 'Lorrell'

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  • 4 months later...

Hi:

I have been taking provigil for about a year. I definitely helps with fatigue. Over the last year I have had to bump up my dosage....I don't know if that means that my body is getting too used to it or if I'm just getting worse.

I can especially vouch for it's effectiveness based on a couple of times when I have had pharmacy screw ups and couldn't take it for a day. I was an absolute mess!! I could barely function. My fatigue was immense and my brain fog was completely debilitating.

I currently take provigil, cerefolin (for brain fog), MagOX 400 (for nervous system stimulation), and lexapro. The lexapro doesn't seem to do a thing. I feel the provigil is most beneficial for me.

However, I am still symptomatic. Dr. Grubb feels that I am definitely getting worse. (I've had POTS all my life. I am 38.) BUT, the provigil definitely helps my symptoms and quality of life.

Kristen

I was put on Provigil recently by my doctor to help with fatigue, which has been one of my most debilitating symptoms. I have been taking it for about five days now and I feel great; I have much more energy during the day and I don't need to nap as much. This drug, coupled with Proamatine, salt tablets, and tons of fluids, seems to be helping immensely. I would love to hear what others have to say about this drug and hear what your experiences with it have been. Thanks.

Hope you all are feeling well!

Best Wishes!

~Meghan :)

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