MODAFINIL (provigil)

Discussion in 'Fibromyalgia Main Forum' started by survivor13, Jan 1, 2007.

  1. survivor13

    survivor13 New Member

    Hi there everyone

    I saw a research article in the FM mag bout twelve months ago on a trial drug called MODAFINIL. the research test was only done on 4 patient subject but were so encouraging in there results that i tOok the article to my GP and asked her if i could try it. I am one of the lucky few in the fact that i have a fantastic GP and that she more or less trusts my judgement where my treatment and management on FMS is concerned. She had reservations but prescribed me the drug for a 2 week trial period and i had to phone her every day to conduct a progress report as the findings at that time were inconclusive. I am happy to say that the drug has made a huge diference to my life,it is usually prescribed to folk with sleeping sickness as it enables them to work or function properley as it is basically amphetamine!! So where we are concerned as fibromyalgics it combats the fatigue so in turn if you dont feel the fatigue the pain is far less than if you are in pain and absoluteley shattered!! Tiredness makes everything hurt that little bit more dont you think? A nyway, after 12 months or so i am happy to say that this test subject is doing ok, no it aint a cure,no it aint a miracle but it certaily does help you to maintain a more 'normal' level of physical activity than you have had in a long while. The down side is that it costs soooo much and y0u have to have support from your GP practice to obtain this as a regular prescription,average cost after initail build up dosage is £60 er month which does nt sound a lot now i now of no other person who like me has been given this drug on a regular precription, everyone who has tried has failed i am so sad to report as a lot of practises cannot stand the cost of it. So hey,thats all i can say,it may not suit all but it certainly does suit me and has helped me considerably. Good luck and please leave feedback on this recomendation if you manage to gain funding to try it and if you try and it makes a difference to your life. god bless and happy and relatively pain free new year to us all xxxxx
  2. Slayadragon

    Slayadragon New Member

    I'm very happy this drug has worked for you on an extended basis.

    The few scattered days that I took this drug were the first times that I've felt totally normal since I got sick. This was nothing like the experience I had with Ritalin or Strattera or other such drugs, which felt false. This felt perfectly real.

    I had tons of energy and ambition, got all kinds of work done, survived a long airport delay and a stressful ride without being thrown off my stride at all. I used to be like that all the time.

    i got great sleep too.

    But then when I woke up, I went into crashes and couldn't get out of bed for more than a couple minutes for 3 days. (Usually these days I'm at a 6-7.)

    My psychopharmacologist, bless his heart, was determined after this report that he was going to cure me with that drug. But none of his suggestions worked.

    if I took it two or more days in a row, i would start to feel delerious, like I had been up for 48 hours and had a lot of coffee to keep me going. Then when I stopped taking it, the crash was even bigger.

    A smaller dose (1/2, 1/4, 1/8 of a pill) produced less dramatic results followed by less severe (but still substantial) crashes.

    When I tried to take a very small amount (lick the pill at first was his literal suggestion) and then work my way up, I gradually got worse and worse until I had to stop.

    It was like doing my usual push/crash thing, except without my being able to control it (the energy just took over) and a turbocharged version.

    It was helpful in one very important way though: it made me remember what it was like to be well, and thus much more determined to get there the "slow" way.

    I tend to think it might be more useful for FM patients.

    it might also be useful if I were at a higher level of functioning (maybe at 90%) and just wanted a little short-term boost for extra concentration at a particular moment. We shall see.

    At any rate, it could be a really cool drug under the right circumstances. I'm very happy to hear that you've been able to use it.

    P.S. This is the one drug that my insurance company has asked me to get a special doctor's approval for. I don't know why, since it's a lot less expensive than other stuff I've taken. My doctor would have filled out the form and I'm sure it would have been approved, but insurance companies certainly are hesitant about it.
  3. survivor13

    survivor13 New Member

    hey lisa
    hope lisa is ya name,soz if it aint. i was soo excited to be able to post my good results while using MODAFINIL. I am sorry to my heart that it did nt work for you as it has worked for me, i really and truly wish it had. I th0ught of it as a wonder drug and really thought i would help everyone in the same situation as me and im devastated that it has nt worked for you, i really am. I am at a loss now as to what to say or suggest, really has kocked my 'common sense' outlook to my illness outa me hun and positive attitude for all new things that could help. please keep in touch lisa as i feel i have let you down now and given loadsa folk false hope with the one thing that has worked for me by learing that it did nt work for you. im so sorry, iv learned my lesson and will word my recomendations in future in a totally different way hun,i promise xxx hope you are not too bad at present and if you need support at any time then feel free to e mail me personally. I wish you a happy new year and a relatively painfree one xxxxxxxxxxxxxxxxxxxx soz again xxxxxxxxxx
    please leave message feedback for me if u can, where do you live by the way? im in Staffordshire xxxxxxx[This Message was Edited on 01/01/2007]
  4. Slayadragon

    Slayadragon New Member

    No, it's always great to hear other people's success stories even if they don't work for me. It gives me hope that there is something else out there (or that there will be something) that will help me too.

    Click on my name on the left side of my posts and you can find out all about me. :)
  5. springrose22

    springrose22 New Member

    I think the reason Lisapetrison can't take this drug and you can is that she has CFS and you have Fibro. Am I right that you have Fibro and not CFS? I checked your bio but it didn't say. People with CFS should avoid stimulants like this because although it may make them feel "normal" for a bit, they will ultimately crash big time. Fibro people seem to do better with activity than CFS people. What do you think, Lisa? Marie
  6. survivor13

    survivor13 New Member

    yeah you are spot on springrose, i just hope folk same as me with 2nd stage FMS can have a go at this treatment n hope it gives them sum releif,the cost shud nt come in to it at all and really makes me cross,thanks for your wise words hun xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  7. survivor13

    survivor13 New Member

    silly observation but u r 6 days older than me.....see told ya was silly xxxxxxxxxxxxxxxxx
  8. Slayadragon

    Slayadragon New Member

    I don't know a lot about fibro, but I tend to think Provigil might be more helpful for fibro sufferers than CFS ones. Like I said, my belief is that it could be a great drug if your body can tolerate it.

    Provigil was originally used on fighter pilots during the first gulf war, btw. It helped to keep them alert. Too bad I didn't have it when I was a Ph.D. student. I was on hyperdrive then (doing superintellectual work for like 100 hours a week), but just think how much I could have accomplished with a bit of help!

    (This is a joke, by the way. If I'd done that, I'd be a dead woman by now. The Ph.D. work was part of what contributed to my CFS crash, for sure.)

    Survivor, how long have you been ill?
  9. survivor13

    survivor13 New Member

    hey Lisa
    Iv been ill with FMS and all the other wonderful things that come with it for around 24 years. Since i was 18 ish. Looking back i can pinpoint the onset and the trauma of my nan dying to whom i was very close is my definite trigger.
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  10. mommygee

    mommygee New Member

    I've taken it for 4 months. I feel like it helps me. I was falling asleep at stop lights prior to taking it. Scary!

    It makes birth control pills less effective, my ob/gyn suggested I quit Provigil. She doesn't know anything about the drug and I feel like she doesn't "believe" in CFS. (She's a new doctor for me and I may change if that's her view). I chose the Provigil over BCP.
  11. Kay31

    Kay31 Member

    Hi -

    I resisted taking this for a few months and then decided to give it a try. I've been on it for about a year and it has helped me SO much. Almost feel like a normal human being again.

    Kay
  12. leubie

    leubie New Member

    hey -ive been taking this for about 1 year------------------it works great for me----------------------i do not get the speedy feeling one gets from amphetamines---i dont believe that provigil is a amphetamine/ nor does it work like one either----------------ill have to re-read my literature on this though-----------i can tell when i have not taken it-----------------------when i do ---------------which is evryday(forget or run out sometimes)---------------------i do not speed----------------------i just feel that fatigue lifting-------------------my neuro rx it--------------w/ re-fills---------------------my co-pay is 40 dollars------------------yes it is pricy-------------------the neuro helps me out w/ samples alot------------------------this has been a wonderful med for me!!!!!------------------wish everyone the same----------------------take care------------love to all--------------------laura
  13. nightngale

    nightngale New Member

    My neuro has suggested it. I am on beta blockers for problems with anxiety and racing heart. Does anyone think it would make my heart race? I will check with cardio too. I have been dx with fibro and cfs. But do not have all those "trigger points". Do you have to have those to have fibro?
    [This Message was Edited on 01/02/2007]
  14. TXFMmom

    TXFMmom New Member

    It really is a good drug, for some.

    I asked my sleep doc for it, after I had a sleep test, some years back. He had never heard of it, I HAD TO QUESTION HOW GOOD HE WAS, AS IT WAS MANUFACTURED FOR NARCOLEPTICS.

    At any rate, knowing I was medical, he prescribed it, I took it, could stay awake, but only took it in the morning, as if I took it late, I had trouble getting to sleep.

    The drug is a modified molecule of an amphetamine, where they have removed the part of the molecule which makes them SPEED, and the part which leads to addiction and PARANOIA, and it works to help narcoleptics and we sleep problem people awake, makes us think we have energy, and can help us immensely, without developing dependent, addiction, and ALL THOSE NASTY THINGS LIKE METH PEOPLE DEVELOP.

    It can be a good drug, and the doc started prescribing it and his patients now think he is a God.

    However, like any other drug, THERE WILL BE PEOPLE WHO REACT ABERRANTLY TO IT, AND HAVE SIDE EFFECTS AND BAD THINGS HAPPEN.

    NO DRUG IS WITHOUT PROBLEMS.
  15. robine

    robine New Member

    My name is Robin and I used to write on the FMS Message Board around 7 years ago. When I was writing at that time, it was just a small, disorganized board that wasn't sponsored and didn't have nearly the members you have now. It is wonderful to see that it has grown and that NOW Drs. are recognizing FMS as a real syndrome and not just another woman complaining! I answered this because I am on Provigil and it helps me a lot! I have been very fortunate to get involved with Pain Clinics in the last 6-7 years and the one I go to now (in Birmingham, Al.) has been my saving grace for 5 years. I have a really good relationship with my Dr. and he understands that there is NO reason for any of us to be in constant pain. I have a collapsed vertebra also but he understands me when I say I feel almost like I have a toothache in my legs and arms. I am taking Neurotin 600mg. for restless leg, Avinza 120 mg(long-acting Morphine) in the a.m., Avinza 60mg. in the p.m. and Loritab 10mg. 4 times a day for breakthrough pain. I know this is a lot, but 9 years ago I was an Exec. Chef. I worked on salary, 100 hours a week- all hours on call. I started having the Fibro. and restless leg and felt like I was going crazy. I think I almost was. Then, I hurt my back from years of standing on my feet in a kitchen and working like a man. At that time, I was ignored and patted on the head. I kept up until I was heard--> that took almost more energy than I had. The only thing they wanted to talk to me about was my back. I fond my first pain clinic in Biloxi, Miss. and then when I moved home, to Birmingham, I found another. I feel so badly for all of you that still suffer without the understanding and the medicine to ease your pain. I started back to college at the University of Alabama, Birmingham (U.A.B.) and am finishing my B.A. in teaching. That's why the Provigil has helped me so much. I am able to stay alert during very difficult classes even when I am on my meds. and can stay awake to study.
    Sorry to have taken so much space but I felt like some of you could use some hope and besides, I found friends I still have from that original chat room I used to go to.
    Please feel free to answer me back!
    Robin
  16. survivor13

    survivor13 New Member

    Im so glad that you have been helped as i have with Provigil and you sound like you have had it rough but are coming out the other side,well done you. I too have spinal problems and will have to have surgery for constantly slipping discs and spinal erosion eventually (when im not so terrified of the outcome that is) Nice to hear from you and i wish you happy healthy days
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