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11 Replies
Connie - April 18

Sometimes it is difficult to remember what normal feels like. I just had a great medication appointment with my primary care physician yesterday. I went in to adjust my dose of pain medication, but we also discussed my overwhelming fatigue. He gave me a sample of Provigil to try. I can't believe how alert and "normal" I feel. It doesn't make me feel hyper, just wide awake. So far 100mg seems to be working very well. I thought someone wrote about using this medication a while ago. Are any of you having success with it? Narcolepsy, obstructive sleep apnea/hypopnea syndrome and shift work sleep disorder are treated with Provigil. It isn't supposed to cure the sleep disorders, but may help the sleepiness caused by them. The medication insert says it is not meant to take the place of getting enough sleep. I haven't checked the price, but my physician said it is about $3.00 a pill. If I stay with my current dose, that's 1/2 pill or 100mg a day. It is a controlled substance(CIV).


JJ1 - April 18

Thanks for sharing that. I think my fibrofog and fatigue are the biggest problems with my FMS and anything to relieve that would bring my life almost back to "normal". I have enjoyed a part time schedule at work and have been able to work around these issues of my FMS but now am having to face returning to work full time, at least for the short term, due to the recent loss of key staff at my work. I am not mentally ready for this, but there is no way around it.


JJ1 - April 18

I hit submit before I was done. Connie, was it your rheumatologist who prescribed this?


Connie - April 18

Hi JJ1. It was my primary care physician. I am very fortunate to have someone who listens and works with me on this condition. He is always up to date on the latest medical information too. We had exhausted all avenues on an earlier problem with my fibro. and he went to the source of research and treatment at Oregon Health Sciences University. The physicians there worked with him to find an answer. You might want to google OHSU Fibromyalgia for a "look see" .From time to time they have interesting updates. I know that I am very fortunate to have found my doctor. My original diagnosis was through a rheumatologist, but I decided to stick with my primary care doctor for treatment. Just found out that my insurance requires pre author. for Provigil. When approved, it is required every six months. Once again, it sure pays to be proactive. I could have filled the prescription without going through the process and they might not have reimbursed the charges. My doctor just needs to fax several of my medications previously given treat the fatigue. I hope this helps you.


JJ1 - April 18

Very helpful, thanks. My GP is new and since I am already being seen by a rheumatologist for the FMS I haven't discussed my FMS symptoms in much detail with her (except to let her know I have it and am being seen by another doc for it). I don't see my rheum. again for a few months but may call to put a bug in her ear about this and see what she says. I would like to hear if others have tried it, too.


larry - April 19

BE VERY, VERY CAREFUL WITH PROVIGIL. This is nothing new, it has been around forever under different names that got turned down by the FDA. It is the latest "pleasure drug". Like Riatlin and Mirapex, it addresses the lack of dopamine in your body that causes ADHD, Parkinson's and Narcaleopsy. I would suggest finding a doctor that knows how to balance your neuro-hormones and glands with natural hormonesand supplements so that ALL of your glands are working in sync not just the hypothalmus that Provigil addresses. If you try to address one gland (hypothalmus) without addressing the other glands (Pitutary, thyroid, adrenals) you will still be sick with the HPT disconnect that is just one of the root causes of Fibro. I have had Provigil in my possession for months and refuse to take it as it is just another pharmaceutical band-aid. (It can be prescribed in phase one at the F&F center where only the symptoms are treated to help stabilize patients, it is only a band-aid in step 1.) There are other safer ways to get your body to produce more dopamine, however you will still need to address the other glands in your body's "circuit" to get your circuit repaired and functioning normally again.


larry - April 19

From the website".....
('Provigil', 'Alertec', 'Vigicer', 'Modalert', etc) is a memory-improving and mood-brightening psychostimulant. It enhances wakefulness and vigilance, but its pharmacological profile is notably different from the amphetamines, methylphenidate (Ritalin) or cocaine. Modafinil is less likely to cause jitteriness, anxiety, or excess locomotor activity - or lead to a hypersomnolent 'rebound effect' - than traditional stimulants. Subjectively, it feels smoother and cleaner than the amphetamines too. It may even be anxiolytic. The normal elimination half-life of modafinil in humans is between 12 - 15 hours. So it's worth fine-tuning one's dosage schedule accordingly.

Current research suggests modafinil, like its older and better-tested analogue adrafinil, is a safe, effective and well-tolerated agent. It is long-acting and doesn't tend to cause peripheral sympathetic stimulation. Yet its CNS action isn't fully understood. Modafinil induces wakefulness in part by its action in the anterior hypothalamus. Its dopamine-releasing action in the nucleus accumbens is weak and dose-dependent; the likelihood of a euphoric response ('abuse potential'), dose-escalation and tolerance is thus apparently small. Modafinil-induced alertness is partially antagonised by the endogenous cannabinoid neurotransmitter anandamide. Modafinil has central alpha 1-adrenergic agonist effects i.e. it directly stimulates the receptors. Modafinil inhibits the reuptake of noradrenaline by the noradrenergic terminals on sleep-promoting neurons of ventrolateral preoptic nucleus (VLPO). More significant, perhaps, is its ability to increase excitatory glutamatergic transmission. This reduces local GABAergic transmission, thereby diminishing GABA(A) receptor signalling on the mesolimbic dopamine terminals.

Modafinil is proving clinically useful in the treatment of narcolepsy, a neurological disorder marked by uncontrollable attacks of daytime sleepiness. Narcolepsy is caused by dysfunction of a family of wakefulness-promoting and sleep-suppressing peptides, the orexins. Orexin neurons are activated by modafinil. Orexinergic neurons are found exclusively in the lateral hypothalamic area. Their activation is associated with enhanced pleasure-seeking and motivation as well as arousal. Orexinergic fibers project to the entire central nervous system. Genetically modified orexin-knockout animals offer a model of human narcolepsy. Narcoleptics suffer profound disturbances in normal sleeping patterns and variable degrees of depression. These symptoms can be reversed with modafinil. Selective orexin receptor agonists of the future may prove useful both to narcoleptics and the population at large.

Experimentally, modafinil is also used in the treatment of Alzheimer's disease, depression, attention-deficit disorder (ADHD), myotonic dystrophy, multiple sclerosis-induced fatigue, post-anaesthesia grogginess, cognitive impairment in schizophrenia, spasticity associated with cerebral palsy, age-related memory decline, idiopathic hypersomnia, methamphetamine ('Ice') abuse, apathy in the elderly, jet-lag, fatigue in Charcot-Marie-Tooth Disease (CMT), and everyday cat-napping. There is tentative evidence that modafinil may be neuroprotective against the "dopamine-deficiency disorder" Parkinson's disease. Depressives who feel sleepy and fatigued on SSRIs can augment their regimen with modafinil. In September 2003, an advisory panel to the FDA endorsed its use for treating shift work sleep disorder and obstructive sleep apnea.

The US military are interested in modafinil too. Modafinil was reportedly used by Allied combat soldiers in both Gulf Wars, though this seems unlikely to feature prominently in its future promotional literature.

Modafanil is marketed as 'Alertec' in Canada - and over the Net. 'Alertec' is less expensive than 'Provigil'. Cheap generic modafinil has been available since 2006. But Cephalon is vigorously litigating to defend its patents.

In August 2006 Cephalon unexpectedly received a 'non-approvable' letter from the FDA for modafinil tablets branded as Sparlon. Taken in this guise, modafinil was intended for the treatment of so-called attention-deficit/hyperactivity disorder (ADHD) in children and adolescents. The FDA's rejection of modafinil/Sparlon for ADHD was based on a single adverse incident during clinical trials. One child developed a rash suggestive of Stevens-Johnson syndrome - a serious hypersensitivity complex affecting the skin and mucous membranes. There is no evidence that Stevens-Johnson syndrome is more common in adult modafinil users. The physician who diagnosed SJS in the affected 10 year old later recanted the diagnosis. Meanwhile, millions of lively American school students controversially diagnosed with ADHD continue to be prescribed toxic amphetamine-based products instead.

Modafinil is used experimentally in the treatment of "atypical" depression. Atypical depression is marked by hypersomnia, hyperphagia [over-eating], low energy, and rejection-sensitivity. The syndrome is actually quite common. The results of preliminary studies have been encouraging, but large-scale trials are needed.

In March 2005, Cephalon filed a New Drug Application (NDA) with the FDA for 'Nuvigil' (r-modafinil, armodafinil) - a single isomer formulation of modafinil. Nuvigil will be marketed aggressively to offset the anticipated loss of revenue from Provigil.

Modafinil is increasingly used as a 'lifestyle drug' - a lucrative 'off-label' market its makers have not been unduly keen to discourage. Some prescribing physicians have reportedly been surprised at a previously hidden epidemic of narcolepsy among hard-working young professionals attending their surgeries.

Prudence, however, should be exercised in drastically curtailing one's sleep. Prolonged sleeplessness weakens immune function. Animals tortured in sleep-deprivation experiments eventually die from massive bacterial infections of the blood..."


maryfw - April 19

I went to my doctor yesterday and suggested provigil and he would not consider it. I cried!! I am so tired of the fatigue. How do you find a doctor that will listen and be willing to give things a try.


JJ1 - April 19

maryfw, did your doctor give you a reason for not considering it? Just curious since I plan to approach my doctor about it also.


maryfw - April 19

He does not really believe that CFS is a valid diagnosis. He said Provigil is for narcalepsy and did not believe that it would help me. Will send me to a sleep specialist. I just don't know how to find a doctor that will be willing to try new things. He has run every test in the book and is stumped. He started to take me a little more seriously when I started crying. But I shouldn't have to cry to be heard.


JJ1 - April 19

Maybe a sleep disorder doctor will prescribe it to you. I plan to try my rheumatologist, but wondering if she is familiar with it if it is mostly for narcolepsy. It is interesting that it was being used in clinical trials for ADHD. Two of my three children are diagnosed with Attention Deficit Disorder (Larry, I know you say there is a link to FMS) and the third one probably has it as well to a milder degree and I think I have a mild case also. I really have difficulty staying focused and I think that is why I do stupid things like leaving a faucet running in the laundry room to the point of overflowing when I am trying to multi-task.


Connie - April 20

If aspirin was discovered today, one would be required to obtain a prescription. It is a useful and powerful medication, but it does have the potential to do serious damage. My fibromyalgia, diagnosed decades ago, is the result of a lifelong sleep disturbance documented from birth. It was manageable until I contracted mononucleosis at 18. Use of Provigil has given me a normal life. I am thankful, so very thankful. Until now, my life was "driven." In other words, I had to force mind over matter to work or play. I made it through by stubborn willpower. Always pushing and feeling exhausted, my days were in competition with me. Therefore, I tried Provigil. We are even going on a vacation, one without slow walking and hours of sitting. Nothing in life happens without a reaction. We all need to make choices and take the consequences. My doctor and I feel this is a good choice for me.
BTW, it is costly. If your doctor prescribes this medication and your insurance does not pay, which many will not, it is available at a reasonable amount from Canada. The website for Provigil also has a coupon to take to your doctor for seven free tablets. The doctor needs to write a prescription for seven pills. It might be one way for some of you to try it if you and your physician choose.
I offer this information because thirty years ago my knowledge was limited to two pamphlets from the arthritis foundation and medical textbooks. We are fortunate living in an age of information and recourses. With such an array of information, the importance patient and physician working as a team has to be established. Each party carries unique information necessary to the successfully treat this condition. Keep looking and seeking. There are doctors out there looking for patients who are willing to see medicine as a continuing science, a practice of medicine involving the patient and physician.
Make it a great day.



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