User Reviews for Modafinil to treat Narcolepsy
Also known as: Provigil
The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners.
Reviews for Modafinil
Provigil (modafinil): "Provigil was horrible for me, it did not work, I am now on Concerta for over two years and am not planning to move away from it"
Provigil (modafinil): "Taken Provigil for about 5 or more years and it is not effective anymore"
Provigil (modafinil): "This med has been very helpful for my excessive daytime sleepiness (Idiopathic Hypersomnia). Probably saved me from ending my career as a therapist altogether, although I’m limited to seeing half the usual number of clients. First 100 mg dose at 8 am and I’m good to go for about 4 hours—and quite talkative and energetic. By noon or 1 I’m getting quite tired and, even though I take my afternoon dose of 100 mg, the rest of the day I typically feel quite tense and often irritable. Tight knot in upper back. Seeing clients is a real challenge. My life remains pretty limited by my idiopathic hypersomnia but I’m so relieved to at least be able to work enough to support my family. Losing that capacity altogether would have been devastating, so I’m very grateful for Provigil."
"I have been taking 400 to 600mg of modifinil, each day for 20 years, due to narcolepsy, and excessive daytime sleepiness. The Only side effect I have ever noticed, was a decrease in falling asleep during the day. Which is exactly what I need. It took nearly 20 years to get diagnosed with this sleep deprivation. I had many encounters with the law, and driving both before and after being diagnosed. However far less, after. I still have to have Ritalin, or some amphetamine, in the event, the current dose of 400mg a day wears off. Ritalin helps me on a shorter duration, such as in the evening, when an hour or two of wakefulness is needed, rather than the 12 hours typically provided to me by provigil/modifinil. Modifinil is a life saver for me. I was a danger to myself and others, without it. However, $5, 249 for 180 pills, a 90 day supply, is ridiculous.My fixed S. S. I is less than$3000 for 90 days.Thank God for Hip insurance in Indiana."
"I was prescribed modafinil after my 20mg of adderall wasn’t doing its job. I had high expectations going in, and boy was I wrong. It did absolutely NOTHING to help my extreme fatigue. Actually, all it did was give me terrible side effects, such as; stomach pains, feeling “out of it”, diarrhea, headaches, smelly urine, and reflux. I’m sure it will work for some, but it most certainly did not work for me."
Provigil (modafinil): "I have narcolepsy with cataplexy. Adderall, Ritalin, etc. did nothing for me. I’ve only been taking this for a short amount of time but unlike adderall or ritalin this not only physically keeps me awake but I don’t feel the horrible fatigue I usually do. It keeps me awake and feeling good while also easing any nervousness I have. I feel very calm while also being energized.:)"
Provigil (modafinil): "Does not work for me at all. It gave me bad head aches and I still slept all the time."
"I have been recently diagnosed with narcolepsy with cataplexy and mild sleep apnea. Prescribed 100mg modafinil twice a day. I have been on it a week and have not noticed any difference, except lights seem more brighter. I have been misdiagnosed my whole life. I am 42, and am so tired of being exhausted. I am scared to drive since falling asleep and totaling my car on the interstate. I just want to be able to work and be a mom. Hate this disease. I had a hard time even getting modafinil because they wanted to treat the very mild sleep apnea first."
"It doesn't work for me. I took it more than an hour ago. I'm still extremely sleepy... I'm about to take a nap. Made no difference at all whatsoever."
"I have severe narcolepsy without cataplexy and have been taking Provigil/Modafinil for about 12 years now. I started on 200mg but found it didn’t do much to help. After a couple months at 200mg I was then prescribed 400mg and have remained at that dose ever since. This medicine has truly changed my life. I take the full dose about an hour after waking up and eating something (seems to be more effective after eating). Insurance made me try Nuvigil right after it hit the market and the Nuvigil put me into a deep sleepiness state for more than 36 hrs, will never take that again!!! Seems that some of the manufactures versions aren’t as effective as others, as I’ve just been switched to Alembic’s Modafinil and it’s not giving me that fully awake feeling that Provigil, & Heritage versions do."
Provigil (modafinil): "Whether I take 50mg-100mg or 150mg, it always kicks in (if it even does) 12hr after taking it. 95% of the time, I can sleep straight through the med and I’m still severely dragging all day. This med doesn’t work for me."
"Modafinil takes a lot of getting used to and to figuring out what doses at what time works best. It has made me able to be sociable and do things again! I used to sleep for over 50% of the day, but this is no longer a problem. I’m very very happy with it. I can still fall asleep when I take it though."
"I am new to this modafinil (just started this week). I am taking 200mg for narcolepsy. So far it has been great. I haven’t felt this awake in so long. I am able to function all day without naps. One question I have is since I started this I have only been sleeping on average 4-4.5 hours at night. Has anyone else experienced this. Is it because I just started? I don’t want to sleep that little that can’t be healthy."
Provigil (modafinil): "Does nothing for my narcolepsy. I stay on it because the doctor told me to and I’m not competent enough to know that it’s not working. Also I look like a drug seeker if mention anything, and don’t agree with the doctors recommendation. It gives me some anxiety, my body feels awake but my head feels sleepy. Does nothing for brain fog I get with my narcolepsy. Armodafinil works better"
"Diagnosed with narcolepsy at 14 after Multiple Sleep Latency Test (MSLT) had me asleep in 40 seconds. My type is Severe Narcoleptic without cateplexy,. Provigil is gave me my life back so I can complete school!! On it for 7+ years. I take a high dosage in the morning (AFTER eating), sleep immediately afterward to get rid of dizziness/mental fog, wake up an hour+ later with massive energy for the day. Did well, but best results when I started doing a sport regularly along with Provigil (Not as effective when I was inactive). TIPS + Provigil increases alertness/energy level, not a full cure. I take 1-2 hour naps after eating/exercising/awake too long. Learned to plan sleep schedule around activities. + EXPENSIVE, but getting cheaper. Initially paid $1,200 a month. Insurance covered modafinil after Adderal, Xyrem, Ritalin, Nuvigil failed + "Midday fallout" happened during first few months because my dosage was too low. Doctor increased my dosage and I began keeping VERY consistent schedule, and it went away."
Provigil (modafinil): "This medication worked wonders for me. It had a lot fewer side effects than the alternatives like amphetamines and methylphenidate, however modafinil raises histamine levels and I broke out in hives about 2 weeks into taking it. It’s a shame because this medicine worked better than anything else I have tried."
"I was diagnosed with Narcolepsy with Cataplexy when I was a freshman in high school. I am now 26 years old with a 3 year old daughter. While I was in high school, I was prescribed Ritalin, which did help. Recently I was prescribed Adderall and it worked GREAT. I was taking a 20mg tablet twice a day (one in the morning, once at noon or 1 pm). I went and saw a new Sleep Disorder Doctor who prescribed the Modafinil at 200mg a day (1 tablet in the morning). I am still absolutely exhausted by noon or 1pm. On Modafinil I am fine in the morning after I take it, but again, by Noon or 1pm, I am absolutely exhausted, can't focus and can barley keep my eyes open enough to function. I had high hopes for this medication but it just doesn't seem to be enough for me. I don't feel any different then when I wasn't taking anything."
"I am on 200 mg of Modafinil, 20 mg of Adderall XR, 30 mg of Adderall IR and I am still falling asleep. Provigil is way too expensive even with insurance was over $3000.00. I am already having issues at work with meeting deadlines, with is causing the depression and anxiety. I just do not know how I am going to keep my job if I cannot stay awake. I am just wondering what happens when the medication will no longer work at the highest dosage."
"My experience with modafinil has varied widely based on the manufacturer. Mylan generic is the only one that will work even a little bit for me, but it’s getting harder and harder to find. It cuts through that swimming narcoleptic feeling and allows me to be awake enough to function reasonably well. I felt a bit “driven” when I first started on it, but now I take quite a big dose with no side effects except possibly dry mouth. Other manufacturers’ products, especially Alembic’s, do nothing for me—meaning, I constantly feel like I’m trying to walk through a swimming pool the whole time I’m “awake.” In order to get a more consistent product at the pharmacy, I’m trying to get switched over to name-brand Provigil. I can’t really afford that, but I really can’t afford not to function."
"Difficult getting prescription. I would wake up and take a 200mg dose and fall right back asleep. If awake, it would help me stay awake through the day. I still need my other prescription medications. Not a substitute for sleep. I do not find: cognitive enhancement, increased awareness/productivity, or mood improvement. Must take early since it is more difficult to get to sleep. Try not to take it daily, but only when need to be functional at work. No impairment with: driving, jitters or manic symptoms. Unlike amphetamines. I feel the efficacy of Modafinil is hyped. Needed to appeal to health plan: documentation from my doctor, letter from my employer, and a letter from myself. The letter from my doctor is what got my health plan to accept my appeal. Given the cost and coverage difficulty, this drug is of minor benefit for me."
Provigil (modafinil): "Did not keep me from falling asleep at work at all"
"I have narcolepsy and obstructive sleep apnea and Modafinil works wonderfully for me. It gave me my life back"
"This drug has absolutely zero effect on me. I've taken doses from 50mg up to 400 mg and I don't feel anything. I can take it and go to sleep immediately. For me, this is basically a sugar pill. I wish I had the great experiences others report, but I seem to be a total non-responder."
"I’ve tried everything in the books, still on a desperate, [feels like] never ending search to find something that keeps me awake and functional for a day. I’ve been on Dexedrine for the past 5 years, and it’s by far my favourite, no side effects, prevents my cateplexy from occurring, however after a certain amount of time (I would say a year) I have to switch off of it for a few months because my body becomes used to it. Ritalin makes my heart go nuts + anxiety. Modafinil, I’ve been on it for four days and I hate it, I am so exhausted, doesn’t help at all with sleepiness, and it’s giving me INSANE mood swings. I’m a pretty happy, positive person, however this medication gives me bad anxiety, including an intense panic attack last night, makes me want to cry at everything, also feeling depressed. It’s like PMS times a million! Pay attention to your moods if you are trying it out. Good luck with all your narcoleptic journeys, one day we will feel awake!"
"I have had very little side effect on this medication and it helps a lot. There is stronger drugs out there but I cannot stand their side effects. So this is good for me and maybe others that dislike the side effects of other medications."
Learn more about Narcolepsy
IBM Watson Micromedex
Symptoms and treatments
Mayo Clinic Reference
ICD-10 CM Clinical Codes (External)
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Other brands: Provigil