Modafinil for Narcolepsy User Reviews (Page 2)

• Wya...
• Taken for 5 to 10 years
• April 10, 2017

Modafinil "I was diagnosed with narcolepsy when I was 12 years old, but it was discovered during a sleep study in 2010 at a hospital in Denver, Colorado. I was told I had probably had the disorder my whole life. I am 18 years old now and struggle with this disorder every day. Provigil has helped quite a bit, but does have some cons. The lack of appetite will happen anytime you go off the medicine for even a period of 4 days, then go back on it. I also have built up a tolerance to the 200 mg, so it has started to wear off about 4 hours after taking it and is a very hard medicine to get the dosage upped on. Insurance companies will fight you the whole way. Also lost a substantial amount of weight when I first started the med."

• Cit...
• January 31, 2009

Modafinil "I was diagnosed with narcolepsy when I was 17 and still in high school. That was about 14 years ago. Out of those 14 years, ten of them have been spent on Provigil. It has obviously worked for me. I take 200 mg 3 x a day - one in the morning and two at lunchtime. I haven't had any side effects, other than not being ready for bed at night, but that could be me just not wanting to go to bed. All in all, Provigil keeps me awake and functioning. Oh, I do agree with everyone about the cost - it's not cheap."

• BBB...
• Taken for 10 years or more
• August 17, 2019

"I have severe narcolepsy without cataplexy and have been taking Provigil/Modafinil for about 12 years now. I started on 200 mg but found it didn’t do much to help. After a couple of months at 200 mg, I was then prescribed 400 mg 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 hours, will never take that again!!! Seems that some of the manufacturers' 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 and Heritage versions do."

• Gee...
• Taken for 1 to 6 months
• February 27, 2016

Modafinil "IMHO, modafinil is a good medication. I was originally diagnosed with EDS. A couple of years later, MSLT showed REM, blablabla, narcolepsy. I've tried it all. Best was Dexedrine, which is no longer manufactured (as far as I understand). Adderall dropped me down to about 95 lbs (even though I'm a small girl). Ritalin made me super anxious and mute and slow. And Provigil was just okay and very expensive. Stopped the Provigil because it cost $500 a month, 60 tabs BID 100 mg. I just can't keep paying for it. I went back to Ritalin, which is the cheapest of them all because I thought I was better. Never been more wrong! Not being on the Provigil has shown me I do have narcolepsy. Without Provigil, I can barely function :-/. But how can I carve out $500 for it?!"

• gra...
• November 19, 2011

Modafinil "No side effects. Did not see anyone who listed pain relief. It was prescribed for my daytime sleepiness, but I noticed that my arthritic pain (knees and back) was much less. Had much more energy as well."

• Anonymous
• February 16, 2010

Modafinil "Literally, Provigil saved my life. I suffered the severest of symptoms regarding narcolepsy with cataplexy for several months prior to physicians determining a diagnosis; I'd have complete 'drop attacks' out of a clear blue sky; chatting someone up, nuking a cup of coffee, taking a shower, and SPLAT, down I'd drop! Hit like a sack of sand. Broke numerous bones, ruined numerous joints, fractured my skull, and broke three ribs. After being evaluated and worked up by a specialist, I was diagnosed and medicated with two times 200 mg Provigil in the A.M., and I've now a somewhat normal life! It's been two years, and I note the dose is less effective; I've not eaten turf lately, but I'm nodding out at the PC often and slipping from awake to REM, boom like that!"

• Car...
• Taken for 6 months to 1 year
• December 9, 2015

Modafinil "I have narcolepsy, which went undiagnosed for decades. I don't drink coffee, and for years self-medicated using caffeine tablets and diet sodas. Finally, in desperation, started looking for answers via the net, had a sleep study, and voila, narcolepsy. Tried Ritalin with no effect, then Provigil, and for the first time felt normal and productive. Health insurance would not cover, and soon I was paying $800.00 a month for meds. To make matters worse, the Provigil soon lost any efficacy. Ultimately, my doc reluctantly prescribed Adderall, and I have been taking 30 mg in the AM and 20 more around lunch. This works okay, but still need caffeine."

• btc...
• March 19, 2010

Modafinil "Provigil saves the day. I work full time, intricate work, drive, multi-task person. Yes, it is expensive, but fortunately I have good insurance from my workplace. I take 200 mg a day. No side effects. Never take a nap. I'm the energizer bunny."

• Fly...
• November 3, 2008

Modafinil "Compared to Ritalin, which I was taking before this drug, this produced a much more alert and natural awake feeling. Unfortunately for me, it also made me practically psychotic, and in a moment of thoughtfulness, I thought this must be how people feel when they talk about 'snapping'. I could not control my emotions. I went back to my doctor and promptly switched off the medication. Too bad the side effects were over the top, as the alertness was amazing. I took the drug for less than two weeks."

• KRa...
• Taken for less than 1 month
• April 22, 2019

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."

• Sle...
• Taken for 1 to 6 months
• June 11, 2018

"This drug has absolutely zero effect on me. I've taken doses from 50 mg 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."

• sle...
• May 1, 2009

Modafinil "The first one I tried, and it was not good for me. The constant headaches, dry mouth (very bad at nighttime), made me have very real-like/scary nightmares, and after 2 days did not even change my energy level/random sleep attacks. Still had to have a nap to make it through the day."

• sig...
• Taken for 6 months to 1 year
• May 22, 2012

Modafinil "Provigil (Modafinil) has been a good addition to my regimen for dealing with the symptoms of narcolepsy. I take different doses depending on the severity of symptoms. I take 50 mg twice a day most of the time, or 100 mg twice a day. I have tried 200 mg once or twice a day, and that's where the side effects kick in (very dry mouth and headaches). It does keep me awake during the day most of the time, but sometimes I feel as if I never took it. But that's where adding coffee or caffeine pills really helps. I feel safe taking this med, and I'm happy to have discovered it."

• Anonymous
• March 16, 2009

Modafinil "I hear people rave about Provigil, and I was excited to try it. Unfortunately, it did not help me. I slept just as much as I did taking no medication at all. I am still in testing and trying different medications. Hopefully, I will find one that will help me stay awake eventually."

• Anonymous
• May 2, 2010

Modafinil "I was put on Provigil a year and a half ago and can no longer take it. I was one of the ones that had a horrible reaction to it. At first, it was just a headache, then I would crash around 5... then the headaches got worse, and no medicines helped with the headache. Then I started itching. At first, I didn't connect it to the Provigil, then I broke out EVERYWHERE with a rash that was like poison ivy, just worse. So I am no longer on any medicines, and let's just say that most days are very hard, and I am so very tired."

• Ter...
• Taken for 10 years or more
• September 4, 2023

"I've been taking it for more than 20 years. My career is court reporting. I used to fall asleep in the courtroom while writing on my machine. On 15-minute breaks, I went into the closet to nap. This drug works magically perfect. I'm awake and attentive but can still nap if I feel like it. No side effects. I'm retired now but still need Modafinil if I need to drive anywhere. I always had to pull off the highway to take 10-minute naps before this lifesaving drug. I've also gone without it and NEVER feel addicted to it. I never feel hyper or jittery. It's a miracle pill! A+++++ When I first started taking it, I took 200 mg in the morning and 200 mg at noon. I can now get by with 200 mg once daily most days unless I have to drive several hours. It's the TOPS!"

• Sle...
• Taken for less than 1 month
• February 11, 2024

Modafinil "I take it first thing in the morning. It has definitely solved my problem of excessive sleepiness during the day! One side effect that I'm dealing with is a daily headache. If that goes away, this drug has been a lifesaver for me."

• Anonymous
• April 8, 2009

Modafinil "I have been on 2 x 200 a day for 10 months now, and it has not been the miracle drug for narcolepsy that some people talk about. I have given it a lot of time, but still have excessive daytime sleepiness. Works better for others, I suppose. Also, does anyone else notice that it makes your urine smell weird?"

• Awa...
• Taken for less than 1 month
• December 15, 2014

"I was just prescribed modafinil, and I was happy I picked up my prescription on Friday, so I had the weekend to try it out. So, yup-I woke up and cleaned things I haven't cleaned in months with incredible focus. I didn't feel scattered, didn't lose my train of thought, my attention span was excellent. It almost made me wonder if I had ADHD and never knew it. But anyway, I took 100 mg, half a pill at a time. No headache, no nausea, I ran a couple of miles and did okay. I was able to feel good and not be tired and even got to play with my kids in the evening-something that never happens because I'm usually too exhausted to do anything like that. Overall, I'm feeling a ton better!"

• Luc...
• January 29, 2021

Modafinil "When I was 50 years old, I started nodding out in the car and restaurants, and it was very humiliating. It was uncontrollable, my family was very embarrassed. I went to a neurologist, and they took sleep studies, and they said that I had sleep apnea, which was unusual because I am, but at the time I was 105 lb and I was not diabetic, and I am borderline narcoleptic. I am hypersomnia. I was prescribed many medications, they did not work, such as Adderall, which had just come out. They said it was a very unique medication. I had to fight the insurance to pay for it. My doctor prescribed that after it was approved, and I have to take 200 mg in the morning. Then I would become myself. I take that faithfully and another 200 mg at 1 p.m., and I do not have those episodes anymore of uncontrolled sleeping where I cannot function. I've been on Provigil for 12 years now. My doctor prescribes 100 mg Nuvigil in the afternoon with the 200 mg Provigil."

• Anonymous
• Taken for 1 to 6 months
• September 12, 2012

Modafinil "I have only been on Provigil for a month, but it has caused extreme nausea and headaches. I have a history of cluster headaches and migraines, which had diminished, but are now back in full force. I've also had stomach cancer twice, and Provigil makes me very nauseous and losing weight due to an inability to eat. I'm glad that it is effective for some, I just wish that I was in that group because I am TIRED."

• Anonymous
• November 2, 2019

"I have been recently diagnosed with narcolepsy with cataplexy and mild sleep apnea. Prescribed 100 mg modafinil twice a day. I have been on it a week and have not noticed any difference, except lights seem 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."

• Sle...
• July 23, 2009

Modafinil "I took Provigil for 6 months with varying doses (100-300 mg/day). It only took about 20-30 minutes to kick in and lasted roughly 7 hours. It gave me an incredibly high level of alertness. I also have mild cataplexy and sleep paralysis, and it seemed to help keep both of these under control. However, it also gave me very bad nausea and an even worse headache. When the medicine wore off, my body reacted by immediately having a strong 'sleep attack.' If I didn't take my next dose before the first had worn off, the second didn't seem to work. Also, my urine smelled strange, and the smell got even stronger when I drank more water. This stopped as soon as I changed my medication to Adderall."

• Mel...
• July 14, 2019

"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."

• Mic...
• January 24, 2010

Modafinil "Effective, yet extremely expensive for folks like me who don't have prescription coverage (insurance). Wish there was a generic form of this. This medicine has the least amount of side effects and is very effective for me."