Wakix for Narcolepsy User Reviews

• May...
• Taken for 1 to 2 years
• November 9, 2020

"This medicine changed my life. I couldn't drive, nor stay awake. Now, thanks to this medicine, I can function every day. It seems to work without losing its effectiveness. I am just so thankful that someone finally came out with a stimulant medication that makes me feel normal without feeling overactive and causes an increase in heart rate or my blood pressure. I'm also thankful that it is not in the category of controlled medicines, it makes me feel like I'm taking a normal medicine. Thank you for helping those of us with narcolepsy, and I also have cataplexy. Wakix helps with that too. I can laugh really hard without falling over on overexcite, even when it's good news. I tried everything, this is the only medicine that works for me to control my sleep-wake cycle. I can now go to bed anytime I want to and wake up too."

• Anonymous
• Taken for 1 to 2 years
• April 30, 2020

"I was on a trial with this medication for narcolepsy with cataplexy. I have been on the trial for over a year, and the trial is up. I was very dedicated to taking the medication, and it was working very well. I just found out that the trial is over, and my insurance is not going to pay for the medication. It is thousands of dollars a month to continue. Not sure why they would even start you on it if this was going to be the final outcome. Back to square one!!"

• OUC...
• Taken for 1 to 6 months
• May 16, 2020

"I was stunned my insurance approved this Wakix, as this medication costs about $135k per year. I'm just now finishing my first month, and it's totally changing my life. I'm now beginning to be able to both drive and work again thanks to Wakix. I could never express the amount of joy this is giving me in an online review. It's a shame that the US healthcare system is so corrupt because this medicine could change a lot of people's lives for the better. To me, so far, this medicine is an answer to my prayers of retaining control of my life. It's just a travesty that in the US, it costs so much, whereas in Europe, you can get it for literally a 1/10 of the cost we Americans have to pay... 'yay capitalism...'"

• Amy...
• Taken for 1 to 6 months
• March 30, 2023

"I have suffered from narcolepsy all my life but wasn't diagnosed until recently. Very clear diagnosis at a sleep center. Almost died from totaling my car. Had to quit my favorite job. They put me on methamphetamine, Adderall, Sunosi, and Modafinil. All they did was make me either sleep or angry and skinny. I was a shaky, confused, sleepy, angry person. My REM sleep suffered. The doctor appealed to my insurance twice. I was down to 110 lbs and almost losing my new job. I finally started Wakix. This has completely changed my entire life! Now, for the first time in over 62 years, I know what time feels like. It is so surreal. I have a hard time describing it. I actually sense I should be getting ready for bed. I wake up sometimes before the first of my 8 alarms. I am awake in the morning, not the walking dead! I can speak in coherent sentences upon waking. My depression is so much better, my therapist is amazed. I am way better at time management."

• Sle...
• Taken for 1 to 6 months
• September 30, 2022

"I really wanted this to work, however, it didn't do anything to alleviate my symptoms after 12 weeks. At around the 8-week mark, I began to experience severe episodes of hypoglycemia shortly after eating any and all food. I have no history of diabetes or any other blood glucose issues. This went on for a month until my PCP suggested that Wakix might be causing it since raising histamine levels can adversely affect some people. I stopped the med, and sure enough, all the hypoglycemia symptoms immediately disappeared. I have reported this effect to the FDA, as it's not listed in the side effects profile, as I'm sure I'm not the only one that this has happened to."

• Sle...
• Taken for less than 1 month
• October 21, 2019

"I was excited to learn that there would be a new medication to treat the excessive daytime sleepiness I feel as a result of my narcolepsy. I mentioned Wakix to my doctor, and he said he would look into it as he had not any experience with it. He called me to say that if I needed the maximum prescribed dose, it would cost over $135,000 a year! For a pill that is taken once a day! I knew it was approved in Europe, so I checked to see how much it cost there. Looks to be closer to $5,000 a year. So frustrated!!!"

• Sud...
• Taken for 1 to 6 months
• August 14, 2020

"Been on Wakix for about 6 months along with my Adderall. At first, it was great. I was able to be alert much faster and even able to sleep at night. Over time, I began having the pins and needle sensations all over my body at night, which prevented me from sleeping. By the 3rd and 4th month, I started with the muscle weakness. I was falling down every day and most days several times a day. I had no strength in my legs in order to get myself back up off the ground without assistance. Then, month 5, I started with the nausea and couldn't keep food down. Month 6, I decided to stop taking Wakix and haven't fallen since. Only been off it for about a week, but the muscle weakness continues to get worse. Can't even stand on my own two legs or walk with a walker. Now, I do have multiple medical issues that I think play a part in the severity of the muscle weakness."

• Sti...
• Taken for 1 to 6 months
• March 12, 2021

"Wakix reduced brain fog for me. It hasn't caused any notable side effects. It may be somewhat wake-promoting, however, it isn't enough for me. I am completely exhausted. I would continue on it for the decreased brain fog, but I don't know that it's worth the price tag."

• nap...
• Taken for 1 to 6 months
• November 23, 2021

"Tried numerous different medications for my recently diagnosed narcolepsy, including Provigil, Nuvigil, Sunosi, Vyvanse, Adderall ER, methylphenidate, and now Wakix. Maxed out on the doses for Provigil, Nuvigil, Sunosi, and Vyvanse, and still wasn't enough to get me through the day. Tried Vyvanse and Adderall combo, made me sick. Did Vyvanse and methylphenidate combo, made me sick. Then started Wakix about 4 weeks ago and not sure if it's doing anything for me yet. Did Wakix with Vyvanse, still fell asleep driving home. Now I take Wakix and Adderall ER in the morning and since doing so (only started three days ago with this combo), I feel a lot better, but I believe it is mostly due to the Adderall. Only thing noticeably different since starting Wakix is that I wake up in the middle of the night and have difficulty falling back to sleep, which used to be rare for me. In fact, it is 2:30 AM and I'm typing this because I can't go back to sleep. As far as copay, I only pay $15."

• all...
• Taken for 1 to 6 months
• June 16, 2021

"Side effects started immediately, which were increased heart rate, severe insomnia, daily panic attacks, and suicidal ideation. Stayed on them for 2.5 months because I am so tired I can barely function, and they do not work at all. Absolutely no change in my daytime sleepiness."

• Kim...
• June 15, 2022

"Wakix helps me stay focused and alert. I definitely noticed a difference a few weeks after starting it. I have developed lupus-like symptoms and pins and needles through my extremities, though. Extreme sensitivity to the sun and UV rays. Not sure if it's Wakix or not. No one can tell me."

• Alw...
• Taken for 1 to 6 months
• May 1, 2020

"I tried Pitolisant for six months. As I attempted to 'dose up,' I experienced nausea and frequent awakening all night long. At the lower dose, it was ineffective, so I went back to my old standby, which is Dexedrine."

• Ser...
• August 2, 2021

"This medicine is life-changing! I have to adjust the dosage to a pill and a half. After a month of a pill and a half, I never feel sleepy and overwhelmed, it gives me clarity and not shakiness or tremors like the stimulants. I finally feel like there is hope for all narcoleptic patients, and I thank so much the person who invented it. I am annoyed that the FDA took so long to approve it. Anyway, from all the meds, this is the best I have ever tried, and we will not die from heart failure because it is not a stimulant. Thank you so much, Wakix, for changing my life and getting me back to school. Now I feel more motivated to do anything, and I do not have any withdrawals from this medication."

• Lil...
• Taken for 1 to 6 months
• November 24, 2021

"I was on this medication on two separate occasions. First time I was on it for two months, 17ish mg. I stopped taking it because I was having the worst sleep at night for about a month. I was waking up every 2-3 hours no matter what I did, even after taking sleeping medication. My doctor believed it was because I was taking too high of a dose. Now I’m on 8 mg and having this issue. I’ve been on it now for a month and haven’t slept more than a few hours in 2 weeks. It’s making my narcolepsy worse because I can't sleep. I can sleep, but I can’t stay asleep. It’s driving me insane. I’ve tried every over-the-counter sleeping aid and nothing helps. I don’t recommend this medication. However, everyone’s body reacts differently, so maybe it’ll work for you."

• sti...
• Taken for 1 to 6 months
• February 1, 2023

"I've been taking Paxil at night for 28 years, and it solved the hypnagogic dreams, sleep paralysis, and chronic neck pain. Paxil has been a life-changing drug for me. Taking it with Wakix has caused me to wake up a few times per night (and I'm eating in the middle of the night). I also take Ritalin during the day. I tried dropping the Ritalin, but Wakix doesn't help my attention deficit, so I'm making a lot of mistakes at work, and I just stare dazed instead of working efficiently. Unfortunately, Wakix does keep you awake, but it doesn't help with attention deficit issues. My sleep just isn't the same. I sleep lightly and wake up several times a night. I've even tried reducing the amount, but still can't sleep soundly at night. My insurance copay is $110 per month--much higher than my other scripts. I think it would be helpful for me while driving long distances, but not otherwise."

• Rja...
• Taken for 1 to 6 months
• September 30, 2022

"Awful, awful, awful!! From day one. Felt way more tired. Went up to full dose, 18 mg if I remember, and nothing, tired. I think I doubled that two weeks later after the pharmacist said to, felt improvement for a day and then awful again. Wasted three months on the drug and weaning off it. I do appreciate it works for some people, but oh god, not for me."

• wak...
• Taken for 1 to 2 years
• August 29, 2024

"I take Wakix when I wake up. For me, 6 AM ... I now sleep all through the night, but get sleepy early (for me) about 10 PM. I wake up like clockwork at 6 AM every morning. I do take a needed nap around 3 PM for about half an hour to an hour. My day is now stabilized. I used to sleep late in the mornings, waking up at various times as well as being sleepy during the day at various times. I do also take Adderall with Wakix. I have been taking Adderall as well as dextroamphetamine before switching to Adderall. I have been treated for narcolepsy for 20 years so far. Terrible interference with my life. Wakix, for me, has been a noticeable and welcome improvement. NORD has helped pay along with my prescription plan to cover the extremely high cost of Wakix."

• Sle...
• Taken for less than 1 month
• May 24, 2023

"I would love to say it worked. The copay is four times my monthly income, which is less than $100 over qualifying for help. Since having to use just Medicare, I haven't been able to get quite a few meds I could with Medicaid. There is no way possible to get an inch of breathing room. My health has rapidly declined since losing Medicaid by just a few dollars over qualifying, leaving me worse off than I was before and unable to get needed medications anymore. Stimulants cause severe side effects, the only other medication I can take that works is opiates. Because of all the laws and craziness, I can't get a dosage near adequate to have any kind of life. I spend every day sleeping my life away, totally alone, with no energy to build or maintain relationships left. Despite there being meds that do work and could work, my life is a complete waste having no access to them."

• Kim...
• Taken for 1 to 6 months
• April 16, 2023

"I started in Nov. 2022, following the Wakix titration up to the max dose of two 17.8 mg every morning. I didn't notice any side effects at that time and felt like I could wake up in the morning much easier. Then my insurance changed, and I couldn't continue until I figured out new coverage. The manufacturer qualified me for full coverage, which was great. Back on it for a month with no problem, but since recent allergy testing, I've been experiencing stomach problems with vomiting and diarrhea. Since this has been happening on and off for a couple of weeks, I'll be heading back to the doctor, but in reading all the info, I can't figure out if the allergy testing set something off in my system. I'll be disappointed if I can't continue and have to start figuring out what will work all over again."

• Ban...
• Taken for less than 1 month
• February 17, 2020

"Just started Wakix. Very expensive and does not take insurance. HOWEVER, I was APPROVED for it by my insurance company, and they also have payment help through Panther (the company) you’d have to speak to your doctor about. Have not seen any difference yet, but it’s just my first week and does take 8 weeks to notice any differences. Very hopeful! If it helps me, I will be sure to update!"

• Cod...
• Taken for less than 1 month
• September 28, 2023

"I have severe narcolepsy. I've only been on Wakix for 3 weeks and can definitely feel an improvement. However, I'm hoping for even more improvement."

• ano...
• Taken for less than 1 month
• April 9, 2023

"Don't bother taking this. It does not work, and you will pay 3k for it. In my opinion, not worth it. You will be mad for paying 3k for something that doesn't work."