User Reviews for Sunosi to treat Narcolepsy
Sunosi has an average rating of 4.8 out of 10 from a total of 36 ratings for the treatment of Narcolepsy. 31% of reviewers reported a positive experience, while 44% reported a negative experience.
Reviews for Sunosi
"I have been diagnosed with Idiopathic Hypersomnia - a VERY close relative of narcolepsy without cataplexy. I started on Sunosi 75 mg per day. That did nothing. I only experienced relief at the full 150 mg dose. Effects start about 1 hour after I take it, shorter on an empty stomach. When I take the 150 mg dose, I am able to focus and don't feel "jittery" or agitated at all. It's a very nice medication for that reason. I find it's much more gentle than caffeine. The downside - this effect only lasts 3 hours. On the fourth hour, I start to "crash" and get very tired. I cannot resist a nap. This is counterproductive but common with every stimulant. So, my doctor is trying me out on a low 5 mg dose of the short-acting form of Adderall to "cover" me during this crash. I will report back on the combination soon. Hope this review helps someone!"
"I started Sunosi 2 weeks ago for Hypersomnia. This medication may be life changing. Before taking Sunosi, I was miserably dragging myself out of bed ever morning, not knowing how I would make it through the day. My daily life consisted of working, constantly yawning, craving one more minute to close my eyes, napping 3-4 hours every day after work, and sleeping all night. Then, I would sleep the entire weekend away. A terrible “existence.” Since starting Sunosi, I wake up much easier, my constant yawning has decreased by about 90%, and the best part is my daily 3-4 hours naps are disappearing! A couple days I’ve taken 2 hour naps (huge improvement), but I’ve also gone many days with NO naps!!!! I start to get tired around 8pm and head to bed almost like a normal person. I do get a slight stomach ache at times, but eating usually helps. Thank you, Sunosi for HOPE!"
"I started at 75mg at 7am. By 12:30pm I crashed and could barely stay awake. I’m now taking 75mg upon waking and 75mg two hours later. The best way I can describe it is that I’m awake but not overly motivated to do anything and I’d rather be sleeping. However, it’s the best option I have at this point because nothing else seems to work."
"I got the free trial of 15 Sunosi pills. When I started using it I didn't feel any better still felt very tired. On the 2nd day of use I started getting a bad headache and I still felt really tired I also checked my blood pressure it was starting to get higher than normal and my stomach was starting to bother me. After the 3rd day stomach got worse still had bad headache and blood pressure was getting higher some slight chest pain. So after that I stopped taking it and now it's been a week since I have been off of it and no headache or stomach problems and blood pressure is down. The only thing I know is all the drugs that I have taken for narcolepsy had bad side effects and they all seem to be a bandage to fix the problem. I hate all of these meds because no one knows what damage you're doing to your body taking these meds that's why none of this stuff is good for you."
"I have had narcolepsy and been on Adderall or Nuvigil for 20 years. I did the 75mg To 150mg and at 12 weeks I thought my life has changed. Then at 16 weeks I come home from work more exhausted and tired than I can remember as if I’m not taking anything. I’m withdrawing from life -to sleep by 7pm Unless I throw Ritalin at it which I’ve never had until now (odd?) I’m worthless by 5. Then I’m up at 330 or 4am. Let me off the Roller coaster Ride"
"Sunosi 75mg a day has changed my life. I’m awake and not sleepy all day - it even seems to help me wake up in the morning. I don’t get the crash I did with adderall. It’s a much more natural awake feeling. Even spending an entire day in front of a computer I didn’t get sleepy."
"I didn’t have a lot of high hopes for Sunosi, I thought it would be very similar to Nuvigil/Provigil. I tried to 75 mg we jumped up to the 150 within two days doctor even had me take an additional 75 mg to make it to 225mg, which is over the recommended dose, and I still felt absolutely nothing on any dosage. It’s labeled as a Norepinephrine, Dopamine re-uptake inhibitor or a NDRI. Which there are several already on the market but their use is for anti-depressants, however a NDRI according to all the medical research I’ve seen would take weeks to reach full effect. I don’t understand how Sunosi can possibly block reuptake of dopamine and norepinephrine within 20 to 30 minutes to achieve the affect needed. So I hope this helps somebody make sure you get free samples or get it covered by your insurance. The manufacturer also offers a discount card which makes it only $8.00. Do not pay cash for this medication until you’ve tried it."
Frequently asked questions
"I was just diagnosed May 2020 with Narcolepsy. I was given another drug that worked at first then stopped after about 2 months. So my doc prescribed Sunosi. It did not help at all. I call him and he tells me to double my daily dose, so I do. Still don't feel anything, still am exhausted, no energy! I've been having a heck of a time with my insurance not wanting to fill it then it doesn't work when I do get it finally. Disappointed."
"I’ve been on and off Sunosi for 6 months. I’m still tired and the side effects are not great. The extreme dry mouth and clinching my jaws are driving me crazy. Going to see if my DR can give me something else to take."
"Sunosi is very disappointed so far. Disturbing my husbands sleep more as he is having more awakenings. Not seeing much difference after taking except more irritable. Also cannot seem to stay awake for long at all during the day and when he is awake no motivation, fatigued. So far does not look like the drug for him. Better on older stimulants."
"So I’ve been taking the 150mg for about five months now, at first it seemed like it was helping me and I didn’t get the crash with the Adderall. At this point I’m not sure if I still feel that way. I still get excessively tired and I am extremely moody. I don’t have any motivation at all and I feel as though my chest is tightened around hour two and I’m almost in a daze/fog. The depression associated with the narcolepsy seems to be getting worse. I definitely think I need to change it. I was never on provigil/nuvigil since I was diagnosed right when this drug came out."
"I was given 75 mg Sunosi for my narcolepsy. On the positive side I can tell the difference in energy, concentration, motivation and productivity and there is decreased need for a midday nap. Negative: this drug causes major heart issues. I have atrial fibrillation and I cannot take this medicine regularly as it increases my heart rate to 120 and raises my blood pressure. However, I try to take it once in a while if I have a commitment or something important to do like running errands, or needing to go somewhere. I am on Xyrem 4.5 for narcolepsy with excessive day time sleepiness which although helps me sleep about 6-7 hours it no longer helps me wake up refreshed as it did the first time I tried it. I also take Doxepin to sleep longer but it leaves me feeling too tired the next day and counter the effect of a good night sleep. I take a nap in the afternoon except on the day when I take Sunosi."
"I shared the experience of another person that added a review. I was so excited the second day I was on this medicine because I wasn't tired and didn't have any other side effects. Fast forward two weeks, my chest erupted in hives and I went to urgent care. They put me on a steroid pack for six days. While I don't have a rash any longer, I'm extremely itchy, have pins and needles on my face, tongue, throat, and eyes. I stopped the drug and am on another round of steroids in the morning and Zyrtec at night per my primary. I also had an increasing heart rate which made me very uncomfortable. That has generally subsided."
"Started with 75mg for about 5 days and then went up to 150mg. At first, the medicine seemed that it would work once I got used to the side effects and learning how to take it so that I was awake during the day but that it didn't keep me up at night - I was more awake during the day without really thinking about it. Unfortunately on about the 7th day of taking Sunosi I had a horrible "drug eruption" reaction. I went to urgent care and they put me on steroids to help with the swelling and I obviously stopped taking the drug. My face completely swelled up and developed a horrible itchy rash all over my body. It has been over ten days now and although things are getting better I still have an extremely itchy rash over most of my body. I am not allergic to any other medication and have never had a reaction like this. The other side effect I noticed during the week of taking it was lack of appetite."
"I was put on 150 mg Sunosi for excessive daytime sleepiness. I took one day and I was awake, but not motivated and could not focus on anything or be productive. I have been on Provigil for many years and they said this medication was better than provigil. I hope it works for others"
"I have been reading these other reviews, and other than the people with allergic reactions, I don’t feel that most of them are giving the medicine enough time to work. I have been on Sunosi for three months now, and the side effects have changed over time. Everyone knows it can take your body some time to adjust to medication. I have been diagnosed with Obstructive Sleep Apnea with excessive daytime sleepiness, but my neurologist thinks I do have Narcolepsy, too. He started me out on 75 mg, but I didn’t notice any difference and after two weeks he doubled it to 150 mg. One side effect I had at first was agitation, but I rode it out and after a while I noticed that I wasn’t feeling agitated anymore. Also the way my body reacted to the drug changed over time. At first I would crash around lunchtime and early afternoon, but wake up during the evening. Now the afternoon crash is a lot better. This is a great medication, but you’ve got to give your body time to adjust."
"I’ve been on 150mg of Sunosi for two days and I can barely stay awake. I was previously on modafinil, but after years of taking it, it stopped working for me. I am not impressed with Sunosi at all, and will be looking for something else until I can go back to modafinil."
"75mg taken in morning I usually expect my medication for my narcolepsy to take effect after about 1-2 hours depending if I eat with it however at 75mg I can’t really say if I feel it working I still feel tired during the day even though I don’t fall asleep. I definitely feel I would fall asleep if I didn’t preoccupy myself like playing a game on my phone to keep myself from closing my eyes. If I did close my eyes I feel I’d be likely to fall asleep especially if I had a busy day or a bad night with little sleep."
"Hi, I had to do a sleep study due to sleeping all day and not able to wake up no matter how my kids tried to. I also have to deal with insomnia since I was a teen and as an adult it just got worse. The sleep study showed that I have Narcolepsy symptoms during the day, which now I have to deal with too. So, when my doctor gave me samples of Sunosi for this sleeping disorder, it changed my life. My days before Sunosi was having episodes of falling asleep during day without being able to wake up and my kids tried to wake me but I couldn't wake up. I have trouble falling and staying asleep at night. During the day my episodes goes like this...I get up in the morning and try to stay up, but after a couple of hours later I fall asleep and can't wake up until 4-5 hours later and then an hour later I fall back to sleep until the next day and each day is different. But, Sunosi changed that to having me awake all day without episodes and falling/ staying asleep at night. Thank you Sunosi."
"I have narcolepsy with cataplexy I have been on Provigil and Ritalin for several years always sleep however could function and motivated. Started taking Provigil and Sunosi in November 2019. At first thought I had found the drug after about three months the drops came no motivation. The best way to describe me is my eyes are open the rest of me is asleep. No focus all over the place"
"I had spent months just eating enough to live, Going to the store was too much effort. Sleep, depression, not getting up or out, the world will forget you exist. My Psych added Sunosi and half dose of one of the drugs that had faded results years ago, 6 weeks ago. It was about 2 weeks before I was getting up and dressed most days. Then every day. (TBI Survivor 2004) fatigue, sleep, and on task energy has been some of my longest battles after injury. Sunosi has helped lift me from a 6 or 8 month very deep slump. It has worked where other drugs did not. [ Many of us react differently to each drug, this one works well for me.]"
"I want it to be affordable because people like me who have Narcolepsy are physically struggling to go to work. How can 30 pills worth of $700 bill work for a person like me? I can’t even work to stay awake. Change the price and you will get the supply and demand you want; considering that every insurance company looks at the dollar bills and not as human. Fix this now."
"I had tried Provigil and NuvigilI previously neither of which helped at all with my daytime sleepiness and daily naps. When I first taking 75 mg of SUNOSI I was like a new person I kept awake, motivated, busy and focused all day, I still felt tired but it didn’t keep me from doing what I needed to do, and my daily naps stopped completely! I had no negative side effects. For months I got so much done every day it was great! Then after about 6 months I started feeling sleepy all day with no energy or motivation at all again so I started the 150 hoping it would perk me up again so far it’s been a week and I’m still not feeling the benefits at all like I did when I first started. The effectiveness seems to have completely worn off."
"If insurance pays for this medication give it a try. If not, don’t waste your money. I've been on every stimulant there is. I was excited about this, unfortunately its done little to nothing. There is no way this can be abused. It is only controlled because it supposedly treats narcolepsy. The only effective meds for narcolepsy are stimulants so they put this in the same category."
"I suffer from narcolepsy. When I used Sunosi for the first time, I can say it was effective from the first hour ! That was like magic! But when I had to wake up so early at 5a.m. it wasn't enough for the rest of the day, I was getting very tired in the middle of the day. I contacted my doctor and he told me to double the dose from 75mg to 150mg if it wasn't enough for the rest of the day. But on the contrary, it got worse and after 2 weeks of 150mg of Sunosi I felt as if the effect had become reversed! So he told me to return to 75mg. Now I feel like a normal person, there are some days when I wake up late so I don't take Sunosi to avoid staying up at night, but at the other times when I use it I can do my daily activities normally without having to sleep all day. For me, I didn't see any noticeable side effects from it such as high blood pressure, that I monitored before and after using the drug for 10 days and nothing happened so far. I have been using it for about 6 months."
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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