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- Recurring Sleep Episodes During the Day (52 reviews)
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3.8 Overall Rating
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33 People found this comment helpful
I'm 28, was diagnosed with Narcolepsy and EDS 3 years ago. I have tried nearly every stimulant prescribed and finally got to this. I take 3.75x2 and it works great. I have done tons of research on this drug. FYI, this drug was used by weightlifters in the 80's as 90's as a fat burner. It boosts your metabolism while on it which is why some people get crazy hungry when on it. To alleviate...
12 People found this comment helpful
This medication landed me in the hospital. I almost died and was in a coma like stage. I had to spend a week in a psych unit because I had such bad memory loss, confusion and aggitation. This drug is not safe. From now on I have to go to therapy, take daily medication, and am unable to work, drive and do anything without the help of my husband. I was a healthy 28 year old female with insomnia ...
This medicine has worked miracles with my health and I am a narcoleptic. When taken properly and you have narcolepsy it is a excellent sleep aid that lasts for quite a while. Saddly your body does become immune to it after a while but in the mean time I have gotten so much done!!! It's crazy! The experience part of it that's so awful tho is it is so over priced and hard to get ahold of that it gets taken away from me regularly without warning and then I go back into sleep coma basicly and sleep days away. This drug has been a life saver. Insomnia is not treated with this medicine as this medicine strictly deals with rem sleep from my understanding. It has been in my family for years and should be considered a life saving drug like insulin. Read More Read Less
Left me in a daze for the 8 months I took it, and I lost 40 lbs (was normal weight before). I knew I had to stop taking it when family was individually posing for pictures with me at thanksgiving but not with anyone else. Was a very bad stretch and would rather be sleepy.
Okay so I have narcolepsy and have been taking this durning I love you with a stimulant. Unfortunately I hated the drug because I am already the perfect weight for. My size and although I eat so much I never gain any weight. Also I pee ALL THE TIME. Literally... I take this medication to help me sleep at night but end up pissing 4 or 5 times a night. Typically twice before bed, once at 2am (second dose), once at 6am and again at 8am, and almost every other hour during the day.. I get a about 6 hrs of good sleep on the drug. Which helps to an extent. My manager wonâ??t let me close the store because I still get sleepy. Whatâ??s crazy is my pee is clear, I drink normal amount of water, but I am still dehydrated! Itâ??s like now the water just passes straight through my body and it doesnâ??t absorb. I get super chap lips and my VAINS bulge. I dont know how I feel about either drug still pissing all the time...... and everyone is dismissing this. my gyno and urologist both said nothing is wrong after multiple tests. The pharmacy said nothing is wrong too! I hate this! I think I was better off with my narcolepsy making me tired off the medication. Read More Read Less
So I have been taking xyrem for about 3 months now. Total night and day difference. I am a 37 year old mom of 5. Oldest being 16 and youngest 15 months. I was scared I wouldnâ??t hear the baby. In fact, I do go into a deep sleep for a good 3 hours and automatically wake up for next dose. I do hear the kids which hasnâ??t seem to be a problem. One downfall is the diarrhea. Only side effect I seem to have. If you take xyrem and do not go right to sleep you almost get like a sexual tingle throughout your body. Told doc and he said go to sleep. No one ever tells him these things. But overall during the day I feel like a million bucks. Once in a while I still need a provigil around 3-4pm but overall none. If you miss your second dose I can guarantee you will feel the tired effects. I have had narcolepsy many years and just thought I was worn down from kids feels good to be me again!Read More Read Less
I was diagnosed with arcolepsy with cataplexy about two years ago. I used to fall asleep anytime I wasn't doing something that was highly stimulating. I would fall asleep even while talking with someone or drinking coffee. I would sleep 8hrs a night then 3-6 in the day. My jaw would feel very weak and sore if I laughed genuinely or spoke excitedly. I always felt like my brain was in a fog and my thinking, memory, and concentration we're shot. I had injurious dream enactkent behaviors and periodic limb movements at night, in addition to sleep walking and talking. Xyrem has resolved all of it and I have had zero side effects. It has changed my life and I hope I can take it for many years to come. Read More Read Less
I felt privileged to be prescribed Xyrem to treat insomnia; one of my main complaints in the 30 years I have suffered from Myalgic Encephalomyelitis and Fibromyalgia. I had huge expectations from this medication. After 3 months of enduring the most horrific side effects, I decided to quit. Since the start the mechanism of the medication was unpredictable. I would follow the strictest routine and all the manufacturer's and doctor's indications. However, Xyrem would behave differently every time I took it. Sometimes the medication would kick in within 15 minutes; other times it could take a couple of hours. Some nights I would sleep straight through the night with the first dose; others I would wake up after two hours. Some days I would wake up feeling well rested. Others I felt exhausted. Most days I would wake up with a headache. None of this had any relation to the way the medication had performed the night before. However, the unpleasant side effects were constant and increasing in intensity, to the point I dreaded taking the first dose every night: -The dizziness and nausea after taking the medication were unbearable. -I passed from never having to urinate during the night to have to go to the toilet up to 10 times per night. -I would wake up in a zombie-like state. It took about 5 to 6 hrs for me to be able to function. And I was tired all the time. -The worst, however, was the pain. FM/ME are characterized by muscular and joint pain. At first, I noticed a dull pain creeping slowly from my feet to my head. Then a sharp pain (hip, shoulder, arm, leg, hand or any combination) would wake me up. Sometimes the pain was so intense that I woke up shouting and crying. The pain would last 2-3 hours after waking up. I understand this drug works for many and becomes a lifesaver. I had the same hope for me. Unfortunately, this wasn't the case. I decided to stop cold turkey. And I'm glad I did. The side effects of this medication are worse than my illness. Read More Read Less
I absolutely love my Xyrem! I'm not going to lie and say it was great from the start because it was awful in the beginning. My body had a very hard time adjusting to it for the first 2 weeks, I was miserable with pretty bad daytime nausea, headaches and fatigue. To this day I still vomit if I don't lay down and go to sleep immediately after taking it at bedtime, it tastes terrible and I always have a dry mouth but that's all worth it. Life with narcolepsy is awful, I was sleeping my life away, literally sleeping like a newborn baby 24 hours a day and never felt rested. I was so desperate for a solid full night of sleep and to actually feel rested upon waking that fighting through those first 2 weeks was so worth it for me. I've been able to discontinue my antidepressant which is great. I don't know for sure if the Xyrem is helping with my depression or if I was just exhibiting the symptoms of depression due to my uncontrolled narcolepsy but either way it's better now. I've also had a significant improvement in my fibromyalgia and chronic back pain since I've been on Xyrem. I am not kidding when I say that this is a miracle drug for me, my physical and mental health have both improved and I hope I never have to go back to that miserable life I had prior to starting it :))Read More Read Less
I am a narcoleptic with cataplexy. Without this medication I would lose my job due to sleeping.
After trying this now for a few months, I am thoroughly disappointed. I read reviews and stories about how this was supposed to be the best Rx for Narcolepsy and "Life changing" and it did absolutely nothing for me other than making me severely depressed, anxious, and causing so much unneeded stress having to deal with a horrible Pharmacy(Only one in the U.S. can fill this script and it is mailed to you). I am still currently on it, and am close to being done with this drug. It is extremely expensive and pointless to use if it does nothing. It suppresses REM sleep and I feel that has caused my depression and anxiety to skyrocket. I need my dreams to process my thoughts. Read More Read Less
I was nervous to try the xyrem after reading so many different reviews. It sat in the container and fed ex box for a wk at my house before I tried it. It was so easy to use and it worked wonderful. I never knew what if felt like to actually sleep four hours in a deep sleep. I have so much more energy during the day that I notice I am not needing the ridilin as much as I would like to stop that prescription entirely, but I do still take provigil twice a day. I haven't felt the need to nap during the day as much and I actually look forward to sleep now. I always take the medicine in bed. Once I tried to stay up to see what would happen and I was so sick, like drunk sick and ate thinking it would make me feel better. Take the medicine in bed when you are ready to go to bed. It works fast. I been on it about a month now, and no problems what so ever. I notice I am smoking alot less and am hoping it helps me to quit smoking entirely. However, I have very dry heavy feelings in my eyes and am clinching my jaws alot during day I notice.....I think it may be a side effect from the xyrem.Read More Read Less
I have taken Zyrem for 8 years. The medication is mostly salt. Make sure you drink enough water. Water can lessen some undesired effects of this drug. It is very short acting. I think that is one thing I like about it.
This medicine has changed my life. Although it has taken time to get the balance correct between this and my daytime stimulant meds, I now have a fairly "normal" life. I sleep 5-6 hours and wake refreshed. I no longer have the fibro type symptoms and I get rid of cortisol so diet and exercise have been able to take care of my weight. Beware! Taking a larger dose (a one time accident) will make you think you are dying!
First of all having to wake up to take medicine is impossible for me when I can't wake up. The only people waking up with the alarm is the rest of my family. While initially I fell more awake in the morning, I am experiencing some severe sleepiness episodes and have not been able to discontinue stimulants. Even with stimulants I am struggling. Has anyone else experienced incontinence or excessively heavy eyes. What about headaches or difficulty thinking? The problems thinking are both on and off the xyrem and I can't tell ifit is better or worse. The main difference I noticed was a reduction in the vivid dreams I usually experience.Read More Read Less
I was diagnosed with Narcolepsy in 2010 and have been taking Xyrem after a short time of trying stimulants, which I hated. I love taking xyrem because I feel refreshed in the morning; I almost always still take an hour long nap everyday, but can manage without one sometimes. The only side effect that I have noticed is feeling dizzy if I try to fight going to sleep right away on it. I believe it works best to stick to a pretty consistent sleep schedule at night with the medicine and to go to sleep right after you take it. I wouldn't let the other reviews freak you out- if you don't like stimulants then please try xyrem. It is all I am on and I do not drink any caffeinated drinks or anything. I also no longer experience sleep paralysis or any hypnagogic/hypnopompic hallucinations. Oh, and I'm not sure when the eating is happening that a lot of reviewers mention- sometimes when I wake up for my 2nd dose I'm hungry, but I just take the dose and fall asleep usually. Read More Read Less
i get three hours of sleep with each dose but the side effects aren't worth it
I have narcolepsy w/cataplexy & fibromyalgia. Began xyrem Jan. 2010. Reached full dosage April 2010. Felt great. Slept well. Woke up w/o alarm to take 2nd dose & in the mornings. Shortly after reaching full dosage had psychotic episode & was hospitalized. Was OK after stopping xyrem, but haven't felt as sharp mentally since then. Had to retire early as I was unable to fulfill job responsibilities. I truly believe it altered my brain chemistry. So, cheers to those for whom it works & prayers to those who, like me, had life-changing, scary side effects.Read More Read Less
I don't think that I am at the correct dosage. I currently take 4.50 and it still takes a minimum of 30 minutes to an hour to fall asleep. When I do go to sleep I may sleep anywhere from 2 1/2 to 4 hours. The second dose it takes about 30 to 45 minutes yo fall asleep. Then I may sleep anywhere from 2 1/2 to 4 hours. I have found that if I go to bed upset, or have eaten and I did not wait at least 2 hours it take much longer to fall asleep. I now get about a good 6 to 7 hours of sleep a night. But when I wake up my back still hurts. But I have a history of back problems. And I have a sleep deficit of about 15 years. Although I was taking meds for sleep I never got the good cycles or REM sleep that I needed. Therefore I would always awaken feeling tired, fatigued, hurting just awful. Now when I awaken I am beginning to fell better rested, and more energy everyday. It is a process so be patient! I started at the lowest prescribed dosage at 2.25 in Feb of this year. I feel like my dosage needs to be upped but I will let the doctor decide that. I would be lying if I didn't say that this medicine did scare me a little. But when you have gone 15 years and have not got the correct sleep, that regenerates, rebuilds your muscles no wonder my back hurt all the time.And someone who suffers from Fibromyalgia and depression knows how important sleep is.So don't give up but remember to adhere to the correct way to take your medication. And remember that it does take time to get to the correct dosage. I was up for Six straight nights and days until I got my first nights sleep. But ever since I started sleeping, it has been good. And I know it will get better. This is one thing that you cannot rush. Sleep well my friends and don't give up.Read More Read Less
This is a difficult drug in that it can be unpredictable and you have to get up in the middle of the night to take a second dose. when it works it works well, when it doesn't your in for a long night of pain.
It has helped my sleep immensely but it is a very tough drug to find the right dose. The side effects crept up on me over a period of a couple days when I tried the max dose of 4.5g. Side effects like anxiety, nausea, and depression. Also you are supposed to take it twice a night which disrupts your sleep. Lastly it's ridiculously expensive.
Sure, there are the side effects that "get me" every now and again (nausea, dizzy spells, "drunk" eating) but this drug has changed my life. I was on Ritalin (Provigil just didn't work for me) for several years, fighting to stay awake and finally, Xyrem was prescribed: I get the sleep I need at night, so I wake up refreshed and ready to start my day! Rather than taking a stimulant, I now just sleep well at night and feel "human". The issue I find now is, after moving to a new area, its difficult to find an MD that knows about the drug- my most recent one had to register to provide it while I was in their office and they don't really know much. That's okay, except when considering having kids, etc., I'd like to NOT be the expert in the room... If your MD feels confident in prescribing, I would recommend that you give it a go, even if you can't imagine your life without your stimulant drugs...you may just be pleasantly surprised!Read More Read Less
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