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Comment from: djoylong, 45-54 on Treatment for less than 1 month (Patient) Published: November 29

I am currently participating in a study using this medication for Fibromyalgia. I take 2.25ml when I go to bed and 2.25ml 2.5 hours after I go to sleep. To date, this is the only medicine that truly helps me with my sleeping problem and relief from muscle weakness and fatigue.

Related Reading: fibromyalgia | fatigue

Comment from: Sir-Sleeps-a-lot, 25-34 Female on Treatment for 6 months - 1 year (Patient) Published: October 26

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 that I just go to sleep immediately otherwise I'm stuffing my face with junk food. Also, the boosted metabolism causes overheating and sweats during the night. Doesn't happen every night but it does once or twice a week for me. Another important tid-bit. It really has the tendency to reduce inhibitions, hence the "date-rape" abuse. One girl mentioned really wanting sex after taking it, I get that too. It's best just to take this medicine and immediately go to sleep. MOST IMPORTANT: This medicine does NOT give me energy. HOWEVER, it forces me to maintain a repeatable sleep schedule even on weekends. That itself has been the greatest help. I still take two 30min naps daily, at 12:30 and 5:30. I set an alarm so I don't sleep longer. At night I sleep 6-6.5 hours. Any more and I am sleepier during the day, it's odd but true. Too much sleep makes my EDS worse. So all in all, medicine helps maintain quality nights sleep and a consistent sleep schedule. Combined with 2 daily naps my quality of life is as close to "normal" as it ever was. Only downside? Having to maintain that sleep schedule. One wild night out and I am extra tired for the next 4 days, even if I go right back on the schedule. Hope this is helpful

Related Reading: narcolepsy | rape

Comment from: KittyB, 35-44 on Treatment for 6 months - 1 year (Patient) Published: March 08

Before taking Xyrem, my life consisted of sleeping 14-19 hrs a day. Even when I was awake, I couldn't was like I was in a coma fog. I was also misdiagnosed with severe depression; was prescribed over 32 different prescriptions (non w/ success and all w/ bad side effects) and even did ECT treatments. Nothing worked, and privately I never felt depressed...just tired. I cannot tell you the hell that those years were. But now that I've been properly diagnosed (15 years later) and treated...I've got my life back! I have awoken from my coma. I now smile all the time, sing in the shower, and look forward to being around my family. I'm awake during the day and sleeping at night! I'm even going to nursing school...a true miracle. I'll never forget what my doctor told me when starting Xyrem: "Welcome back. Once again, you are apart of this world, and this time it's going to be awesome." My doctor is right. Oh...I do have a couple of weird side effects. After taking my first dose I awoke to find that my "barely B" breast size had grown to a "double D." The DD's seem to be permanent (and I do miss my barely B's). Also, w/o even trying, I've lost 35 lbs, and my finger nails are growing strong and fast for the first time in my life! For the first 4-5 months I did have pretty bad dry mouth, but for the first time in my life the treatment was worth the side effect. And, after six months the dry mouth was gone.

Related Reading: xyrem | coma | dry mouth

Comment from: kogeliz, 25-34 on Treatment for 1-2 years (Patient) Published: October 28

I have narcolepsy. Xyrem helps me get my real deep sleep and I can actually wake up on time to my alarms. This is amazing for me since I have never really felt how normal people do (ie: well rested). It IS a pain to get used to waking up in the middle of the night for the second dose... but worth it.

Related Reading: narcolepsy

Comment from: Melinda, 25-34 on Treatment for 6 months - 1 year (Patient) Published: February 25

Before taking Xyrem, I had difficulty falling asleep, staying asleep, and getting enough deep sleep. Xyrem has changed that for me. I have not experienced the side effects that many have. I think this is because my doctor and the Xyrem support system were very careful in recommending dosing levels, and I carefully worked up to an effective does. There are many terrifying stories about this drug, and one needs to be careful when reading about them. I've been taking Xyrem for several months, and I've lost weight and feel much better. I now get enough sleep that I have the stamina to exercise. Of course this medication isn't for everyone, but when researching this drug, the prospective consumer should carefully examine the good reviews along with the bad.

Comment from: 72627262, 25-34 Female on Treatment for 6 months - 1 year (Patient) Published: October 17

I am very satisfied with the drug; in fact I can say it has changed my life. The issue is I can not live without it. I am not physically addicted to the medicine but if I don't take it, I can't sleep. I work for myself and if I ever get dropped from my idividual carrier it could be disasterious.

Comment from: Montego, 45-54 on Treatment for 1-2 years (Patient) Published: October 30

I have narcolepsy and have found that this drug, along with short scheduled naps during the day, has changed my life. However, the larger the dose, the more effective the results.

Related Reading: narcolepsy

Comment from: 45-54 on Treatment for 2-5 years (Patient) Published: May 28

I was taking for Narcolepsy for 3 years. Was on max dose, never slept after first dose, but did after 2nd. ONLY time I get a refreshing sleep! I have recently had to stop this med due to severe side effects of depression and suicidal thoughts, symptoms went away like magic after 2 days off drug, but now EDS and SP/HH are back. Love the drug, and it worked great for a while - but please be on the lookout for depression side effect.

Related Reading: narcolepsy | depression

Comment from: [email protected], 25-34 on Treatment for 1-6 months (Patient) Published: April 08

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 before this and now my life is gone. Please stay away from this medication. It has caused the same kind of brain problems as if you were involved in a horrible car accident.

Related Reading: coma | insomnia

Comment from: Terri, 45-54 on Treatment for 1-2 years (Patient) Published: March 24

In '06 I crashed and burned, and went to a sleep clinic. After 9 months of sleep studies and eliminating everything else, I was diagnosed with Narcolepsy. I began taking Xyrem in March '07. The first morning I woke up EARLY and feeling more rested than I could ever remember feeling!! I have always slept more than anyone I knew, and have done so my entire life. No more sleeping 18+ hours a day and not functioning the other 6! To get a good 8 hrs of sleep, it takes 3 doses; 3.75gm each, but WELL WORTH it. I don't really even have to set an alarm. When the meds begin to wear off, I wake up! I awake about 2 hrs after the first dose and 3 after each of the others. My biggest complaint is the high sodium content. Would NEVER want to go back to where I was without Xyrem!!!!

Related Reading: xyrem

Comment from: donna, 35-44 on Treatment for 6 months - 1 year (Patient) Published: March 12

i have fibromyalgia. I could never get to sleep, stay asleep, or wake up rested prior to this drug. Now I am a co-director for a large deveoper, very busy daily schedule, and i can honestly say finally i can keep up. And more important "get up" in the morning. Donna

Related Reading: fibromyalgia

Comment from: 25-34 on Treatment for 1-6 months (Patient) Published: July 15

I began taking Xryem after being diagnosed with Narcolepsy about 5 months ago. After about a month or so of taking 2.5 to 3 grams 2x per night, I noticed I really started losing interest in just about everything, finding joy in nothing. I decided it must be the Xyrem, so I didn't take it one night & the next morning I immediately felt better!! I knew I still needed the deep sleep that Xyrem provided, so I then took it upon myself to take 3 grams only once/night. It has worked out wonderfully for me. I get to the deep stages sleep and wake up feeling well rested (most of the time), usually before the alarm goes off (I've NEVER done that.)I actually feel "normal", which I haven't felt in a very long time. I don't know if it's related to Xyrem or something else, but I have also lost 25lbs without dieting or exercising. The only thing I can figure is that by actually getting the deep, restful sleep my metabolism has begun to function normally.

Comment from: sleepytymegal, 65-74 on Treatment for 1-6 months (Patient) Published: January 20

Took for 3 mos. Had maybe 3 great nights of sleep. Usually no sleep first dose; instead very painful restless legs, jaw and sometimes chest pains. Felt heavy and virtually paralyzed. @nd dose sometimes gave a few hours of sleep. Not uncommonly, there was NO sleep all night, but lots of dizziness, headaches, shallow breathing, pain, and semi-paralysis. Others report wonderful results. Wish it were so for me. Tried it in hopes that Narcolepsy would improve..

Related Reading: dizziness

Comment from: sunshinesherry, 65-74 on Treatment for 5-10 years (Patient) Published: May 23

I was diagnosed by Mayo Clinic at age 16(now 72)so have suffered with narcolepsy with cataplexy nearly all my life. I've taken most of the meds prescribed for it butnothing has worked as well as Xyrem. It is truly a miracle drug for people with this disorder. The cost is now over $5500 per month and I can only afford this as I am on Medicare Part D insurance for seniors. In the five years I have been on Xyrem it has gone from $900 per month to the current price. Since it is an orphan drug, the mfg. can keep raising the price with no limits. I cannot function without this med and hope and pray that I will be able to continue on it for the rest of my life. I feel badly for those who cannot have this kind of relief because of the cost. The side effects are nothing compared to the wonderful benefits this amazing medication provides. Being able to get a good night's rest and wake refreshed is priceless. The control of the cataplexy it gives is better than anything else on the market and I can even watch a funny movie now. You do have to be careful when you take it as it so very powerful and I have had whole body spasms when falling asleep as well as dizziness getting up to go the bathroom. The munchies have caused me to do "automatic behavior" stuff and eat between the two doses with hardly any memory later of doing so. I still take 3 naps a day and drink lots of coffee but my life is better now than it has been for years. Thanks to those scientists and researchers who discovered Xyrem from us who suffer with this mysterious and disturbing illness. You have given us back what we thought we had lost - a life worth living!

Related Reading: narcolepsy | xyrem | dizziness

Comment from: laurieNC, 45-54 on Treatment for 1-6 months (Patient) Published: May 12

This medicine has helped my with my fibromyalgia pain by reducing my pain from a daily 7 out of 10 down to a 2 out of 10 on the pain scale. I wake refreshed and rested. I take less pain meds during the day. No other medicine has worked for me like Xyrem. Warning - Take this medicine while in bed since it is fast acting.

Related Reading: fibromyalgia

Comment from: AshleyKJ, 25-34 on Treatment for 1-6 months (Patient) Published: December 29

I took this med for a few months, and it truly did help me with my narcolepsy. I was able to fall asleep and stay asleep, 2 things i hadnt done in years. However, I had the "midnight snack" attacks as well, and that was eventually frustrating enough that i asked not to take it anymore. However, I have not been able to take any other drug with effects nearly as posistive and the Xyrem. Even large doses of xanax don't always put me to sleep, and then you have that "hangover" feeling the next day from taking so much, which totally defeats the purpose when you have narcolepsy. So, while Xyrem is not for everyone, if you can handle the side effects, I would definitely say go for it!

Related Reading: xanax

Comment from: Janet, 45-54 on Treatment for 6 months - 1 year (Patient) Published: September 19

I was taking this medication to treat Narcolepsy. At first I thought I had finally found the answer to my sleep problems. Then I gradually developed full blown psychosis, depression, hallucinations etc. It was REALLY bad.

Related Reading: narcolepsy | depression

Comment from: 19-24 on Treatment for 1-6 months (Patient) Published: July 20

5 months on this doctor says I just need to work my way to the full dosage before I see any improvement. I honestly hate this medication. I started on 2.5g 2x/night and am now at 6g 2x/night (actually, I never wake up to take the second dose). The side effects are frustrating and humiliating. I've wet the bed twice, slept walked several times, and vomited a couple of times. What's worse is that while on it, I'm catatonic. I can't move whatsoever when awake. The educational materials state that in case of emergency the patient can get out of bed, but I don't buy it. I had once gotten out of bed stupidly after a sleep paralysis attack before the medication took full affect. A couple of moments later, I couldn't move. I was in and out of consciousness, but could not get out of my seat. My panicking sister was there to make sure I didn't fall out of the chair, but I was in this state for over an hour. That said, the folks at the "Xyrem Success Program" are useless. No help there. I wake up feeling groggy and terrible in general. It's just more hassel than its worth. I had high hopes for this one, but I've seen nothing that could be deemed "beneficial".

Related Reading: sleep paralysis

Comment from: 35-44 on Treatment for 6 months - 1 year (Patient) Published: October 15

I have been on the medication since late April 2007 and felt that it was a God-send, however every 6-8 weeks, I need to call the doctor for an increase in dosage as I begin waking up in the middle of the night unable to fall back asleep. I am now past the maxium recommended dose and not feeling any effects any longer. I fear that I will need to stop the medication and possible switch to a sleeping pill, which may or may not have the same positive effects that I started with the Xyrem. For the few months that it was effective, it worked VERY well and was a positive in my life.

Comment from: Kate, 25-34 on Treatment for 5-10 years (Patient) Published: January 23

Over ten years ago, I was diagnosed with narcolepsy. I was always sleepy, barely functioning. The first six weeks with Xyrem were difficult, but the side effects dissipated as I adjusted to the medication. I've now been taking this medicine for about 9 years (at the 8g/night dose). I've had two adverse reactions in that time. Once I woke up feeling panicked and with tightness in my chest - that was pretty awful. Another time my husband couldn't wake me up the next morning... He monitored my breathing; I slept an extra 3 hours and then was fine. My hunch is that I accidentally took the medicine twice more in the night instead of once in the night. I now make my two nightly doses and then put the bottles in our safe so I can't accidentally overdose. I do sometimes have middle-of-the-night confusion or mild nausea. These are well worth being able to sleep - without this medicine my brain never shuts off! Thanks to Xyrem, I no longer take any stimulants during the day. I'm still sleepy at times, but able to function and clear-headed. I do have recurring issues with depression and anxiety. These problems started three years into taking Xyrem and after I had my first child. I'm not sure if the depression and anxiety are related to this medication or to the hormonal changes that occur in pregnancy. I take Zoloft and sometimes add something for anxiety during periods of high stress. I took Xyrem during pregnancy twice and both of my children are healthy with no known adverse effects. No guarantees, though - talk to your doctor if you take Xyrem and are thinking about becoming pregnant!

Related Reading: narcolepsy | xyrem | depression

Comment from: fibropatient , 35-44 on Treatment for 1-2 years (Patient) Published: January 08

I have Fibromyalgia and do not sleep deep enough, stage 4 Rem. I have taken this medication for a least a year , on and off. My muscle spasms and pain level are greatly reduced when I am taking this. This medication has such a stigmatism from people misuse, however taken properly and under medical supervision it can help greatly.

Related Reading: fibromyalgia | muscle spasms

Comment from: themominator, 35-44 on Treatment for 6 months - 1 year (Patient) Published: October 01

I have been on this medication for 6 months and have slept better then ever. xyrem causes numbness,dizziness, your legs and arms fall asleep and you get the pins and needles feeling. these are all normal side effects of the drug but they can be very scarry. It is not for everyone and I hope these effects dont increase or worsen because the sleep is wonderful !!!

Related Reading: xyrem | dizziness

Comment from: GRANDBUBBA, 65-74 Female on Treatment for 6 months - 1 year (Patient) Published: January 24

Mine was NOT just handed out, and the MD did not just wash his hands of my case. I underwent extensive testing and two sleep studies. I had tried Ritalin, Adderall, up to SIX Amphetamine tablets a day, all to no avail. You name it and I have taken it. I have had several wrecks, one even on Interstate 20. I do not even need the pillow alarm clock that the company furnished because I wake up at almost the exact time every night for the second dose. It is there by my bed ready for me to take. I wake up at 6:30 AM and am wide awake. I jump out of bed and am ready to go. Previously, I slept until about 11:00 AM and then took long naps all day long. I was afraid to drive anywhere. All of the people at the company are so very nice, genuine, and gracious. It is expensive, about $1,600.00, but with my insurance I have to pay only $40.00. I am so sorry to read about the people that have to pay the full amount. That is a disgrace in The United States of America. I still have 1022 characters left, and I could use everyone of them telling of my wonderful experiences, but it is 11:00 PM and I must run and take my first dose and start sawing logs. Pleasant dreams to all of you that take it, and don't let the bed bugs bite. God Bless.

Related Reading: ritalin | adderall | amphetamine

Comment from: MaleaCpr, 35-44 on Treatment for 5-10 years (Patient) Published: October 27

I have been taking Xyrem since 2004 for Fibromyalgia. This drug is a miracle for me, and my doctor also believes it is the main key to my treatment. I am closely monitored by a pain specialist monthly, due to multiple medications. I have had no side effects or problems with its use. I did get pregnant in 2005, and luckily, the Fibromyalgia went into remission during my pregnancy, and I went off of the drug with no withdrawal symptoms or other adverse side effects. Unfortunately, as my doctor predicted, it came back with a vengeance after the birth of my daughter, and I have been back on the medication ever since. I get good sleep for 4 hours, wake up like clockwork, take my 2nd dose, and get my remaining four hours sleep, and wake up refreashed with to drowsy after effects. According to my doctor, this is becuase Xyrem is metabolized through breathing, and bypass the liver unlike most other drugs, so it exits the system much quicker (thus the need to take a second dose halfway through the night). I have noted that without Xyrem, I sleep much more and experience much more fatigue due to the fact I do not get the proper type of restful sleep, as most Fibro patients have many waking episodes during the night, most that they are unaware of. Because of this restful sleep, my muscles get time to heal, and it decreases pain during the day as well. My doctor stated that she has had much success with this drug with all of her Fibro patients, and I highly recommend exploring the options of this drug to anyone suffering with Fibromyalgia. The only bad side I have found is the cost of the drug-it is downright criminal. My insurance switched briefly to a copay of 50% of retail, and i had to pay nearly $400 per month. The cost has gone up significantly even since then, luckily my plan changed, I would not be able to afford that now, and it was a hardship then--but that is how worthwhile this drug can be for the pain, fog, and fatigue of Fibromyalgia.

Related Reading: pregnancy | liver | fatigue

Comment from: CSSW, 25-34 on Treatment for 5-10 years (Patient) Published: September 24

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 may just be pleasantly surprised!

Related Reading: ritalin | provigil | xyrem

Medical Editor: John P. Cunha, DO, FACOEP

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