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  1. Xyrem, Is it worth it?

    Hello, I was recently diagnosed with N w/o C and was put on 250mg of nuvigil and 6g/night of xyrem. I started the nuvigil a week ago and it felt like a miricle drug for the first 4 days. The fog was lifted and I realized exactly how tired I was. My memory was actually functional, I was alert, and was full of energy. I did have dry mouth and headaches, along with problems trying to sleep the first night. After what seemed like a honeymoon period everything kind of balanced out. Not as strong of positives, but essentially no side effects. I'm back to my old tired normal by the afternoon, but Im very grateful for the temporary wakefulness.  I expected the xyrem process to be very lengthy, but I received my first shipment yesterday (8 days after the process started) my insurance coverage is definitely an issue, but they gave me a free month supply to try it out. So last night was my first night taking it. It definitely not as bad as I expected, but it wasn't enjoyable. Tasted like ocean water. I  prepared both doses, kicked back the first, then immediately laid down. I didn't want to crack my head open lol. I don't know how much time passed but eventually it felt like I was on a roller coaster and next thing I know I had kind of a jolt and woke up knowing I needed to take my second dose. It was 5 hours later, so an hour later than than I was supposed to wake up. I set an alarm and I have no memory of hearing or turning it off, but I was just glad that I woke up at all to take it. With the second dose it was a lot more nasty, and I had the same roller coaster feeling and I'm pretty sure I fell asleep, but definitely had the spins. I woke up 2 hours later and puked, then went back to sleep. Woke up in the morning 3 hours later very dizzy, almost like being hungover. I just laid there for an hour and couldn't go back to sleep, but was not ready to move my head. But the kids were up and running around so I took the nuvigil and got up. The naesea lingered for another couple of hours but seemed to go away. But then I felt something that was very disturbing, or I guess didn't feel. It seemed like my personality got sucked out of my body and was just a hollow shell. I've been depressed before, and this was not it. It was pure apathy, I just didn't feel emotions. I'd see my daughter laugh and play and felt nothing, I'd see the baby boy crying and felt nothing, I'd have a conversation with my wife about some issues she's exeriencing and I was just blank. It's very tough to explain, but it seemed like my personality was gone. I was just very flat emotional wise. I'm typically very bubbly and personable with all smiles and cracking jokes and overall a happy person, with exception of when I'm having a sleep attack, which i guess is more often then not. But regardless I was still me. And with just the nuvigil it just allowed me to experience me fully. But with this feeling of nothingness I'm very concerned. My whole goal with treatment is to enjoy my time with my family and not sleep it all away or be too tired to play and have fun. But if with the Xyrem I'm rested, but a hollow shell, then I'd rather be tired. It's just simply not worth it. I was hoping that the xyrem could add something to my life, but instead it seems to make it worse.  With just the stimulant during the day it seemed to actually give me more life back. And I completely am aware that the body needs to get used to the xyrem and that could take some time, but this is just something I can't afford risking. I can't risk completely changing my personality to feel more rested. What's the point in that? I know this is a miricle drug for some, but I don't want to break my brain.  What's others opinions? Is it wise to try and stick it out and see what happens? Or does it make sense to just stick with the stimulant during the day and not try to complicate the situation?  Thanks for the read, I appreciate any advice. SleepySparky
  2. How Long to Give Xyrem

    After 10 years on Klonopin it stopped working for me and I switched to Xyrem. I've made it up to the 3 gm twice a night. Just had my follow up appointment yesterday and here's what I told my doctor: Xyrem works great sometimes, but sometimes I'm up 4 to 5 times if you count getting up for the second dose. Also, it sometimes takes much longer than 15 minutes to work. I've already discovered that I need 3 hours of no food for it to work and I've been doing that consistently (I can't do 4 hours because of my schedule). With the exception of a visit to my parents' for Easter (where I slept like a log) I've been consistent in bedtimes and behaviors. So my doctor increased my first dose to 3.25gm, scheduled a follow-up appointment in 6 weeks, and last night I had one of the bad nights. I don't think I can do this for 6 more weeks. My overall daytime sleepiness is a little improved, but those times I'm most likely to have a sleep attack are worse. I know Xyrem doesn't work for everyone, but why is it working perfectly for me half the time and sucking the other half of the time? And how long does it take for most people to see if it's going to work for them?
  3. Hi! I posted the other day about my new IH diagnosis. My first day of Provigil 200mg was nice - a little nausea but the head fog/heaviness was almost gone! I didn't get tired until late afternoon. But then I couldn't sleep - my mind wouldn't turn off. The 2nd day I took 100mg and half of a benedryl at night. The next day I had more daytime sleepiness, but slept better at night. Mild headache. The 3rd day I went back to 200mg- more awake day, but more headache, some general achiness and again couldn't sleep at night. Half way through the night I took half of a Benadryl and got some sleep. Today I am feeling tired (but not my usual fog/heaviness, just normal tired), headache and a little achiness. Since it is helping my EDS I don't want to give up hope. Just curious to hear if others have had the side effects settle down if they stuck with it. Thanks so much! Sleepymama
  4. Xyrem And Binaural Beats

    I have been on Xyrem for little over 4 years now, 4.5G x2/night, and for the past year I was having issues staying asleep especially on my first dose.  My doctor took me of Adderall 20mg x2/day, and switched me to Nuvigil, It helped a little but nothing to write home about.   After searching the internet for ways to increase the depth of my meditation I stumbled across “Binaural Beats.”  Binaural Beats are frequencies you play in each ear creating a third phantom beat.  Using my iPad with the free app called “Oscillator” I placed a 100hz. sine wave on the right side, and a 102hz. sine wave on the left.  Sure enough it created the third phantom beat of 1hz.    Delta sleep is in the range of .1hz to 3hz.  I created a mp3 that starts off at 3hz and tapers down to .15hz in a 1 ½ hours, and the remaining 1 ½ hours is at .1hz.  For the past 4 nights I took my 4.5G dose of Xyrem, and put on my head phones and turned on the Binaural Beats.    Guess what?  I have stayed asleep through both doses!  I was shocked, amazed, and extremely grateful that this experiment works.   I modified a pair of Koss KTXPRO1 Titanium Portable Headphones with Volume Control Sold by: Amazon.com LLC $17.44.  I placed the speakers through a head band making it more comfortable to sleep with.  You do not want to use ear buds, they hurt.   If anyone is interested in a copy of my BB.mp3 file just let me know, I will figure out how to use Dropbox.  It feels amazing to sleep again!!!
  5. Help With Xyrem Please

    Hello, I really need some help, guidance, advice about utilizing Xyrem. I can't seem to get it right. When I started the Xyrem at 2.25mg twice a night I had one or two days where I got up without an alarm in the morning, and felt great, and alert. But, then it wore off. So, then I moved up to 3mg twice a night, and the same thing happened: one or two days of feeling great and waking up without an alarm and then it wore off. So, I moved up slowly until I got up to 4.5mg twice a night which ended up being too much and I was just excessively groggy. Now, I'm back to 3mg twice a night and I still have yet to have the feeling of being able to wake up in the morning, without an alarm, feeling refreshed. I feel like Xyrem could work for me as it has a few times but I just can't seem to get it right continuously. Should I be giving it more than three hours between doses? Should I not eat more than 2 hours before the first dose?  Has anyone else had this inconsistent experience and found a way to be consistently successful?  I really want and need Xyrem to work because I have failed on Nuvigil, Provigil, Adderall XR at night, etc...   I really would value feedback from you all.   Thanks so much! Gili
  6. Xyrem-Adverse Reaction

    Hello Everyone,   I was wanting to see if anyone else has had a similar experience to Xyrem. I am so fustrated becasue the first few days on Xyrem I felt great and more awake. I started Xyrem on a Thursday April 4, 2013 for Narcolepsy with Cataplexy. The fist night I took my first dose at 9pm and set my alarm for 1am but woke up at around 12am and since it had been at least 2.5 hours I turned off my alarm and took my second dose. I woke up at 4am and could not go back to sleep. The next night Friday night I took my first first dose at 9pm and then again at 12:30 am and didn't wake up until 6:30am. I felt great the entire day. Same thing on Saturday but all day Sunday I did feel kind of looy and dizzy and had a headache. I had a huge professioal exam on Monday so I spent the entire weekend cramping for it. Also on Thursday, Friday, Saturday, and Sunday I drank two cups of coffee in the morning, and continue to take my provigil (200mg am and 200mg at 2pm). Also I had a constant dry mouth from the first day of taking xyrem so I had been drinking nothing but water and lots of it. On Monday is when things started getting bad. My night time dosage times and wake up times stayed to same. I had anxiety about my big test. I drank a cup of coffee and took my am provigil dose. I had anxiety, was dizzy, felt kinda jittery, my let ear was hurting on the inside, the left side of my neck and left shoulder hurt, my neck felt really stiff but I wote the neck and should pain off to having slept in a wrong position and being on Xyrem I slept so hard my body didn't wake me up to move. I was running around the house that morning getting the kids dress and fed and ready for school and I got so dizzy and felt like I was over excerting myself I got light headed and collapsed in my living room. I just had to stay there and calm myself down and breath. After it passed I was able to get up and continue on. When I was driving to take my text I felt like my whole equlibrium was off. The stopping and going and the cars getting closer and futher away was making me so dizzy. I had extreme anxiety the whole day and like I was over stimulated so I did not take my 2pm dose of provigil and my test started at 1 pm. I felt off my entire test but I passed with flying colors so that was good.  Because I felt over stimulated on Monday, Monday night I took my Xyrem as usual and on Tuesday moring I decided to not take my provigil to see if that would make a difference. I still had my coffee. I was still jittery, dizzy, had a head, still had my ear ache, and the left neck and shoulder pain. and the stiff neck feeling. The Xyrem nurse happened to call me on Tuesday to check in with me and I told her and then the pharmasist about what I had been experiencing. They said to talk to my doctor about the anxiety feeling but that all my side effects were normal except for the axiety. They were also concerned about me collapsing in my living room and wanted me to talk to my doctor about that too. So on Tuesday night I decided not to take my Xyrem. On Wednesday moring I had to drive to a town 30 mins away to pick up something for my husband. On the way I got sleepy so I took my provigil. On the way back I started to get really jitter and my hands started to shake. I started kind of freaking out so then I got really bad anxiety. By the time I made it to work which is also where my husband was. I called him to come get me from the parking lot. He took me inside to lay down. I could feel vibration through out my entire body in every muscle. My face was even vibrating and I could feel muscles in my back twitching. My hands and arms were shaking uncontrollably and I was so cold. I hadn't taken the Xyrem the night before. My husband was upset with me. He was already on the fence about me taking Xyrem. He was saying that all these medications that cause ups and downs that I was taking was not normal and I need to stop. I was so freaked out I agreed. My husband is a surgeon btw, but nothing to do with neurology or sleep medicine.  I haven't taken the Xyrem since I have been waiting to restart my provigil. I want all of the Xyrem out of my system before I start taking the Provigil again. I can't find anything on the internet about the side effects that I experienced. So I dedcided to post to see if anyone had any thoughts or similar experiences. The first few days on Xyrem I felt more alive that I ever have so I am so fustrated. I called my doctors office and spoke with his nurse and she relayed it to the doctor. The nurse called me back and said the doctor said to stop taking the Xyrem. I wish I could have spoken directly with the doctor but I guess I will have to talk to him at me next appointment. I have questions like maybe what I experienced was a drug interaction between Xyrem and Provigil and maybe I should stop the Provigil instead of the Xyrem. Maybe the two together is to much for my little body. I am a 27 yr old female 5'5 and only weight 104lbs. What do you think?
  7. Treatment Effectiveness Survey

    Hi,   I am a student from the UK creating a project analysing the pros and cons of various narcolepsy treatments, including the pharmacological, therapeutic and behavioural.   It would be a great help to my research if you could fill out this survey, giving your opinion on the effectiveness of the treatments and including any side effects you may have suffered. https://www.surveymonkey.co.uk/r/RLXSR33 Thankyou    
  8. Xyrem - Higher Dose, Less Sleep

    I started on Xyrem back in October. I titrated weekly and was tracking along nicely. When I was at 3.75x2 I was sleeping a total of 7 hours. I felt like a new woman. I figured when I got to 4.6x2 I'd get 8 hrs. Well that didn't happen. I got 5. My doc told me to go back down to the 3.75x2. Still at 5. So he had me go back to 3.0x2 and titrate weekly again. No luck. I'm still at 5 hrs. Is it possible that if I stick with it I will get better results or is 5hrs the best I will get. I do not have EDS on 5 but I also don't have near the energy that I had on 7 hrs and my weight loss has stopped although my eating habits have not changed. My doc is very willing to change up my doses as I think might work best for me but I just don't know what to do. Any suggestions?
  9. Xyrem And Munchies

    I have been on the Xyrem program for 4 years now  (4.5G x2.)  Over the last year I have been waking up after an hour or so on my first dose.  It feels like my body is screaming at me to get out of bed so that's exactly what I do.  Unfortunately, I feel the need to snack, and I compulsively overeat for a half hour or so.  I go back to bed and fall asleep then my silent alarm goes off for my second dose, and then I sleep till morning.   The problem is I have gained 15 pounds, I have no self control while I am an Xyrem.   Has anyone experienced this or have any suggestions?
  10. Damnit, My Xyrem Stopped Working !

    Hi there, although I'm a new member I've been lurking the forum for years .   Long story short , I've had a psychotic break/near death experience that lasted for about a year , that occured in 2013 . Although I'm over 90-95% of it, I'm still suffering a backlash in terms of constant to variable anxiety throughout the week . I've also haven't slept naturally since the event occured in 2013 . So basically my body's used to feeling anxious for so long that its the new normal and ditto for the insomnia .    I have a psychiatrist that I see 1x to 2x a month and am seeing  a good experienced therapist twice a week (both work in the same office). I want to sleep naturally again .    Anyways after trying multiple (sedating) anti psychotics , anti depressants, anti convulsants , 6  different benzodiazepines, z-drugs , antihistamines and belsomra , my psychiatrist decided to put me on Xyrem . I'm on the max dose of 4.5 grams twice nightly .The first two months were heaven, it truly was the holy grail . Absolutely zero side effects and completely unoffensive like a hypnotic benzodiazpine . The major payoff was that I was sleeping 8-10hrs a day and feeling soincredibly rested (like natural sleep since it only improves sleep architecture and induces natural sleep) I didn't need to take medicines like nuvigil and adderall to stay awake/function during the day and totally went off of the stimulants  . My physical and mental abilities were 100% again . Workouts were great with all the new energy and school went from difficult to moderately easy now that my brain was finally recovering at night .     Problem is that due to increasing situational anxiety due to school/(I guess how the near death experience makes me act to stressors ?) The  9g a night barely keeps me asleep for more than 3-4 hrs . The Xyrem pharmacist said insomnia people like me can use higher doses , as he's seen up to 13g a night . Problem is that the doctor said he will aboslutely not go past 9g a night . He will not Rx me any controlled CNS depressants with the xyrem (benzos, z-drugs , belsomra even friggin Lyrica is off the table) He's given me zyprexa since it has helped my anxiety and insomnia in the past however that antipsychotic leaves me with carry over sedation in to the day and dumbs me down (in an engineering science major) . The zyprexa does keep me alseep with the 9g of xyrem but I need a whopping 10mg to 7.5mg depending on my anxiety andstress level .    I want my perfect xyrem sleep back without out the annoyance of the antipsychotic addition ! the doc also tried adding 15mg of the remeron to the xyrem as well but that didnt work . hope therapy can help solve this but what do you guys think I should do for the meantime ?  
  11. Hi everyone,   I am new here and have been reading through the forums for a few weeks now, it's really been helpful for me and has made a few light bulbs go off when I've heard others describe things that fit my own experience. Basically, I have had sleep issues for many, many years that finally became so bad that it was affecting my health and my work; I'm never really asleep at night and have fits of extreme weakness/drowsiness during the day. I've tried every sleep aid, herbal remedy, and prescription under the sun and even wore 'blue light blocker' glasses in the evenings for two weeks. When the situation got to the point where I was actually physically ill and not able to perform my duties properly at work, I finally agreed to a sleep study, which took place last month, and two weeks ago I got the results - a diagnosis of narcolepsy with cataplexy. I have to say, I didn't see that coming, and I even argued with the doctor a bit. I figured the daytime stuff was due to how little sleep I had been getting, and for how long it has gone on. And I don't really think I fit the 'cataplexy' profile - I crash hard, but I can usually control it if I try, and it lasts longer than a minute or two when it hits, much longer. There's usually no apparent emotional trigger, except as I've thought this all over since the diagnosis, I can think of one scenario that fits - I cannot have an argument. I mean literally. In situations in the past where someone close to me has been extremely confrontational and gone on a verbal attack about something really important or life changing, even when I thought I was in the right and had a response, I remember literally not being able to open my mouth, feeling my face go slack, and fighting to keep my eyes open. So maybe it is cataplexy, in which case that has been going on for a good 25 years or so. As have the daytime sleepiness 'fits' in certain situations, if I am to be honest with myself; and that stuff long predated the nighttime issues. The doctor prescribed modafinil 200 mg. once a day and Xyrem 2.25g. I was very, very reluctant to take the Xyrem, I don't like anything that tinkers with my brain and don't have much trust in big pharma. But I was at wit's end so I agreed to enroll in the 'program'. I've been on the modafinil just over a week and the Xyrem for 5 days now, with mixed results so far. In some ways the modafinil has been a blessing, my mental alertness has been better than it has in a very long time, but it's like my brain and body are completely out of sync, and I've had worse muscle weakness, well, worse in that it's not nearly as severe but it's almost constant. It's nowhere near as extreme as the 'attacks' but my legs and arms don't feel like they are mine, if that makes any sense. I had scheduled a few days off work this week to start the Xyrem because I wasn't sure what to expect and was frankly terrified of it, but I started it early last Saturday night because of the muscle weakness and the fact that I crashed and had to take a 2 hour nap an hour after my modafinil that day. When I took the first dose, I had heart racing after I took it and it took me over an hour to go to sleep. I still woke up a lot but my fitbit tracker showed about an hour more of sleep - I'm not sure how accurate it is measuring real sleep but it's good for showing patterns of restlessness and stillness and I had significantly more of the latter than usual. Sunday night I woke up almost constantly, and Monday morning I felt terrible with nausea and chills, but it passed by the time I went to work. I'd thought of stopping the Xyrem till I could be off work, but once I got to work I actually felt better (except for the rubber legs) and more lucid  than in some time so I kept going. Subsequent nights were better, I've had no crashes since that nap attack last Saturday. But I wake up with headaches, and two days ago noticed my face was flushed and took my blood pressure - up at the high end of normal. I've been tracking it since then and it's stayed up, and yesterday morning I awoke feeling terribly jittery, with a bad headache and realized my heart rate kept spiking over 110 even when I was just sitting on the couch. I skipped the modafinil because I was already feeling way off, assumed the blood pressure and heart rate caused by the Xyrem (because of the sodium) as I hadn't had the other drug in over 24 hours, and called the Xyrem nurse. The heart racing and jitters faded through the morning but I was confused and zoned out and 'flat' the rest of the day yesterday. The nurse never called back and I took my Xyrem last night, figuring I'd see what the difference was with only Xyrem on board. This morning I felt pretty normal. My blood pressure was also back to normal for me. So maybe I blamed the wrong drug? Took my modafinil today as a test to find out for sure, and am calling my sleep clinic doctor. I will also call the Xyrem nurse line again, I guess. I suspect the dose I am taking isn't enough to suppress me waking up every hour or so, but it has helped some. I researched a bit more on side effects and found that tachycardia and hypertension are associated with modafinil in rare instances - and muscle weakness, as well as some other things I hadn't really associated with either drug, like the weird 'left side of my nose is running' and terrible backaches I've had the past week. Has anyone else had anything like this with ProVigil/modafinil (I am on the generic) and did you have to stop the drug completely or did a different dose help? I've been so much sharper the last week and even walking around on limp noodle legs, I have been able to accomplish so much more, I hate to lose that again, but I sure don't want to play around with messing up my heart! Thanks for listening, Wolfspider
  12. Weight Gain After Stopping Xyrem

    I just went off of Xyrem about two weeks ago after giving it a second try. My tolerance to the maximum dose built up to where it was no longer effective and I just had negative side effects so I've given up on the drug as an option for me. I lost some weight initially when starting it which I figured was due to not being able to snack in the evening. I've kept up my eating habits the same way since evening snacking isn't good for me anyway but I've still put on about 10lbs. My thyroid levels were recently checked and are within range so I know it isn't that. The only thing else that has changed is the Xyrem and I have been less active due to rebound cataplexy and being sleepier since going off the drug. I'm just now getting over the withdrawal aspects. I'll be in REM rebound for a while and cataplexy rebound as well, hoping those don't last as long as they did before. Oddly my appetite is on the lower side, I can't eat a lot at once so I try to have smaller portions through the day to keep up caloric intake.   Has anyone else noticed they gained weight from stopping the drug and had a hard time losing it again? I need to seriously get on this or I won't have any clothes left that fit me soon. I've gone through major weight loss (100lbs total) and already got rid of all my bigger clothes because I never wanted to go back to being as heavy as I was, both for health and vanity reasons.
  13. After spending 2.5 months on Xyrem I quit because the side effects were unbearable. It should be out of my system but I feel worse than I did before ever starting this medication. I've never been so exhausted in my life, EDS wasn't my primary complaint before. It was severe cataplexy. Now I'm sleeping off and on all day and night in an even more fragmented pattern than before and waking up feeling like I never slept at all. I can't tell when I'm asleep, that has always been a problem but now it's really causing issues. I've been going back into microsleeps and have missing chunks of time from my day. I'm forgetting entire conversations that took place, I find myself frantically checking my phone when I snap back from nodding off to try and guess how long I was out for. The REM rebound is slowing down a little, I keep having crazy dreams but they're not quite as vivid and I'm able to distinguish them from reality again most of the time. Cataplexy rebound has shown me no mercy yet.   I've also been hit with a massive wave of depression that came right at the time I stopped taking the Xyrem. I've struggled with depression since I was a teenager, about 12 years of this now. I noticed when on the Xyrem it helped my mood overall. I felt better and had words for feelings I normally didn't. Now I stopped and there was a huge plummet. My mood hasn't been this low in years. I have no energy or desire to do anything nor the mental capacity to even focus on things long enough to care. Adderall just makes me agitated, anxious, and shaky when before it worked okay most of the time so I don't have my stimulants to fall back on and pull me out of this to get things done. I've tried lowering the dose, the low doses do nothing since I metabolize it too quickly.   Has anyone else experienced post Xyrem depression and how long did it last? What helped bring you out of it? My doctor suggested waiting a bit longer which I agree with. She wants me on an anti-depressant after this levels out which I really don't want to take. I just don't know what else to do in the meantime though. I'm trapped in medical limbo and have been for years, maybe I just hit the point of where I can't cope anymore because I'm not getting better. Ever since I went through cancer treatment in 2011 my health has continued to decline.   I'm not good at putting emotions into words but this soul sucking void hasn't hit me so hard since I was at my worst pre-diagnosis and not knowing why I could suddenly no longer keep up with working full time or even drive safely. My entire adult life fell apart and I backslid to having to completely rely on my parents again as if I were a child even though I'm 25. I really never wanted to be in this place again but here I am. I've never lived on my own, had a boyfriend, never even gone on a single date, or done any of the 20something milestones you're supposed to have hit at my age. Everything feels pointless. I've never met anyone willing to understand or accept my disabilities, to those of you with partners how did you bring up the subject? I feel like my total inexperience at this age now is more off putting to people than the disabilities sometimes. I know my style is unconventional leaning towards more gothic but I also know I'm not exactly unattractive and okay with admitting some vanity since I did go to school for cosmetology after all. I'm proud of losing and keeping off over 100lbs. Still I've never met anyone that showed interest in me. I don't have many friends and the ones I do have I rarely see due to scheduling conflicts, distance, and lacking driving abilities. I get out of the house once every few months to do something other than see doctors. Isolation already occurring has made this hit me much worse but at the same time, I don't feel like going anywhere when my mother is the only person I have to go do anything with and her health isn't 100% either.   I can't take SSRIs or SNRIs, they've never agreed with me and I don't like the concept of them in the first place. I don't want to medicate the bad side effects of another medication and be stuck in that loop either. The brain zaps when I had to go off of Prozac years ago were enough to make me never want to touch those again. Basically it feels like for all the good Xyrem did those few short weeks now it's making all my symptoms kick into overdrive and making my life hell. I wish I never tried this awful stuff. I've also been very anxious since now I'm off benzodiazepines as well. I don't want to go back on them but I will try a low dose of a longer acting one if I have to so I can keep myself more calm in general.   On top of all that I keep having severe GI flare ups, still waiting for my test results and to get scoped. I have no idea if that could be tied into why my mood has been so awful lately. I know that I'm not going to be feeling the best mentally when physically I've been so unwell but this level of apathy concerns me. I'm not so far gone I can't recognize this is a problem but I'm not motivated enough to do much about it either.
  14. I have severe full body drop cataplexy and multiple smaller attacks about a dozen times a day. I started taking Xyrem May 19th. The first month went well, I had more energy and no longer had full body cataplexy, just the minor ones and occasional knee buckling. About 3-4 weeks ago I started having very painful GI problems and a lot of nausea/vomiting which ended up with 3 visits to the ER total before I could finally get in to a specialist yesterday. The doctor ordered a slew of tests to find out where the problem is coming from. I'm having an upper endoscopy, colonoscopy, bloodwork, and being screened for porphyria. I talked to my sleep doctor as well afterwards and she said I should also wean off Xyrem in case the main culprits were side effects of the drug. Her recommendation was to try to cold turkey it and take Xanax as needed to ease the symptoms since weaning wouldn't work well if I couldn't fall asleep on it at 4.5g.   I haven't taken Xyrem for three days now. It feels mostly out of my system, there was a definitely withdrawal period but the worst was over by the middle of day 2. I won't go into detail but it was horrible. I've experienced opiate and benzodiazepine withdrawal before. Neither came close to how Xyrem felt but thankfully it didn't linger. Taking benzos didn't help ease many of the symptoms either which I found strange. My guess is that the GHB receptors were involved for that rather than GABA.   There hasn't been a major change in any of the GI symptoms, is it too soon to tell since I haven't been off the Xyrem for very long yet? I've also been very sensitive to light for a long time but the past month has been the worst. No changes since going off Xyrem. The main thing I noticed was I'm not as congested so I've been throwing up less mucus but not throwing up less frequently. Rebound cataplexy has kicked in full swing and I've been staying mostly in bed for my own safety since 7/10 times getting up results in falling down or into something and hurting myself. Staying in bed all day means I feel justified to sleep all day. I keep having vivid dreams and have had 15 HH and 4 episodes of sleep paralysis since I stopped Xyrem completely.   My main question is how long will the rebound of both cataplexy and the REM sleep happen? I never realized how much Xyrem did actually help keep me on a more regulate schedule and it had a larger impact on EDS than I realized as well. Now everything is kicked into overdrive and my symptoms are screaming at me. My nights are fragmented blurs between vivid dreams and waking up frequently to shift positions again. My pain level is higher too, Xyrem had an impact on the chronic pain I have enough that now it's gone I'm really feeling it. On Xyrem I only had to wake up once for my second dose and had minimal dreaming. I also would wake up already wired. This feels awful overall. Vaping cannabis helps a little but not enough. I don't have the supply but I could really go for a nice strong edible right now.
  15. My insurance seems to have a problem approving the cost of the Xyrem. It seems to have something to do with express scrip and the central pharmacy. I'm wondering if other's have had similar issues and how you resolved it. I've been talking to them for hours over the past 2 weeks and we don't seem to be getting anywhere. I'm beyond frustrated and just seem to get more and more tired. I'll take any advice I can get. Thank you!
  16. Xyrem And Opiates And Benzos, Oh My

    I'm in a bit of a tough spot and not sure what to do with my medications. I've been on Xyrem for two months now at 4.5g x2 night. It's no miracle but so far the pros continue to outweigh the cons.   Recently I've been having some severely painful GI problems and was prescribed 10mg oxycodone 3x daily as needed for pain after being in the ER twice within 6 days last week. For me this is actually a pathetically low dose. I had my appointment today about checking for P450 specifically CYP2D6 and CYP3A4 rapid metabolization and should have the results early next week. Fingers crossed there, I'd love to have medical proof I'm a mutant and not tolerant from frequent use. I haven't taken pain medicine regularly since last summer when I had my gallbladder removed but the oxycodone barely took the edge off and even then half an hour later I was back up to a 10 on the pain scale.   This of course red flagged as a severe reaction with Xyrem though regardless of the dose. I talked it over with my GI and sleep doctors, they both agreed as long as I'm not taking any oxycodone within 6 hours of dosing my Xyrem it should be okay. The third tricky part is I'm also taking xanax as needed for anxiety. Obviously I know better than to mix all of these at once but getting my doctors to agree to allow me to keep all three prescriptions is an uphill battle. I'm in too much pain to go without an opioid right now until I've gotten this mystery problem sorted out and treated. I'm finally at a point where I've comfortably adjusted to the Xyrem so going off of it would put me back at square one for dealing with N+C.   Has anyone out there successfully balanced a prescription for an opioid and Xyrem or is this considered the ultimate no no? I've weaned myself to the lowest dose of xanax I can tolerate without getting sick and will soon be switching to either the lowest dose of diazepam or clonazepam as a longer acting medication to finish my tapering and be off of the benzos for good.   I'm just not sure what to do because even though my doctors understand that as a patient I'm well educated and responsible with my medications this doesn't mean squat to the insurance company who has to cover their butts if anything happens. I don't want to choose between treating my current problem and halting my ongoing N+C treatment setting that back again or writhing in pain until my doctors can figure out what is going on in my guts causing all of this.    
  17. Treatment

    I have been on Xyrem (4.5g) twice a night for over 3 years now.  I was stimulant free for the first 2 years but things have changed over the past year.  I am having issues falling asleep or staying asleep on my first dose.  I feel that I have built up a tolerance to Xyrem but my doctor and the SDS pharmacist disagree.   Anyone experiencing the same issue?
  18. Trazodone - Am I Crazy?!?

    Nevermind, don't answer that.    I think the trazodone has turned on me too, along with just about everything else I've tried.  I realized last week that I was feeling worse with each passing day and that it was most likely the trazodone (which I started Dec '14.)  When I say worse I mean physically ill, emotionally off, random aches and pains (much worse than is normal for me), easily agitated, lethargic, bruising much worse than usual, and so on ad nauseum.  My psych doc had me increase my Zoloft and started me on Buspar after break-up #2, both of which helped dramatically with the acute depression and anxiety I was experiencing.  However, I haven't been able to shake the general malaiase, sometimes flu-like symptoms and the INSANE jaw pain.  I was also having a very difficult time at home and at work focusing, getting my documentation done and generally giving a sh*t about my job.  Plus, I was waking up between 3-5 am every night and taking a Sonata to get back to sleep which would give me about 2-3 more hours of decent sleep.  UGH. I have experienced zero relief from my EDS and I have not been able to tolerate any stimulants thus far, they make me depressed and weepy and sometimes even more sleepy and unfocused so there's not much point.  My sleep doctor was pushing for me to try Vyvanse but it's $220 out of pocket and I cannot take a chance that it won't work either and waste that much money I don't even have in the first place.  I sweartogod I can't win for losing.   Some days the realization that this may be as good as it gets is quite overwhelming and sad.  I'm not depressed, but extremely discouraged and dejected.  I really can't imagine how anyone works full time feeling like this.  It's a real kick in the pants that I finally found meaningful work that I enjoy that also kicks my ass on a daily basis.  Every day I think, why the f*ck did I spend all that time and money on grad school if I can't make a living doing what I love.  Never in my life have a wanted a Sugar Daddy but that sounds pretty dang awesome right now.  Just kidding.  Kind of. I have an appointment with a different sleep doctor on Monday for a second opinion or at least a second set of eyes (third if you count my psychiatrist.)   The last time I was at my sleep doctor I mentioned that this message board is the only place in the world that I truly feel understood and although that makes me feel sad too, it's also weirdly comforting.  She said that wasn't the first time she had heard that so I'm glad to know I'm not alone.   (p.s. I haven't been able to add a profile pic for months, not sure what's up with that.)
  19. Hi, this is my first post and I am sorry that it is going to be a wall of text and history!   quick context: I am 25 years old and a grad student that works part-time and also am doing a traineeship. I was diagnosed with narcolepsy in April after an overnight and mslt. However, I had an overnight before and my doctor suspected narcolepsy and started me on provigil before my second overnight and mslt (started provigil in feb sometime, my test wasnt until april). I really did not like the provigil because it did not really help with the eds at all, but did make me feel really uncomfortable, anxious, and really foggy. At the time, I was also on zoloft and buspar (although I admit I often forgot to take the second dose of buspar during the day because I never really felt a difference when I was taking it consistently anyway). I talked to my psychiatrist about weaning off the zoloft (and buspar) because 1. I was asked to not be on medication for two weeks leading up to the sleep study and 2. the zoloft made me gain extra weight above my normal weight. I was weaned off the zoloft and buspar just at the 2 week mark before the study and did not start them back after, which was the plan.   When I met with my doctor when the results came back (this is now the beginning of May), I reported that the provigil sucked for me and she prescribed ritalin as the next in line. I am prone to anxiety already, so she gave me the instructions "1 to 2 pills 1 to 2 times day" and to start with cutting the pills in half. I definitely am experiencing mood swings and anxiety, but the confounding variable is that I am also off the the zoloft and buspar for the first time since starting them over a year ago (and before switching I was on prozac for 4 years until it seemed to stop having much of an effect). I also had a really stressful May in general, so it is really hard to say if one of those variables caused more anxiety/mood swings than the other. I DO feel more awake on the ritalin, but it also wears off really quickly for me no matter if I take half a pill or a whole pill. There is a bit of a comedown, so I know that a chunk of my crappy moods is directly related to the ritalin. It is just hard to say that it is ALL from the ritalin or from the stressful month, not being on antidepressant/anxiety meds...oh I should mention I was not on the prozac/zoloft for depression, it was more for treating anxiety and an eating disorder that has not been an issue in the past two years (my "official" diagnoses  are social anxiety/social phobia disorder, anorexia b/p type [in remission], and now narcolepsy w/o cataplexy). I remember trying Concerta (I think that is extended release methylphenidate?) twice maybe 5 years ago and that I did not get anxiety and the awake-feeling lasted in one big long chunk, which was excellent compared to this very up and down experience I am having with regular ritalin. Right now I am taking half pills (5mg) twice a day, although some mornings I take a whole pill. Some days I try to not take it at all if I am already feeling anxious. It is the up and down that is the most frustrating for me and why I am curious about trying something that is extended release like concerta or adderall xr. I will likely have some anxiety either way.   Also, two weeks ago I started Xyrem. The normal 2.25 2x a night for a week, then 3g 2x a night for a week, and today marks the third increase (will do that tonight). I have not felt any difference yet as far as the eds with the xyrem. In fact, sometimes I wake up feeling EXHAUSTED. I am also dreaming like crazy, which is pretty normal, except that I am dreaming right until the moment my alarm goes off and that seems to be related to the days I feel especially tired when I wake up. I know I am still working my way up to the therapeutic dose, but am wondering how many people have experienced this?    I am meeting with my psychiatrist next week to discuss the anxiety and mood swings. I have an appt with my sleep doctor next month, but she encourages me to email her during the week if I ever need anything and also gave me her personal cell number. She has been very supportive and empathic, I think because she self-disclosed that she has narcolepsy with cataplexy and also said she has a history with an eating disorder as well when she was younger so she wants to make sure I have the support i need to be healthy and functional. She did warn me about the weight loss side-effect of both ritalin and xyrem, which I was aware of, and so weight monitoring is also going to be important because of my history of an eating disorder (although I mentioned it was in remission and I have not had issue with it in a long time).    So, any of this sound familiar to anybody?    Also, is anybody on a stimulant and an anxiolytic like xanax of ativan? or anybody on a stimulant and an anxiolytic AND xyrem? is that even possible (benzo + ghb = scary?).   Sorry if this was all over the place and again sorry for being so much text!
  20. My insurance requires a pre-authorization for every shipment I get which delays the shipment by a few days. Normally not a problem, I try to take a tolerance break every two weeks for one night so I have extra for situations like these. My doctor was out of the country for two weeks and due to some miscommunications at their office with the doctor on call I've been out of Xyrem for two nights now, my next shipment isn't able to arrive any sooner than Friday. Yesterday I felt a little off and haven't been able to sleep much.   Today it feels like I have the flu and has been progressively getting worse along with increased anxiety, tremors, sweating, nausea, rebound cataplexy, the works. I had a full body attack when my cat rubbed around my legs and was lucky to land in the carpeted hallway instead of on the stairs where I was heading. That's actually happened a few times, my cat will weave around my feet if he sees me going near the stairs so I end up falling in the hallway instead. Coincidence or do animals know that sort of thing and was he protecting me from potentially tumbling down the stairs by making me fall in a relatively safer place? Bruises and carpet burn beat broken bones or severed spines.   No matter how sleepy I get I can only nod off for a few minutes straight into REM and snap awake again. The automatic behaviors are coming back too, I'm missing spans of time through my day so I can't leave my bedroom out of safety concerns. I've stopped taking my stimulants so as not to aggravate the symptoms I'm already having. I called the SDS Pharmacy, they weren't helpful at all and just gave me the line of how this medication is not supposed to have any physical discontinuation symptoms but they would write it down in my notes and their brilliant advice was call my doctor, which I told them I already did and they couldn't rush my script any faster.   I've googled a bit of info on what GHB withdrawal involves and honestly I'm terrified now if this is going to get worse. I've been through moderate benzo and fairly severe opiate withdrawal before so I seem sensitive to abruptly stopping medications. Basically I'm asking if there is anything I can do to ease the symptoms besides the obvious, get my medicine back into my system. I have read that phenibut acts on GABA-b and can ease some of the symptoms but I would have to order it online, by the time that arrives I'd already have my next Xyrem shipment. I've tapered off the Xanax almost completely, I did take .5mg to help the anxiety but the last thing I want to do is climb back on the benzo horse when I'm finally free from it.   4.5g x2 has been working surprisingly well until this hiccup happened. I haven't had a single full body cataplexy since starting the Xyrem until I ran out. I'm no longer nauseous when I wake up and slowly adapting my routines has made a huge difference. Electrolyte imbalance seems to play a big factor in how long I sleep on my doses. If my potassium and magnesium are low I wake up feeling agitated within two hours. Epsom salt baths and drinking lots of coconut water for potassium I can consistently sleep 3-4 hours per dose. I've had significant reductions in chronic pain which has given me more energy leading to a healthier, slower weight loss through exercise. That isn't to say I'm not tired but it's much easier to push yourself when you're only tired, not overwhelmingly sleepy and hurting too much to get out of bed. Oddly most of the positive benefits of Xyrem have had nothing to do with my actual sleep but it's helping in other areas where nothing else ever has.   I can see how this stuff is garbage for improving sleep quality for a majority of people but my particular chex mix of conditions seems to have me one of the few wired correctly to see more positive benefits than negatives so far. 6 months down the line that could change but I'm trying to be optimistic and get through these next few days until I have my Xyrem again.  
  21. First Xyrem Experience, Strange Reaction?

    After waiting what felt like eternity to get the pre-authorization and have everything set up I got my first shipment of Xyrem and was started on 2.25g twice per night. I did everything exactly as instructed the many times both my doctor and the SDS pharmacy called me to explain it. My reaction last night left me feeling incredibly WTF about this drug. It did the exact opposite of making me sleep.   I had not eaten for 4 hours prior to ingestion. After 15 minutes it felt like I went from zero to on the ceiling. I wasn't sleepy or tired at all, I was actually restless and felt high, speedy, and hammered all at the same time. 30 minutes goes by and some intense euphoria came on. I was feeling so restless I actually had to get up out of bed and do something, anything other than laying there feeling only the effects of Xyrem because the feeling of the blankets was making me squirm. Tactile sensations changed, enhanced, and I felt obviously intoxicated but never out of control or having diminished motor skills. I put my headphones on with some music to fall asleep to. Bam. I knew I wasn't going to sleep now. The addition of music lit up something in my brain that triggered an almost overwhelming euphoria and increased the synesthesia I normally experience anyway. At the 3 hour mark the feeling was fading and I took my second dose. This time the same exact effects came on but even faster than before. I got back into bed to be on the safe side. At some point I fell asleep for about 3 1/2 hours and woke up wide awake as if I'd already taken my Adderall. 3 1/2 hours of sleep through the night is terrible even for someone without N but I was still wired until I started to crash about 2 hours later and then did take my stimulants. Normally I wake up extra early to pop my morning dose, fall back asleep, and actually get up when it kicks in and forces me to do so.   I'm giving Xyrem another try tonight but from everything I have read so far it sounds like my dose needs adjusted. Has anyone else had such a weird experience? I am not a stranger to psychoactive substances, I've been on dozens of different prescriptions before this and nothing has ever had an effect on me in this way. I've jumped through so many hoops to finally get this medication to try for severe cataplexy so I'm determined to stick it out until the cons outweigh the pros.
  22. Hello all,   I'd like to get some advice on dealing with appetite loss side effects of medications.   Background info: I was just diagnosed with narcolepsy last week. I made it all the way through engineering school without realizing it. I always assumed i was just sleepy or maybe a little spacey because I was so sleep deprived. I graduated and got a job working mostly as a field engineer, so I was in the sunshine walking around and working, and I wasn't as susceptible to the sleep attacks. Then I moved and started a normal 9 - 5 cubicle bound job, and my symptoms got a lot worse. I didn't realize that I had inadvertently structured my life and schedule to better cope with narcolepsy symptoms. Once i didn't have the freedom to nap 2 or 3 times a day for an hour or so, I started slipping into rem, experiencing automatic behavior, sleep paralysis, and muscle weakness more frequently and couldn't come up with any other ways to rationalize it. I went to a neurologist, got a clear diagnosis based on the MSLT results, got pills, and now I'm trying to sort out how to take them.    Here's a summary of how I reacted to nuvigil and how much I took:   Friday: I took 1/4 of a 250 mg pill and felt amazing. I honestly didn't know the world could be so clear. I actually had decent hand eye coordination, peripheral vision,  and short term memory- glorious!   Saturday: I took it in the morning and started to get foggy/sleepy around 2pm. I finished the activities I was working on, realized I'd pushed too hard, took another 60mg of nuvigil, got nauseous, and ate half a box of saltines and some jelly beans and felt better.   Sunday: I took 60mg nuvigil in morning and afternoon and felt roughly the same as saturday adn had a slight weird sort of headache.   Monday-Thursday: I took 60 mg nuvigil in morning, took another 60mg in the afternoon, and felt slightly panicked (with no rational cause) and sad and had no appetite. I continued this for 3 more days, trying to eat, tossing my cookies, trying to eat again, tossing them again until I wasn't sure if I could handle it any more. I don't do well not eating, I already eat like a vulture just to keep weight on, so going 3 days without really eating really wiped me out.   I went back to the neurologist, and he wrote me a prescription for ritalin, said it would also probably suppress my appetite too though and also gave me a prescription for provigil and said to see which worked better. So now I have 3 kinds of pills, I feel like I just got over a stomach flu, and I'm a bit overwhelmed.   I've read that a lot of people have to take some of one medication, some of the other, take a nap, never take a nap, etc. to cope with their symptoms. I'm going to play scientific method and try one medicine in a low dose, record what it did and how I felt for a week, then try another, that way I can try to isolate one variable at a time until I find a system or combination that works, but I have a feeling my biggest struggle will be with keeping food intake up and successfully digesting it.   Has anyone else struggled with the appetite loss side effect of nuvigil/provigil or stimulants like ritalin? What did you do to work around it? Do you have any special advice with someone who is usually slightly under weight?   I am willing to see if I adjust and these side effects wear off, but I really don't have 5 pounds to spare. Any advice about scheduling or diet adjustments to increase my successful calorie intake would be a great help.   Thanks!    
  23. Xyrem - Eye Pain And Blurriness

    Hello all!  I have been on Xyrem for about a year and a half.  I have made it through a lot of side effects.  However, eye pain and blurriness has just started to develop.  It will only be in one eye at a time and has occurred in both.  I am not sure if this is even related to Xyrem or something completely separate.  My doctor suggested that it may be related to the increase in sodium and reminded me to be mindful of salt in my diet.  With that advice, both the blurriness and pain got better, but I notice it from time to time.  I thought I would reach out to see if any of you have also heard about or experienced this.   Thanks in advance!
  24. Trazodone?

    Question about Trazodone.... I have been taking Xyrem for a year now and I have had a MAJOR issue with nighttime eating. To the point where I often do not sleep on the first dose because within five minutes my stomach is growling and I'm in the kitchen finding something to eat. I've talked to my neurologist about this and his APRN who I see more often because she manages meds, while he only sees me for the infrequent check ups, or if I'm experiencing a more pressing issue like a month long migraine that won't quit. Otherwise, seeing him is a rare occasion. Anyway, when I talk with him about this, or the APRN, their advice is to "simply lay down and go to sleep." Ohhhhhhh!!! THAT'S what I have to do?? Really?! All this time I thought that fighting it to eat instead was the answer.... I apologize for my sarcasm, but I found this less than helpful. I asked the doctor that if this continues and I just can't take it anymore because no matter how terrible I feel about myself afterwards, it is literally an impulse that I feel powerless to control. I do try, I really, really do, but when I'm on Xyrem I don't care about the consequences and the only time that I do is when the Xyrem wears off and my head is a bit more clear. I am ALWAYS aware that I am eating, I just don't care to fight the urge to go to the kitchen to have a snack. So I was talking to a friend who recently stopped taking the Xyrem for various reasons, and she mentioned that her doctor prescribed Trazodone to help her sleep. She says that it works well, so I went on Google and did a search for N and Trazodone, including these forums. I have read SOOOOOO many amazing reviews for this medication and its effect on sleep, that I am wondering if I should talk to my neuro about this. I even read a few scholarly journal articles about how it increases stages 3 and 4 slow wave sleep, and decreases sleep onset latency, REM, and stage 1 sleep. I'm super nervous to bring this up, because my neurologist has made it clear that Xyrem is the end of the road for treatment options. But I am really intrigued by Trazodone and I would LOVE anyone's input on this...have you used this for sleep? Does it help you get more restorative sleep? Do you have the Trazodone hangover the following day as most people have reported happen in the beginning when just starting the medication? And if you did have this grogginess the next morning, how long does this last? Does it go away as your body adjusts to the med? Thank you SOOO much, in advance!!
  25. Updated observations related to trying to balance medication:   This really long post is for anyone else out there like me who is just starting to try to treat narcolepsy symptoms with medication and having their wakeful parade rained on by side effects. Hopefully this helps you as much as similar posts by others have helped me.   So it turns out that the first week of throwing up everything I ate while taking Nuvigil resulted in me losing 6 lbs. I went back to the neurologist, and he seemed to think my nausea/appetite loss side effects were abnormal because it wasn't a stimulant. Luckily I found the narcolepsy network message board, and thanks to your helpful posts and advice I found out a lot of people have this reaction to Nuvigil/Provigil or stimulants like Ritalin, so I was able to move forward without getting too upset or discouraged.   My doctor prescribed Ritalin and Provigil in case the Ritalin wasn’t for me either and told me the max recommended daily dose of both and suggested that do some experimenting and try to see what works best for me.   To be better prepared to manage the side effects, I bought some really great weight gain powder & a shaker bottle w/ compartments on Amazon prime and decided to try a week of 20mg of Ritalin a day and then a week of Provigil 50 mg a day.   For this 2 week period and probably after, I’m eating breakfast in the morning before taking medication, eating light snacks in the afternoon, and eating a bigger dinner; I’m also drinking 850 cal of weight gain drink mix 2 times a day to try to get my 6 pounds back.   Week of Ritalin (Mon-Sat): Here were my observations:   -I wasn’t really wakeful, just not as likely to fall asleep   -no nausea, slightly upset stomach, and a slightly quickened pulse   -I felt like when you’ve had a little too much coffee-shaky and slightly alert in large doses, but it doesn’t make you feel better overall.   -It worked alright, but it seemed like it would require taking 25-30 mg a day to really clear up the fog and I would feel the same way as I do after 4+ cups of coffee.   -family members said it made me irritable. I think this has more to do with me trying to deal with the shock of the diagnosis and weight loss while still working full time, but they did mention it.   Conclusions: While it worked, it didn’t seem to do quite the same thing as the Nuvigil. It didn’t “promote wakefulness” as much as make me feel a bit mentally hyper and smidge shaky. It wasn’t ideal, but worked ok. I didn't lose any more weight   Week of Provigil (Mon – Wed so far):   I’ve taken 50mg of Provigil for 3 days, and while I suspect that I should probably take the full 100mg pill to feel alert all day, its working much better for me. I’ve been feeling more alert for the first 5 hrs of the day with no mental fog or fatigue.   Here are my observations:   -I’m not feeling as easily upset. Others seems to think I’m back to my normal emotional range too.   -I don’t feel at all nauseous. This maybe because I’m taking a lower dosage than the Nuvigil (50mg vs. 65mg)   -I feel just as alert and able to focus as I did while taking Nuvigil, but it’s not upsetting my stomach at all, and while I feel my appetite is slightly suppressed, it’s easily managed by putting timers on my phone and drinking the weight gain smoothies to compensate for the slight reduction in appetite.   -Due to being able to keep my food down and changes in diet, I've gained 1.5lbs back.   Conclusions: I think I can conclude that Provigil is the best option for me. I’m hesitant to take a full 100mg a day for fear it will result in unpleasant side effects, so I’m taking a short nap on my lunch break and standing at my desk for the rest of the afternoon at work.   I don’t think this would be the case for everyone, but Provigil does work better for me than Nuvigil or Ritalin, so if you’re having a bad reaction to one of them, it’s definitely worth trying the other!   Hope this helps some of you and thanks again for the help and support:)