Questions and Answers About Sleep
Xyrem
I'm looking for people who use Xyrem and to learn from them it's effects. I know it is helping many of you, but since it is GHB, I know about it's potential, addictive properties. I know of a few people that have had trouble with it and what to learn more from those who use Xyrem. I've been with ProjectGHB for 10 years and know all too well about the GHB dark side. Best Wishes, Roger
Replies to This Discussion
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Permalink Reply by Jacqueline H on -
I have been on Xyrem since December 2008. The only thing I have noticed different about myself that could be potential side effects isn't that drastic. I have had a killer post-nasal drip along with constant sinus issues and increased saliva production. I contacted the pharmacy that sends me my Xyrem about the possible side effects. Thats it though..........as I know of.
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Permalink Reply by Dan Hanes on -
I have been on zyrem for a few months and it seems to help some but is kinda difficult to use, and you need to be very strict about taking it and going directly to bed or better yet take it i bed and try to go to sleep asap. Dont want to be awake when its in full swing at high doese IMO.
The price is a killer it's to bad there is no alternative.
Despite taking different doses and stimulants during the day I still have frequent sleeping episodes. Jazz when I called them had no record of others having these problems. Anyone here take zyrem and not get the results they wanted?
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Permalink Reply by Jacqueline H on
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I didnt get the results I wanted but like Ive said before I was just releived to be off those stimulants! I had some pretty severe side effects!....But yeah when taking the Xyrem you definitely have to be lying there in bed. What time do you take your first dosage? Were you diagnosed with cataplexy also? I had some issues with cataplexy at first while I was on stinluants but since the Xyrem, I hardly have any episodes/attacks or whatever.
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Permalink Reply by roger jadosz on -
Yeah, it sounds that the stimulants weren't the meds for you. Isn't strange how one medication is a miricle for one yet the same medication could have devastating results for someone else. No, I don't have cataplexy. I'm just interested as I have been a long-time member/supporter of ProjectGHB. I believe everyone who takes Xyrem should check the Xyrem information on their web site- www.projectghb.org
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Permalink Reply by roger jadosz on
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Some people call it a miricle, while others others experience severe side effects including addiction, afterall it IS GHB (Gamma Hydroxybutyrate or sodium oxybate). It seems it is helping some people judging by the responses I see on this site and others. Thanks for your information and best wishes. Roger
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Permalink Reply by roger jadosz on
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Well, Jackie, I'm glad to hear you don't have anything more serious then that! How has it been working for you now that you've been taking over a year. Any other meds? What did the Xyrem pharmacy say about side effects. I appreciate your reply, I'm trying to learn as much from Xyrem users, hope you can continue to inform me. Roger RN
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Permalink Reply by Jacqueline H on
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They didn't say anything, they just made a note of it and told me to contact my physician about the side effects. It hasnt helped that much and Im on the highest dosage! Im not taking any other meds besides the xyrem. I was on two different stimulants before and they both caused serious side effects (hypertension, palpatations, etc)! So its a breeze to be off the stimulants, even if the xyrem doesnt yield the results I want. Im dealing with my narcolepsy the best I can with Xyrem, sleep management (daytime naps), social support, and last but not least...........prayer! My religion and relationship with God is a strong tower, my safe place.
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Permalink Reply by roger jadosz on
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I admire your courage and sharing your experience. You say you're at the highest dose, is that 9g/day? You sure don't want to go any higher afterall Xyrem is just another name for GHB (Gamma Hydroxybutyrate or Sodium oxybate). If your not comfortable with your present physician there are others. Being a RN I know a patient must be comfortable with their healthcare provider.
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Permalink Reply by Jacqueline H on
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No they told me to talk to my neurologist, the one who prescribes my meds for narcolepsy...and no I would never change physicians. I have, if not the best, one of the best Neurologists in the U.S. with accolades in sleep medicine. Im pretty well rounded in education, being a Psychology major touches on broad subjects in health, not just mental health. So Im curious as to why you, an RN, is so interested in Xyrem?....I mean its not like you have authority to prescribe such medicine of this magnitude and you're not a neurologist with any accolades in sleep medicine. Even a neurologist alone, knows nothing about Xyrem and sleeping disorders. They have to have studied in sleep medicine. I have many friends who are nurses who have "tried to tell me of things they have "heard" about people with narcolepsy and the medicine for it. And each time I have had to correct them because they were so off base..I mean what does a "nurse" actually know about sleeping disorders or the medicine at the least? Truthfully, the only people that really know whats going on is the patient with the sleeping disorder and the practicing Neurologist with the accolade in sleep medicine. No offense to you, Im not saying you think you know about narcolepsy or the meds prescribed. Im just curious as to your concern with Xyrem?...By the way 9g is the highest patients can go regardless.
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Permalink Reply by roger jadosz on
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My concern about Xyrem is that is another name for GHB (Gamma hydroxybutyrate or Sodium Oxybate) . I've been involved with ProjectGHB for 10 years now and I'm aware of the potential, negative side effects including addiction. To learn more, check out Xyrem on our web site. www.projectghb.org Roger
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Permalink Reply by Jacqueline H on
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Xyrem is not another name for GHB, the Xyrem medication is produced with the same things as the GHB. I hope you understand that the medicine and GHB are two seperate entities, only both contain sodium oxybate. GHB is a "drug" that people use and abuse for ignorant reasons. Xyrem is a "medication" to treat narcolepsy (cataplexy and EDS). This medication is FDA approved and plus there are 24-hour on call nurses for patients that take Xyrem. The dosage we intake is to help symptoms, its not an overdosed amount to yield serious damage. I understand your project, but the doctors and producers of Xyrem are on point with the patients. You may want to check newspapers and things of that nature if you're looking for overdoses and date rape cases along with other serious side effects.
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Permalink Reply by roger jadosz on
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I don't want to debate you, I sincerely wish the best for you and good health. We at ProjectGHB have worked with Xyrem users that have had some serious negative effects. Just want to raise awareness. Look at OxyContin. It is a great medication for moderate pain, until it is overused, abused, resulting in addiction. Be Well, Roger
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