Hi everybody!!!
I need some input on treating my narcolepsy. Provigik doesn’t seem to help, adderral makes me mean and chives me nightmares and Ritalin helps a little but gives me bad jitters. I’m looking at taking Xyrem but would like some feedback. Thank you guys!
I got a side effect from Xyrem so I don’t take it, but for at least a few people here, Xyrem is the answer. Good luck!
Xyrem is the first drug remedy I tried. Several things about it were helpful - close monitoring by my doctor and the pharmacy dispensing it, my eyes looked alert (no matter how much or little sleep I get, my eyes always look droopy), and food craving went away. However, By week six, I'd developed an alergy to it. I wish it had worked. I take nuvigil now with some success - more energy for about nine hours and some lessening of food cravings. I hope zyrem is works for you.
Lol I just read this post from my computer now and realized how many spelling errors I had!!! I am so sorry you guys! My new neurologist is pretty good its just when I had mentioned to her my experiences with the other meds and how I was researching Xyrem she kind of just went with it and didn't even realize it was on the special program. Now I am just waiting for their pharmacy to push things through. Thanks for the input you guys!!
Hi :) It's been a while since this was posted and youv'e probably already started on the program, but just wanted to offer my input on the subject. My doc suggested xyrem to me once, and being a former EMT, and also someone that does way too much research, lol, I was quick to give her a big "No Thank You."
Xyrem is the same thing as GHB, also known as the date rape drug. It has been illegal for quite some time, but recently was legalized for the study and treatment of people who are diagnosed as having narcolepsy with cataplexy. It was made legal for the treatment mainly because of the success of treating cataplexy in patients during the studies. It is addictive, and very dangerous if not highly regulated and the person taking it is not highly educated on the drug and under close watch. Also, as in Tacp Girlfriend's case, it is not uncommon to wake up the next day to find that your body had an adventure without you. People have been known to do a wide variety of things while "asleep" after taking Xyrem, including driving! The list goes on and on of all the potential negative effects of this drug. It reminds me of how ppl with drug addictions are treated with methadone. Methadone!? seriously? lol (another subject not to get me started on, haha)
On a more positive side of it, xyrem has also been described as a "miracle drug" by some, and I hope this is the case for you as well. Just be careful and keep up your research.
Thank you guys both for the input. I have indeed started the meds and we’ll to say the least it’s been an experience. I’ve had panic attacks, numbness and I keep waking up panicked and my equilibrium way off. My Dr increased the dose thinking the lowest was trying to do the job and just not getting me there but I’m still waking up and I feel no better during the day. I just want to find something that doesn’t leave me completely exhausted all day. I think it’s time for another try of something else. Thank you guys again.
Hi narcolepsy community, sorry I don't get on here much. I'm a narcolepsy advocate and a very active member in many facebook groups. I am also an administrator of a private xyrem support group on facebook where we have over 250 members that have found xyrem to be their miracle drug. It's not for everyone , but everyone should be entitled to judge for themselves. It is ghb, and there is a max dose limitation that you will be made aware of ( not near the dose that has been known to sedate in date rape).It is known to be addictive among people without narcolepsy but this is not so for people with narcolepsy due to our lack of orexin/hyprocretin peptides which play a critical role in drug addiction.
I am 3 years taking xyrem and I won't pretend it was an easy road starting out. Adjusting to find my therapeutic dose took over 14months. Titrating the doses quickly usually result in side effect. Higher doses aren't always the most effective. Trial and error and patience seems to have the best success in treating nArcolepsy for someone with no underlining health issues. Friend me on Facebook with a message if you would like to join the group. I wish you well
Elaine xx
Hi I just wanted to add a little to all of this I’m currently on xyrem going on about 6 months now and I will say it has made my life a little bit easer not dramictly but it does help when I wake up I get right up and feel good but the rest of the day is still a struggle I do take adderal,riddalyn,and nuvigal as well throughout the day but that only helps me mask my exhaustion I know it’s going to be a long road but I’m optimistic that it will get better my dr says my daytime sleepiness is very bad when I got my test my average for my naps was I would fall asleep on average at 7.4 and I would actually hit my rem at 7.5 which is pretty bad I’m told my wife has a hard time understanding just what a struggle everyday is but as I said I’m hopefull that it will get better and xyrem has been some help
@ Tacp Girlfriend.....are you on Adderal XR? I used to be on that type myself and it didn't work very well. My doc finally put me on a lower dose of the non XR kind, and it works great. The XR type just doesn't let enough into your system at once, instead just bit by bit through the day, and it really isn't enough (in my opinion) for someone that has narcolepsy.
@elanie armstrong You are right about narcoleptic ppl being less prone to addiction, but I think it's important to point out that the level of deterioration of hypocretin producing neurons is different from person to person. Another thing to point out is that while low or non-existent levels can keep a narcoleptic from experiencing a physical addiction, it makes no difference when it comes to mental/emotional addiction. Furthermore, the brains reward mechanism is also not affected by hypocretin levels, therefore making addiction quite possible in narcoleptics.
Also, everyone's tolerance is different, so even though you are right about the administered dose not being near the dose that has been known to cause a comatose state, even the smallest dose possible can still cause that effect on certain ppl. I think that this is especially the case for us narcoleptic folk. People with narcolepsy have been known to have extreme and sometimes unusual effects from sedatives, tranquilizers, hypnotics, and stimulants. Due to the sleep/wake cycles being all screwy, something as mild as a Xanax can put us in a comatose state for a short time, while sometimes something as strong as meds used for anesthesia can't put us out. In a small number of cases, ppl with narcolepsy have experienced instant sleep attacks from taking certain kinds of stimulants. I'm sure, however, that the program is safe and there's no denying that Xyrem has had wonderful and positive results. I think it's wonderful that is has worked for you and that you are actively giving your support as well. I agree that ppl should be entitled to judge for themselves and though I can be a skeptic at times, I wish and hope for the best for anyone giving it a try.