I think for many of us, this is a miracle life changing experience. However the current cost as of Jan 2017 for max 3x bottles per month is $13,190.55 ($158,286.60 per year). On average, the cost goes up another $1,000 every year. Keep that in mind when making insurance decisions especially with high deducible plans. With revenue like that doesn't seem like there is much of an incentive for the greedy corporations to come up with a cure. So enjoy it while you can until you no longer have normal blood pressure and sodium levels. :)
Brilliant video - thank you! I'm recently on Xyrem and appreciate hearing about your experiences with it, as well as your account of the general ins and outs of living with narcolepsy. Merci!
Xyrem has been a life changer for Last sleep attack 2/28/2008 The thing that helps the most is a strict sleep hygiene 20:30 bed-04:30 wake up everyday no mater what. Thanks for sharing Good Luck and have a super fun day.
I've been taking Xyrem for 12 years and its been a godsend. I had just about every symptom of narcolepsy including acute cataplexy. Xyrem has resolved all the negative symptoms. I take 4.5 ml twice at night and also take Adderall daily. I haven't had a single cataplexy episode in the last ten years.
I was on Xyrem years ago, but the fact that I had to work to get med insurance then start on the cheap meds prior to being approved put me in a really bad place. I think the anxiety and dehydration/stress from stimulants had a negative impact bringing out side effects that I might not suffer under different conditions. I want to get back on Xyrem, but I'm not working & have no insurance. It's really amazing to see you took it for 3 years with success! I hope you're still seeing positive results.
Thank you for this. I started 3 weeks ago, and the side effects are kind of kicking my ass. So, thanks for helping me keep the faith! Maybe I will make it through law school after all!!!
I really appreciate your sharing this because I’v been nervous about starting Zyrem after my doctor suggested that I should start it, over two years ago. I’m looking for people that are taking the medication because I’ve been really struggling even with Provigil and dietary changes for a long time now. Thanks so much
Does anyone know if it has been used for Myalgic Encephalomyelitis which is as debilitating as Narcolepsy. Has anyone been given a prescription for this medicine off label. I read the FDA did not approve it for the use in FM/ME due to dangers of illagal use as scientific scientific studies show it worked for these patients. That would be so unfair if this medication helps with Non Restorative Sleep in Fibromyalgia/ ME or Chronic Fatigue Syndrome. Any feedback woukd be greatly appreciated. Thank you for this great video of information.
Extreme stress, fear, and anger triggers my cataplexy and other symptoms. I have stimulants but found it hard to get scripts written by new doctors, I had to find new ones when my drivers license was cancelled due to not being able to stabilize my sleep attacks. Life is so challenging without the right meds.
Try getting a three month prescription when you are travelling internationally. It's possible but the insurance company (understandably so) will have an issue. Takes a lot of time working with your physician, the Xyrem pharmacy along with the insurance company. If you are on COBRA, you'll have to pay premiums three months in advance.
Thanks for sharing your experiences! I have suffered narcolepsy w/ cataplexy for 25 years before I finally got the diagnosis and started to take xyrem two weeks ago. So far I have positive responses from the medication, but i keep wondering the long term result....
@@ladiesmandk hello, life's a bit too busy for me to do a follow up video. I stayed on Xyrem until this year actually, it remained a very good medication. I switched to Lumryz to have once nightly dosing which has been a real gift. There are pros and cons to all meds but I find both very effective. I did briefly trial Xywav but couldn't tolerate it.
After 10 yrs of Dextrostat I'm ready to try Xyrem , but the price yikes !! call me strange but I feel guilty about making my insurance co. pay so much ! the price is criminal !
I think for many of us, this is a miracle life changing experience. However the current cost as of Jan 2017 for max 3x bottles per month is $13,190.55 ($158,286.60 per year). On average, the cost goes up another $1,000 every year. Keep that in mind when making insurance decisions especially with high deducible plans. With revenue like that doesn't seem like there is much of an incentive for the greedy corporations to come up with a cure. So enjoy it while you can until you no longer have normal blood pressure and sodium levels. :)
Brilliant video - thank you! I'm recently on Xyrem and appreciate hearing about your experiences with it, as well as your account of the general ins and outs of living with narcolepsy. Merci!
Xyrem has been a life changer for Last sleep attack 2/28/2008 The thing that helps the most is a strict sleep hygiene 20:30 bed-04:30 wake up everyday no mater what. Thanks for sharing Good Luck and have a super fun day.
I've been taking Xyrem for 12 years and its been a godsend. I had just about every symptom of narcolepsy including acute cataplexy. Xyrem has resolved all the negative symptoms. I take 4.5 ml twice at night and also take Adderall daily. I haven't had a single cataplexy episode in the last ten years.
Hey! Love to hear more. Can I ask questions? My cataplexy is only with strong emotions. I take black market ghb now since few weeks
I was on Xyrem years ago, but the fact that I had to work to get med insurance then start on the cheap meds prior to being approved put me in a really bad place. I think the anxiety and dehydration/stress from stimulants had a negative impact bringing out side effects that I might not suffer under different conditions. I want to get back on Xyrem, but I'm not working & have no insurance. It's really amazing to see you took it for 3 years with success! I hope you're still seeing positive results.
Thanks! I am about to embark on this trip with Xyrem and you gave me hope to have a fairly normal and active life!
Thank you for this. I started 3 weeks ago, and the side effects are kind of kicking my ass. So, thanks for helping me keep the faith! Maybe I will make it through law school after all!!!
My wife is being told to get on it. She’s going to start next week. What side effects are bad? I want to support and help her any way I can.
I really appreciate your sharing this because I’v been nervous about starting Zyrem after my doctor suggested that I should start it, over two years ago. I’m looking for people that are taking the medication because I’ve been really struggling even with Provigil and dietary changes for a long time now. Thanks so much
Does anyone know if it has been used for Myalgic Encephalomyelitis which is as debilitating as Narcolepsy. Has anyone been given a prescription for this medicine off label.
I read the FDA did not approve it for the use in FM/ME due to dangers of illagal use as scientific scientific studies show it worked for these patients. That would be so unfair if this medication helps with Non Restorative Sleep in Fibromyalgia/ ME or Chronic Fatigue Syndrome.
Any feedback woukd be greatly appreciated.
Thank you for this great video of information.
Thanks for posting this.
Extreme stress, fear, and anger triggers my cataplexy and other symptoms. I have stimulants but found it hard to get scripts written by new doctors, I had to find new ones when my drivers license was cancelled due to not being able to stabilize my sleep attacks. Life is so challenging without the right meds.
Try getting a three month prescription when you are travelling internationally. It's possible but the insurance company (understandably so) will have an issue. Takes a lot of time working with your physician, the Xyrem pharmacy along with the insurance company. If you are on COBRA, you'll have to pay premiums three months in advance.
Thanks for sharing your experiences! I have suffered narcolepsy w/ cataplexy for 25 years before I finally got the diagnosis and started to take xyrem two weeks ago. So far I have positive responses from the medication, but i keep wondering the long term result....
Good Video Glad to hear your doing well I have just recently passed the 3 Year mark.
I pray I get this soon I'm dying from tiredness
Xyrem didn't work for me but I also have sleep apnea so maybe that's the difference. So tired of being sleepy & unable to enjoy life.
Hey please do a follow up video on Xyrem. Are you still taking it?
@@ladiesmandk hello, life's a bit too busy for me to do a follow up video. I stayed on Xyrem until this year actually, it remained a very good medication. I switched to Lumryz to have once nightly dosing which has been a real gift. There are pros and cons to all meds but I find both very effective. I did briefly trial Xywav but couldn't tolerate it.
@@callieharlem Sure, I can understand and thanks for your reply, it was really helpful.
@@ladiesmandk good luck on your journey
Callie, I recently started xyrem and would like to find out what happened to you during the first few weeks/months of your body adjusting.
After 10 yrs of Dextrostat I'm ready to try Xyrem , but the price yikes !! call me strange but I feel guilty about making my insurance co. pay so much ! the price is criminal !
hello. thanks for sharing. any update at this point? are you still using xyrem? how is it working after a few more years?
I have narcolepsy with cataplexy nuvigil and ritalin during the day... amitriptyline and xyrem 4.5 dose twice a night but my tolerance builds up
What are your thoughts on an upcoming once nightly sodium oxybate?
What about the weight loss and looking younger
Im on Provigil but Im going to talk to my doc about this,
hello...I just started xyrem.. am oready up too 4.5 grams/ 2 a night. but my tolerance has went up a lot just with in 2 months..?
Wouldn't Ambien help.
what documentary?
Ghb?
it made your eyebrows get bigger!
İ take siberian ginseng for my bipolar disorder and daytime sleepiness. İt works a lot. Try it try good siberian ginseng for keeping up your head
thanks for sharing but you looked messed up,notice the 1 eye twitch? this is ghb,in case you didnt know
Magnesium 4 u luv!