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Xyrem/sodium oxybate experiences? Advice needed

Discussion in 'Sleep' started by alex1989, Jul 30, 2016.

  1. alex1989

    alex1989

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    My sleep doctor has recently suggested that I might be able to trial the deep sleep enhancer Xyrem. Unfortunately, in order to qualify to take the drug I have to complete a punishing (and expensive) night + daytime sleep study, which I'm very worried will result in a serious crash. I've explored pretty much every other sleep drug, as well as the usual behavioural modifications, and while my sleep is not as bad as it used to be, I had pretty bad alpha intrusion on my previous sleep study and I still notice a fairly big boost on days that I sleep particularly 'well' (which is rare). My main symptom is severe mental PEM (e.g. no TV in the evening and only talking for an hour after dark) which deteriorates over the course of the day, but I also have POTS and most of the usual ME symptoms (flu-like, GI, nervous system stuff). Has anyone here who has primary ME/CFS taken Xyrem? If it wasn't for the the sleep study I would definitely try the drug, but it could be weeks or months before I recover and wanted to know if anyone had experienced improvements before I sign up for the study.
     
  2. LaurelW

    LaurelW Senior Member

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    I used Xyrem for six months after my husband passed away in the mid-2000's and nothing else would work. It's pretty finicky to use since you have to make sure you don't take too much, you have to deface the labels before you throw the bottles away, you have to watch a video before using it, sometimes insurance won't pay, etc. etc. I have a friend with fibro who has been using it for years, and it's the only thing that helps her. After the six months, I went back on Ambien, which has worked just fine ever since. Have you tried other drugs like that? I also take trazodone, and I was told by one doctor that it provides you with the sleep stage that Ambien doesn't, so the combination is good, and that is my experience.
     
    LauraB likes this.
  3. LauraB

    LauraB LLB

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    I have primary ME/CFS and started Xyrem on August 25th. I am still trying to adjust to it. I'm currently on 2.25cc 2xs a night. I have had to take breaks from it from time to time as it increases my POTS, I also have OI. Seems to cause some bladder issues, but nothing that interferes with anything. I use a beta blocker for the POTS but still need to take a break here and there so far. For example, I take xyrem for about 4 nights then stop for two, I don't like the heart awareness. Sleep is still erratic, one night solid sleep, then next fragmented. On the plus side, I have more energy and stamina, I lay down less thru the day, my cognitive and perceptual processing has improved. I hope my body continues to adjust as I would absolutely hate to quit. Right now the benefits outweigh the side effects. Laurel, how was your experience on Xyrem for those 6 months?
     
  4. perchance dreamer

    perchance dreamer Senior Member

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    I took Xyrem for years, but was able to stop. It worked well for me, but I did have one problem with it.

    Most people only have to stop eating a couple or three hours before taking it so that it will be effective. I had to stop eating about 5 hours before in order for it to be effective. According to my sleep doctor, this is unusual.

    I found this really difficult to do. I go to bed at midnight, so had to stop eating by 7:00. I cook dinner for my husband and me (he does all the cleanup!), and he didn't always get home in time, so I sometimes ended up cooking twice.

    I would suggest that if Xyrem isn't working well for you to try leaving more time between when you stop eating and when you take the medicine.

    I stopped Xyrem and do well with 100 MG of Trazodone every other night and 15 MG of Belsomra every other night. Belsomra seems to be very hit or miss for people, but I really like it. I get habituated to both Traz. and Belsomra if I take them consecutive nights, so alternating works for me.
     
  5. Nielk

    Nielk

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    I took Xyrem about 8 years ago.

    My experience was unique, although I did hear another ME patient with similar reaction.

    The first few days it worked well. The quality of my sleep was good. I had vivid dreams. I did notice that during the day, I was losing the frame of time. What I mean is an hour would pass, when I thought only a few minutes passed.

    On the sixth night, I had a severe reaction. I had a psychotic experience that lasted two days. I never had rhis before. It was very scary and my doctor had to report it - which meant I had to fill out documents about my experience.

    My experience is very rare but I would advise that you should not try this if you live alone. You should haven adult present for the first couple of weeks to keep an eye on you.
     
  6. perchance dreamer

    perchance dreamer Senior Member

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    I did want to say one more thing about Xyrem. Years ago I was on the Talk About Sleep forums, before they did a big redesign. I used to be on the Narcolepsy forum, and most people there were on Xyrem. Many had been on it from the beginning.

    The big consensus there was that you need to titrate up on Xyrem very slowly, more slowly than most doctors will tell you. People there recommended staying on a dose for 2 weeks before going up to the next higher dose. Xyrem is strong medicine, and it's best to give your body time to adjust. Doing this can really reduce side effects even though the lower doses might not be very effective for your sleep.
     
    Cog71 likes this.
  7. Brooklyn Laura

    Brooklyn Laura

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    I am working with Dr. Benjamin Natelson in NYC. He wants me to try Xyrem. I was initially really excited, given what I've read about its track record of success with ME/CFS. I'm mostly housebound/extremely sick. Alas, so far my insurance company is refusing to play ball, given the drug's obscene cost (raised by 841% when acquired by Jazz Pharmaceuticals three years ago). Would love to hear from anyone who has managed to get coverage for Xyrem. Equally interested in hearing from you if you've been denied. What was the reason given? I am wondering if this is an Epi Pen-type situation and, if it is, what the ME/CFS community can do to push back.
     
  8. perchance dreamer

    perchance dreamer Senior Member

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    @Brooklyn Laura, do you have a narcolepsy or cataplexy diagnosis? If so, I don't think they can deny you.

    Even if you don't have those diagnoses, it's still possible to get coverage with some insurance companies. They consider it a specialty drug, and some specifically exclude paying for it. That should be easy to find out.

    If they don't exclude it, some insurance companies will let you have it, but charge you a very high co-pay. If that's the case, Xyrem used to let you have it at a discount as long as you had some insurance coverage on it. That was the case for me years ago. With the discount from Xyrem, I paid only $40 a month instead of the $100+ my insurance wanted me to pay.

    This whole situation is truly the ugly side of American capitalism. It's just unalloyed greed on the part of Jazz.
     
    Cog71 likes this.
  9. LauraB

    LauraB LLB

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    Thank u so much everyone for your informative posts! I've been on Xyrem for a little over a month but taking breaks here and there because of the increased POTS ( beta blockers help)and bladder twinges. On my nights I take a break from xyrem, i use Lunesta to sleep. My doctor's nurse told me that I can't take anything on your nights off and I said well then I won't be able to sleep.
    Perchance dreamer,
    I was wondering did you have similar side effects? And did they settle down as you continued taking Xyrem? That's great the trazodone and belsomra work for u. I guess you are getting deep sleep on those drugs. If you don't mind me asking, why did you stop Xyrem? I know some Drs think that possibly Xyrem does reset your ability to sleep so that you can get back your deep sleep without it.
    My insurance would not cover Xyrem but the SDS pharmacy had me fill out and special assistance program form. I knew financially we made too much money but because I have ME CFS I think they approved me to receive Xyrem for one year free. Brooklyn Laura, you might want to check into that.
     
  10. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @LauraB. That's terrific that you get a year of Xyrem free! I know it's harder now to get Xyrem. I had a narcolepsy diagnosis in the last years I was on Xyrem, so then I don't think they can deny you in that case. Many years ago I started taking it for fibromyalgia, and it was easy to get through insurance before the greed heads at Jazz got the patent.

    I did not experience the side effects you mentioned, increased POTS and bladder twinges. I never really had POTS, but would sometimes get dizzy when I rose to a standing position. That is much better now that I managed to raise my blood pressure to a more normal level. I've always had this condition, so it predated my taking Xyrem.

    When I used to read the Talk About Sleep Narcolepsy forum to get advice and info on Xyrem, many people got relief from side effects by increasing magnesium and eating potassium-rich foods or supplementing with it.

    You might try magnesium glycinate (so you don't get the digestive effects some of the other forms can cause) and adding potassium to your diet by eating foods like sweet potatoes and bananas if the carbs don't bother you. I can eat those foods as long as I have protein at the same time to provide some buffer to the carbs.

    A lot of people also supplement with potassium because it's pretty hard to get as much as you need from diet alone. It's something to be careful about because salt/potassium levels need to be in good balance. I supplement, and my salt and potassium levels are always good.

    One of the reasons I quit Xyrem is that I had to fast so long before taking it that it was a big pain. I want to eat dinner with the grownups!

    Also, my narcolepsy symptoms got better. My sleep doctor, who is also a neurologist, said it's possible I got mild narcolepsy as a result of a head injury. Sometimes when that happens, the brain heals itself after a time, and the symptoms go away.

    I also longed to sleep through the night again instead of having to get up in the middle of the night to take my 2nd Xyrem dose.

    One thing you can always try with Xyrem is decreasing your dose a bit and seeing if the side effects ease up.
     
  11. LauraB

    LauraB LLB

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    Hi Perchance Dreamer,

    Good to hear the narcolepsy has decreased. Do u think xyrem helped with your fibromyalgia at all?

    i know, getting used to not eating in the evening is hard, but for me right now small price to pay for more solid sleep. My sleep was so fragmented. Also I have more energy, better memory, cognition and perception, IBS has decreased, and i can be upright walking or sitting for longer periods of time. If I didn't wear a heart monitor, I may not have known my POTS worsened a little, beta blocker helps. I wear it to stay below my anaerobic threshold but so far, going over more often and doesn't trigger post- exertional malaise.

    Right now I'm still on a low dose, 5gm a night, moving up to 6gm soon.

    Thanks for the info on the supplements. I do take magnesium citrate and salt tabs. I also take the Nuun tablets in water 2xs a day, electrolyte drink. How much potassium did u take?

    I hope to not stay on Xyrem for the rest of my life like one of the jazz pharmacist told me. Ideally after a period of time I hope it heals my overfiring brain and wean off it like you.

    Also I need to call jazz pharma to ask, after my year of free xyrem is up, then what? Extend me on the program, see if my RX plan will cover, or out of pocket..ugh!
     
  12. Brooklyn Laura

    Brooklyn Laura

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    Thank you LauraB! I will look into that. Dr. Natelson's office says it's up to ME to appeal the insurance denial (pretty appalling, but I'm getting used to this sort of thing). From what you write, it sounds like SDS might be prepared to work with just me.
     
    Last edited by a moderator: Oct 2, 2016
  13. LauraB

    LauraB LLB

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    Yes check with them, I'm just guessing because I can't think of any other reason than maybe they would like people diagnosed with ME to try the drug.
    I just looked at the paperwork and SDS it is a subsidiary of Express Scripts. So I don't know if you have to have that RX coverage or not.
     
    Last edited: Oct 3, 2016
  14. perchance dreamer

    perchance dreamer Senior Member

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    Hi, @LauraB, I take 2 potassium tablets a day, 1 in the morning after breakfast and the other after lunch. This is the brand I use, on the recommendation of another member:

    https://www.amazon.com/Multi-Source...=1475599373&sr=1-2&keywords=sundown potassium

    From what I understand, it's important to space out potassium through the day rather than taking multiple tablets at the same time.

    I also take this one mid afternoon, which has both magnesium and potassium:

    https://www.amazon.com/Integrative-...words=krebs+magnesium-potassium+chelates&th=1

    Since I have OI, which is mostly under control, I add sea salt to my drinking water. I like Celtic Sea Salt for this. So I get electrolytes from that since I drink a lot of water, and with the potassium, I can usually keep my BP to a good level and avoid getting dizzy when I rise to a standing position..

    I saw a cardiologist a couple of times because I thought I was having arrhythmias, and I have a strong history of heart disease on my mother's side. He thought my regimen for controlling OI was good, and that I should especially stay on top of consuming enough salt to keep my BP from being so low.

    I was glad to hear that! If you eat very little processed food and cook mostly from scratch, you aren't necessarily getting a lot salt from your diet. I do occasionally indulge and have popcorn because it is so exceedingly tasty, and life is short. But I do feel better if I stay mostly on a lower-carb diet.
     
  15. LauraB

    LauraB LLB

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    Thank you for the supplement links, I should increase my potassium. I think I need to eat more salt, on occasion I will use a little fludrocortisone, but take it just to take a break from beta blockers. I've currently established a routine of 3 days on xyrem then 2 days off bc of the POTS and I get a tightness in my chest. When I take the break it settles those side effects. Also I noticed as I increase my dose, they bc more noticeable but thru time seem to settle down. Hopefully my body will acclimate bc I feel so much better on Xyrem! Benefits definitely outweigh side effects. Both the jazz pharmacists and my doctor's nurse don't seem to be concerned with the the tightness in my chest but it worries me. Has anyone had this as a side effect? And if so did it dissapate?
     
    Last edited: Oct 7, 2016
  16. LauraB

    LauraB LLB

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    Brooklyn Laura, Have u checked into the Patient Assistant Program? I don't quite understand why I qualified, but I'm so grateful I did.
     
  17. LauraB

    LauraB LLB

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    Laurel W, I was wondering what was the dose you worked up to, and did you experience side effects from Xyrem? I experience occasional bladder twinges, increased POTS in the morning and chest discomfort, and I noticed my expressive language is effected, specifically word finding when I talk. I currently take Xyrem for 3 days then 2 days off because of these side effects. I'm only up to 4.75 a night, but seems to be enough sleep for me. My Dr. increased my beta blocker for the POTS. Xyrem does make me feel better, more energy and stamina, IBS is gone, can be upright more often, malaise is gone when I take it. When I don't take it the afore mentioned improvements revert back. It has improved my quality of life. I've been on it for about 2 months now, so still weighing it out, although I'd hate to stop, the word finding is the most concerning for me. Did you experience similar side effects?
     
  18. LaurelW

    LaurelW Senior Member

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    Sorry, I don't remember the dose--it was back in 2005. Might have been 3.5. I have a friend with fibro who's been on it for years--it gave her her life back.
     
  19. LauraB

    LauraB LLB

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    Thanks!:)
     

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