sammy
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Member # 13952
posted
Has anyone tried Xyrem for sleep? I've not been sleeping well over these past several weeks. I feel so tired during the day. If I let myself I could very easily sleep all day. I fall asleep sitting up, trying to read, and while sitting at the computer!
I've been trying to keep myself up and not take naps so that I can sleep at night but it's not working. I take my sleep meds (Lunesta, Flexeril, Sonata) and supplements around 10-11pm and I'm still up until 2am or later.
Even though I am awake I try to stay in bed, in the dark and rest. It at least helps my sore body feel better.
I've never had insomnia this severe. It has gotten worse over the past couple weeks as I've been off Babesia medicine. I'm hoping that once I get on some effective medicine that I will be able to sleep at night again and not feel so dead tired during the day. The two seem connected. What do you all think?
I'm wanting to ask my doctor for Xyrem but I don't know if I'm brave enough. I've tried most of the other options but do not really want to try the more addictive older sleep meds that have more side effects.
Should I suffer it out one more month or ask for help? My appt is tomorrow.
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
I have been interested in trying Xyrem for sleep too, because apparently for some people with CFS, it is life-changing. As in, they feel better during the day, and can function much better, if they take Xyrem for sleep.
Have you gotten a sleep study done, and also a narcolepsy test?
I was very surprised to find out I had apnea, and I'm now in the process of treating it. So far it's not seeming like a full solution, but I am still very early into the CPAP, and things might change.
But if CPAP doesn't work, I'd like to try Xyrem...not as an apnea solution, but just to see if it would help my overall condition.
Believe it or not, some people with apnea do have a hard time getting to sleep at night, because their body just gets so confused.
Anyways, back even before I got my sleep study, I asked my LLMD if I could try Xyrem, and their answer to me was that only certain doctors in the U.S. can prescribe it. I guess you have to have some kind of special approval or jump through some kind of hoop to be allowed to prescribe it. Obviously they don't want lots of doctors giving it out like candy.
But I have heard of another Lymie whose doctor prescribed it. So I think it will just vary doctor to doctor, on if they even "can," as opposed to "are willing to."
My guess is that most sleep specialists can prescribe it...though I don't know that...so I'm hoping if I eventually want to try it, I can find a sleep doc to give it to me.
Anyways, good luck and keep us posted!
Have you tried other things like Ambien?
Posts: 4590 | From Midwest | Registered: Jun 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Yes, that is why I'd like to try Xyrem. It is approved for use in treating narcolepsy and severe insomnia but it has also been helpful in CFS and fibromyalgia patients.
I have not had a sleep study done but I have been told that I do not snore or seem to stop breathing in my sleep. I'd rather not have anymore tests. And I can't imagine sleeping with a CPAP.
I've read that Xyrem is distributed from a central pharmacy, it has to be ordered directly for each individual patient. I'm sure that it would be a challenge trying to get my insurance co to pay for it. I've had to fight with multiple prior auths to get Lunesta then Sonata covered. And even then when they approved the meds they will not let me fill a full month's supply of either!
Oh and Ambien/Ambien CR keeps me up at night. It makes me feel more awake and alert. Maybe I should take it during the day It's very strange, caffeine doesn't even have that effect for me.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
The thing that frustrates me is, why hasn't anyone tried Xyrem on us yet?
You'd think with our level of disability, unable to work, etc.....they would try everything that could possibly help, as soon as possible.
Guess that kind of urgency isn't in anyone's vocabulary, and we are in the position of needing to beg for things that could help. Sigh.
Please keep the sleep study on your list of things to do, when you are up for it. I don't snore either, and I would have had no reason at all to suspect apnea, had the testing not shown I have it. I am also a slender, young female...no one would have suspected it. I really requested the sleep study to rule it OUT, not rule it in, which ended up happening.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
They tried to get official approval to use it for Fibro and CFS patients this year. The FDA turned it down because they didn't want it to become too readily available. Because stupid people would steal it, sell it, and use it improperly...
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Go for asking for the Xyrem! It does help people. The only thing is, it puts you to sleep pronto, but doesn't keep you asleep. But maybe that part isn't your problem.
What they recommend is that you set an alarm for 4 hours or so, and wake up to take a second dose to keep you asleep!! Hard to imagine, I know.
I tried it, and really wanted it to work, but it has a side-effect of headaches (not for everyone), and that is already a huge issue for me. The company said that they go away in a week, but I chickened out, due to the headaches.
You would probably need prior authorization or notification, but your insurance company should cover it.
I don't think there's any reason to be afraid of it really. It increases deep sleep and therefore growth hormone, which we really need. Just follow directions, and only take it sitting on the bed, as it does work pronto!
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lymednva
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Member # 9098
posted
I tried Xyrem years ago, before my Lyme dx. It didn't work for me. My doc wanted me to keep trying and continued to increase the dose, but it still did not do what others claimed it did for them.
Finally, after about 4 months I convinced him to let me go back to what I had been using before, because it had worked. I'm still on that combo, and it's been years.
As for insurance, I had no trouble getting them to pay. I had just reordered when he let me stop it, so I had all that expensive medicine that I could not use.
I know my story is not the same as some others, but as with everything in Lyme, we are all different.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I tried Xyrem a while back. The reason it is so hard to get is because it is actually GHB, which is a street date rape drug, the pharmacy just changes it by adding one salt molecule.
Xyrem is not easy to take. It is liquid and you have to set an alarm clock to wake up up around 1 or 2 am, and take another dose. I had to eat crackers with it, so it wouldn't make me sick. It is very salty!!
It didn't seem to help me much either. And, no one told me to still take my regular sleep medications, so I stopped them and my first 4 nights on Xyrem, I was messed up by that drug and having withdrawls crawling to the toilet from the lack of the other drugs!!! It was truly the worst time of my life!!!
Xyrem can cause central nervous system depression, it didn't in me, but it didn't work and was a pain to get, so I quit taking it. I do not think it is a miracle drug for CFS or Fibro.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all for sharing your experiences. I wish that there were more positives. I guess we cannot know if it will help until we try it.
Rumigirl, do you think that my LLMD will approve it? Was he the one that prescribed it for you?
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posted
My 16yo daughter got a month's supply for free to try to see if it worked prior to asking the insurance company to pay. Her psychiatrist had a voucher.
The company that distributes it is wonderful! They are very supportive and are with you every step of the way.
It is kind of pain to take. It also takes about 3 week to get it once they have 'approved' you. You have to talk to their nurse, give a list of your current meds etc...
It worked for my daughter for 4 hours. Then she was wide awake, took the 2nd nightly dose and it took her 2 hours to go back to sleep. Then she slept for another 4 hours. 10 hours from the time of the first dose to waking from the 2nd.
She slept like a log! But, she also had a hangover the next morning. She only took it 3 nights and decided it wasn't for her.
Good luck! I would try it because if it works for you, your body could repair itself faster from all of the destruction of Lyme and Co.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
So do pretty much all sleep specialists prescribe this? And it sounds like some psychiatrists?
I just think it is "worth a try."
What I call "fatigue" is probably really "sleepiness," so I think I'm a good candidate for this drug, because I am beginning to think my problems really do have some kind of origin in sleep itself, as opposed to hormones, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My chronic fatigue doctor was who prescribed it for me. No other doctors I have been to have heard of it. Many had to ask what it was when I listed it in my medication list!!!
You can get the first month free, I got my first month free, but then had to pay my highest tier of my prescription coverage.
But, the way I see it, we need to try everything to see if it works for us or not.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I asked my LLMD today. He was familiar with Xyrem but said that I needed to try a few other combinations of medications first.
So I'm supposed to start Lyrica, says it will help with neuropathy and sleep. He also changed around my antibiotics so hopefully I'll start feeling better and sleeping better once these infections are under control.
Thanks again everyone Posts: 5237 | From here | Registered: Nov 2007
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Rumigirl
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Member # 15091
posted
Sorry, Sammy, just saw this. Yes, he does rx it, but, as you heard, he wants people to try other things first. He will rx it if you have failed other things.
When I tried it, it was a dr at my headache neurologist's office, who is a sleep MD, who rx'd it. I had to twist her arm, as she felt other things work as well, which may be true for many.
If it kept you asleep, and if I didn't get headaches from it, it would be great! Ha!
I may try it again sometime. But I have such a bad time with migraines, I don't want to take anything that makes that worse!
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posted
I tried it and I just couldn't stay asleep long enough. It wore off after about an hour and a half and then the rebound affect caused me to be wide awake. So, taking three doses a night only gave me 4.5 hours sleep. Also, I felt really loopy and hungover the next day. I tried to stick with it for a while but my body just couldn't adjust. Also, it's really, really expensive and hard to get covered.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: NATURAL SLEEP - Links to articles & supplements - and other suggestions -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've tried all of the natural sleep supports mentioned except phosphatidylserine. I only recently read about this and started taking it a couple days ago. I know that it may take a couple weeks before I see a difference when using sleep supplements so I am hopeful that it will start to help.
It would be nice if the insurance companies would cooperate and pay for our doctor's recommendations. My insurance company refuses to pay for more than one sleep med at a time. And then they limit the amount that you are allowed to have within a 90day period. So basically they don't want you to take even one sleep pill per day.
I just learned about this 90day limit because they did not want to refill my Lunesta RX. They refused the second sleep RX also. So now my doc has to do two prior auths. And I have to wait again. Such a pain.
Why can't insurance companies just pay their part, they are not our doctors, they should not be making treatment decisions. I've been paying out of pocket for IV meds so I'm a little bitter about this nonpaying, delaying with prior auths, then refusing just because they can stuff.
I need some sleep.
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Rumigirl
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Member # 15091
posted
Grrrr! The insurance companies are getting worse and worse---I hate it!
There are lots of other meds to try, if the PS isn't enough. Here are some ideas, and these are all cheap: 1 or 2 Benadryl (side-effect makes you sleepy),
generic Gabatril (it puts you in stage 3 & 4 deep sleep--if you're sensitive, you may only need 1/3 or 1/2 of a 2.5 mg tablet),
generic neurontin, 100-300 mg (you can get 100 mg caps, so you can find the right dose). I have more ideas, but this is enough to try for now.
With these generic and over the counter meds, you won't have to fight your insurance company! Plus, some of the regular sleep meds don't let you get into deep sleep so well.
I hope you can find something that works. Without good sleep, we can't heal! The difference in pain level for me when I get good sleep vs not is enormous.
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I was reading a post where you noted some generic sleep medications. This one specifically caught my interest because all of my sleep studies show that I don't get Stage 3/4 sleep. Is this Gabatril you mention specifically a sleep medication, or does it have another use? And, I am assuming it is a prescription medication??
I only ask because you had it in a list with benadryl.
Thanks so much!!!
generic Gabatril (it puts you in stage 3 & 4 deep sleep--if you're sensitive, you may only need 1/3 or 1/2 of a 2.5 mg tablet),
Posts: 893 | From Florida | Registered: Dec 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Need Lots of Help,
Sorry, I cleared it. I sent a lot of PM's and forgot that that clogs up your mailbox, if you don't clear the sent ones.
I forgot to make the usual disclaimer: I am not a dr! But to answer your questions:
Yes, Gabatril is an rx med. It's an anticonvulsant that is sometimes used for a sleep med. It's strong stuff, so, as I said,
if you're sensitive, you may only need 1/3 to 1/2 of a 2.5 mg tablet (I am really sensitive!). I do find that it's hard to cut it into
thirds, because it's a really small pill, however. But most people are not as sensitive as I am.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thanks Rumigirl, I take benadryl regularly with dressing changes and it doesn't make me sleepy at all. I have not tried Gabatril or Neurontin. It's nice to know that I may have some more options if I need to try them.
I took my first dose of Septra DS with dinner last night and first dose of Lyrica at bedtime. Went to bed a little before 11pm and was still awake at 2:20am (last time I looked at the clock). My body is so tired and sore that I need to lay down and rest but my mind is running like crazy. So I just lay there in the dark and think away.
I usually get up between 8:30 and 9am to take my morning meds. If I don't wake up on my own my cat wakes me up (play time!). She's so adorable I can't resist her asking and offerings of toys. Today though I could not get up. My head felt so heavy, nauseated, and just sick feeling. I can't really describe it. Almost like I was sitting on a rocking boat. I still feel terrible but I don't really know what to suspect.
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Sammy, I'm sorry to hear that your are suffering so! It sounds like you are herxing already from the Septra DS---on top of the
usual insomnia due to Lyme and co. The Septra really hits Bart, and Bart creates bad neuro herxes---like nobody's business!
Are you detoxing to get rid of all the toxins from herxing and the diseases? If not, that sounds like a big priority! That would help with many of your symptoms, but not necessarily the insomnia.
What are you taking to sleep now? (Whatever it is, it obviously isn't working very well!). Sigh, well keep trying different meds for sleep until you find something that works.
Oh, and about your cat: cute as she may be, it sounds like you need to be able to sleep in the am! Could you have her sleep in
another room until you can sleep ok?? (I know you may want the comfort of her sleeping with you, however (and her, too!).
[ 08-29-2010, 01:40 AM: Message edited by: Rumigirl ]
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I tried lyrica and it made me wake up with aweful headaches......
Posts: 893 | From Florida | Registered: Dec 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
It is the Septra DS. Took my dinner dose last night and started feeling worse within the hour. I did not take the Lyrica last night. Had trouble falling asleep but that was expected. Tried to get up at 9am to take my morning meds and get ready for church but I couldn't get up. My head felt like it weighed a thousand pounds and I felt terrible. Ended up sleeping until 11am.
I hope that this is a herx and not side effects. I want to kill those buggers that keep making me sick!
And yes, my sweet cat slept with me again. She is very good. I think that she worries when I don't get up or respond to her toy offerings. She knew that I wasn't feeling well today because she came to me, put her cheek against my cheek, then layed right down in the crook of my arm, purred, and stayed with me.
She used to never sleep with me until I started getting sicker. I felt really bad one night and she came to comfort me. Now she always sleeps with me. She's always with me, my funny little black shadow!
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Rumigirl
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Member # 15091
posted
Aww, that's sweet that you have her to comfort you. We certainly need a lot of that!
And it's good that you've narrowed it down to the Septra. That's what it sounded like to me. Probably a Bart herx. But look up the side-effects, too. Actually, that's soon after taking it to be a herx.
Can you get a Bart herx so soon after taking a med?? Maybe so? Maybe retry the Lyrica.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I haven't been here for awhile...I came to see if any more were taking xyrem to give me feedback. It seems like I'm one of very few, and it's been that way for years.
They make doctors fill out a lot of paper work, and therefore make a paper trail if some xyrem hits the streets. They want to make sure they find out who is selling their stuff.
I had trouble with the awakening affect when it wears off, and a LLMD sleep expert had me take klonopin an hour before taking xyrem. It slows the CNS down enough for me to sleep well, usually.
The instructions to set an alarm are for Narcoleptics. They would sleep through and not get the deep sleep of the 2nd dose. I find that I wake up any time from 2 to 5 hours after the first dose. I have to wait a half hour if I wake up in 2 hours. No matter how long I've slept on the first dose, I take the second one or I feel sleep deprived the next day.
I just talked to a pharmicist at the Central Pharmacy where xyrem is distributed, and she said that fibromyalgia patients are the next largest group after Narcoleptics who take xyrem. She was also shocked at how many of them have Lyme disease and how awful it is. She said a lot of doctors won't prescribe xyrem without it being on label and a lot of insurances won't reimburse off label use of it. And it was turned down for on label use for those with fibromyalgia because there are so many with that DX, the risk of there being too many to keep track of and therefore a high risk of misuse.
In order to qualify for xyrem, besides getting a DX of narcolepsy, a person has to prove that they can't get quality sleep from other sleep meds. I was on 5 different meds at the same time and wasn't getting Delta wave sleep at all.
From the first night of taking it, at the beginning dose and getting just 3 hours sleep, my life turned a corner. I hadn't been so rested and alert in many years. I've been taking it for years now and just shudder at the thought of having to stop it.
In the 80s, GHB was available in health food stores, and people paid about $20 for a month's worth. Then it was found to be used as a date rape drug and taken off the market, but meanwhile many people had taken it for years without bad side effects.
I wonder if normal people go into a deeper sleep than me with FM/Lyme disease. I can go into a deep sleep with it, but can wake up if need be. I have to be careful if I get up while it's still in my system because I lurch, but my mind can get alert as fast as my husband's when roused from a deep sleep.
I was hoping to find that others are taking xyrem, getting better, and reporting that they were able to stop xyrem. Now it's $1,170 for 1 bottle (10 day's worth if taking full dose). My husband is nearing retirement, and we're trying to figure out if he can with all my health expences. Right now, we pay $50 a month for it, but I pay many hundreds for all the supplements and copays. I doubt if that's taken into consideration when using a sliding scale for helping out with the cost.
Oh, one more thing that the pharmacist told me: no research is being done yet on FM patients and xyrem, because they're putting their efforts into getting it on label first. So, it's a vicsious cycle.
As far as doctors who are willing to apply for xyrem. As far as I can tell, it's integrative MDs, and LLMDs who are the best bets.
For those who can get xyrem, but have problems with side effects, I recommend going to the site Talk About Sleep, and read the problem solving posts. Either the Narcolepsy forum or the FM forum has information from those who found different supplements that helped them with side effects.
As far as I'm concerned, Xyrem is the king of sleep meds, but I trust everyone I live with, and I don't broadcast that I'm taking it.
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It's very strange, caffeine doesn't even have that effect for me.
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