Help! What do you do when Xyrem doesn't knock you out?

[Kalyps0]

Hi, I read a lot of the posts here but I rarely post anything myself. I am curious if there is anyone who can take their Xyrem and not fall asleep. My boyfriend has N and is prescribed to what I believe to be the highest does of Xyrem that you can be prescribed to. He takes 4.5 grams 2x night. It's crazy, he can still fully function and not feel the slightest bit sleepy. This can be really stressful. His doctor has given him Xanax and Klonopin to try along with the Xyrem. It only helps for the first night of the prescription and then it seems like he builds up a tolerance right away and the drugs stop working.

Without any meds he will sometimes be awake for days at a time, other times he could sleep for days....I have not been able to find any info on what it might mean if Xyrem does not knock you out.

Any ideas are very welcome. Thanks in advance.[/b]

[Irishvamp7587]

Does your boyfriend have a history of taking sleep aids like ambien or benzos like xanax, klonopin, ativan, valium to help him sleep, not the ones that he's currently been given? I've read about a bunch of people that say Xyrem doesn't knock them out and it turns out they have a history of taking sleep aids or benzos, There's something about a cross tolerance that makes the xyrem not as effective. Someone else might be able to explain it better if this is the case for him.

I have had anxiety as a side effect from Xyrem and was put on Xanax during the day and I'm pretty sure that's what is causing me to not sleep as well as I used to on Xyrem.

[Kalyps0]

Oh yeah, he definitely has a history with taking sleep aids. He has tried them all and it has always been the same thing. The first night or two he sleeps great and and then they just stop working. He used to have a lot of luck with Xyrem, but was off of it for two years because of insurance and money issues. When he went back on the Xyrem it just didn't seem to have the same effect on him as it did in the past. Maybe it's weaker now? His dose has not changed.

Last night he took a third dose along with about 3mg of Xanax and still struggled to fall asleep.

It would be interesting to know if the tolerance that he has built up with the sleep aids could be making the Xyrem less effective on him.

[Willow2007]

I know as a hospice nurse that if someone is an alcoholic, drank a lot most of their life, we cannot get their pain under control with morphine. Some part of their brain doesn't work as well. We can have a person struggling with pain, and we kee p giving more and more morphine and it just doesn't help.

My family has a lot of generalized anxiety disorder. And lexapro has calmed us all down. My daughter takes it and is doing very well, as opposed to before lexapro where she was an anxious worried mess. I take it for minor OCD and continuing to ruminate over worries over and over. My Dad was major OCD and anxious. His doctor put him on lexapro. And a week later I talked to him on the phone and he was perfecctly normal. The next time I talked to him he was an anxious OCD mess. He had stopped taking the lexapro because he said it caused diarrhea. duh.

someone that is very anxious can sometimes not be calmed down by xanax or klonopin. My one daughter takes seroquel at bedtime or she will not sleep at night (this is the other daughter, not the one on lexapro). Obviously the Xyrem is not helping. I can stay awake off and on during the night if I am worried about something, or starting a new job, etc. but 99 nights out of 100 I sleep well. He needs to continue communicating with his doctor, if meds are not working, something needs to change. I always thought Michael Jackson should have tried Xyrem, instead of propofol. But maybe he did and the Xyrem just didn't work for him either.

[Kalyps0]

Thanks for the responses. It's just hard to grasp the fact that Xyrem worked so well for him in the past and after trying to hard to get it for years and finally getting it again, it no longer works. What a bummer! We will continue working with his doctor, luckily he is very understanding and open minded so I am confident that we will be able to find something else. I just wonder if there is an alternative that will help get that stage 3 and 4 sleep that my boyfriend so desperately needs. Does anyone know if something like that exists?

[Irishvamp7587]

If my theory is correct, about his past use of sleep aids or benzos then if he could stay off of both of them for a long enough period (not sure how long though), then his tolerance will go back down and Xyrem should be able to work well for him again. Of coarse check with his doctor to see what they think is best. Some dr's might not even be aware of this cross tolerance that happens so you might want to read through the insomnia board and find the posts that refer to the cross tolerance or just ask everyone on there if they could help you find the posts cause I'm not even sure what key words you would use to search for the related posts. Then bring that info in to his dr. I had to do this with my dr because he didn't believe that the side effects I was having were from Xyrem. There's still so much that they don't know and isn't as well understood about Xyrem. That's why I love reading about other people's experiences on here because I learn so much more.

[runningfox]

Kalyps0,

I just wrote a very very long and detailed response as I have the same EXACT problem as your boyfriend.

However, it just got deleted because I got logged out after I submitted it.

Here are the things that have worked for me so far, I will write back again after I eat dinner to explain each one a little more.

-Ambien CR (Klonopin worked for me for awhile, too, and then stopped working. I ended up reading a journal article about benzodiazepines and how they can help sleep problems short term but they also mess up sleep architecture, I think it had to do with promoting or prolonging alpha waves. Narcoleptics need deep sleep and benzodiazepines cause more lighter sleep to occur. I can try to find the article again, if you are interested). Ambien helps knock me out.

-Lyrica (this is like GABA/neurontin). It's usually prescribed for chronic pain, and for me it was prescribed for RLS, but it helps me sleep for a longer time and it KNOCKED ME OUT the first time I took it - alone, without any Xyrem, Ambien, nothing else. I slept for 8 hours!

-Waiting at LEAST 3 hours after I eat to take Xyrem. The longer I wait, the better it works on me. Also drinking more water after eating seems to help digestion/helps Xyrem work better.

-Getting iron, zinc, magnesium, vitamin D, vitamin B levels checked and taking supplements to fix defiencies (you have to be careful about some of these, for instance iron and zinc are easy to overdose on, especially if you already have enough of them. It's rare for men to have low iron, but I thought I would mention it since starting iron supplements has helped me fall asleep at night lately. I'm a girl though, and I don't eat meat and those two factors make me way more likely than a male to be iron deficient). These can all affect how you sleep and how awake and with it you feel during the day.

-Almond milk - it is SO GOOD, tastes like a milkshake, but low calorie, and is a really easy way to get all of the vitamins and nutrients mentioned above. Better for you than dairy milk and has more vitamins & nutrients (including calcium!) than dairy milk.

-Does your boyfriend usually metabolize everything quickly or is it just the benzodiazepines he is metabolizing quickly? I have a crazy fast metabolism and my tolerance for all sorts of meds is crazy high unless I take a break from the med. I also have a lot of trouble gaining and maintaining weight.

-Going along with the one above - has his thyroid ever been checked? Has it been checked by a doctor who goes by the NEW guidelines for thyroid levels? My problem started after I had been on thyroid meds for a few months. So my thyroid was faster and more efficient. I don't know if the two are linked, but maybe a faster thyroid can keep you from sleeping or possibly a faster thyroid means you have a higher tolerance or metabolize the medicine too fast?

I can't remember if there was anything else but I will be back later to give you a little more info maybe! I definitely feel your boyfriends pain/annoyance/irritation/exasperation/etc. with this situation. I hope this helps!!!

[runningfox]

I am back!

I guess I don't need to explain anything more about stuff that has helped me get the Xyrem to work for me/stuff that I think may have caused it to not work as well for me. I didn't realize how much I wrote. But if you have any questions about any of that stuff, I will be happy to answer.

I just wanted to say that I was never on any sleep aid before Xyrem, so for me I don't think it has anything to do with that part of my brain not being able to respond (unless being on Xyrem for 3 or 4 years has caused this). I was prescribed to Ambien before I was put on Xyrem, but I hated it and only used it two or three nights before giving up on it.

As a general disclaimer to anyone reading this: for the Xyrem + Ambien CR combination I'm on now, I have to warn that my sleep doctor disapproves. She also disapproves of Xyrem + Klonopin combination (a different doctor prescribed Ambien and Klonopin to me, he knew I was on Xyrem, and he prescribes Xyrem to many of his patients. I just happened to already be on it when I started seeing him, so he doesn't prescribe mine).

The Xyrem pharmacy "nurses" (or whatever they are called) don't exactly disagree with the combination, but they can't tell you it's okay to mix sedatives with Xyrem for legal reasons. They told me it really depends on the person and how they metabolize drugs, it will be safe for one person and deadly for another person. That and doctors are different about what they will or won't prescribe together. That's pretty clear if you just read through the TAS forums.

Anyways I hope your boyfriend gets his Xyrem stuff worked out soon!!!

Other things to consider - does he take stimulants during the day? Caffeine? Chocolate? How close to bed time?

Potassium is another thing that is supposed to help with sleep, and deficiency can supposedly keep you from getting sufficient slow wave sleep (deep sleep!). Try eating a banana with dinner/as a snack at night. I have been trying this lately to see if it helps (actually, it may be what has been helping me get to sleep lately, and not the iron supplements as I thought it was).

GOOD LUCK!!

[Seminolegirl]

runningfox-

I really enjoyed your posts! Thank you for all of the information! IrishVamp and I had been discussing how Xanax might affect Xyrem use over on the other post about Xyrem and Anxiety.You said so many things that hit home with me.

I also had a terrible experience when I tried Ambien once. I sleep DROVE. Not just sleep WALKED but I got in my car and drove down the wrong side of a road! I am SO thankful that I did not kill anyone or get hurt. I had an angel with me that night! The doctor switched me to Lunesta and it actually worked very well for me. I had not been diagnosed with a sleep disorder at that time.

My situation was a little different, so I am still trying to assimilate everything. I was in a serious accident and had a lot of head trauma. I was not diagnosed with Narcolepsy until 8 months after my accident. I didn't have sleep attacks until about 6 months after the accident. Now, after reading hundreds of the messages on these boards, I see that I had lots of the signs of N throughout my life and I went to several doctors to try and find out why I was always so exhausted. Why I had vivid nightmares all night, every night. I would wake up pouring with sweat and I was told everything from Chronic Fatigue to psychological issues. Not one doctor suggested I see a Neurologist or that it could be Narcolepsy. I didn't know what it was called then, but some of the medicines they put me on that were supposed to give me "better" sleep, gave me sleep paralysis. That was the worst for me. When I was in the middle of a very bad nightmare and panicking and could not force myself awake! I would feel like I couldn't breath.

I was reading what Willow was writing in regards to her experience with the Hospice patients and their tolerance to Morphine. It happened to me in the past year. After my accident, Morphine did not stop pain at all for me. In the beginning, Fentanyl did. Then 6 months after the accident, I was still in a rehab facility and I had an infection that destroyed the bone in my right foot and had to have it amputated. I was devastated. When I woke from the anesthesia, I was screaming. I remember telling myself to stop screaming, but I couldn't. I have never known pain like that in my life. I had already told them about the Morphine, so they were using Fentanyl , but it wasn't doing anything. They gave me an epidural and I don't even know what all they gave me after that, but NOTHING worked. Finally, the called another Anesthesiologist in and he gave me Ketamine, which is usually used for sedation of animals by vets! I knew what it was, but the nurses had not heard of it. The first time it worked for 20 minutes. Then the pain instantly came back. The nurses would not call that same doctor to come back. They said he couldn't give me the medicine again. So, they called some doctors from the pain management group to come do a consult. They said there was nothing else they could prescribe. They had given me the highest doses of all the meds. The nurses finally called the Anesthesiologist to come back and he gave me a higher dose of Ketamine. I was told that it is given in very rare cases and if I would need to continue getting it, I would have to be put in a monitored room with cameras! Thankfully, that dose stayed with me and once it wore off the next time, the epidural was enough to get me through. I did hallucinate with the second dose. So, when I started having the sleep attacks a few weeks later, I was thinking "Oh my goodness, that Ketamine messed me up!" Haha!

I was not an alcoholic, but I think the brain trauma affected the way my body processed everything. I have an article about an Army Ranger that was injured in combat and also had to have a lower leg amputation. Morphine couldn't touch his pain and his wife said he woke up screaming also. I think our brains or so tricky.

It seems like most of us on here are all trying to learn as we go, because one thing will work for one of us and then for another one it won't. It can be frustrating!

When I started Xyrem, I was on 15 medications. There were a few the pharmacists were concerned about. The Fentanyl Patch, Percocet and Xanax scripts concerned them. They told me about the chances it could stop peoples breathing. I made a point to take Percocet or Xanax as little as possible, and if I did have to have one, I would take it early in the day. I noticed that you also mention Neurotin (Gabapentin). I was on 3600mg a day for nerve damage. That may be why I slept so hard back then. I have not had the money to get my next script, so I have been taking 300mg a day! That may be part of the reason I am not sleeping as long as I used to. I think also that the Fentanyl patch made me sleepier. I haven't been able to get any of my meds in the past 2 months, except my Xyrem. I am SO thankful for the Xyrem.

Kalyps0,

I would love to hear an update about your boyfriend! I apologize for a long post, but I was thinking of other possibilities for your boyfriend's tolerance to medicines. Has he had any type of trauma in that 2 year period without the Xyrem? I wish you both luck with figuring this out! I know I can sometimes stay awake through my first dose if I want to. My bad habit it loving to read the N boards while I am getting sleepy! Occasionally, I get involved in a discussion I am very interested in and I end up staying awake. I am sure your boyfriend isn't trying to stay awake, but I noticed you said he can walk around and wondered if he is following all of the steps we are supposed to? I know we are supposed to lay down in a quiet, dark room and not have anything like a tv or computer on. The boards actually relax me, so I break that rule. If I lay in a dark room and do nothing, I will over think things and then worry because I am not sleeping.

I don't know if anything I shared will help at all and I am very thankful that my body was able to handle all of the drugs at once. Everyone's body does handle medications differently. I was very worried that I would build a tolerance to Xyrem. I hope you guys are having more luck now! Please keep us posted!

Thank you Willow and runningfox for shedding some light on some things I was wondering about!

[Irishvamp7587]

KalypsO - I posted this on the other thread about Xyrem and anxiety but figured I'd post it here too so you could read more about the cross tolerance I was referring to. The unfortunate thing is I think we're missing the beginning of the conversation, it might have been done in another thread but I think there's still a lot of good info in this one.

http://www.talkaboutsleep.com/message-boards/viewtopic.php?t=13361&highlight

Seminole - I do the same thing, reading posts until I fall asleep at night. I keep telling myself my cutoff is 15 mins and then I need to turn off the computer and try to fall asleep but sometimes I get so into something I really push it and get so mad at myself later for it lol.

[Seminolegirl]

Thank you for the info Irish! It is nice to know that I am not the only one that stays up reading posts! Haha

[Kalyps0]

Ahh, I apologize for not getting back with you all sooner. I never received an email notification telling me that I had new responses! Thank you so much for all of the info. It really helps so much to know that other people are experiencing the same things.

I am happy to report that we may have made some progress. First...we have discovered the beautiful world of medical marijuana. I know that can be a touchy subject, but honestly it is really helping my boyfriend tremendously. If he smokes it before taking his Xyrem he is able to finally sleep. The two together have been a godsend. I just hope that like all of the other things we have tried it doesn't also lose it's effect after time. *fingers crossed*

Second. The doctor has prescribed Provigil for him. He is only on day 4 but things are changing. He wakes up at a reasonable hour and is finally able to function during the day. This has taken SO much stress off of his shoulders, and I believe that it helps him to sleep easier at night.

We will see how this goes and will definitely take advantage of your tips. Again...I thank you for your thoughts and support.