SteffaneGrace

My Time With Xyrem

47 posts in this topic

First of all, hello everyone. My name is Steffane. I am a 30 year old female and was diagnosed N with EDS about a year ago. I also am going through Dialectical Behavior Therapy for my Borderline Personality. 

 

I have been through many medications, most to help me FALL asleep. Which I have never had a problem with that (thanks to N), but my sleep has always been poor. I have not felt rested for years. I just figured it was me and dealt with it. I dozed off at the wheel about a year ago (on an off-road thank god) and spun out after hitting the gravel at about 45 mph. So...obviously that was the point where I decided I had a problem.

 

I ended up with a highly rated sleep doctor that gave me Xyrem. I did the normal deal--2.25 twice nightly for a week, then 3, then 3.75. Well 2.25mg put me to sleep, but I had a couple side effects (minor). I told the pharmacy and they said that I should stay with the med plans and go up in a week. So I did until I hit 3.75. That hit me too hard--I was suffering from confusion and because of that, I couldn't get practically anything done at work. I had to focus EXTREMELY hard to accomplish anything.

 

I was told by my doctor to go down to 3. I did and still felt detached/hazy but was only on the 3 for one night. I remembered I had been all right on 2.25mg and when I talked to my doctor again, he said if I was ok on 2.25 I should go back to that. Well now...the 2.25 doesn't seem to give me a restful sleep. I definitely sleep, but I am still exhausted during the day. I think I was foggy/detached feeling on 3, but I don't remember.

 

I don't know what to do. I feel like I am stuck between a rock and a hard place. I plan on just staying on 2.25 for another month to see how I feel. I'm scared because I still have some of the confusion and foggy feeling. Not anywhere near as bad. My doctor stated that the side effects, sadly, can stay in my system for a while. Is this true?

 

I'm having a problem focusing enough to come up with some good questions to ask. But if you have any advice on Xyrem, it is greatly appreciated. I have been on the medication rollercoaster for a good 10 years. For all kinds of different issues. So I am feeling a bit down about going through this medication rigmarole again.

 

 

Share this post


Link to post
Share on other sites

Xyrem takes a long time to adjust to. That titration schedule was waaayyy too aggressive. Especially for someone dealing with co-morbid psychiatric issues. From stories I've seen where Xyrem was actually successful, I have gathered you need at least a 2 week period, if not a month or more between increases. One account I read actually took 18 months to hit the 2 x 4.5 dose. And yeah, generally the low dose sucks and does next to nothing, That's why the doctors want to push you to the higher doses so quickly. But if you have a sensitivity to the med, slow and steady wins the race from what I can tell. I know my titration was way too fast and it started causing me serious mental stability issues. I had to quit and now I don't think it's an option any longer, just because my mind has built such a negative association with Xyrem. But don't give up because even though it doesnt work for some people, it's a god send for most patients.

Share this post


Link to post
Share on other sites

I agree with DR that you were titrated too quickly. The therapeutic dose range is 6 to 9 grams per night (3g x 2 to 4.5g x2). The 2.25 dose is subtherapeutic and unpredictable. It is not pleasant to be awake on Xyrem. My doctor had me on a sleep medication while I was titrating up.

It does take considerable time for Xyrem to erode your EDS. Many people on Xyrem still need a daytime stimulant.

You did not mention other medications you are on, so not sure about that.

As you are, be careful about how you feel while you are on Xyrem. With mental health concerns, you do not want to rock that boat too fast. I hope you find a short term solution with your doctor- it sounds like he listens to you.

Share this post


Link to post
Share on other sites

Thank you so much for the responses.

 

I am currently taking Zoloft at 100mg daily for handling my anxiety. I also have 5mg pills of Valium that I take as needed with panic attacks or severe anxiety. I only take the Valium once or twice a week and only during the day. I want the Xyrem to work, so I am extremely careful with when I take it, when I ate, when I go to bed, what I do before bed--that kind of thing.

 

I am just worried. I still feel foggy. Been back down to the 2.25 for about 4 nights now. I know it takes time. I am terrified that my mind won't get clear again--well clearer anyway. I have never had a completely fog-free mind. 

 

I'm pretty exhausted at work. I am an accountant and having such an issue with focus. Accounts payable, receivable, payroll....I am relied on for all of it. And things are still taking me longer to do than they did before my fast titration.

 

I want to avoid stimulants as much as possible. Nuvigil and Provigil didn't work for me. Adderall worked, but I had to taper off because it slowly stopped being as effective. I still had withdrawal and do no want to go through that again. Maybe I just turn to an energy drink every day again. (sigh.)

 

How long are these side effects supposed to last?....

Share this post


Link to post
Share on other sites

Xyrem, being a somewhat psychotropic drug, is really unpredictable. There are as many different stories as there are patients who have taken the drug. Sorry, I know that's not an incredibly helpful answer, but best bet is to just hunker down and mainline monster if you dont want adderall until you can get to one of the higher doses more safely.

Share this post


Link to post
Share on other sites

Update:

 

So I have been back down to 2.25 on the Xyrem for about a week now. I feel a little better albeit still foggy. Everything kind of seems surreal at times. For some reason everything seems more surreal when I am in a room with hard fluorescent lighting. Outdoors it isn't as bad. I am also going through Dialectical Behavior Therapy which teaches me mindfulness. It gets pretty hard and frustrating to keep a diary and practice mindfulness when I feel like I am on a cloud with blurred vision all the time :/

 

I have also gone back to napping during the day. Not long naps. Three hours or so. But I am falling right back into my EDS. *sigh*. As I stated before, I really don't want to go back on Adderall. But it might be required at this point. I have an exorbitant amount of school, work and volunteer hours coming up at the end of August and I'm not sure I will be able to make it through. Adderall didn't have any bad side effects or anything...I just didn't like weening off of it. I was awake with it, and then had to go back into severe EDS all over again when weening off.

 

Like most people on here, I am sick of not feeling like myself. Although I do appreciate the fairly solid sleep that Xyrem gives me....

Share this post


Link to post
Share on other sites

Xyrem takes a long time to adjust to. That titration schedule was waaayyy too aggressive.

Sadly, this is what is recommended in the physician's prescribing literature given to them from the Xyrem Success Program. I totally agree that this schedule is too aggressive -- especially so with a comorbid psychiatric disorder.

Share this post


Link to post
Share on other sites

Sadly, this is what is recommended in the physician's prescribing literature given to them from the Xyrem Success Program. I totally agree that this schedule is too aggressive -- especially so with a comorbid psychiatric disorder.

That makes sense. The quicker you titrate up, the more X they sell. And for probably 75% of the people on X, the quick titration wont cause any serious issues.

Share this post


Link to post
Share on other sites

Update:

 

So I have been back down to 2.25 on the Xyrem for about a week now. I feel a little better albeit still foggy. Everything kind of seems surreal at times. For some reason everything seems more surreal when I am in a room with hard fluorescent lighting. Outdoors it isn't as bad. I am also going through Dialectical Behavior Therapy which teaches me mindfulness. It gets pretty hard and frustrating to keep a diary and practice mindfulness when I feel like I am on a cloud with blurred vision all the time :/

 

I have also gone back to napping during the day. Not long naps. Three hours or so. But I am falling right back into my EDS. *sigh*. As I stated before, I really don't want to go back on Adderall. But it might be required at this point. I have an exorbitant amount of school, work and volunteer hours coming up at the end of August and I'm not sure I will be able to make it through. Adderall didn't have any bad side effects or anything...I just didn't like weening off of it. I was awake with it, and then had to go back into severe EDS all over again when weening off.

 

Like most people on here, I am sick of not feeling like myself. Although I do appreciate the fairly solid sleep that Xyrem gives me....

 

keep us updated

Share this post


Link to post
Share on other sites

Xyrem alone only works at reducing EDS when taken at maximum dose -- 9g per night -- and then, you can only expect a 35% reduction in EDS at that level.

Share this post


Link to post
Share on other sites

That is why Xyrem is primarily indicated for Cataplexy. I was on Xyrem for 7 months and I have now been off it for 7 months. My EDS continues to markedly improved even after discontinuing it. My cataplexy is now treated with Effexor and I am on 0 prescription stimulants.

 

IH is a different illness from Narcolepsy with cataplexy. They are not the same.

 

Not everyone will only see a 35%- that is not how it works.

Share this post


Link to post
Share on other sites

I know what you are talking about when you mention things being "surreal." I had that quite intensely for the first month - 6 wks on Xyrem, but it did finally go away as I became more accustomed to the medicine.

Share this post


Link to post
Share on other sites

Xyrem alone only works at reducing EDS when taken at maximum dose -- 9g per night -- and then, you can only expect a 35% reduction in EDS at that level.

 

I just started Xyrem 6 days ago and I'm diagnosed at narcoleptic without cataplexy and EDS. I was just trying to figure out for myself if all this is worth it because even the studies cited in the literature by the manufacturer show that the decrease in EDS is pretty minor. It seems like the only way to truly help with EDS is with stimulants which just scare me because you get used to them and then have to increase the dosage. I'm on pro vigil 400mg a day and it helps a tad but not very much. I still could take a nap at any point and sometime need to lay down even though the medicine doesn't let me sleep. I'm tired but just can't sleep. 

Share this post


Link to post
Share on other sites

I was on stimulants and although it sort of kept me awake, it still wasn't helping anything with my severely poor sleep quality. I just want to sleep well. I will deal with the EDS. There hasn't been a single medication so far that has helped my sleep aside from Xyrem.

 

Without the ability to sleep well, I feel like I can never get away. And with a feeling of such helplessness...well...let's just say it doesn't play nicely with Borderline Personality Disorder.

 

I have been at 2.25 for a week or so now. I also started taking the A-Z vitamin supplements. I think that helped quite a bit--the combination of the two. I still feel kind of out-of-it, but I think it is getting better? I cannot tell. I am in my senior year of college and working as much as I can---so the stress is also fogging my brain. I don't know what is what anymore.

Share this post


Link to post
Share on other sites

Hey everyone, I also just started Xyrem due to having chronic insomnia for a year and half with severe EDS. I started in late August on 2.25g 2x a night with very little relief. I then moved up to 3g 2x a night after a week and began to actually get restful sleep. For the week and a half that I was taking the 3g 2x a night, I almost felt euphoric when waking up in the morning and was happy, talkative, and had energy to go out and play tennis. Since I didn't tell my doctor I had increased to 3g, I ran out of medication before I could get a new shipment and had three restless nights without the medication. I started back on the medication last Saturday and the 3g 2x a night is only allowing me around 6 hours of sleep per night and I don't feel well rested at all when waking up. I've increased the dose to 3.25g 2x a night and plan to increase it to 3.5g 2x next week.

The question I have is has anyone experienced a decrease in effectiveness on Xyrem when missing a few doses? I literally went from being rested and ready for the entire day to being fatigued upon waking up and don't want to get out of my house. Any feedback would be much appreciated! :)

Share this post


Link to post
Share on other sites

You're playing with fire.  Don't increase your dose of Xyrem like that without your doctor's approval, or you could wind up like Michael Jackson.

Share this post


Link to post
Share on other sites

Yeah, hopping around on doses like that is really bad. You need to miss doses if you can help it and defintely to don't titrate up that quickly. You're dealing with a powerful psychotropic depressant there and it can send you aroudn the loop if you don't respect. Sorry, I don't mean to be harsh but I don't want you dead or with a crippling panic episodes like some of us have had when we messed with the Xyrem titration.

Share this post


Link to post
Share on other sites

I just got back from my Doctors appointment and we chatted about Xyrem for a bit. 

 

I was on it for a year and it stopped being effective, was off it for two months, and then went back on for two weeks.  Lets just say my stomach was nottttt happy about being back on Xyrem but my head sure was.  I noticed such a difference with my EDS with just a couple of nights of Xyrem sleep.  The funny thing is I didn't really notice a big decrease in my EDS/foogy head while I was on it for the first year... it was when I went off it did I realize just how much it helped.

 

My doc mentioned something that we have spoken about before (on the NN), but I didn't see it on this thread, and thought it may be worth saying.  Pretty much all of the side effects from Xyrem are from the salt content not from the GHB itself.  Sodium causes the panic, sweating, breakouts, stomach upset, headaches, ect, ect, ect... One of the reasons we need to tirate slowly is actually due to the fact that our body's need to adjust to all the sodium.  It's kind of like the being stuck out to sea with no fresh water.

 

My doc and I decided that I would take Xyrem 2 or 3 times a week and then Trazodone the other nights.  We are hoping the stomach issues will be minimal and I will still get the benefit of SWS.  I will also be playing with the dose a little bit.  trying to see how little I can take and still get the right amount of sleep.

 

With all that being said Xyrem is not black and white, there are lots of different options with it.  You just need to know your body, and talk to your doc.  Its a myth that you need to take X amount for it to work, that you can't skip a dose, that you can't take a weekend off and start back on the same dose.  This med does not need to build up in your system to work.

 

I am not suggesting that anyone play with Xyrem without talking to their doc!  I am fortunate that I can email mine anytime I need and he will respond pretty quickly.

 

Also I apologize if this was scrambled or if I rambled... too many thoughts at one time lol

Share this post


Link to post
Share on other sites

Yea, if they could just come up with medicinal GHB we'd all be better off. Though I don't sodium cna be blamed for quite everything. Certianly not the stuff I started "seeing" for lack of a better term. I think my anxiety is actually PTSD for my time with Xyrem :(

 

EDIT: "Its a myth that you need to take X amount for it to work, that you can't skip a dose, that you can't take a weekend off and start back on the same dose.  This med does not need to build up in your system to work." I wouldn't say that all those things are myths. It just depends from person to person. But most of the reported really bad side effects from Xyrem have happened to patients with aggressive titration schedules or those that have abruptly ceased than restarted treatment. It is true that Xyrem doesn't build in your system. But your body's response to a given dosage does take a while to reach steady state. Otherwise, taking it for extended periods of time, for example, would not reduce it's efficacy. That in and of itself proves there's a difference between taking Xyrem everyday versus treating it as an "as needed drug" Maybe I sounded overly alarmist, so yeah, you won't explode or get your hair set on fire or something if you monkey with your Xyrem treatment. But like any treatment plan, steady administration under doctor supervision is the best way to see results and minimize side effects.

Share this post


Link to post
Share on other sites

So with my doctor's permission I've been on 3.5g 2x a night for the past 4 days and I feel completely different from when I was taking 3.25g 2x a night last week. First off I'm only getting a little over 6 hours of sleep on this new dose (was getting almost 8 hours of sleep on the 3.25g 2x a night), have no energy and feel nauseated when waking up. I also have no sex drive and I feel completely numb to the world. I'm afraid I am either seriously depressed on this dose or becoming psychotic so I will go back to taking the 3.25g 2x a night. I also called my doctor to schedule an appointment later this week but has anyone ever had a complete change in symptoms when changing Xyrem doses?

 

Share this post


Link to post
Share on other sites

You have to use a stimulant while using Xyrem, and it can take up to 8 weeks for EDS to improve.  Just stay on the same dose and give it time.

Share this post


Link to post
Share on other sites

So with my doctor's permission I've been on 3.5g 2x a night for the past 4 days and I feel completely different from when I was taking 3.25g 2x a night last week. First off I'm only getting a little over 6 hours of sleep on this new dose (was getting almost 8 hours of sleep on the 3.25g 2x a night), have no energy and feel nauseated when waking up. I also have no sex drive and I feel completely numb to the world. I'm afraid I am either seriously depressed on this dose or becoming psychotic so I will go back to taking the 3.25g 2x a night. I also called my doctor to schedule an appointment later this week but has anyone ever had a complete change in symptoms when changing Xyrem doses?

 

This is kinda the exact sorta type thing I went through. I felt like I was going insane. I first felt it when increased my titration schedule, and then when Jazz was late with a shipment and I had to do without for 3 days, when I restarted I really went off my nut. All of January was utter misery. Could barely get 6 hours a night and then when I woke up I felt like slitting my wrists and then would have panic episodes for the rest of the day. You are of course free to do as you like and everyone is different and has different experiences and responses to drugs, but if I ever attempt Xyrem again, I'm starting at the base dose and spending a month at each level.

Share this post


Link to post
Share on other sites

You have to use a stimulant while using Xyrem, and it can take up to 8 weeks for EDS to improve.  Just stay on the same dose and give it time.

You don't have to, but many people supplement with stimmies. However, some patients feel the Xyrem works well enough on it's own. It's another one of thsoe "it depends" situations. I cannot tolerate stimulants at all as they make me completely manic until I promptly crash into utter stupefaction.

Share this post


Link to post
Share on other sites

DeathRabbit, how did you recover from the symptoms you experienced when you got the new shipment of Xyrem? I am really lost right now because if I take more than 3.5g 2x a night I'm afraid my symptoms will worsen but if I go back down to 3.25g 2x a night I won't get very much sleep.

Saying I'm frustrated is an absolute f***ing understatement. Within the last two weeks I went from feeling so great on the Xyrem that I cried at night (because I was getting restful sleep) to now feeling almost not human because I feel no emotions and don't want to deal with anyone (thank god my parents are gone for the week).

Share this post


Link to post
Share on other sites

I didn't. I quit the Xyrem and I'm on trazodone and still taking 1mg of Xanax daily to combat what Xyrem did to me. Not saying it was a bad drug, but it certainly didn't work for me and I think it gave me an almost PTSD response which I believe is why the anxiety is still here. Damn anxiety feedback loops. Sorry it isn't working out for you :/ . All I can say is that by and large, most successful experiences with Xyrem were when people titrated extremely slowly and and steadily. Doesn't always hold true. Meg seems to be able to mess with her dosage without any repercussion, and I have known bodybuilders that illegally absued GHB in a sporadic manner and none of them had issues. But I believe the tortoise usually beats the hare in the case of Xyrem. With any luck, all the gov't funding being dumped into Orexin agonists will soon pay off and all this todo abotu Xyrem will be a moot point. But you might try perhaps a low dosage of one of the vigil drugs in the morning perhaps. Perhaps a non benzodiazepene class anxiolytic like buspar could be used to help you sleep more at night. I think you are doing the right thing by heading back to the doc. You might even decide to temporarily drop the Xyrem and then maybe try again when you get your head screwed back on again.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now