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Xyrem-Adverse Reaction

Xyrem Provigil Side Effects Adverse Reaction Help Me Treatment

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#1 Kellie

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Posted 16 April 2013 - 10:23 AM

Hello Everyone,

 

I was wanting to see if anyone else has had a similar experience to Xyrem. I am so fustrated becasue the first few days on Xyrem I felt great and more awake. I started Xyrem on a Thursday April 4, 2013 for Narcolepsy with Cataplexy. The fist night I took my first dose at 9pm and set my alarm for 1am but woke up at around 12am and since it had been at least 2.5 hours I turned off my alarm and took my second dose. I woke up at 4am and could not go back to sleep. The next night Friday night I took my first first dose at 9pm and then again at 12:30 am and didn't wake up until 6:30am. I felt great the entire day. Same thing on Saturday but all day Sunday I did feel kind of looy and dizzy and had a headache. I had a huge professioal exam on Monday so I spent the entire weekend cramping for it. Also on Thursday, Friday, Saturday, and Sunday I drank two cups of coffee in the morning, and continue to take my provigil (200mg am and 200mg at 2pm). Also I had a constant dry mouth from the first day of taking xyrem so I had been drinking nothing but water and lots of it. On Monday is when things started getting bad. My night time dosage times and wake up times stayed to same. I had anxiety about my big test. I drank a cup of coffee and took my am provigil dose. I had anxiety, was dizzy, felt kinda jittery, my let ear was hurting on the inside, the left side of my neck and left shoulder hurt, my neck felt really stiff but I wote the neck and should pain off to having slept in a wrong position and being on Xyrem I slept so hard my body didn't wake me up to move. I was running around the house that morning getting the kids dress and fed and ready for school and I got so dizzy and felt like I was over excerting myself I got light headed and collapsed in my living room. I just had to stay there and calm myself down and breath. After it passed I was able to get up and continue on. When I was driving to take my text I felt like my whole equlibrium was off. The stopping and going and the cars getting closer and futher away was making me so dizzy. I had extreme anxiety the whole day and like I was over stimulated so I did not take my 2pm dose of provigil and my test started at 1 pm. I felt off my entire test but I passed with flying colors so that was good.  Because I felt over stimulated on Monday, Monday night I took my Xyrem as usual and on Tuesday moring I decided to not take my provigil to see if that would make a difference. I still had my coffee. I was still jittery, dizzy, had a head, still had my ear ache, and the left neck and shoulder pain. and the stiff neck feeling. The Xyrem nurse happened to call me on Tuesday to check in with me and I told her and then the pharmasist about what I had been experiencing. They said to talk to my doctor about the anxiety feeling but that all my side effects were normal except for the axiety. They were also concerned about me collapsing in my living room and wanted me to talk to my doctor about that too. So on Tuesday night I decided not to take my Xyrem. On Wednesday moring I had to drive to a town 30 mins away to pick up something for my husband. On the way I got sleepy so I took my provigil. On the way back I started to get really jitter and my hands started to shake. I started kind of freaking out so then I got really bad anxiety. By the time I made it to work which is also where my husband was. I called him to come get me from the parking lot. He took me inside to lay down. I could feel vibration through out my entire body in every muscle. My face was even vibrating and I could feel muscles in my back twitching. My hands and arms were shaking uncontrollably and I was so cold. I hadn't taken the Xyrem the night before. My husband was upset with me. He was already on the fence about me taking Xyrem. He was saying that all these medications that cause ups and downs that I was taking was not normal and I need to stop. I was so freaked out I agreed. My husband is a surgeon btw, but nothing to do with neurology or sleep medicine.  I haven't taken the Xyrem since I have been waiting to restart my provigil. I want all of the Xyrem out of my system before I start taking the Provigil again. I can't find anything on the internet about the side effects that I experienced. So I dedcided to post to see if anyone had any thoughts or similar experiences. The first few days on Xyrem I felt more alive that I ever have so I am so fustrated. I called my doctors office and spoke with his nurse and she relayed it to the doctor. The nurse called me back and said the doctor said to stop taking the Xyrem. I wish I could have spoken directly with the doctor but I guess I will have to talk to him at me next appointment. I have questions like maybe what I experienced was a drug interaction between Xyrem and Provigil and maybe I should stop the Provigil instead of the Xyrem. Maybe the two together is to much for my little body. I am a 27 yr old female 5'5 and only weight 104lbs. What do you think?



#2 Kellie

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Posted 16 April 2013 - 10:34 AM

I forgot to mention that I had been on Provigil by itself for six months with no problems. Also since being off of Xyrem and Provigil for a week now my body is back to normal which also includes extreme daytime sleepiness. And, I have never ever had a problem with anxiety.



#3 DeathRabbit

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Posted 16 April 2013 - 02:03 PM

Myself included, three of us on this forum have reported really bad anxiety on Xyrem. My doctor also has another case, himself that he knows about. It's a side-effect that's been repeatedly reported to Jazz, but it seems they still give a complete disavowal of it. Maybe it's still a statistically small amount of people who have anxiety, but still, I'm beginnign to worry they are covering something up here. I found at least one study on the internet reporting a psychotic break will on Xyrem. My own anxiety, which I struggled with years earlier, came back 3 fold on the Xyrem, and even 2.5 months after cessation, I'm still on Xanax, because anxiety Xyrem gave me just won't go away. It's a miracle drug for some PWNs. But others just get a really bad drug trip out of it.Basically, since the half-life is so short, you experience withdrawal each morning. Some people don't have any major withdrawal symptoms. Others, like us, get anxiety, headaches, shortened sleep time (I too would wake up as soon as the last dose wore off, too anxious to fall back to sleep.) What titration schedule were you on?



#4 Kellie

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Posted 16 April 2013 - 06:02 PM

2.25g x twice a night. I only took it for five days before I was told to stop taking it so I never got to increase my dosage. So did you stop taking Xyrem because of the anixety or are you still taking it?



#5 DeathRabbit

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Posted 16 April 2013 - 10:55 PM

I quit that stuff. I started having episodes bordering on Schizophrenia. I was curled up in a ball on my bed praying the thoughts would stop or I would die, didn't much care which at the time.



#6 h.wynn

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Posted 18 April 2013 - 12:50 PM

Call Xyrem ask to talk to a pharmacist. See what they say.

#7 cloudtalk

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Posted 29 April 2013 - 05:02 PM

Xyrem caused me to have a lot of anxiety and panic attacks, and I hadn't ever had problems with those before. It also caused me to get shaky in combination with other medicines. And my muscles would get really tense with the anxiety, it was a very physical anxiety. I didn't notice what was going on with me for a while, partly I think because everything was so different from the beginning with being able to stay awake all day. It seemed really great at first. It got really bad when I got to the 3.5 dose, which I'd moved up to pretty quickly, and I had to stop taking it for a while. Then I started from the lowest dose again and have been moving it back up very slowly, being more aware of how it affects me, and it hasn't been as bad. I also started taking lexapro to help with anxiety, and have a ativan prescription in case I get panic attacks. I feel sometimes like it's a balancing act between how much sleepiness/tiredness I can deal with and how much anxiety I can deal with. I don't know if the one-size-fits-all way they try to get everyone to take xyrem is the best way. I would think smaller people would need smaller doses, but I don't know. Maybe you could see if you could start with a lower dose of xyrem. But, a lot of people can't tolerate xyrem, you certainly wouldn't be alone in that. Those side effects are no joke.



#8 Kellie

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Posted 30 April 2013 - 07:10 AM

Well I have come to the conclusion that what I experienced was a panic attack. I since restarted Xyrem and have so far learned how I can avoid anxiety while on Xyrem. When I wake up in the morning the first thing I do is take 500mg of Magnesium, 600mg of Calcium, 99mg of Potassium, eat a bannana, and down a room temp bottle of water (since room temp is easier to down). I have learned that I can not take stimulants or drink coffee while on Xyrem because It will give me Anxiety and the jitters. When I restart Xyrem on the 2.5 x 2 dose I was able to drink one cup of coffee in the morning but after moving up to the 3.0 x 2 dose I tried to drink coffee and I started experiencing the anxiety and shaky hands. I might try coffee and stimulates again after I reach my maximum dose and have been on it long enough for my body to get use to it. But, for now while my body is still trying to stabilize I will forgo stimulates and coffee.

 

I also take a multivitaimin gummies and vitamin C gummies in the morning. I have been sleeping great on the Xyrem. I am getting the full four hours of sleep on the first dose and second dose. I usually take my first dose at 9pm and then my second dose at 1 pm and wake up around 5 or 5:30. Before Xyrem I would go to bed around 8pm and wake around  6am. So with the Xyrem I am getting a restful 8 hours of sleep vs an unrestful 10 hrs of sleep. My EDS has improved. I still wish I could take stimulants though because I still feel I could benefit from them.

 

With my vitamin regiment I have had NO SIDE EFFECTS. Before I had headaches, muscle aches and tightness, and anxiety. I think my anxiety went away because of the combination of no stimulants, no coffee, and the magnesium.

 

How to take magnesium: Start at a low dose like 250mg and work up till you start experiencing diarrhea and then go back to the high dose you can take without diarrhea. The max dose you can take without diarrhea is the amount that your body is magnesium deficient. 

 

I truly believe that Xyrem depletes the body of electrolytes such as calcium, magnesium, and potassium and that is why we start experiencing side effects of calcium deficiency, magnesium deficiency, and potassium deficiency.



#9 DeathRabbit

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Posted 30 April 2013 - 09:25 AM

Well, that makes sense, due to the high sodium content. You know, a part of me wondered idly if it was some sort salinity induced madness. Like cloudtalk said, the anxiety attacks were very physical. Sometimes there would be a mental component, other times it jsut seemed my body would go into the physical signs of absolute terror for no discernible reason. But I'm not willing to risk going back on it. I am still taking Xanax to calm the shakes 3 months later. I'd have to titrate down on that which cause rebound anxiety, in addition to whatever latent effects of the Xyrem treatments still have. I think sometimes, if you have a drug trip so bad, it can cause sort of a circular loop of anxiety that sticks with you for a long time.

 

EDIT: Of course, if it is the salt, none of this would be an issue if we could just use actual medicinal GHB. Half the bad side effects from Xyrem are due to the salt content. It's also, I believe, responsible for cutting the bioavailability so badly that you have to do the stupid fasting thing. But our Dear Leaders have decreed it shall not be, in their infinite(ly small) wisdom.



#10 pinkpeony

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Posted 13 November 2013 - 09:59 AM

Well, that makes sense, due to the high sodium content. You know, a part of me wondered idly if it was some sort salinity induced madness. Like cloudtalk said, the anxiety attacks were very physical. Sometimes there would be a mental component, other times it jsut seemed my body would go into the physical signs of absolute terror for no discernible reason. But I'm not willing to risk going back on it. I am still taking Xanax to calm the shakes 3 months later. I'd have to titrate down on that which cause rebound anxiety, in addition to whatever latent effects of the Xyrem treatments still have. I think sometimes, if you have a drug trip so bad, it can cause sort of a circular loop of anxiety that sticks with you for a long time.

 

EDIT: Of course, if it is the salt, none of this would be an issue if we could just use actual medicinal GHB. Half the bad side effects from Xyrem are due to the salt content. It's also, I believe, responsible for cutting the bioavailability so badly that you have to do the stupid fasting thing. But our Dear Leaders have decreed it shall not be, in their infinite(ly small) wisdom.

TOTALLY experienced the same thing. Its not fair they dump sodium in something they know we have to take just in case it gets in the wrong hands.



#11 IdiopathicHypersomniac

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Posted 14 November 2013 - 06:58 PM

They're not dumping sodium in there on purpose.  That's just the way the drug is.  It has to be made with either sodium or potassium.  The salt isn't causing those problems -- it's the damn drug.  Salt doesn't cause brain zaps.  I took that crap at just 1 gram and it felt like my brain was falling every few minutes.  Scary stuff.  At that dose, all it should have done was make me a little drunk and a little high.



#12 Hank

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Posted 14 November 2013 - 07:31 PM

They're not dumping sodium in there on purpose.  That's just the way the drug is.  It has to be made with either sodium or potassium.  The salt isn't causing those problems -- it's the damn drug.  Salt doesn't cause brain zaps.  I took that crap at just 1 gram and it felt like my brain was falling every few minutes.  Scary stuff.  At that dose, all it should have done was make me a little drunk and a little high.

The low doses of Xyrem are unpredictable. At higher doses, it has a sedating start and a stimulating finish. At lower doses it is a mixed bag.

 

GHB is abused by partygoers at raves at low doses. It is used as a date rape drug at higher doses.

 

The initial starting doses are not going to give you much benefit. The side effects are more accurately unpredictable responses.



#13 oldgator

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Posted 14 November 2013 - 08:45 PM

I've been on Xyrem for 2.5 months now and have learned a few things. Provigil did nothing for me before I started taking Xyrem and now I can no longer take Provigil because the provigil works so well when I take Xyrem that I get all dizzy and shaky. I was down to 50mg of Provigil but after a few days on it I would start to get really dizzy again. My dr just told me to stop taking it and I haven't had any problems with dizziness at all for the past week which is great. To combat the EDS, I take 10mg of Adderall in the morning to help me wake up and then I take a 36mg extended release Concerta but I'm thinking I can take a lower dose of that. I do also have ADHD but the adderall and Concerta together have made me slightly jittery for 1-2 hours when they overlap. I still have no appetite what so ever. I've lost 18 lbs so far (I started off at 130 lbs - I'm 5'3") and am so scared I'm going to have stop Xyrem because of the nauseousness. This medication has done wonders for me!!!!



#14 pinkpeony

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Posted 14 November 2013 - 09:19 PM

They're not dumping sodium in there on purpose.  That's just the way the drug is.  It has to be made with either sodium or potassium.  The salt isn't causing those problems -- it's the damn drug.  Salt doesn't cause brain zaps.  I took that crap at just 1 gram and it felt like my brain was falling every few minutes.  Scary stuff.  At that dose, all it should have done was make me a little drunk and a little high.

Hmm that sounds about what happened to me the first few times I tried Xyrem. I also felt a burning sensation on my skin. Came to realize I took it too closely to the time when I ate. I had to wait 3 1/2 - 4 hrs after eating or drinking to take the Xyrem. 



#15 IdiopathicHypersomniac

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Posted 14 November 2013 - 10:14 PM

Thanks for the info -- I cannot believe that anyone would use this stuff for fun.  I have no problems trying it again at the higher doses, but not at home alone -- in the sleep lab where I'm monitored.  Or, they can send Michael Jackson's doctor over to my house to watch me.



#16 deerarecute

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Posted 03 December 2013 - 04:04 PM

Dry skin feeling - ODD Side effect.   I had a horrible sensation that the skin on my neck and upper back was extremely dry....but to the touch, the skin was perfectly moist.  It was so bad I had to stop taking the Xyrem...and then that sensation went away.  It is a shame, because I was much more awake on the Xyrem.  I have a huge amount of difficulty going to sleep and getting up...and the Xyrem totally got rid of that.  I could get up without hitting the snooze button a dozen times.   I slept very well, but of course, when I had to get up and go to the bathroom, I felt like I was on an amusement park ride.   I did have anxiety, which started decreasing when I stopped the Xyrem.   I am really torn about whether I should take it.   The drug is very strong and I wonder about the long term side effects to my body and my psyche.   BTW, I HATE that salty taste.....OMG, it is so disgusting.   I don't know if it has to be that way, but I wish it wasn't.  It made me gag.   The only way I could drink it was to use a straw and try to avoid the taste buds.   I also felt kind of puffy.  I realize I am all over the place, but I want to know if anybody else felt this way.  Thanks, all.



#17 IdiopathicHypersomniac

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Posted 03 December 2013 - 08:10 PM

I started it at 2.25 grams twice nightly, and it seems to be helping, although I am using it with Ambien.  What dose are you on?



#18 deerarecute

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Posted 04 December 2013 - 12:56 AM

I am taking 3.5 at this point. Talked to the pharmacy folks today. They said that others have complained of the strange dry skin feelung. I am supposed to talk to the doctor about it.

#19 Jennell

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Posted 05 December 2013 - 10:43 AM

Dry skin feeling - ODD Side effect.   I had a horrible sensation that the skin on my neck and upper back was extremely dry....but to the touch, the skin was perfectly moist.  It was so bad I had to stop taking the Xyrem...and then that sensation went away.  It is a shame, because I was much more awake on the Xyrem.  I have a huge amount of difficulty going to sleep and getting up...and the Xyrem totally got rid of that.  I could get up without hitting the snooze button a dozen times.   I slept very well, but of course, when I had to get up and go to the bathroom, I felt like I was on an amusement park ride.   I did have anxiety, which started decreasing when I stopped the Xyrem.   I am really torn about whether I should take it.   The drug is very strong and I wonder about the long term side effects to my body and my psyche.   BTW, I HATE that salty taste.....OMG, it is so disgusting.   I don't know if it has to be that way, but I wish it wasn't.  It made me gag.   The only way I could drink it was to use a straw and try to avoid the taste buds.   I also felt kind of puffy.  I realize I am all over the place, but I want to know if anybody else felt this way.  Thanks, all.

 

 

Do you add anything to it?? I put a HEALTHY helping of the liquid Crystal Light in with the dose!! Personally Pomtini is my fave flavor for the Xyrem mix!! :)



#20 pinkpeony

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Posted 12 December 2013 - 09:11 PM

I can't seem to stomach it unless I mix it with Koolaid but I hate the thought of that sugar on my teeth after the second dose. Im always too tired during the middle of the night to brush. Xylitol might be the thing to mix the koolaid with instead of sugar. Wow.. I could never take it by itself. 







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