44 posts in this topic

Did you have this feeling at all times? Reason I ask is that I have developed a hypersensitivity to fabrics in my back and shoulders. When I read your post, I can see how the feeling I have might feel like really dry skin. My sensitivity is only to fabrics though. When I wear a shirt, the fibers feel like needles sticking into my back, and creases and seams feel like someone is pinching my skin. I have been on Xyrem for almost 4 months, but this issue developed about a week or so ago, so I do not if Xyrem is causing it.

It came on suddenly and then I had it pretty constantly.   Maybe feeling like having dry skin seems like a lightweight complaint, but it was miserable enough for me to stop the Xyrem altogether even though it did wonders for my sleep.  The dry feeling made me anxious. When I reported the side effect to the Xyrem people they said that this is not a new complaint and they have had others describe the same phenomenon only in sightly different terms.  Good luck to you.  

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Your complaint is far from a lightweight one, especially if it's any bit similar to what I'm experiencing. I'm calling Xyrem tonight to discuss it with them.

 

Somewhat off topic, but I receive periodic check-ins from Xyrem regarding how I'm doing on the medication, and my understanding is that the check-ins are standard for anyone on Xyrem. I've never taken a medicine that was of the classification or long-term use nature of Xyrem, but the check-ins are new to me. Do these type of check-ins take place with other medicines that I am just unaware of?

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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.

When I took nuvigil with xyrem I became a wreck, more so then usual. I would hallucinate twice as much and became insanely paranoid. I was afraid to go outside, I was afraid my parents and everyone in resteraunts were looking at me. It was unbearable and I stopped taking nuvigil. My 3 months with nuvigil + xyrem were hellish and the HH became worse then ever before. I used to just hear doorbells before N, on Nuvigil I could have a single bad "thought" or "Cataplexy attack" and my nightmares would join me in the real world.

 

Now that I am on vyvanse I dont have the same type of schizophrenic symptoms. I hear noises that nobody else does, working in a quiet room with another person while you hear loud buzzing noises that sound like construction sites is horrifying. I wake up the second my dose is over and I feel awful. I want to stay in bed and go back to sleep but that brings worse anxiety. I have never had an awful cataplexy attack until I started xyrem, now my jaw will hang open especially when im stressed or anxious. I feel light headed when this occurs, sometimes I feel strange crawling on my head or a throbbing behind or in my ear. Muscle pains and the works. I am completely unable to relate to people at times because I cannot hold a conversation anymore. Instead of saying, "Im going to change the ink in the printer", I resort to a mystic, "im going to print the inker". This changing of words happened occasionally before I was diagnosed with N. Now I cant talk to people because when they say hello I wonder whats hello? And space out or say something weird. Now I just say hello or thank you and run to somewhere I can be alone. Life was never this awful before xyrem. I would sleep for 21/2 hours a night or stay up for days, but my quality of life has probably decreased. I went from picking up girls to being reduced to tears and shaking uncontrollably by one negative comment from someone I didnt care about. Im Okay most of the day and can function but once I get tired its all over and Ill bounce from thread to thread and -

 

I just realized im on autopilot. Sorry if this post is sloppy, im up waaay too late to contribute. I was making food two and a half hours ago and now im here posting.

 

- my family tell me to just be myself, but what I think about or say now offputs people. Its makes me sad because most of the time I can be intelligent underneath the delerium but still cant communicate properly. I used to have so many friends and got along great with people, my quality of life has plumetted since taking xyrem.

 

Please let there be someone out there who can relate, theres no support groups here and my doctor only sees me once a month. Ive never met another PWN and I'm scared *BEEP*less.

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You have just described what I experienced when on Xyrem and Provigil. I experienced psychiatric side effects and weight loss like I had never experienced. I was more awake but I was an empty, terrified shell of myself.

 

I let it go on too long and just would not stop trying to make it work. Ultimately, I requested to be in the hospital because I was terrified. I came off everything and got my appetite back and my head began to clear.

 

Even a year after being off Xyrem,  my EDS is waaayy more manageable- it really did dig me out of a giant sleep pit.

 

If it is not working for you, its not working. Talk with your doctor ASAP and make some changes.

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I have a weird feeling at doses higher than 3.75,  It isn't dry skin, but it is a sort of tingling, or creepy crawly feeling under my skin.  Also sort of an anxiety feeling, but not exactly, and it stays with me until about 3 in the afternoon.  I don't like it.

 

I do like the Xyrem, and I am going to try the vitamin regimen mentioned.  

 

This time around, I am drinking large quantities of water before the Xyrem and during the night, and that is seeming to help.

 

I am also trying to lay off other sleep meds, but have some if needed.

 

Is there a window for driving after taking Xyrem like there is for ambien?  I thought I was told it is ot of your system after 4 hours...

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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.

 

I have a weird feeling at doses higher than 3.75,  It isn't dry skin, but it is a sort of tingling, or creepy crawly feeling under my skin.  Also sort of an anxiety feeling, but not exactly, and it stays with me until about 3 in the afternoon.  I don't like it.

 

I do like the Xyrem, and I am going to try the vitamin regimen mentioned.  

 

This time around, I am drinking large quantities of water before the Xyrem and during the night, and that is seeming to help.

 

I am also trying to lay off other sleep meds, but have some if needed.

 

Is there a window for driving after taking Xyrem like there is for ambien?  I thought I was told it is ot of your system after 4 hours...

Stay away from ambien, doesn't help with sleep and is extremely addicting. Psychosis & withdrawl symptoms make it not worth.

 

So that's why I've been feeling drawn to bananas! I was having major digestion issues but by prying myself away from gluten and sticking to non processed foods like fruits&veggies, my health and mood has increased durastically. I'm interested in trying out your vitamin regiment. Right now I supplement with fish oil and the super b6 complex by nature-made. I've noticed when I don't drink enough water I find myself lacking in the communications department, which is a great incentive to chug away as much water as I can. By changing my diet and adding those supplements I think I can push myself to stay on xyrem for awhile longer.

 

I'm very grateful for the people who brought their experiences to the forum, without your posts I would be in a very different mindset right now! :D

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I hope it's acceptable to bump an old thread. I'm in the middle of a similar experience as the OP with Provigil after taking it with Xyrem. I had been taking Provigil once or twice a week for months prior to starting Xyrem. (I don't have narcolepsy but suffer from Insomnia and other medical issues causing daytime fatigue.) I was unable to take Provigil more often as it further deteriorates my sleep as well as rapidly loses effectiveness, probably because of the former. I took Provigil the first couple nights I was on Xyrem as the Xyrem dose was too low to be effective, but since then had been getting by on Xyrem alone for several weeks. Two weeks ago, after only managing 3 hours sleep, I took Provigil in the morning. I experienced tremors and muscle spasms, especially in my face but also elsewhere, side effects which have waxed and waned since then but not [yet] gone away. It seems like it may have gotten slightly better, but it's taking far longer than I expected or hoped. I've taken the Xyrem two times since then; it didn't seem to affect anything, but I'm anxious about taking any medication until my symptoms abate. Has anyone had side effects which lingered as long as mine? How long did they take to dissipate fully?

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When you said "with Ambien" I was like whoa - that's a mix I wouldn't care for :)

 

The lower doses are a total mixed bag - seems that way across the board.  Crazy thing I've experienced is the eating before game.  I can't eat for 3 hours before taking it - or else it's not even effective.  If I have a heavy meal and then crash out just from being tired - If I take my 1st dose then I'll be awake for 3 hours on a horrible ride.

 

Best thing is - eat a lighter dinner and then wait out the time until you can take it.  2 hours just wasn't enough for me and it made a major improvement going out a longer time.

 

I've tried the 3 dose game - but hard for me to wake up a 3rd time let alone 2.5/3 hours later for dose #2.  If I get a bigger or louder alarm clock my wife is going to kill me :)

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The whole thing is a mixed bag.  The company has not released data -- how many people have been taking it for, say, 20 years?  That's what I want to see.  From what I can tell, that number is maybe 10 or less.

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I've been considering the xyrem.  Sounds like it's become popular.  I did the price check thing on it.  I can see where you might come up with those numbers.  They want $3000 dollars for a bottle.  And yet it stills sounds to me like it could be something that could be a very effective way to get regular.  I don't like alcohol.  This makes more sense.

 

But for $3000 all I would have is a script.  I'm not funding it.  Not if it's just GHB.  There is a limit that medicine needs to recognize.  This stuff just makes it fast and painless.

 

 

Serenity now, insanity later.

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I've been considering the xyrem.  Sounds like it's become popular.  I did the price check thing on it.  I can see where you might come up with those numbers.  They want $3000 dollars for a bottle.  And yet it stills sounds to me like it could be something that could be a very effective way to get regular.  I don't like alcohol.  This makes more sense.

 

But for $3000 all I would have is a script.  I'm not funding it.  Not if it's just GHB.  There is a limit that medicine needs to recognize.  This stuff just makes it fast and painless.

 

 

Serenity now, insanity later.

 

It's junk.

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On 11/14/2013 at 6:31 PM, Hank3326 said:

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.

That's so odd. (forgive me, I know all of these threads are really dated..) I am on a really low dose and have stopped taking the second dose because it made me nauseated for well over 24 hours.

Just one dose seems to help a tiny bit without any weird side effects.

However, I have been getting unusually shaky lately, (since I started the drug) like a low blood sugar kind of thing. Two nights ago, a couple hours after I had eaten, my blood sugar took a sudden plunge, and I started feeling weak and shaky all over. In addition to that, just a few days ago I started feeling weird. One day, I was "seeing stars" or little flashes of light in my peripheral. That was followed by a borderline tunnel-vision feeling, and I'm convinced that I would have collapsed if I hadn't eaten. 2 days later, I started having this crazy pain down my left leg, which spread to my arm and my other leg. I thought it was the way I was sitting, but I stood for a while and it didn't subside. The pain lasted all day, even with an occasional pulsing feeling when I stood, and a killer headache accompanied the leg pain by the end of the day.

I hope that you're right, and a dose increase will help me. I really need this. I need it to work. 

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18 hours ago, ffish said:

That's so odd. (forgive me, I know all of these threads are really dated..) I am on a really low dose and have stopped taking the second dose because it made me nauseated for well over 24 hours.

Just one dose seems to help a tiny bit without any weird side effects.

However, I have been getting unusually shaky lately, (since I started the drug) like a low blood sugar kind of thing. Two nights ago, a couple hours after I had eaten, my blood sugar took a sudden plunge, and I started feeling weak and shaky all over. In addition to that, just a few days ago I started feeling weird. One day, I was "seeing stars" or little flashes of light in my peripheral. That was followed by a borderline tunnel-vision feeling, and I'm convinced that I would have collapsed if I hadn't eaten. 2 days later, I started having this crazy pain down my left leg, which spread to my arm and my other leg. I thought it was the way I was sitting, but I stood for a while and it didn't subside. The pain lasted all day, even with an occasional pulsing feeling when I stood, and a killer headache accompanied the leg pain by the end of the day.

I hope that you're right, and a dose increase will help me. I really need this. I need it to work. 

Are you guessing on the blood sugar thing, or checking with a glucose monitor?  That feeling can be caused by all sorts of things, including sudden drops in blood pressure.  And either way, you should call your doctor instead of just continuing.  Better safe than sorry!!

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On 5/22/2016 at 1:54 PM, ffish said:

That's so odd. (forgive me, I know all of these threads are really dated..) I am on a really low dose and have stopped taking the second dose because it made me nauseated for well over 24 hours.

Just one dose seems to help a tiny bit without any weird side effects.

However, I have been getting unusually shaky lately, (since I started the drug) like a low blood sugar kind of thing. Two nights ago, a couple hours after I had eaten, my blood sugar took a sudden plunge, and I started feeling weak and shaky all over. In addition to that, just a few days ago I started feeling weird. One day, I was "seeing stars" or little flashes of light in my peripheral. That was followed by a borderline tunnel-vision feeling, and I'm convinced that I would have collapsed if I hadn't eaten. 2 days later, I started having this crazy pain down my left leg, which spread to my arm and my other leg. I thought it was the way I was sitting, but I stood for a while and it didn't subside. The pain lasted all day, even with an occasional pulsing feeling when I stood, and a killer headache accompanied the leg pain by the end of the day.

I hope that you're right, and a dose increase will help me. I really need this. I need it to work. 

I'm with purpley on this one except I'd go farther. I'd stop taking it immediately and ask your doctor. You can always restart the stuff. Xyrem seemed to cause a huge increase in my blood pressure and I don't think it was from the sodium. I only took it for a few weeks, thinking it'll get better at a higher dose. Eventually I felt as though I was about to have a seizure while on the medicine. It's been a month since I stopped and I still don't feel right.

The concept that xyrem works primarily by consolidating sleep is utter nonsense and dangerous. It sounds better and safer to say Xyrem works by consolidating sleep than it causes a reactive increase in NE. It's a psuedostimulant being misrepresented by Jazz as a sleep enhancer. It can significantly increase the levels of norepinephrine in your body, which is probably why it works as an anticataplectic.

The symptoms you're describing are also potentially caused by nerve damage, high blood pressure, electrolyte imblances and so on. All of which can be extremely dangerous. If you've already taken it by the time you read this, check your blood pressure and ask your doctor about ordering blood work and so on. Trust me, you don't want to risk nerve damage, stroke, aneurysm, etc. Pain radiating to your extremeties may indicate nerve damage. Pain radiating to multiple extremeties can be caused by problems with the brain. To me, it sounds like you're having a serious adverse reaction. Don't let temptation to feel better lead to long term or permanent problems. I wish I'd never touched the stuff. Not trying to be a fear monger, I just don't want you to experience the same thing I did. 

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I have continued taking just one dose of Xyrem nightly since I posted. I haven't noticed any weird reactions like before.

I am familiar with the feeling of low blood sugar as I have lived with a few hormone (GH/TSH/T3/T4) deficiencies for most of my life, and that is one of the effects of these imbalances. I may need a dose increase there, but what I described is still very unusual because of how sudden it was. The flashes of light and leg pain has nothing to do with hormone deficiency, though; I've never experienced anything like that. 

I've been trying to drink more water, and that may be helping. I'm going to start taking the whole first dose + a second dose of half the amount in a week if I don't experience any more side effects. I'll update if anything changes. 

Thank you very much for your advice, but since I kept taking the medication without problems before seeing your replies, I'm not too concerned. I will stop if anything happens again.

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On 1/1/2014 at 0:06 PM, CreativeConfusion said:

I'm so glad to hear someone else was having difficulty with xyrem too! Every time I tried to get help with my side effects, people would just give me weird looks and say something along the lines of, "That's not supposed to happen." As if I hadn't already figured that out! 

I've been having this thing happen where if I don't fall asleep fast enough, I start having extremely violent muscle contractions in my abdomen (I'm basically laying on my side doing crunches against my will), my anxiety (I'm already being treated for ptsd and panic disorder) goes haywire, I start screaming and crying and basically acting like some kind of madman. It looks like I'm having some kind of bizarre seizure except I'm fully conscious to experience every moment of it. My mother usually has to come in and hold me still until I can calm down and go to sleep, and it can take hours.

My question to everyone else is, once xyrem is out, what's in? What do you take for sleep instead? I took trazadone for years before my official N diagnosis, but it wasn't cutting it anymore. We tried ambien before xyrem and it made me hallucinate. We tried to ambien again thinking hallucinations would be more tolerable than me screaming and accidentally hurting myself every night, but with the ambien my dream sagas have come back and my quality of sleep has gone to pot. Suggestions? Please? Anyone?

Yeah....I just had this happen a couple nights ago. Experiencing Xyrem awake is horrible! So thankful I have a strong supportive husband who was there to tell me that he wouldn't go to sleep until he saw I was alright. Laughing/Crying/unable to breath normal. I wouldn't wish that on anyone. I literally felt like I was spinning upside down uncontrollably while being buried alive with heavy rocks. Not fun. Hubby held my hand and helped ground me until I could fall asleep. 

 

I don't know what else is in! I definitely think that there is so much work that goes into treating this. Diet/exercise/lifestyle/staying hydrated. 

 

Question for anyone who knows, Wednesday night was horrible- I took xyrem just after 10, started having a total melt-down on it 45 minutes later, and didn't get to sleep until after midnight- so glad I have a hubby because otherwise it would have been a 911 call- I was so crazy I wanted to hurt myself, drive away, just Xyrem induced cray cray. Thursday night I slept perfect- 9 hours. Today I am having a full-on Cataplexy attack. Weak, difficulty moving, dizzy, etc. It is accompanied by the same tingling and numbness I get right before I fall asleep on my first dose of xyrem. Is there such a thing as a Xyrem-induced cataplectic episode? Is it all in my mind (the Xyrem-drug feelings). My last dose of Xyrem was at 2:18 AM and it's now almost 11:00 AM- so it should be out of my system, right?

Wondering if my menstrual period is about to start....anyone else (female, obviously) notice cataplexy is way worse when starting?

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I am an anxiety sufferer, and that is part of the reason my doctor wanted to start me slowly on Xyrem. I am now beginning my fourth week of Xyrem use, and it is my second week of 3g 2x nightly. And today I cannot stop crying. I feel anxious. I don't know why but I just cry. I don't know if I should skip my dose tonight until I can talk to my doctor or someone at Jazz. Does anyone know if it gets better with time? Thank goodness it's Sunday. 

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