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Xyrem-Adverse Reaction

Xyrem Provigil Side Effects Adverse Reaction Help Me Treatment

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#21 jennel

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Posted 13 December 2013 - 11:37 AM

Actually it's not supposed to be mixed with anything that has sugar or caffeine. I use the liquid Crystal Light, though the powder would work fine. Then don't have to worry about sugar on your teeth!

#22 CreativeConfusion

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Posted 02 January 2014 - 02:06 PM

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?



#23 Hank

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Posted 02 January 2014 - 03:41 PM

I had a similar experience, although I did not have muscle contractions. I am glad for you that you have someone who was supportive. I did not.

 

I am now on Effexor for cataplexy and Trazadone 200 mg for sleep at night. Ambien and others were like taking Pez- did absolutely nothing. What dose of Trazadone were you on before.

 

Have you already discontinued Xyrem?

 

There are "psychiatric" side effects to Xyrem and they should be taken seriously.



#24 DeathRabbit

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Posted 02 January 2014 - 06:17 PM

I got so upset with anxiety that I puked and I kept on having visions of getting weird skin disorders or having my skin rot off or something. It was almost schizoid.



#25 taylor912

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Posted 19 February 2014 - 12:46 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.

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.



#26 deerarecute

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Posted 19 February 2014 - 03:17 PM

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.  



#27 taylor912

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Posted 19 February 2014 - 03:39 PM

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?



#28 Baggyeyedman

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Posted 21 February 2014 - 08:36 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.

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.



#29 Hank

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Posted 21 February 2014 - 09:56 PM

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.



#30 ljmish21

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Posted 22 February 2014 - 11:11 PM

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...



#31 Hank

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Posted 23 February 2014 - 06:53 AM

6 hrs after dose 2 - then ok to drive



#32 Baggyeyedman

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Posted 23 February 2014 - 01:42 PM

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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