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Xyrem - My Short Story


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#1 NarpocalypseNow

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Posted 15 July 2009 - 12:21 PM

I've been treated for Obstructive Sleep Apnea for about 3 years, and while it made improvements, I would still find myself falling asleep (microsleeps) even after 200mg of Provigil and several coffee's during the day. I finally switched to a different sleep doc and he immediately recognized the possibility of Narcolepsy. Did the sleep test and MSLT and sure enough, I had narcolepsy. That was an unexpected blow.
The doc suggested that I try Xyrem and sent me to the website to check it out. I was absolutely against it at first, but decided to give it a try.
I really wanted it to not work so that I could easily decide not to take it, but wow, it worked. I completely stopped taking Provigil and all of my afternoon caffiene that I used to take and I was awake! Great. Guess I'll keep up with it.
Fast forward a couple weeks...
I started having pains at random all over my abdomen/lower back. I thought it was a kidney stone working it's way out, but it never happend (phew!). Sorry for this part, but my testicles started to ache, and I was sweating profusely from the palms of my hands. That's a new one. I started loosing weight and drinking tons of water (not a horrible thing). Then, I'm at work and my left side of my chest gets really tight and I can barely get a full breath. Crap, sounds like a heart attack, so I go to the ER. No heart attack, they tell me I have Costachondritis (sp?) and it will go away in a couple days. Well, it's been a few weeks and my chest is still tight and gets worse with any small amount of stress. More abdominal pain. Blood pressure rising.
Every doctor I see says "It must be the Xyrem" but none of them know anything about Xyrem.
Bottom line is I'm very depressed about the whole situation, because the Xyrem was working, but I don't want all of the other pains that I get in return. I've tried skipping the Xyrem, but I can't get to sleep without it. It's like I need it to knock me out at night or I will stay up. I've cut down to only doing the first dose to knock me out, but all of the symptoms still remain.
I have an appointment with the sleep Doc tomorrow, and a colonoscopy (again too much info!) Friday to eliminate anything bad (mother had colon cancer) in the abdominal pain department.

There really isn't a point to my post other than wanting to know if anyone has had similar experience with Xyrem.

Thanks, and sorry for the long drawn out post.

#2 Marcianna

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Posted 15 July 2009 - 06:52 PM

Im glad that you shared this with us, I myself dont start Xyrem till the end of the month, and I like to hear everyones stories so that I have an idea what to possibly expect...

Welcome to the forum! Great first post!

#3 Mike M

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Posted 16 July 2009 - 12:46 AM

Wow! Your situation sounds awful. I hope you can get to the bottom of things. How long have you been on Xyrem? Do you take 9.0 grams per night? Finally, are you off all stimulants? All of those thoughts entered my head as I read you post. Below are my comments on specific issues.

I started having pains at random all over my abdomen/lower back.


I too have had abdominal and lower back pain, sometimes severe (although not kidney stone level). Mine predated diagnosis and Xyrem, but I recently learned that hypocretin (which does affect appetite and metabolism) has a role in digestion. My flex-sig, colonoscopy, endoscopy, and video endoscope all led doctors to conclude that I have "IBS."

Sorry for this part, but my testicles started to ache, and I was sweating profusely from the palms of my hands.


I have actually had two ultrasounds on my testicles due to pain and mild swelling. Both times the tests were negative. The first predated my diagnosis, but the second was after diagnosis and after Xyrem. I am personally convinced, however, that the pain and issues in my testicles was related to my compromised immune system. As for the hands, I went through a period when I had exactly the same thing. It started 5 months after I began Xyrem, but it was mostly tied to old leather gloves that I used in the winter. The condition that I experienced is called dyshidrotic eczema. Stress also made that worse.

I started loosing weight and drinking tons of water (not a horrible thing).


I already drank a ton of water, but the salt content in Xyrem has done nothing to mitigate that issue for me. I lost a ton of weight after starting Xyrem, but it turned out that it was provigil that did not agree with me.

Then, I'm at work and my left side of my chest gets really tight and I can barely get a full breath. Crap, sounds like a heart attack, so I go to the ER. No heart attack, they tell me I have Costachondritis (sp?) and it will go away in a couple days. Well, it's been a few weeks and my chest is still tight and gets worse with any small amount of stress. More abdominal pain. Blood pressure rising.
Every doctor I see says "It must be the Xyrem" but none of them know anything about Xyrem.


I have experienced the chest tightening too and am unnerved by it, but it usually passes rapidly. For me I think the chest issues and my high BP are a result of my stimulants (60 mg of amphetamine). I even take a blood pressure med it he me handle the situation.

Bottom line is I'm very depressed about the whole situation, because the Xyrem was working, but I don't want all of the other pains that I get in return. I've tried skipping the Xyrem, but I can't get to sleep without it. It's like I need it to knock me out at night or I will stay up. I've cut down to only doing the first dose to knock me out, but all of the symptoms still remain.
I have an appointment with the sleep Doc tomorrow, and a colonoscopy (again too much info!) Friday to eliminate anything bad (mother had colon cancer) in the abdominal pain department.


Definitely hang in there. Hopefully your doctor had good insights. If it does turn out to be the Xyrem, perhaps you will be able to handle it in smaller doses.

There really isn't a point to my post other than wanting to know if anyone has had similar experience with Xyrem.


I hope my comments help. While I do not think that my xyrem is behind my versions of your symptoms, I have experienced a number of the things that are bothering you. Also, we do not need a "point" (although I think your post has a few excellent ones) because we all need times and places when we can let go of the issues eating at us.

Thanks, and sorry for the long drawn out post.


Thank you! Please do not apologies for your post. We are here for each other. Cheers.

#4 2muchcoffee

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Posted 16 July 2009 - 08:11 AM

Have you tried calling the 1-800 number for Xyrem? I was told yesterday that if I have any side affects that trouble me, any questions or any concerns to call them first thing. Apperantly, they're a great support system and they can recommend what to do or tell your doctor what to do for you. I would bet that they will suggest you decrease your dosage first and go from there.
Good luck!! Hopefully everything gets straightened out for you!

#5 sleepless sleeper

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Posted 21 July 2009 - 09:05 PM

how did the appt go?

i couldn't take xyrem because it makes me uber sick. don't even ask - yes, it was that bad. xyrem is heavy sodium, though, and i'm curious about the side effects that it would have on the human body as compared to salt. when i started it i talked to my doctor about it. i don't remember everything he said, but i do remember that he thought it was a good idea to drink extra water. think dehydration. also i know that high salt levels cause some kind of problems with the heart.

i never thought much of dehydration until i moved here - semi arid climate (avg 10% humidity or LESS) and very high altitude. now i KNOW how dehydration can truly mess with a person's body. just think of your insides drying out. and yes, there is PAIN. again, think of your insides drying out. with high amounts of sodium accumulating in your body, i would think that it would have a double whammy effect in the pain dept. i'm no medical clinico, though. maybe in the mean time, drink a lot of extra water. just plain old water. no added flavors. nothing. well, when i feel myself getting dehydrated here, i do drink a 32 ounce glass of gatorade to get me started. i don't know about the Na content of it, but now that i'm thinking about it, it does replace electrolytes, so it's proly hi with potassium. let me check.... BACK IN A NARCOLEPTIC FLASH!!!!!!!

ARGH! i wish that i would NOT have looked! salt and sodium citrate along with monopotassium phosphate. (say that fast three times and stand on your head). it may help with dehydration, but i don't know if it would help with dehydration caused by xyrem sodium overload.

maybe this won't help at all. but a shot in the dark is sometimes better than nothing at all. a little extra water never hurt anybody though. just don't drink jim jones' batch of koolaid.

#6 NarpocalypseNow

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Posted 29 July 2009 - 11:15 AM

I apologize for my long absense. I've been quite depressed about the whole situation and couldn't come back to respond.
I stopped taking the Xyrem on the 16th of July. As of now, MOST of the symptoms I was experiencing are gone. No more abdominal pain, and the tightness in my chest has almost gone away. The dull pain in my testicles has also gone away for the most part. I still sweat from the palms of my hands, but not as bad as while on the Xyrem. My colonoscopy results came back good, so my fears of colon cancer are at least gone for now.

Now for the bad part:
For the month or so I was on Xyrem, I had a small taste of what it was like to be awake. I didn't depend on coffee, didn't need provigil, and could make it through a day without complaining all day long that I'm exhausted. I had no idea what that was like, and I didn't realize how good it was until I stopped taking the Xyrem. I'm back to being exhausted, needing coffee, taking Provigil, and still being exhuasted.

My doctor wants me to remain off of Xyrem for 3 weeks, start taking Lexapro to deal with the anxiety/paranoia, and them possibly start Xyrem again.

I don't know what I'm going to do. I'm very depressed, but not dangerously ;) Just frustrated that i breifly saw "the other side" and have gone back to my zombified existance.

Yesterday, I went to the cafeteria at work to get food, and I noticed all of the happy people socializing with each other while I stood there alone and barely awake waiting for my food so I could go back to my cubicle and eat. I don't have the energy to socialize like everyone else and just want to be left alone. I realized I'm ripping off my wife and daughter as well, since I always want to stay home rather than going anywhere that requires the energy to socialize.

So, take Xyrem, be awake and deal with the pain? Or don't take Xyrem and watch life pass me by?

Tough choice, and I don't know what I'm going to do.

Thanks for all of your kind words and support, it has helped a lot. I'm not a very outgoing or openly emotional individual, so it helps to be able to come here and release my feelings.