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Question About Xyrem


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#1 caroline

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  • Interests:I just found this site today, and am very thankful that I did. Today, I have been feeling overwhelmed by this disease; so, it is good to know that I am not alone. All my life, I have been easily tired and needed more sleep than most people, but I just thought it was my metabolism or that I was just lazy. I am 59 years old, and only got my diagnosis of narcolepsy less than a year ago. I can remember complaining of feeling tired all the time, but the doctors usually recomended a healthier life style ie lose weight. I did, then found it was the eating all the time that had kept me awake to drive, to work,even to read a book.

Posted 11 October 2008 - 04:57 PM

I have been taking xyrem for about 6 weeks, and it has made a world of difference to me; however, there are a couple of issues of concern for me. First, my teeth hurt, I feel like maybe I clench my teeth during sleep, but also they are much more sensitive to cold. This is just a low level of aggravation now, but would not want it to get worse. I also have a lot of muscle and joint pain, which I believe is due to the fact that I sleep so soundly. Has anyone else had these problems? My need for stimulants has decreased tremendously!
Also, would like to share a personal story, my dad had narcolepsy-although he was never diagnosed. He spent his entire life, hoping to find the perfect sleep; he became a drug addict-benzos and all kinds of hypnotics, but he was always tired and sleepy. I so wish he could have lived long enough to have tried the xyrem.

#2 Kimberly

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Posted 12 October 2008 - 03:07 AM

QUOTE (caroline @ Oct 11 2008, 04:57 PM) <{POST_SNAPBACK}>
I have been taking xyrem for about 6 weeks, and it has made a world of difference to me;


Caroline -- Xyrem was also the difference-maker for me, congratulations!

QUOTE
however, there are a couple of issues of concern for me. First, my teeth hurt, I feel like maybe I clench my teeth during sleep, but also they are much more sensitive to cold. This is just a low level of aggravation now, but would not want it to get worse.


Did you happen to notice if this is new, or if they reported that you clenched your teeth during your overnight polysomnogram? It was reported in my PSG that I clenched, but did not grind my teeth. So I had the problem pre-Xyrem. I ended up going to the dentist to get a mouth guard (mine's called an occlusal guard) because I clenched so hard that I cracked a tooth and had to have a crown put on.. not fun. The mouth guard distributed the pressure more evenly, but doesn't get at the underlying cause of the clenching (which for me I believe is stress).

QUOTE
I also have a lot of muscle and joint pain, which I believe is due to the fact that I sleep so soundly.


With the high sodium content of Xyrem, you might want to look into your electrolyte balance because this can cause muscle pain if it's off. That could also be a cause of the clenching.. muscle tightness. Your electrolyte balance has to deal with sodium, magnesium, potassium, and calcium. It's fairly easy to get more potassium and calcium through your diet (as a female you may already be taking a calcium supplement too), but the magnesium is the tough one. Interestingly, it seems to be the one that can be the culprit as well, since lack of magnesium can cause tight muscles. You could try taking a magnesium supplement of 250-300 mg daily and see if this helps relax the muscles -- it should. NOTE: taking too much magnesium can lead to diarrhea. This can happen with amounts as low as 350-500 mg per day. If you get it, just back down to a lower dose. I am enclosing a link here to one of my favorite sources of health information called "Health Notes." It is available on the website of a store that sells vitamins, but I am not advertising or advocating the store itself -- just the free access to the information in "Health Notes." Health Notes: Magnesium

QUOTE
My need for stimulants has decreased tremendously!


Me too! I was able to go from 2 doses of 2 different stimulants a day to only 2 doses of 1 stimulant a day. I was able to drop the amphetamine stimulant and just stick with the Provigil, which is a lot more convenient to deal with prescription-wise. Congrats!

QUOTE
Also, would like to share a personal story, my dad had narcolepsy-although he was never diagnosed. He spent his entire life, hoping to find the perfect sleep; he became a drug addict-benzos and all kinds of hypnotics, but he was always tired and sleepy. I so wish he could have lived long enough to have tried the xyrem.


I wish for his sake he could have as well.. and am very glad that you have done so. This story is all-too common and it's another reason that I feel compelled to support the Narcolepsy Network and to give a voice to education, activism and advocacy for Narcolepsy. The more we get the word out about it (especially to the medical community) the fewer people will suffer needlessly for years and lifetimes. Thank you for sharing that story.

Kimberly

#3 caroline

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Posted 12 October 2008 - 07:52 AM

Thank you Kimberly, I had not thought about this aspect. I did not clench my teeth during my sleep studies, but when I was on a little bit larger dose of Effexor XR-I did; so, probably any little change might trigger this response. My mouth always has a "salty" taste even after good oral care, now that I am on the xyrem. The being able to take less day time meds feels great, but the best thing is I am so much more alert-with less! Another question, which I have no excuse for not already knowing, if, I do not wake up for say 4-5 hours, why would I not be ok with taking the second dose? This is if I am not going to be driving the next morning? Also, one night, I could not stop reading a book; so, I did not take my first dose until after midnight. I did not take a second dose, but felt really good the next day; would there be any issues, that you know of, to doing this on a fairly regular basis?

#4 Mike M

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Posted 12 October 2008 - 03:45 PM

QUOTE (caroline @ Oct 12 2008, 07:52 AM) <{POST_SNAPBACK}>
Another question, which I have no excuse for not already knowing, if, I do not wake up for say 4-5 hours, why would I not be ok with taking the second dose? This is if I am not going to be driving the next morning?


There is no problem doing that, as long (as you said) you do not have to be somewhere the next day at a certain time. A friend of mine let's the first dose run its full course before taking the second. For some reason, both of us tend to get nearly 5+ hours on just the first dose. Since his mornings are open, he can take the second without a problem. Because I have to be at my job at a certain time, I need to have a set pattern of taking my second dose at 1 AM, so I can be ready to go to work around 8:15 AM.

QUOTE (caroline @ Oct 12 2008, 07:52 AM) <{POST_SNAPBACK}>
Also, one night, I could not stop reading a book; so, I did not take my first dose until after midnight. I did not take a second dose, but felt really good the next day; would there be any issues, that you know of, to doing this on a fairly regular basis?


I truly think this will depend on the person. The reason I don't try to do it, but know about it, is that I occasionally have stretches when I struggle to wake with my 1 AM alarm. On those days, I wake between 2:30 and 3:30 AM. It is too late for my second dose, but I can't go back to sleep. Thus, I wind up feeling far worse. For me, missing a dose consistently makes me far more sleepy during the day. As I said, I am sure it will depend on the person, but I would guess that you felt good the one day because you are consistently getting enough rest at night. Regularly missing a dose might make you much more tired. Good luck!

#5 caroline

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Posted 13 October 2008 - 06:54 AM

Thanks Mike. I do not know how I would have managed without this forum; I have learned so much! However, seems the more I know the more I need to know. I have been able to cut way back on my day time stimulants, but since doing this, seems that my sleep is not as good-the second part of the night. I know this makes absolutely no sense, but.........it is true. Has anyone else notice something like this?

#6 angellus

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Posted 13 October 2008 - 04:34 PM

This was good timing to see this post... I saw my dr for follow up today and he prescribed Xyrem for me. I should have it in about 2 days. Ill be glad to stop the Ambian/Valium cocktails. I hope this helps me.

Alan

#7 shande71

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Posted 06 December 2008 - 11:57 PM

Hi! I'm Denise.

I was diagnosed with Narcolepsy and Cataplexy in October, 2008. Provigil did not work for me at all. It made me even sleepier, and I was confused (like my head was in a bubble) and agitated. I thought I was losing my mind!

Adderall works much better for me. As for Xyrem.... all I can say is..... OMG!!!!! Xyrem has CHANGED MY LIFE! Since Xyrem came into my life, I can wake up in the mornings to go to work. (I can't count the number of times I called in sick because I was so exhausted, I couldn't get out of bed. And the headaches.....!) Since I've been on Xyrem, I don't have horrible nightmares about the childhood abuse that I endured at the hands of my mother. Since Xyrem, I sleep 6 to 7 hrs each night - and feel as if I've slept for 16! Sure, there were odd side effects at first - but, over time, they have gotten less intense. For instance, when I first started taking Xyrem I would get this weird sound in my ears. It's the same sound I hear when I close my eyes real tightly and sort of clench my jaw tightly - both at the same time.... kind of like being underwater. (Does anyone else know what I'm talking about?) But instead of worrying about this, I just take it as a sign that the "Xyrem is kicking in" and it's time to turn the light off and go to sleep. Which I do... sooooo restfully! I have also noticed that I have the urge to urinate/pee (I'm much more comfortable with using the word "pee" - please forgive me) during the night. I have learned to limit my liquid intake a few hours prior to going to bed (and taking my first dose of Xyrem). This has helped a lot. The last side effect I've noticed for me with Xyrem is that I clench and grind my teeth (like you) during sleep. This was handled by a trip to Walgreens and the purchase of "the Doctors' Night Guard."

I pray to God that my insurance will continue to cover my Xyrem rx. Despite the "side effects," it really has changed my life.

Good luck and good Zzzz's!

Denise



#8 caroline

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Posted 07 December 2008 - 05:48 PM

Yes the night guard worked for me too. The funny thing is I used it for a couple of weeks, then my dog, Jake, grabbed it and chewed it up! The odd thing is this must have been a transient kind of thing because I am not having this problem anymore. The only real issues that I have now, is occasionally, I slip up and continue to eat (I am a food addict), when I do this I feel hung over the next day.

#9 saltgirl

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Posted 14 December 2008 - 07:23 PM

QUOTE (shande71 @ Dec 6 2008, 11:57 PM) <{POST_SNAPBACK}>
For instance, when I first started taking Xyrem I would get this weird sound in my ears. It's the same sound I hear when I close my eyes real tightly and sort of clench my jaw tightly - both at the same time.... kind of like being underwater. (Does anyone else know what I'm talking about?) But instead of worrying about this, I just take it as a sign that the "Xyrem is kicking


Hi Denise,
Xyrem isn't working so well for me. It's been about 6.5 weeks now, and although I am sleeping through the night, during the day I'm still extremely fatigued and depressed. Also, it has completely eliminated my appetite ( I've lost 15lbs already).

What really caught my eye was the weird sound in your ears. Yep, it happened to me too; you are not the only one. It doesn't bother me anymore, but that 1st night (I was already anxious about the 1st dose), I heard the sound immediately and was terrified because I hear the same sound in conjunction with sleep paralysis. I'm happy to report that I did not experience sleep paralysis even though it was the same exact sound. Just wanted you to know that you're not the only one who hears it.

I hope it continues to work for you. I'm about to give up.

elizabeth (aka, saltgirl)

#10 ulooktired

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Posted 13 July 2009 - 08:04 AM

I have been taking xyrem for about 6 weeks, and it has made a world of difference to me; however, there are a couple of issues of concern for me. First, my teeth hurt, I feel like maybe I clench my teeth during sleep, but also they are much more sensitive to cold. This is just a low level of aggravation now, but would not want it to get worse. I also have a lot of muscle and joint pain, which I believe is due to the fact that I sleep so soundly. Has anyone else had these problems? My need for stimulants has decreased tremendously!
Also, would like to share a personal story, my dad had narcolepsy-although he was never diagnosed. He spent his entire life, hoping to find the perfect sleep; he became a drug addict-benzos and all kinds of hypnotics, but he was always tired and sleepy. I so wish he could have lived long enough to have tried the xyrem.


I know how you feel! I was diagnosed in feb. this year-I'm 42. My life would have been so different if diagnosed earlier. I got into so many bad situations, in my 20s in particular. I use to fall asleep in bars in college, never even drank much. Lived outside mainstream (maybe not so bad) but hard to make a living.
I'm so sorry for you about your dad. I too have a family member diagnosed with schizoprenia who I believe really has narcolepsy. My brother, it's sad because he's been on meds since 16 and nothing has ever helped him. All his letters to me talk about his lack of feeling rested and sleeping all the time. But, he won't hear it from me to get tested. He's convinced otherwise. he's 38 years old now and on disability.