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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 25. This is the beginning of the thread.
Posted by Michael Bell on August 29, 2010, at 14:17:15
I was prescribed Xyrem for Narcolepsy and excessive daytime sleepiness. Hopefully it will address my daytime sleep attacks. I am curious about the allegedly profound prosocial/anti-social anxiety effects that this medication is also known for. I'll post any effects on sociability if I notice any.
Posted by Bob12 on August 29, 2010, at 15:18:49
In reply to I got XYREM, posted by Michael Bell on August 29, 2010, at 14:17:15
I am interested in Xyrem. I do not think I have narcolepsy however I do have daytime excessive sleepiness due to taking 17.5 mg of Zyprexa at night.
Does anyone think this medication should be used in combination with Zyprexa to help reduce daytime sleepiness?
thanks
Bob12
Posted by ed_uk2010 on August 29, 2010, at 15:21:00
In reply to Re: I got XYREM, posted by Bob12 on August 29, 2010, at 15:18:49
>Does anyone think this medication should be used in combination with Zyprexa to help reduce daytime sleepiness?
No! Definitely not. In combination with Zyprexa it might cause a profound and unsafe level of sedation at night. Are you able to reduce your dose of Zyprexa a little?
Posted by Michael Bell on August 29, 2010, at 15:37:13
In reply to Re: I got XYREM, posted by Bob12 on August 29, 2010, at 15:18:49
I take it with Risperdal, Lexapro and Buspar. Neither my doctor nor the Xyrem pharmacist found that to be a dangerous mixture. And so far, no issues. But you would have to ask a doctor, I cannot give you advice as to that.
> I am interested in Xyrem. I do not think I have narcolepsy however I do have daytime excessive sleepiness due to taking 17.5 mg of Zyprexa at night.
>
> Does anyone think this medication should be used in combination with Zyprexa to help reduce daytime sleepiness?
> thanks
> Bob12
Posted by Bob12 on August 29, 2010, at 15:38:08
In reply to Re: I got XYREM, posted by ed_uk2010 on August 29, 2010, at 15:21:00
Ok so I will not try xyrem - thanks for the info.
What do you think about Mebicar? It might help me sleep better and reduce my daytime fears and anxiety.
Currently in addition to Zyprexa 17.5 mg, I take 2 mg of valium every night. Perhaps Mebicar is better? I also take ativan as needed but I am wondering if I should try Mebicar.
thanks
Bob12> >Does anyone think this medication should be used in combination with Zyprexa to help reduce daytime sleepiness?
>
> No! Definitely not. In combination with Zyprexa it might cause a profound and unsafe level of sedation at night. Are you able to reduce your dose of Zyprexa a little?
>
Posted by linkadge on August 29, 2010, at 15:57:38
In reply to Re: I got XYREM, posted by Bob12 on August 29, 2010, at 15:38:08
If xyrem (GHB) is a potent sedative, whats the logic for its use in narcolepsy?
Linkadge
Posted by Phillipa on August 29, 2010, at 16:29:22
In reply to Re:I'm convused, posted by linkadge on August 29, 2010, at 15:57:38
I'm sure I'm mistaken but always thought xyrem was the date rape med? Isn't it illegal in US? Phillipa
Posted by bk2va23 on August 29, 2010, at 17:56:43
In reply to Re:I'm convused, posted by linkadge on August 29, 2010, at 15:57:38
Simple it provides DEEP DEEP REM sleep,one that is not disturbed the next day by keeping the person awake.
Posted by linkadge on August 29, 2010, at 19:06:43
In reply to Re:I'm convused, posted by bk2va23 on August 29, 2010, at 17:56:43
>Simple it provides DEEP DEEP REM sleep,one that >is not disturbed the next day by keeping the >person awake.
I still don't get it. Why is the medicince approved for narcolepsy but not insomnia?
Whats the difference between narcolepsy and the profound daytime drowsiness that accompanies severe chronic insomnia?
Linkadge
Posted by Michael Bell on August 29, 2010, at 19:44:51
In reply to Re:I'm convused, posted by linkadge on August 29, 2010, at 15:57:38
It allows you to reach deeper levels of sleep that people with narcolepsy have trouble attaining
Posted by Michael Bell on August 29, 2010, at 20:09:03
In reply to Re:I'm convused, posted by Phillipa on August 29, 2010, at 16:29:22
It is not illegal if used for fda-approved purposes, such as to treat narcolepsy or cataplexy. However, without a script, it is a schedule 1 substance.
Posted by bk2va23 on August 29, 2010, at 20:20:04
In reply to Re:I'm convused » Phillipa, posted by Michael Bell on August 29, 2010, at 20:09:03
Also has the amazing ability to climb out windows roll to a club and date rape on its own.
Posted by linkadge on August 29, 2010, at 21:04:32
In reply to Re:I'm convused, posted by bk2va23 on August 29, 2010, at 20:20:04
I still don't buy it. Depression and anxiety disorders are notorious for causing reductions in deep sleep.
I've heard that GHB has marked antidepressant effects. So why is it studied an approved in narcolepsy but not depression / anxiety / insomnia?
It doesn't make sense.
Linkadge
Posted by Michael Bell on August 29, 2010, at 22:48:23
In reply to Re:I'm convused, posted by linkadge on August 29, 2010, at 21:04:32
Because of a couple of reasons: (1) they don't want to introduce a drug with the kind of legal history that GHB has to people with depression and/or anxiety. Not right away, anyway. But mark my words, they will try to get it approved for more and more diseases/conditions (they're working on getting it approved for fibromyalgia as we speak) until it is eventually utilized for depression and anxiety; and (2) since narcolepsy is a "neurological disorder" it is considered more appropriate to treat it with GHB than depression or social anxiety, which many people, doctors included, still don't consider physical ailments. Depression and anxiety are still deemed by many as partially, or completely, the result of environmental influences or warped thought patterns. In other words, you can't exactly treat narcolepsy with behavioral therapy.
Also, keep in mind that the reason so many practitioners push SSRIs so hard is because of their alleged safety profile. Many psychiatrists won't even consider nardil, stimulants, opioids or benzos despite their well-documented efficacy for depression and anxiety, so imagine trying to get a doctor to prescribe the much-maligned GHB? It has to be gradually introduced as an option through case studies, peer reviews, anecdotal evidence, etc.
Therefore even if depression does cause lack of deep sleep, doctors would rather treat the underlying cause of the poor sleep with what they consider to be less dangerous meds.
That's my two cents, anyway.
Posted by linkadge on August 30, 2010, at 14:36:37
In reply to Re:I'm convused » linkadge, posted by Michael Bell on August 29, 2010, at 22:48:23
The years I have battled crappy sleep patterns from depression / insomnia cannot be recovered. Their best answer these days is still something like SSRI + zyprexa or seroquel which is still pretty crappy IMHO.
On these medications I can simply NEVER get deep refreshing sleep. As a result, I spent most of my time walking around like a zombie. I might as well have had narcolepsy. Amitriptyline? I NEEDED to have a 2 hour nap each afternoon or I'd colapse. Thats why most many of these meds end up just making me a zombie, you can NEVER get deep sleep.
I just find it kind of insulting that the effective medications get used for diseases with little lethality, wherase depressed patients with comorbid insomnia are at significantly elevated risk of suicide compared with depression minus insomnia or the normal population.
Linkadge
Posted by ed_uk2010 on August 30, 2010, at 15:15:26
In reply to I got XYREM, posted by Michael Bell on August 29, 2010, at 14:17:15
>I was prescribed Xyrem for Narcolepsy
I never knew you had narcolepsy. You've been asking about 'prosocial' meds on p-babble for years, I thought your diagnosis was social phobia?
Posted by ed_uk2010 on August 30, 2010, at 15:29:53
In reply to Re:I'm convused, posted by linkadge on August 29, 2010, at 21:04:32
>I've heard that GHB has marked antidepressant effects. So why is it studied an approved in narcolepsy but not depression / anxiety / insomnia?
Because narcolepsy is not common. Can you imagine GHB being approved for a common problem like depression or anxiety?
Anyway, I doubt that GHB is an appropriate treatment for depression. When used for narcolepsy, adverse effects appear to be very frequent and sometimes quite disturbing.
Adverse effects classified as 'very common' or 'common' by the manufacturer (UCB):
Dizziness, headaches, nausea, anorexia, abnormal dreams, confusion, disorientation, nightmares, sleepwalking, depression, anxiety, insomnia, tremor, balance disorder, disturbance in attention, hypoaesthesia, paraesthesia, blurred vision, hypertension, dyspnea, snoring, vomiting, upper abdominal pain, diarrhea, sweating, muscle cramps, joint pain, urinary incontinence, weakness, fatigue, feeling drunk, peripheral edema and falls.
Posted by morgan miller on August 30, 2010, at 17:15:38
In reply to Re:I'm convused, posted by linkadge on August 30, 2010, at 14:36:37
Linkage, would you be open to trying Pregabalin(Lyrica) for sounder deeper sleep? Have you tried this already? I read of several guys over at mindandmuscle.net having amazing refreshing sleep on pregabalin. You should check out M & M, it's a great site and there are people over there that know their sh*t and have some of the same struggles you do.
Morgan
Posted by Michael Bell on August 30, 2010, at 18:30:03
In reply to Re: I got XYREM, posted by ed_uk2010 on August 30, 2010, at 15:15:26
I never knew I had it either. Actually, I had the opposite of narcolepsy for almost my whole life until I was 25 or so. Meaning insomnia, literally tossing and turning until 3 or 4 in the morning every night. Racing thoughts, etc. I also would often fall asleep in class in college and highschool, but I figured this was the insomnia. Then one day, I mean literally one day, I started falling asleep at the drop of a dime at night when it was time to go to bed. No more insomnia. Problem solved, right? But despite sleeping through the night, I still was getting sleep attacks during the day. This has been going on for years. I have gotten into multiple car accidents while driving. Fell asleep at work practically on a daily basis. Had two sleep studies with both showed neurological issues that don't allow me to reach deep stage sleep. The daytime sleep study showed that I have excessive daytime sleepiness and enter into REM sleep within minutes of falling sleep, which is also abnormal. Since I also have mild apnea, I was prescribed a CPAP machine at night for apnea to see if that was the issue. Unfortunately, that very expensive piece of equipment did not help. After trying provigil, nuvigil, dexedrine and vyvanse, the doctor suggested xyrem.
So yes. To answer your comment, I have narcolepsy. And social anxiety.
Posted by Michael Bell on August 30, 2010, at 18:49:15
In reply to Re:I'm convused, posted by linkadge on August 30, 2010, at 14:36:37
I agree. Look at MDMA and Ketamine, and how fast the antidepressant responses are in recent studies. Like they did with Xyrem, they will probably allow a version of the substances to be patented and sold by a pharmaceutical company. All in the name of making money. But at the same time, safety is definitely an issue. I take the exact dosage of xyrem at right before bed that the doctor prescribed, set my alarm clock and take another dosage in the middle of the night. Not really a great opportunity to tell if it has any effect on social anxiety, but I don't want to vary in dosage or timing at all, as I heard respiratory depression is a real scary side effect of this med.
> The years I have battled crappy sleep patterns from depression / insomnia cannot be recovered. Their best answer these days is still something like SSRI + zyprexa or seroquel which is still pretty crappy IMHO.
>
> On these medications I can simply NEVER get deep refreshing sleep. As a result, I spent most of my time walking around like a zombie. I might as well have had narcolepsy. Amitriptyline? I NEEDED to have a 2 hour nap each afternoon or I'd colapse. Thats why most many of these meds end up just making me a zombie, you can NEVER get deep sleep.
>
> I just find it kind of insulting that the effective medications get used for diseases with little lethality, wherase depressed patients with comorbid insomnia are at significantly elevated risk of suicide compared with depression minus insomnia or the normal population.
>
> Linkadge
>
>
>
>
Posted by ed_uk2010 on August 31, 2010, at 5:27:22
In reply to Re: I got XYREM » ed_uk2010, posted by Michael Bell on August 30, 2010, at 18:30:03
Ok, well best of luck with Xyrem. I hope it helps you.
> I never knew I had it either. Actually, I had the opposite of narcolepsy for almost my whole life until I was 25 or so. Meaning insomnia, literally tossing and turning until 3 or 4 in the morning every night. Racing thoughts, etc. I also would often fall asleep in class in college and highschool, but I figured this was the insomnia. Then one day, I mean literally one day, I started falling asleep at the drop of a dime at night when it was time to go to bed. No more insomnia. Problem solved, right? But despite sleeping through the night, I still was getting sleep attacks during the day. This has been going on for years. I have gotten into multiple car accidents while driving. Fell asleep at work practically on a daily basis. Had two sleep studies with both showed neurological issues that don't allow me to reach deep stage sleep. The daytime sleep study showed that I have excessive daytime sleepiness and enter into REM sleep within minutes of falling sleep, which is also abnormal. Since I also have mild apnea, I was prescribed a CPAP machine at night for apnea to see if that was the issue. Unfortunately, that very expensive piece of equipment did not help. After trying provigil, nuvigil, dexedrine and vyvanse, the doctor suggested xyrem.
>
> So yes. To answer your comment, I have narcolepsy. And social anxiety.
Posted by EastC on August 31, 2010, at 11:35:28
In reply to Re: I got XYREM, posted by ed_uk2010 on August 31, 2010, at 5:27:22
As someone that has dealt with chronic, treatment resistant insomnia for 10 years, a neurologist recommended Xyrem back in the spring of '09. We never pursued it though because we tried other things first. I feel that now may be the time to try it if he is still open to it. I saw a youtube diary of a woman who is on it and she has quite a good experience with it. Here is a link to her first video (she has narcolepsy mind you - but her experience with is still interesting). Here is the link:
http://www.youtube.com/watch?v=7O-5kPQPnlQ
Watch this one as well as her continuing videos.
Posted by linkadge on September 1, 2010, at 13:49:56
In reply to Re: I got XYREM » ed_uk2010, posted by Michael Bell on August 30, 2010, at 18:30:03
>Had two sleep studies with both showed >neurological issues that don't allow me to reach >deep stage sleep. The daytime sleep study showed >that I have excessive daytime sleepiness and >enter into REM sleep within minutes of falling >sleep, which is also abnormal.
Hmm. If a doctor can find something on a brain scan that shows a physical abornmalitiy in the part of the brain that regulates wake / sleep, then it seems pretty conclusive.
However, some of the other findings are not specific to narcolepsy. For instance, lack of deep sleep is a hallmark of depression (and mania I believe). Falling into early REM is also very common in depression.
Alternating between period of hypersomnia and insomnia is also associated with bipolar disorder.
Maybe I am bipolar because I go through period where I simply can't get deep refreshing sleep at night (lasting months at a time). Then I have periods where all I want to do is sleep (night / day / whenever). I might sleep 16 hours a day and still wake up utterly exhausted and be able to fall asleep at the drop of a hat.
The drugs prescribed for the insomnia don't do diddly. They like to prescribe amitriptyline and seroquel and these help sleep for maybe a week tops, then then the insomnia worsens they just make me feel detached and zombified.
I've always sworn I could manage all my problems with z drugs and ritalin, but I doubt I'd ever get a doc on the same wavethlength there.
But, I would say my biggest problem is in the sleep / wake cycle.
Linkadge
Posted by ed_uk2010 on September 2, 2010, at 12:33:06
In reply to Re: I got XYREM » Michael Bell, posted by linkadge on September 1, 2010, at 13:49:56
>I've always sworn I could manage all my problems with z drugs and ritalin, but I doubt
Are doctors wary of zopiclone in Canada?
Posted by Michael Bell on September 3, 2010, at 22:16:18
In reply to Re: I got XYREM » Michael Bell, posted by linkadge on September 1, 2010, at 13:49:56
I agree to some extent, where does narcolepsy-like symptoms from depression end and actual narcolepsy begin? Although I have never been diagnosed with depression, I am pretty certain my anxiety disorder has a neurochemical/neurological basis. Perhaps it is responsible for some of the excessive daytime sleepiness, who knows? However, at some point I guess you have to let the doctors do what they do best and come up with a diagnosis after performing the necessary studies.
With respect to your insomnia, I hear that Xyrem works very well for that for some people. Hopefully this medication will be approved for other purposes and people can get the relief they so desperately need.
This is the end of the thread.
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