RLS/PLMD and Narcolepsy/Cataplexy

For everything and anything else not covered in the other WED/RLS sections.
jumpyowl
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RLS/PLMD and Narcolepsy/Cataplexy

Postby jumpyowl » Fri Jul 16, 2004 8:12 pm

Romy posted on another form in a thread rarely visited and with an irrelevant title. So I am taking the lliberty to start this topic with the proper title, so others can find it and share.

The first post by Romy is contained in my reply here in two fragments.

Here is my reply to Romy.

Romy wrote:
I was first diagnosed with RLS then Narcolepsy (I have cataplexy, and all the other symptoms) I am on Xyrem-the new drug from Orphan. But when I started the xyrem they took me off of all my rls drugs, I was on neurontin, mirapex, oxycontin and ambien. I had had horrible horrible struggles with RLS and this combination helped control it well for years. Then to go on the Xyrem I went off of all those(last oct/nov), and I thought I was fine, but the RLS has been creeping back the whole time and I really didn't recognize it (I think I was in denial)


Now your case is for the book. I am well aware of Xyrem and the company making it available. As you may have heard there is now an off label use for it in patients with severe fibromyalgia.

I made a pain doctor acquainted with Xyrem and its use and now he is using it with some of his patients. He and I discussed what drugs can be retained with the use of Xyrem. He only wanted to be sure that his patients do not get into respiratory difficulties so he usually orders a sleep study for ruling out sleep apnea.

Due to the fact that Xyrem is quite fast acting and has a short half life in the body, we found that many medications can still be retained with some minor change in scheduling. I recall a patient who had been taking 12 medications, eight out of them had an effect on the central nervous system. This patient, for example, was allowed to use all of them with the rescheduling of one (morphine sulphate).

My point is that taking you off all the medication was probably unnecessary and not following up on your resulting problems seems cruel.

I can understand why doctors err on the side of caution. Its their skin and your discomfort. My point is that it is worth negotiating with the doctors and one should definitely letting him/her know the discomfort and pain one has to endure due to some medication change.

But now I am back on all the old RLS drugs, except ambien, but only for the last 3 nights, and they have been ok, but not great, still feel the RLS.


You may have to work out another regimen if you are still on Xyrem. And figure out which works the best for you. Your RLS may have changed. Mirapex, Neurontin, oxycontin, and ambien seem to me a bit of an overkill. Especially the first two, you may only need one or the other.

Did Xyrem help your cataplexy?

It is the Xyrem I am referring to in some of my previous posts. It is a fantastic drug to correct sleep abnormalities, has few side effects. It is too bad that it acquired such a bad reputation as a date rape drug. I think it was prohibited in the US in the nineties and still is prohibited in the United Kingdom.

Please visit the topic ORP on this forum (the General Topics Forum) and please add your comments. When I said it was for the book I meant it.

There is someone else on the Discussion Board also with posts concerned with possible narcolepsy in addition to scoobydo.
Jumpy Owl

Romes
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I'm Romy, here's my reply

Postby Romes » Fri Jul 16, 2004 8:23 pm

Ok here is my reply

Oh one correction, I did stay on mirapex, but I reduced the amount myself because I felt so good, so I was taking .5 mg at bedtime, whereas before I'd been taking 1.25mg at bedtime,and .75 mg 4 times during the day.

I don't know if my RLS has changed, I know that I had previously, years ago, had a very bad case, which this previous regimine controlled for years. When I went off of all the drugs it was torture, but when I started the xyrem it was amazing, for the first time I really slept (narcolptics don't get any slow wave sleep, and have many abnormal rem onsets in sleep, etc). And then my whole life changed in the months after xyrem, whereas before I couldn't work or drive, now I could. It didn't just help my cataplexy it gor rid of the completly debilitating sleepiness of narcolepsy. Yes my RLS may have changed, but because I am now facing a situation where I could loose my livilhood, my dr said ok, lets just go back to the old regimne. The thing is it is helping the rls, and I am getting to seep, as I said before, but now I'm tired today, and have been for the last 3 days, but I think I'm not getting quality sleep, so tonight I will try backing off the xyrem...I'm on the top dose, and see i that's better . .the key is I have to control the rls enough to let the xyrem work so I can get good quality sleep. Also its not just the last 3 days that I've been more tired, but latley more and more--

One thing I think my RLS has been coming back at me for a long long time and through denial, I ignored it, but it was definitly effecting my sleep.

As to the Xyrem, yes it helped my cataplexy, in fact it totally went away, which was an amazing thing. I didn't even realize how much cataplexy I had until after I had xyrem, and felt what normal was.

Yes Xyrem is GHB which was the date rape drug. And it is still prohibited as GHB in the USA, but as Xyrem , chemical name sodium oxybate, it is approved. They have a very special distribution system for it, ie one central pharmacy which dr's fax precriptions to ,and then xyrem gets mailed out only to each individual.

And I think I heard the Xyrem has been approved for use in th European Union, so maybe it could be available is the UK?

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Romes' reply

Postby jumpyowl » Fri Jul 16, 2004 8:56 pm

R. replied so fast that I have not yet put a warning in the other thread to ask him/her to post in this thread. But I will do so now!

Oh one correction, I did stay on mirapex, but I reduced the amount myself because I felt so good, so I was taking .5 mg at bedtime, whereas before I'd been taking 1.25mg at bedtime,and .75 mg 4 times during the day.

I don't know if my RLS has changed, I know that I had previously, years ago, had a very bad case, which this previous regimine controlled for years. When I went off of all the drugs it was torture, but when I started the xyrem it was amazing, for the first time I really slept (narcoleptics don't get any slow wave sleep, and have many abnormal rem onsets in sleep, etc). And then my whole life changed in the months after xyrem, whereas before I couldn't work or drive, now I could. It didn't just help my cataplexy it got rid of the completely debilitating sleepiness of narcolepsy.

Yes Xyrem is GHB which was the date rape drug. And it is still prohibited as GHB in the USA, but as Xyrem , chemical name sodium oxybate, it is approved. They have a very special distribution system for it, ie one central pharmacy which dr's fax precriptions to and then xyrem gets mailed out only to each individual.

And I think I heard the Xyrem has been approved for use in th European Union, so maybe it could be available is the UK?


This is fantastic. I always had a high opinion of Xyrem but it is nice to hear about its efficacy from the patient!

So you are taking 9.0 ml of 50% solution diluted to around 60-90 mls twice a night? (A total of 18 mls or 9 grams of gamma-hydroxybutyrate per night). - Yes, their distribution system is expensive (overnight delivery) but very good.

Now you stated in about the middle of your note:
Yes my RLS may have changed, but because I am now facing a situation where I could loose my livilhood, my dr said ok, lets just go back to the old regime. The thing is that it is helping the rls, and I am getting to sleep, as I said before, but now I'm tired today, and have been for the last 3 days, but I think I'm not getting quality sleep, so tonight I will try backing off the xyrem... I'm on the top dose, and see if that's better . The key is I have to control the rls enough to let the xyrem work so I can get good quality sleep. Also it's not just the last 3 days that I've been more tired, but lately more and more--

One thing I think my RLS has been coming back at me for a long long time and through denial, I ignored it, but it was definitly effecting my sleep.

As to the Xyrem, yes it helped my cataplexy, in fact it totally went away, which was an amazing thing. I didn't even realize how much cataplexy I had until after I had xyrem, and felt what normal was.


Let us see whether I get this right. You think that you are not getting enough uninterrupted deep sleep (stage IV) because of the Xyrem medication or RLS medication??? If the latter why would you decrease the Xyrem dose? How will it help your deep sleep?

This a complex situation and I am just feeling my way around it. First of all I am sure you had at least one sleep test and they have taken a polysomnograph. This should have shown that you had, probably severe, (PLM) periodic limb movements with near arousals (enough to interrupt you delta phase sleep pattern every couple of minutes or so).

So in your case it is not so much the RLS (it is as far as it is keeping you from falling asleep) but the PLM which have to be stopped. Even the narcolepsy could be secondary to RLS/PLMD!

So in this sense any medication that eliminates PLM's should help the action of Xyrem in the sense that it eliminates the delta phase sleep interruptions. the delta sleep which Xyrem prolongs.

Is your doctor have a sleep lab or is he/she in contact with someone who has?

Clearly what you have to find out what combination of medications produce for you the most UNINTERUPTED sleep stage IV (delta sleep). What I suspect that your doctor does not know much about RLS and does not dare to change what you had before.

What you would have to find out what the simplest medication is for you that stops PLM!!! Then adjust Xyrem if it is necessary. At that time you may get away with less Xyrem, but at this point I do not think too much Xyrem is giving you the nonrefreshing sleep! If you think my logic is wrong, please let me know.

I am suspicious of the Neurontine anticonvulsive because it does play games with the brain cells. It may increase your REM sleep at the expense of delta sleep. This is why I asked: do you need it for RLS/PLMD relief?

Please when you answer, let us continue here so others can find this interesting thread easier.
Jumpy Owl

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Postby Romes » Sat Jul 17, 2004 12:02 am

Ok let me back up a little and tell you that I started xyrem at 4.5ml dose (that's twice a night) and it went very well. This was right before thanksgiving. I was just off all my rls meds and still it was great, but shortly thereafter i had to up the dose because I was starting to not sleep as well, and then the dose was increased (to 6 ml at each dose) Around Jan 8, and again I felt great, but then about two months later I again contacted my dr. saying:

I am currently taking 6 ml of xyrem for each dose, and it is not working as well as it was before--This is what is happening:
1. It is taking me longer to fall asleep initially.
2. I will wake up after the first dose often after only 1.5 or 2 hours.
3. When I take the second dose I don't go right back to sleep like I used to.
4. Instead of sleeping well until the morning (like I used to), once I go back to sleep after the second dose, I'll sleep for maybe 2-3 hours, and then for the rest of the time I'll start to have awakenings at intervals of anywhere between 1.5 hours to 45, or 30 minutes.

I'm not sure when all this started happening, but I think things have slowly deteriorated over a few weeks . . .

And he said I was probably developing some tolerence so I should increase to 7.5 ml.

Which I did, and then again I wasn't sleeping well so he put me up to the 9ml dose.

But I think that I needed all those increases especially the last two, because the RLS was coming back. I think I was in denial, but i remeber being in bed and feeling my legs and clenching them in a certain way that I'd developed, and then the xyrem let me go to sleep, you see you are not supposed to get out of bed once you take xyrem, and actually I was getting out of bed, I would take it and get really hungry and then get out of bed, but I think my legs were bothering me and I was hungry, so I would eat until I basically passed out on the xyrem. But then I stopped the eating by waiting a full 5 hrs (I had only been waiting 2 which is not enough) between my last meal and so there was no more hunger . . . but there was RLS, :evil:

Let us see whether I get this right. You think that you are not getting enough uninterrupted deep sleep (stage IV) because of the Xyrem medication or RLS medication??? If the latter why would you decrease the Xyrem dose? How will it help your deep sleep?



I know I am not getting enough good sleep, I am not sure why. You see narcoleptics don't get deep sleep stage IV on their own, only with xyrem, and as I said above my xyrem kept having to be increased, so I am wondering if now that I am on RLS meds and, if the Xyrem is not too much in conjunction with the other meds, I know it sounds crazy to decrease it and hope to get better sleep, but it might be worth a try. You see I only know what kind of sleep I got based on how I feel the next day, and although I am sleeping on the RLS meds and 9ml of xyrem I am very tired in the day.

This a complex situation and I am just feeling my way around it. First of all I am sure you had at least one sleep test and they have taken a polysomnograph. This should have shown that you had, probably severe, (PLM) periodic limb movements with near arousals (enough to interrupt you delta phase sleep pattern every couple of minutes or so) So in your case it is not so much the RLS (it is as far as it is keeping you from falling asleep) but the PLM which have to be stopped. Even the narcolepsy could be secondary to RLS/PLMD.


Yes I had many sleep tests, and I did have PLM, but my boyfriend watched me as I slept and said I was very flat, very little movement at all, and so he thought I was being taken too far under, with the RLS meds and xyrem meds together,

Is your doctor have a sleep lab or is he/she in contact with someone who has?


I have two sleep specialists one for narcolepsy and one for RLS, and yes they both have sleep labs, So I feel I have access to good advice on both ends, but they both say they have never seen a case of both narcolepsy amd rls in their entire career which for each of them is about 20-30 years


What I suspect that your doctor does not know much about RLS and does not dare to change what you had before


no it's the same RLS dr from before, he's the one who developed my whole RLS regime that allowed the rls to be under control, he is also the dr who susupected I had narcolepsy, and did the work to get that diagnosed, throutgh several sleep studies. He is actually one of the experts in RLS,

What you would have to find out what the simplest medication is for you that stops PLM!!! Then adjust Xyrem if it is necessary. At that time you may get away with less Xyrem, but at this point I do not think too much Xyrem is giving you the nonrefreshing sleep! If you think my logic is wrong, please let me know.



I agree, but before there was never one medication that would control my rls and PLMD. It was only all 4, ambien, mirapex, neurontin and oxycontin, The fact that this worked was verified in a sleep study I had right before I stopped all the drugs, in October 2003. I guess I am tempted to try to lower the xyrem now because I am able to get to sleep now, just to see if it helps, you see oxycontin is a strong drug and when I asked the xyrem people about taking it they dais of, but they daid it would make me very drowsey to be on both, so I'm hoping that by droping my xyrem dose, and keeping the oxycontin, it might be good,

I am suspicious of the Neurontine anticonvulsive because it does play games with the brain cells. It may increase your REM sleep at the expense of delta sleep. This is why I asked: do you need it for RLS/PLMD relief?


This is very interesting to me, do you think this could be disrupting my sleep, how do you know this info, where can I find out more, please let me know ASAP, I always needed it in the past, but if its the thing that's disrupting my sleep maybe it's better I don't take it--I take it only for RLS/PLMD not anything else

OK that's it for now, if I have more to say I'll let you know.

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Paste in, I hope it's legal!

Postby jumpyowl » Mon Jul 19, 2004 2:55 am

I would like to keep these posts together as I think we will discover something pioneering here. This is a correspondance with a gentleman, named Frank. Hopefully he will post again.

What is it? PLM/RLS or Narcolepsy? Or Both???

First there was a post from FrankM on July 10.


I'm sorry about asking this of you again, but I was wondering if my symptoms sound like RLS.

I'm always sleepy.
I can't sleep for more than 1.5 hours without waking up.
I don't have pain in my legs but I get very uncomfortable,(tingling feeling) if my legs or feet are touching, I always sleep with the sheets/covers between my legs so that they don't touch.
I had a sleep study done and there were "217 periodic leg movements", I had no stage 3 or stage 4 sleep and a decreased amount of REM sleep. I had no signs of Apnea. The doctor I was seeing only deals with Apnea so he couldn't comment on the leg movements.

I just had another sleep and MSLT study done yesterday but the results won't be available for 3 to 4 weeks.

Does it sound like I have RLS or am I just weird?


I replied the same day:

Posted: Sat Jul 10, 2004 8:31 pm Post subject: Welcome, Frank!

I also had a sleep test around April 24. I even posted the results on this web site. Look it up because I go in detail about it. (my thread is entitled Self-diagnosed).

What the results of your sleep study show that you have a severe form of PLMD (periodic limb movement disorder). This usually goes hand in hand with RLS. Many people have both, RLS when they are awake (the one you described so well - do they go away with movement?) and PLM when asleep.

I also had a severe case of it and I only had 186 near arousals when you had over 200!

It is bad that you do not have stage 3 or especially 4 sleep and is probably the cause of most of your morbidity.

Why do you have to have another test? Did they take a polysomnograph of you (even if the guy did not know how to interpret it ) ?

Take a look at my thread on pages 2-3. (the last post on page 2 and more posts on page 3) I am almost sure you have RLS/PLMD!

Another Frank, but really is JumpyOwl


Then from FrankM again on July 11

Jumpy Owl :

Thanks for the reply, I think you hit the nail on the head with the PLMD. I looked it up and it is exactly how my symptoms are. I was starting to get discouraged because I couldn't find an illness that I had all the symptoms of. Not that I want to have an illness, I just want to find out what's going on. The sensation in the legs, daytime sleepiness, movement of the arms, waking up shortly after going to sleep, frequently waking up.........., it all fits.

I had 217 PLM in 283 minutes, the first doctor did a complete sleep study, but he only deals with Apnea, since I didn't have any Apnea he had no clue what was wrong with me. He claims to be a sleep disorder physician but he isn't. He referred me to another doctor in Pittsburgh, this new doctor wanted me to have an MSLT and he said that the MSLT was difficult to read if I didn't have a sleep study the night before. So I got both Thursday night and Firday. He seems to think I have Narcolepsy, I'm sure I don't though. Although I did average less than 3 minutes to fall asleep during the 4 naps.

Do you know of any good websites that go into detail concerning diagnosis and treatment of PLMD? I will research this site today, seems like a great place.



Then my post: I am surprised but it is possible.

--------------------------------------------------------------------------------
I am surprised that you were tentatively diagnosed Narcolepsy/Cataplexy(?). But then again I have not seen your somnogram. This is what Stanford University Narcolepsy Center says about that disorder:



Symptoms
The main symptoms of narcolepsy are excessive daytime sleepiness and abnormal REM sleep: Narcolepsy is not only a serious and common medical problem, it also offers basic sleep researchers a unique opportunity to gather new information on the central mechanisms regulating REM sleep and alertness. Since the 1960s it has been known that several of the disabling symptoms of narcolepsy, such as sleep paralysis, cataplexy and hypnagogic hallucinations, are pathological equivalents of REM sleep. In sleep paralysis, a frightening symptom considered to be an abnormal episode of REM sleep atonia, the patient suddenly finds himself unable to move for a few minutes, most often upon falling asleep or waking up. During hypnagogic hallucinations, patients experience dream-like auditory or visual hallucinations, while dozing or falling asleep. Cataplexy, a pathological equivalent of REM sleep atonia unique to narcolepsy, is a striking, sudden episode of muscle weakness triggered by emotions. Typically, the patient's knees buckle and may give way upon laughing, elation, surprise or anger. In other typical cataplectic attacks the head may drop or the jaw may become slack. In severe cases, the patient might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack.

Diagnosis
Narcolepsy can be diagnosed using specific medical procedures: the diagnosis of narcolepsy is usually easy if all the symptoms of the illness are present. More often, however, the symptoms of dissociated REM sleep such as cataplexy are mild, and a nocturnal polysomnogram, followed by the multiple sleep latency test (MSLT) is suggested. This test, performed at a sleep disorders clinic, will confirm the daytime sleepiness by showing a short sleep latency of usually less than 5 minutes, as well as an abnormally short latency prior to the first REM period (SOREMPs). Other causes of daytime sleepiness, such as sleep apnea or periodic leg movements, are also excluded by the nocturnal recordings.


Quote from quote:
..., however, the symptoms of dissociated REM sleep such as cataplexy are mild, and a nocturnal polysomnogram, followed by the multiple sleep latency test (MSLT) is suggested. This test, performed at a sleep disorders clinic, will confirm the daytime sleepiness by showing a short sleep latency of usually less than 5 minutes, as well as an abnormally short latency prior to the first REM period (SOREMPs). Other causes of daytime sleepiness, such as sleep apnea or periodic leg movements, are also excluded by the nocturnal recordings.


You apparently had these two tests just lately. How come your second doc did exclude the PLMD from your somnogram??? It looks like the first doctor knew only about sleep apnea, the second only about Narcolepsy. As they both missed PLMD!!!

I would like to see your test results. Did they give you a copy? You can see mine on my thread. But you could also e-mail me privately. If you feel comfortable with it.

According to the Stanford info the doc should be able to diagnose anything you have with fair certainty. They have all the data!

Let me know if this is the case. There is a new drug (orphan drug) which has been approved by the FDA for the treatment of narcolepsy. If you are sure you have narcolepsy, I can provide more info on that drug. (Interestingly the NIH website did not even mention it). It would be very helpful because it regulates your sleep at night and increases the stages 3 and 4.

You could have both!!! RLS and Narcolepsy. Now this is something apparently they have not considered yet.


From FrankM:

I have not received the official results from the second sleep study or mslt yet, when I do I'll post the results of both. As far as the Narcolepsy, this is what he wanted to test/rule out with the mslt, he said many of my symptoms sounded like this could be the problem, but it was only conjecture on his part at the first office visit. Like I said earlier I averaged under 3 minutes to fall asleep, this confirms the daytime sleepiness, like the quote says, but I don't have the severe symptoms that are common with Narcolepsy.

He did not comment on the 217 periodic leg movements from my first sleep study, at my office visit, maybe he overlooked the results, he read it kind of fast. We'll see if I get the same type of results from the second study.


Needless to say I am looking forward from his test results.

Additional comment to Frank:


[It looks like the first doctor knew only about sleep apnea, the second only about Narcolepsy. As they both missed PLMD!!!

It is a bit surprising but it really looks like they each specialized in one sleep disorder. Let see what he says next visit. You may need to find an RLS doctor

I wonder why did he not take some time with you?

Thank you for sharing. I am really looking forward to looking at the data. It may be to your advantage to get the results before the next visit.
Jumpy Owl

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POLYSOMNOGRAPHY

Postby jumpyowl » Mon Jul 19, 2004 1:33 pm

I think it maybe useful to many of us if I paste some information on polysomnography here. These edited excerpts are from www.emedicine.com/neuro/topic566.htm, an article by

William J. Nowack: Polysomnography: Overview and Clinical Application.

A polysomnogram consists of a simultaneous recording of multiple physiologic parameters related to sleep and wakefulness The interaction of various organ systems during sleep and wakefulness is also evaluated.

Polysomnography (PSG) is used to evaluate abnormalities of sleep and/or wakefulness and other physiologic disorders that have an impact on or are related to sleep and/or wakefulness.

PARAMETERS MONITORED

By international standards, a polysomnogram must have a minimum of 4 neurophysiologic channels.

One electroencephalography (EEG) channel (central with an ear reference provides the best amplitude) to monitor sleep stage

Two electrooculogram (EOG) channels to monitor both horizontal and vertical eye movements (electrodes are placed at the right and left outer canthi, 1 above and 1 below the horizontal eye axis)

One electromyography (EMG) channel (usually chin or mentalis and/or submentalis) to record atonia of rapid eye movement (REM) sleep
Other parameters often monitored include the following:

Additional EEG channels, particularly in patients with sleep-related epilepsy

Additional EMG channels, particularly anterior tibialis, to detect periodic limb movements of sleep

Airflow

Electrocardiography

Pulse oximetry

Respiratory effort

Sound recordings to measure snoring

Optional parameters include the following:

Continuous video monitoring of body positions

Core body temperature

Incident light intensity

Penile tumescence

Pressure and pH at various esophageal levels

In 1992, the Office of Technology Assessment of the Agency of Health Care Policy and Research recommended, in an evidence-based assessment, 2 tests as having been studied sufficiently. Both tests are performed in a sleep laboratory.

Overnight polysomnography (oPSG) is an overnight recording of the patient's sleep.

Multiple sleep latency testing (MSLT) records multiple naps throughout a day.


Standard sleep studies usually include both tests, oPSG (may be performed over several nights) followed by MSLT the next day. Limitations usually stem from the fact that recording conditions may not reflect what happens during a regular night in the patient's home.

Although diagnosing a sleep problem on the basis of a recording over a single night is common practice, some authorities caution that more than 1 night of recording may be necessary.

Sporadic events may be missed on a 1-night PSG. External factors that disturb the subject's sleep may be present in the home but absent from the controlled environment of the sleep lab.

Patient preparation is important so that the patient sleeps naturally.

Patient instructions include the following:


Maintain regular sleep-wake rhythm

Avoid sleeping pills

Avoid alcohol

Avoid stimulants, including medications for narcolepsy

Avoid strenuous exercise on the day of PSG testing


DATA ANALYSIS

Overnight parameters (eg, times of lights on/off, total time in bed, total sleep time) are collected. The overnight recording is divided into epochs of approximately 30 seconds. The standard EEG, EMG, and EOG recordings are evaluated, and the predominant stage of sleep then is assigned to the entire epoch.

Total time and relative proportion of the night spent in each of the 6 stages and in REM and non-REM sleep are calculated. Latencies to REM and slow-wave sleep (SWS) are reported.

Special neurophysiologic events (eg, epileptic events, intrusion of alpha into sleep, periodic activity of tibialis anterior) are reported.

Respiratory activity (eg, apneic or hypopneic episodes, oxygen saturation) is correlated with sleep stages. Other parameters such as body position, gastroesophageal reflux, bruxism, and penile tumescence are recorded.

If a sleep apnea syndrome is diagnosed, a trial and titration of continuous positive airway pressure or a trial of an oral appliance may be undertaken.

Dyssomnias (disorders of initiating or maintaining sleep)

Circadian rhythm disorders

Narcolepsy

Idiopathic hypersomnia

Inadequate sleep hygiene

Sleep-related respiratory disorders

Sleep apnea syndrome

Upper airway resistance syndrome

Parasomnias

Disorders of arousal

Disorders of sleep-wake transition

Disorders that occur during REM sleep

Nightmares

REM behavior disorder

Medical-psychiatric sleep disorders

Medical - Sleep-related asthma

Psychiatric

Depression

Panic disorder

Neurologic - Sleep-related epilepsy

Others

Bruxism

Restless legs syndrome and periodic limb movement disorder


TREATMENT is determined by the disorder diagnosed by PGS and/or MSLT
Jumpy Owl

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On Xyrem

Postby jumpyowl » Mon Jul 19, 2004 4:22 pm

I researched Xyrem as to its efficacy in fibromyalgia patients. Since now it appears that it may also have a beneficial effect on RLS/PML, I think that this information may be of interest to us.

SOME INFORMATION ON XYREM or GHB

History

gamma-Hydroxybutyric acid (GHB) is a CNS depressant that has become increasingly popular as a drug of abuse over the eighties and nineties. Many names are used for GHB such as sodium oxybate, sodium oxybutyrate, -hydroxybutyrate sodium, g-OH, 4-hydroxy butyrate, and g-hydrate, as well as others. Names used on the street include Liquid Ecstasy, Liquid X, Liquid E, Georgia Home Boy, Grievous Bodily Harm, G-Riffick, Soap, Scoop, Salty Water, Somatomax, and Organic Quaalude.

In the 1960s, a French researcher synthesized GHB in an attempt to create a -aminobutyric acid (GABA) analog that would, unlike GABA, cross the blood-brain barrier. Somewhat simultaneously, in 1963, GHB was found to be a naturally occurring metabolite in the human brain. The first accepted medical application of GHB was for intravenous induction of anesthesia. However, its use was limited due to the high frequency of vomiting, seizure-like activity in animals, and inability to produce analgesia.

In the 1970s, GHB was recommended for narcolepsy because it increases slow-wave sleep and consolidates sleep at night, therefore decreasing sleep during the day.

In the 1980s, GHB was commonly sold over-the-counter in health food stores where it was alleged to increase the effect of growth hormone. In the late 1980s and early 1990s, GHB was advocated for the treatment of alcohol dependence and opiate withdrawal. During the same time period, GHB was illicitly advertised as a hypnotic to replace tryptophan, which had been removed from the market due to its connection with eosinophilia-myalgia syndrome.

Since 1990, an increasing number of cases of both abuse and toxic reaction has been noted, and in 1997 GHB was labeled a "date rape" drug by the press. In March 2000, GHB became a schedule I controlled substance in the U.S.

Narcolepsy and Insomnia

Owing to the ability of GHB to increase slow-wave sleep and facilitate REM sleep efficiency, GHB may improve nighttime sleep and therefore improve alertness during the day, which could alleviate some of the symptoms of narcolepsy. In addition, administration of GHB to patients with narcolepsy revealed significant improvements in sleep attacks, daytime drowsiness, cataplexy, hypnogogic hallucinations, and sleep paralysis. Since GHB is a CNS depressant, it has been investigated for treating the symptoms of insomnia, and in one investigation it was rated by the subjects as being an "excellent hypnotic." However, when being used as a hypnotic, an oral dose of GHB 100 mg/kg resulted in frequent awakenings at either 1.5 or 4-5 hours after ingestion, which accounted for 14 of the 25 adverse effects reported in this dose group. Furthermore, GHB reportedly produced sleep paralysis, sleep walking, and cataplexy.

Sleep Physiology

The drug GHB stimulates slow-wave sleep It does not appear to suppress REM sleep and may even decrease fragmentation of REM sleep. It appears to increase "slow" sleep as evidenced by a slow synchronized electroencephalographic recording. In addition, GHB increases slow-wave sleep (stages 3 and 4), whereas light sleep (stage 1) is decreased, and the frequency of awakenings is reduced. In healthy subjects, under double-blind conditions, single oral doses of GHB 2.25 g significantly increased the time spent in slow-wave sleep, while sacrificing stage 1 sleep and significantly decreasing slow-wave sleep latency. The efficiency of REM sleep is increased, but the REM latency and time spent in REM sleep do not change.
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Xyrem and fibromyalgia

Postby jumpyowl » Mon Jul 19, 2004 4:45 pm

Xyrem appears to be effective on fibromyalgia. I did some research in that area, too, to help a relative. :)

Effect of Xyrem on fibromyalgia
and its effect on somnographic patterns


The prescribing of Xyrem is not restricted by the FDA to the approved indication of cataplexy, associated with narcolepsy. This means that the off-label use for another mysterious illness, fibromyalgia is legal and up to the discretion of the attending physician.

As a diagnostic: I appears that Xyrem is not only effective in treating fibromylagia but it is the only drug that can be used for diagnostic purposes, because it can distinguish between chronic fatigue syndrome and fibromyalgia. It also affects the underlying cause of diffuse musculoskeletal pain, abnormal sleep pattern at night.

Fibromyalgia, or fibrositis syndrome, is characterized by diffuse musculoskeletal pain, chronic fatigue and non-restorative sleep . The cause of fibromyalgia remains unknown. In early open-label trials of sodium oxybate for the treatment of narcolepsy , some patients had coexistent fybromyalgia. Following the nightly administration of sodium oxybate, these patients reported marked improvement in their fibromyalgia symptoms in addition to improvement in narcolepsy-related symptoms (Scharf, 1985). Subsequently, in a four-week open label trial (Scharf, 1998) and a 20 week double-blind, placebo-controlled trial (Scharf, 2003) conducted with fibromyalgia patients, the nocturnal administration of sodium oxybate produced significant improvement with pain and fatigue and were temporally associated with significant increases in nocturnal slow wave (stage 3 and 4) sleep

In clinical trials with Xyrem, frequently reported adverse reactions included dizziness, headache, nausea, pain, somnolence, and pharyngitis. Sodium oxybate is a central nervous system and respiratory depressant. Therefore, the concurrent use of other CNS depressants or alcohol is contraindicated.

Xyrem is a schedule III drug under the controlled Substances Act and available only through restricted distribution , the Xyrem Success ProgramTM.

REFERENCES:

1. Moldofsky H.: Sleep and muculoskeletal pain. Am. J. Med. 1986, 81(A):85-89.
2. Scharf, M, et al.: Effects and effectiveness of gamma-hydroxybutyrate in patients with narcolepsy. J. Clin. Psychiatry 1985; 46: 222-225.
3. Scharf MB et al. Effect of gamma-hydroxy-butyrate on pain, fatigue, and the alpha sleep anomaly in patients with fibromyalgia. Preliminary Report. J. Rheumatology, 1998; 25:1986-90.
4. Scharf MB et al. Effect of Sodium Oxynate on Clinical Symptoms and Sleep Patterns in Patients with Fibromyalgia. J. Rheumatology, 2003; 30(5): 10070-74.

Some notes from the references listed above:

Certain aspects of sleep pathology are related to pain in fibromyalgia. Patients showed an alpha (7.5-11 Hz) non-REM sleep anomaly interpreted by Moldofsky as an indicator of an arousal disorder within sleep associated with the subjective experience of non-restorative sleep (1,3). This alpha wave intrusion into the non REM sleep is a normal part of the EEG pattern of wakefulness. However, if it occurs intensively in sleep, it is accompanied by daytime complaints of musculoskeletal pain, fatigue, and altered mood..

A number of findings suggest a role for the neuroendocrine axis as central to the etiology of fibromyalgia, including the diminished slow wave sleep and decreased growth hormone secretion

GHB is a naturally occurring metabolite of the human nervous system, found at the highest concentrations in the hypothalamus and basal ganglia. Other findings suggest that GHB functions as a neurotransmitter or neuromodulator rather than an incidental breakdown product of gamma-aminobutyric acid metabolism.

In healthy human volunteers, low doses (~30 mg/kg) of GHB promote a normal sequence of non-REM and REM sleep lasting about 2-3 hours. The most consistent effect observed in patients after GHB administration is an increase in slow wave sleep (SWS). Total nocturnal REM sleep duration is usually unchanged. No tolerance to the hypnotic actions of GHB was shown in narcoleptic patients over a 6 month time period.

In addition, to the increase in slow wave sleep (SWS) seen with GHB administration, a dose related increase in growth hormone was also observed. This effect is consistent with the well-established growth hormone increase seen in association with SWS. (3).

Adverse experiences with GHB have been minimal in incidence and degree of severity and wee essentially limited to episodes of sleepwalking, enuresis, headache, and dizziness.

Dosage: GHB was given 2,25 g at bed time and the same dose 4 hours later in an aqueous solution having a concentration level = 150 mg/ml.

In a second study (2003) the dose was 6 grams per night four hours apart of 3 grams and 3 grams sub doses. The concentration of GHB in water was 500 mg/ml concentration.

Medications also taken during the study: estradiol, hydrocodone, acetaminophen, ibuprofen

Medications withdrawn: klonopin, trazadone


I appears to be worthwhile to study the effect of Xyrem on PLMD. :o
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Postby Sole » Mon Jul 19, 2004 7:52 pm

This is very interesting information. With the hesitancies to prescribe pain meds and benzos, I can only imagine the hesitancies for Dr.s to prescribe this one. If you find any study results on Xyrem and RLS please share them. The report talks about short wave sleep being extended. Which stage of sleep is affected the most with RLS/PLMD?
Sole

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Sleep stages

Postby jumpyowl » Tue Jul 20, 2004 2:46 am

Non-REM SLEEP

NREM sleep is a time when body and brain behave exactly as you would expect in sleep: most of the muscles relax, body systems take a rest, and the brain waves associated with wakefuleness and alertness disappear and are replaced by increasingly slow, deep waves of inactivity.

NREM sleep accounts for an average of about 70% of the total sleep time of a young adult. There are 4 stages of NREM sleep - Stage 1, 2, 3 and 4.

STAGE 1:

The transition from wake to sleep occurs within minutes of theonset of slow rolling eye movements.

The patient is less aware of their surroundings then just a few minutes ago. They may waken by a whisper, or noise. They are relaxed, their breathing is more regular and there is more slow, rolling eye movement noticed. The patient may also have what are know as "hypnogogic expriences" - dream-like sensations of falling, hearing voices, or seeing flashes of pictures.

It takes 5 – 10 minutes to progress to Stage 2. Stage 1 accounts for only about 5% of the total sleep time.

Stage one sleep brain actively is shown as wavy lines of fairly regular small undulations which suggest mental relaxation.

STAGE 2:

Stage two is the first stage of true sleep and acounts for about 50% of total sleep. The patient is even less aware of their surroundings and is characterized by as light sleep since individuals are easly aroused from this sleep state.

Stage 1 & 2 are “transitional” stages of sleep. It takes approximately 30 minutes to complete these stages and enter Stage 3.

The waveforms are low voltage and a mixed frequency. This stage is characterized by “spindles and K-Complexes” in the EEG tracings.

STAGE 3 and 4

Stages 3 & 4 are also referred as “SLOW WAVE SLEEP”.

As the patient is in a very relaxed state, they have a slow, regular heartbeat and respiratory rate. Their muscles are very relaxed. It is very difficult to arouse a patient in “Slow Wave Sleep”. If they are awakened, they are confused and slow to react. It is normally easy for they to go back to sleep.

Delta Waves
The waveforms are large and the larger the waveform, the deeper the sleep. These waveforms are also known as "Delta Waves".

During this time, the growth hormone is secreted. This hormone in children encourages growth. In adults it assists with healing of muscles. The body is believed to carry out most of its repair work.

A healthy young adult spends about 7% of their total sleep time in stage 3 and around 11% in stage 4.


I thought it would be useful to show this info here from:

http://www.silentpartners.org/sleep/sinfo/s101/physio4.htm

People with Narcolepsy/Cataplexy) have almost no slow wave sleep. People with fibromyalgia have alpha wave intrusions into these deep sleep stages. People with PLMD have numerous arousals during the deep sleep phases negating their efficacy.

FDA only approved Xyrem for the treatment of Narcolepsy/Cataplexy. There are some studies showing efficacy of Xyrem for fibromyalgia, so some brave doctors are prescribing it as off label use for fibromyalgia patients.

I am afraid it is only my slowly sprouting idea that Xyrem might help RLS/PLMD based on a very few anecdotal experiences. I plan to get in touch with the professor who discovered the usefulness of Xyrem for fibromyalgia to ask him about other sleep disorders. Nothing seems to have been published on this topic.
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About FrankM

Postby jumpyowl » Tue Jul 20, 2004 3:13 am

Well, Frank must have missed this whole new thread because he posted another message at the old location. That post suggests that he has not been reading my posts to him.

Today there was a message on my answering machine saying that the doctor "thinks I might have some Narcolepsy". I can't get to see him for at least 3 weeks so I don't know what his rationale is. I have spent the afternoon researching Narcolepsy and I still don't think that is my problem.
The symptoms I have:
1.) severe EDS (excessive day time somnolence)
2.) distrubed night sleep
3.) fell asleep in under 3 min average during MSLT
4.) Vivid dreams during MSLT, (abnormal REM?)
The symptoms I don't have:
1.) Cataplexy
2.) Sleep Paralysis
3.) Hallucinations falling/waking from sleep, although I do have very vivid dreams at times falling asleep or while taking a short nap, <30 min.

Now I'm really confused.


Hello Frank! I hope you start reading this thread from now on. It has a lot of interesting stuff for you. Which you apparently have not seen.

Could you read my other posts and get back to me?.

I thought I already answered your questions in two different posts! Why do you say you have no narcolepsy? Just because you have no cataplexy? The others indicate narcolepsy!

You could have both, RLS and Narcolepsy. Please read the other posts in this thread by Romer!

Hope you can get back to me. I have been waiting for your reply!
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Postby Sole » Tue Jul 20, 2004 4:18 am

My husband just had his sleep study done on Saturday so this information was very helpful. Thank you for doing all of this research, Jumpy. You are very much appreciated. Knowledge is power and you've empowered me a great deal this past two weeks. I am quite sure that my husband's results will show sleep apnea and PLMD. We both agree, after reading your post, that his stage 3 and 4 sleep is lacking greatly. I assume this will be proven or disproven by the sleep study results.

May I suggest, making a thread entitled "For Frank" in the forum where he's been posting? I think he may not know how to navigate the forums correctly.
Sole



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Thanks, Sole!

Postby jumpyowl » Tue Jul 20, 2004 1:32 pm

I appreciate your prompt and to the point replies. The system cannot work well without it!

I dug up a part of my sleep report:


Posted: Fri Apr 30, 2004 8:45 am Post subject: Rest of the sleep report

--------------------------------------------------------------------------------
I found the sleep stage statistics of interest:

I spent 8.1% in stage 1, 59.6% in stage 2, 16.8% in stage 3, and 8.3% in stage 4, which is the deep restorative sleep. (out of a total sleep time of 341.5 minutes, 5 hrs, 42 minutes). My REM sleep was 7.2%.

Actually the oxygen saturation of haemoglobin as a mean was 96% and the range 94-98%.

I spent 79% of sleep time on my right side, and the rest prone.

I had PLMS jerks 181 times, jerks with arousal 103, no jerks with wake, jerks with no arousal 78. I even had jerks during the REM period (3).



Your husband will get some reports like that (perhaps has to "demand" it.)
Ask him whether he would be kind enough to share some of the results. I am curious to see whether he has had arousals and near arousals. How many??? ( His doctor will probably concentrate on the sleep apnea part. :( )
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Postby Sole » Tue Jul 20, 2004 3:36 pm

He is more than happy to share the test results. The technician was 90% sure he'd need to come back for another night to see how things go with him using a CPAP half the night. A sleep apnea diagnosis would not be a bad thing as he has SEVERE sleep apnea. If the results record limb movements accurately, I don't see a problem with them diagnosing PLMD either. I'll post his results, when he gets them.
Sole



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I appreciate it.

Postby jumpyowl » Tue Jul 20, 2004 4:37 pm

Thanks, Sole and thank your husband.

I did not mean to imply that the sleep apnea should not be focused on. That is probably the main medical problem of your husband! And it has to be fixed! What I meant is then some time docs when find one abnormality they may not look further. So I was curious about the possibility of a PLMD.
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