Treat UARS -> REM Rebound or Narcolepsy?

[mikenet]

I've been going to a doctor who believes I have UARS. I have bad nasal congestion every night, moderate snoring, and mouth breathing. Sleep trouble developed first, then snoring and nasal congestion a few years later, then finally mouth breathing this year. Sleep study showed no sleep apnea but highly fragmented and disturbed sleep. Due to the nasal congestion I've only been able to get real use out of my CPAP for two nights, and when the congestion is gone, I barely see any events at all on the smartcard. I've had the CPAP for over a month now, but the nasal congestion almost always makes it impossible to use .

The odd thing is I when I treat the airway resistance, I feel MUCH worse. I tried breath right strips a few months ago, and my roommate said I went from disturbed mouth breathing to perfect, normal sleep, and he was convinced I was cured. I felt horrible, but was convinced it was only REM rebound, so I continued using them. I slept about 12 hours a day, and would pass out, on the spot, wherever I was, about every 2 hours. After a week and a half of trying, I gave up, and went back to my weird resistant mouth breathing. I tried mentioning this to a few doctors, but they just sort of ignored it.

Last week my doctor prescribed singulair, and suggested I raise the head of my bead. Bingo, perfect breathing again. I've only been at it for two days, but I've been having intense dreams, hallucinations upon falling asleep and awakening, muscle weakness, etc. The first night I had sleep paralysis(something I haven't experienced in years), and was *SURE* a good friend was in my room trying to wake me up, and she's done a few times in the past. When the paralysis subsided, she wasn't there. Moreover I realized she hasn't been in the country for months. When going to sleep last night, I kept hearing people talking, like the radio was on, but as soon as I tried to figure it out, it'd disappear. I believe I was conscious during these incidences. I haven't been able to tell some dreams from reality, either(normally I always know when I'm in a dream). I was COMPLETELY sure that my ex-girlfriend sent me a message telling me what time her final exam was yesterday. But this morning, the message isn't on my blackberry, webmail, or email application(if it were real, it'd be in ALL THREE). I must have dreamt it. I have experienced trouble with cataplexy in the past, although usually only for a few seconds at a time. Could this really be REM rebound? Or is this narcolepsy?

My sleep study clearly showed that I did NOT have narcolepsy, but it seems that when I treat the UARS, I develop all the classic signs. When I originally tried the breath right strips, I didn't know enough about it to identify narcolepsy. This is driving me crazy, and I'm not sure what to tell my doctor about it, as she's ignored it before, and it really doesn't seem plausible that treating UARS would bring upon narcolepsy. Especially when it took me 90 minutes to fall asleep during the study(yet when I use feel like this, it takes about 2). Heck, maybe it's something else that I don't even have a name for. Anyone else experience something like this before. Could it really be just bad REM rebound?...I have been having sleep trouble for about 6 years now.

Sorry for the slightly incoherent message, I'm barely awake, and I think I'm going to hit this sack again in a few minutes. Just wanted to ask for advice while conscious, ya know?

[cflame1]

Sometimes, treating sleep apnea (I'm guessing that it's the same with UARS) leads to other issues that were there previously but not seen due to the sleep apnea. For example PLMD/RLS.

[Woody]

This was a realy interesting post. A couple of days ago a friend who has
sleap apnia told me about raising the headboard 5% or ~5 to 6 inches.
Said it helped his sleap apnia I think I will try it too.

[mikenet]

Yeah, go ahead and try raising the head of your bed. My doctor said 4-6 inches. I went with a 4 inch stack of paper on each side(paper is expensive...use an old phone book and save some trees if you can). After making contact with the carpet, that turned into a 6.5inch boost(wider contact area than bed feet=>less pressure on carpet on head end=>carpet sinks less than with feet), although it could sink down to 4 with time.

My roommate swears it makes me breath and sleep normally. I beg to differ, but maybe I just uncovered another problem. I left a desperate sounding message for my sleep doc last night...hopefully she'll have some input other than sending me to a psych ward for hallucinating .

[Gipper]

There is another thead right now about wedge pillows. I have used a 5- 7 inch wedge pillow for several years. It is much better then rasing your bed, especially if you have a partner that doesn't want the bed raised. You get the same result as raising the bed by using a wedge pillow.

Hope this helps..Gipper

http://www.amerimark.com/cgi-bin/amerim ... 8&days=XVQ

[mikenet]

I just got off the phone with my sleep doctor(I left her a really desperate message last night), and she's faxing a prescription over for a PLMD/RLS medication, and will try to get me into a sleep study for narcolepsy with a raised bed(last time it took months to get in, but she thinks she can pull some strings).

Apparently it's uncommon but possible for treating UARS/Sleep Apena(as she calls it, although it doesn't fit any definition for mild sleep apnea) to unmask PLMD or narcolepsy.

[kteague]

Mikenet,

I must have missed something... your doctor is giving you a script for RLS/PLMD meds although you have no symptoms of either, and no limb movement problems showed up on your sleep study? Those meds can cause as many troubles as they fix. I strongly suggest you wait till after another sleep study to get a diagnosis rather than shooting in the dark.

I had symptoms of narcolepsy when my OSA, RLS/PLMD were at their worst. Treating them made many of the symptoms disappear. UARS is another story I'm not familiar with much. I know you would like to have answers, but do wait for definitive answers.

Kathy

[mikenet]

Very minor limb movement showed up on my sleep study(at the same time as the UARS events ...hmmn, wonder why), although both my roommate(who sleeps opposite hours as me, and gives me daily updates on my sleep ), and romantic partners have indicated zero movement. The reason the Dr. suspected something is that klonopin is the ONLY drug I've ever been able to use to improve sleep(actually gives me more energy during the day), and she was guessing that maybe it was suppressing PLMD/RLS. Unfortunately, I've been taking klonopin for a few days now, and it's starting to loose effectiveness.

I begged the doctor for anything to improve sleep. She wanted to give me drugs to knock me out...but I really don't care how much sleep I get as long as it's good...I'd take 2 hours of good sleep over 10 hours of what I get now. Just knocking me out does nothing useful.

I'm not sure what to do. My sleep has never been this bad before, so I was hoping a shot in the dark would be better than nothing. I got a blood test for iron earlier today, but I eat so much iron, I doubt that'll come back low...if anything it'll come back too high. I haven't had it tested in a few years, but it was normal around the time my sleep trouble started.

I really wish someone would just give me some xyrem and let me see if it helps...I have chronic fatigue/fibromyalgia due to the lack of sleep, and xyrem seems to help there, too. It's just INCREDIBLY controlled, and a pain to get, so it looks like I'm going to need a sleep study first.

[Julie]

I'd like to remind everyone that raising the bed is essentially a 'fix' for GERD (reflux problems), and not for UARS, narcolepsy, apnea itself, etc. If the GERD is taken care of, however, very often the apnea will seem to improve greatly (and possibly any other incidental condition that may depend on apneic episodes to manifest itself somehow. I find that I catnap well (without Cpap) on the couch if more of my upper body is anywhere over 45 degrees up, as opposed to horizontal, but whether it is about GERD or apnea alone I don't know.

[new-to-BiPAP]

Are you going to get your ferritin tested as well as iron? My iron has always showed normal but my ferritin has been low. If your ferritin is lower than 50 (even tho it can be lower than that and still be 'normal' it has been associated with RLS/PLMD. My hubby says my PLMD varies quite a bit. Some days it's horrible and keeps him up. Other times he doesn't notice it. If the leg jerks go along with the breathing...they could be connected somehow. Maybe if one is treated the other will get better...but dunno. I believe treating the UARS can help sleep paralysis but don't quote me. Since I've been treated for UARS I've felt a lot worse. They think the settings aren't quite right on my xPAP yet. It's good you are going in for another study. Is it a straight sleep study or will they check the settings for your xPAP? Have they suggested to try nasal irrigation or rinses for the congestion? I've had some luck with homeopathic remedies for allergies and congestion and sinus pain.

[Guest]

I just got my ferritin level back at 70 ng/mL, so that seems to be okay(the doctor wanted to see it above 60, even though the lab reference range went as low as 24!).


It looks like the soonest sleep study I can get, even with the doctor pulling strings, is 5.5wks out. At this point, I don't know how to make it through the next few hours, much less weeks. After a few days of bad sleep, I start getting intolerable full body pain, major confusion, etc. I might have to go buy myself a Playstsation 3 and some advil to get my mind off of it for a few hours.

I talked to my Chronic Fatigue Syndrome Dr, expecting to unsuccessfully beg him for Xyrem. To my surprise, he said he's been having great luck treating CFS symptoms like mine and improving sleep quality with it, so he prescribed me some. Supposedly it could take 2 weeks to get all the paperwork through, but at least it beats waiting for the sleep study. [/list]

[snoozeandlose]

Hey how is the Xyrem working? It sounds like you go into REM sleep before you are truly asleep. I did this and was told I was having panic attacks when it was really sleep paralysis. I hear voices like a radio is on somewhere and dream even when I nap for 10 minutes. I have apnea, gerd and excessive sleep disorder, but also all the symptoms of narcolepsy except cataplexy and I don't fall asleep uncontrollably. You have to have REM disturbance to have narcolepsy.

Also pillows and wedges compress your chest cavity and put additional pressure on your stomach which is the reason they say raise the bed.

I have had three different insurance companies okay Xyrem and it all cases was approved within a few days and arrived in less than a week.

[praying for sleep]

I went through a horrible time with sleep deprivation. Went on Ambien but couldn't tolerate, went on anti-anxiety meds and they didn't work for long, went on Lunesta and also could not tolerate. Didn't do well on Ambien or Lunesta because I felt like my body was fighting and kept arousing for gasps of air.
I finally got in to see a pulmonologist sleep med dr. Tried multiple other meds that would give little relief, then lose their effectiveness.

They tried to do a sleep study, but out of several hours in bed, I only slept 2 hrs and that was completely fragmented. I was diagnosed with UARS and mild sleep apnea. Started CPAP. Not so sure it's doing much of anything. After sleeplessness for so long, I was feeling constantly drowsy and lethargic during the day but could not sleep. Started Nuvigil which helps with daytime sleepiness/lethargy/tiredness, but I still need some way to get some sleep. I've been approved for xyrem but I am so scared because if I had such a struggle to breathe on Ambien and Lunesta, what may possibly happen on something like xyrem? It's supposed to knock you out cold and fast.

I just want to know if there are other people out there who have sleep apnea or UARS and have used Xyrem safely without difficulty.

[SleepingUgly]

What were you prescribed xyrem for previously?

I am not sure if your description of your dreams = sleep paralysis... I'm not sure it's not, either... I thought in sleep paralysis you are awake but can't move. Not that you dream that you are awake and it seems very real (which actually happened to me recently twice during periods of sleep deprivation, when I was taking a nap).

But you say you have cataplexy... Yet your sleep study didn't show narcolepsy. What about your sleep study indicated you do not have narcolepsy?