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Any Disorders That Can Mess With Rem


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#1 corey91386

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Posted 25 September 2012 - 07:40 PM

I was wondering if there are any disorders that can make your MSLT look like you have narcolepsy when you might not have it? I know I have it because I have had 2 MSLT's @ Ohio St. and the Cleveland Clinic. I am just curious trying to calm some anxiety about this disorder.

#2 DeathRabbit

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Posted 25 September 2012 - 09:53 PM

I was wondering if there are any disorders that can make your MSLT look like you have narcolepsy when you might not have it? I know I have it because I have had 2 MSLT's @ Ohio St. and the Cleveland Clinic. I am just curious trying to calm some anxiety about this disorder.


There are several substances that can suppress or promote REM sleep. Be sure to tell your doc about everything you have taken, even if it is less than legal! There are a few other conditions as well, but I would guess if you have gotten this far, those have been eliminated. Narcolepsy is pretty much the final resort after all other diagnoses have fallen through.

#3 Hank

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Posted 26 September 2012 - 08:32 AM

There is a reason you have to give a urine sample the morning after your PSG. If there were substances in your sample that could interfere with the validity of the results, they would be detected. N is essentially a "rule out diagnosis". To be diagnosed with N (which is relatively rare) anything that is more "common" would already be ruled out. Many of us, including me, have gone through years mis-diagnosis before finally getting it right. I had been prescribed a medication that supressed REM and it delayed my diagnosis and put me through hell. If you have been diagnosed, it is likely the correct diagnosis. If you have been accurately diagnosed, consider yourself fortunate. If you have it, you have it. Now you can get on with getting better and receive treatment that is helpful. It is not like a cancer diagnosis, which everyone understands. It does take time for the reality to settle in. While it is settling in, do your homework as you are doing right now. If the diagnosis doesn't seem to fit, keep asking questions.

The first time I heard N was when I asked what the MSLT was for during the MSLT. I Googled Narcolepsy and it sounded just like me- I was almost in a panic and I tried not to fall asleep. The truth scared the heck out of me. I never fell asleep with my face in a soup bowl, but I constantly struggled to stay awake- all the time. And I never dropped on the floor from laughter, but I do have Cataplexy. My body tingles when I laugh and I can't hold up my head. My knees buckle when I am startled. I was flooded with examples of Cataplexy throughout my life that I could never explain. Injuries I could never explain all had a common link- thrilling. Like skiing accidents, and a long fall down a snow field while climbing. It was C all along and I never knew. If you don't have Cataplexy, then you don't have it. But educate yourself about Cataplexy because it can be very subtle and hard to figure out. I worked with a psychologist to review the diagnosis and how I had lived with it for so long and never knew. That helped a lot because I was not a road block to my own treatment. I have lived with this and I always will live with this. It is just easier to live with it now that I know and I am treated correctly.

Keep at it. You will only arrive at the truth.

#4 DeathRabbit

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Posted 26 September 2012 - 01:20 PM

There is a reason you have to give a urine sample the morning after your PSG. If there were substances in your sample that could interfere with the validity of the results, they would be detected. N is essentially a "rule out diagnosis". To be diagnosed with N (which is relatively rare) anything that is more "common" would already be ruled out. Many of us, including me, have gone through years mis-diagnosis before finally getting it right. I had been prescribed a medication that supressed REM and it delayed my diagnosis and put me through hell. If you have been diagnosed, it is likely the correct diagnosis. If you have been accurately diagnosed, consider yourself fortunate. If you have it, you have it. Now you can get on with getting better and receive treatment that is helpful. It is not like a cancer diagnosis, which everyone understands. It does take time for the reality to settle in. While it is settling in, do your homework as you are doing right now. If the diagnosis doesn't seem to fit, keep asking questions.

The first time I heard N was when I asked what the MSLT was for during the MSLT. I Googled Narcolepsy and it sounded just like me- I was almost in a panic and I tried not to fall asleep. The truth scared the heck out of me. I never fell asleep with my face in a soup bowl, but I constantly struggled to stay awake- all the time. And I never dropped on the floor from laughter, but I do have Cataplexy. My body tingles when I laugh and I can't hold up my head. My knees buckle when I am startled. I was flooded with examples of Cataplexy throughout my life that I could never explain. Injuries I could never explain all had a common link- thrilling. Like skiing accidents, and a long fall down a snow field while climbing. It was C all along and I never knew. If you don't have Cataplexy, then you don't have it. But educate yourself about Cataplexy because it can be very subtle and hard to figure out. I worked with a psychologist to review the diagnosis and how I had lived with it for so long and never knew. That helped a lot because I was not a road block to my own treatment. I have lived with this and I always will live with this. It is just easier to live with it now that I know and I am treated correctly.

Keep at it. You will only arrive at the truth.

Huh that's odd, they didnt do that at my clinic. No urine sample, just show up and sleep. Weird. Certainly seems like they should, but then again, this is Alabama. People are very uptight about that sort of thing down here.

#5 Megssosleepy

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Posted 26 September 2012 - 01:30 PM

Huh that's odd, they didnt do that at my clinic. No urine sample, just show up and sleep. Weird. Certainly seems like they should, but then again, this is Alabama. People are very uptight about that sort of thing down here.


I didnt have a pee test either? Im in Va and they normally are pretty uptight! :blink:

#6 DeathRabbit

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Posted 26 September 2012 - 04:40 PM

Sleep medicine is still coming into it's own and struggling for legitimacy, so it's understandable that there isn't a good set of standard practices. I'll be honest, I thought sleep clinics were BS, until I started having issues! Now I know first hand how crippling a sleep related disorder is. We're really lucky to have been born in this century. Just 100 years ago, we would have probably ended up on the streets or getting stabbed in the brain in an asylum.

#7 Hank

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Posted 29 September 2012 - 08:00 AM

So, it sounds like I was the only one who was tested- great. It is not the first time I was suspected of drug use- just glad I passed the test honestly. Actually, it was printed in their protocol brochure- very by the books. I am glad they did it- there is no way anyone can discredit or question the validity of my diagnosis, which is important to me.

#8 SleepyRaffie

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Posted 29 September 2012 - 10:23 AM

I was drug tested. It makes sense to do it.

#9 purpley

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Posted 30 September 2012 - 11:14 PM

I was wondering if there are any disorders that can make your MSLT look like you have narcolepsy when you might not have it? I know I have it because I have had 2 MSLT's @ Ohio St. and the Cleveland Clinic. I am just curious trying to calm some anxiety about this disorder.


Sure, anything that causes sleep deprivation gives you a positive MSLT, because all it tests for is how quickly you drop into REM sleep. But if you're wondering if there's some strange, obscure, and invariably fatal disorder that looks just like narcolepsy on an MSLT but really isn't............nope. If you're not taking drugs or medications, and nothing/no one is keeping you awake, you've got narcolepsy.

Are you anxious about having N, or worried that it's something worse than N? If it's anxiety about N, you've come to the right place. :)

#10 corey91386

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Posted 06 October 2012 - 08:42 PM

Sure, anything that causes sleep deprivation gives you a positive MSLT, because all it tests for is how quickly you drop into REM sleep. But if you're wondering if there's some strange, obscure, and invariably fatal disorder that looks just like narcolepsy on an MSLT but really isn't............nope. If you're not taking drugs or medications, and nothing/no one is keeping you awake, you've got narcolepsy.

Are you anxious about having N, or worried that it's something worse than N? If it's anxiety about N, you've come to the right place. :)



Yea I'm just having a hard time accepting it. I was diagnosed at Ohio state when I was on pristiq. I went to the Cleveland clinic for a 2nd opinion off of all medication and received another positive diagnosis. I have eds but do not have sleep attacks. I can't nap and have trouble sleeping. I get really spaced out and dizzy quite often. I think anxiety is playing a role in these symtoms. I basically feel out of it all of the time. Not myself. I know sleep deprivation can do all sorts of wonders. I'm sure I will improve.

#11 DeathRabbit

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Posted 06 October 2012 - 11:29 PM

Yea I'm just having a hard time accepting it. I was diagnosed at Ohio state when I was on pristiq. I went to the Cleveland clinic for a 2nd opinion off of all medication and received another positive diagnosis. I have eds but do not have sleep attacks. I can't nap and have trouble sleeping. I get really spaced out and dizzy quite often. I think anxiety is playing a role in these symtoms. I basically feel out of it all of the time. Not myself. I know sleep deprivation can do all sorts of wonders. I'm sure I will improve.

Insomnia is actually quite common in Narcolepsy. I dont have Xyrem yet, and it takes a boat load of OTC stuff to knock me out at night, and then I wake up 5 million time every hour.

#12 Megssosleepy

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Posted 08 October 2012 - 09:40 AM

Yea I'm just having a hard time accepting it. I was diagnosed at Ohio state when I was on pristiq. I went to the Cleveland clinic for a 2nd opinion off of all medication and received another positive diagnosis. I have eds but do not have sleep attacks. I can't nap and have trouble sleeping. I get really spaced out and dizzy quite often. I think anxiety is playing a role in these symtoms. I basically feel out of it all of the time. Not myself. I know sleep deprivation can do all sorts of wonders. I'm sure I will improve.


I feel like the media has brainwashed into think that N is something that it is not. Thats why so many of us are shocked when we hear our Dx, never in a million years would I ever thought N! It was the first thing that came out of Drs mouth! I would say a large percentage of PWN do not have sleep attacks as they show in the movies... Mine are more like "man I tire, of gosh I am reallly tired, Urgh cant think, Ahh I feel like I am in a fog, I am so so so so so so so tired, must keep my eyes open" But I have not fallin into my soup! They make it seem like a sleep attack is something so random and you dont know its coming! If I am talking to someone my eyes will get all glassy and I will be more tired then normal... but we fight the erg to sleep.

The thing with anxiety (this may not be the case for everyone) is that it is caused by the N not the other way around! I have found with a strict sleep schedule and the Xyrem (aka my deep sleep) my depression as well as anxiety have been getting much better.

One more thing... I didnt think I had C and I thought my problems stemmed from being tired as hell but not able to sleep at night, reflecting back... Ive had C attacks many many times... and the reason I wasnt sleeping at night or being such a light sleeper was because my brain thought I was asleep all day...

Hope this helps?

#13 corey91386

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Posted 08 October 2012 - 10:20 AM

I feel like the media has brainwashed into think that N is something that it is not. Thats why so many of us are shocked when we hear our Dx, never in a million years would I ever thought N! It was the first thing that came out of Drs mouth! I would say a large percentage of PWN do not have sleep attacks as they show in the movies... Mine are more like "man I tire, of gosh I am reallly tired, Urgh cant think, Ahh I feel like I am in a fog, I am so so so so so so so tired, must keep my eyes open" But I have not fallin into my soup! They make it seem like a sleep attack is something so random and you dont know its coming! If I am talking to someone my eyes will get all glassy and I will be more tired then normal... but we fight the erg to sleep.

The thing with anxiety (this may not be the case for everyone) is that it is caused by the N not the other way around! I have found with a strict sleep schedule and the Xyrem (aka my deep sleep) my depression as well as anxiety have been getting much better.

One more thing... I didnt think I had C and I thought my problems stemmed from being tired as hell but not able to sleep at night, reflecting back... Ive had C attacks many many times... and the reason I wasnt sleeping at night or being such a light sleeper was because my brain thought I was asleep all day...

Hope this helps?




Yes. Thank you. Yea I feel like my brain is a sleep all day. I just wait for it to wake up. Which sometimes it never does. Everyone kept telling me I don't have N very bad because I do not have sleep attacks. I wish i could sleep easier. Rather I fight sleep all day because I cannot nap.

#14 DeathRabbit

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Posted 08 October 2012 - 10:26 AM

Yes. Thank you. Yea I feel like my brain is a sleep all day. I just wait for it to wake up. Which sometimes it never does. Everyone kept telling me I don't have N very bad because I do not have sleep attacks. I wish i could sleep easier. Rather I fight sleep all day because I cannot nap.


That's because most people's sympathy only extends to situations they can understand. Just ignore their ignorance.

#15 Megssosleepy

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Posted 08 October 2012 - 10:29 AM

Yes. Thank you. Yea I feel like my brain is a sleep all day. I just wait for it to wake up. Which sometimes it never does. Everyone kept telling me I don't have N very bad because I do not have sleep attacks. I wish i could sleep easier. Rather I fight sleep all day because I cannot nap.


I found that taking stimulants during the day helped me sleep at night... let my brain know I was awake during the day, and time to sleep at night... can't say I slept great but better then before!

#16 Rapideyemovement

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Posted 08 October 2012 - 05:54 PM

I feel like the media has brainwashed into think that N is something that it is not. Thats why so many of us are shocked when we hear our Dx, never in a million years would I ever thought N! It was the first thing that came out of Drs mouth! I would say a large percentage of PWN do not have sleep attacks as they show in the movies... Mine are more like "man I tire, of gosh I am reallly tired, Urgh cant think, Ahh I feel like I am in a fog, I am so so so so so so so tired, must keep my eyes open" But I have not fallin into my soup! They make it seem like a sleep attack is something so random and you dont know its coming! If I am talking to someone my eyes will get all glassy and I will be more tired then normal... but we fight the erg to sleep.

The thing with anxiety (this may not be the case for everyone) is that it is caused by the N not the other way around! I have found with a strict sleep schedule and the Xyrem (aka my deep sleep) my depression as well as anxiety have been getting much better.

One more thing... I didnt think I had C and I thought my problems stemmed from being tired as hell but not able to sleep at night, reflecting back... Ive had C attacks many many times... and the reason I wasnt sleeping at night or being such a light sleeper was because my brain thought I was asleep all day...

Hope this helps?


I don't have anxiey, but the foginess and mandatory afternoon naps is the norm for me. The Dr put me on Nuvgil and the 2nd day I got a headache and quit. Since the Dr. gave me a whole package of information and dvd on Xyrem, I'm going ot assume that will be plan B. How long were you on Xyrem before you noticed results?

#17 corey91386

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Posted 09 October 2012 - 09:13 AM

I don't have anxiey, but the foginess and mandatory afternoon naps is the norm for me. The Dr put me on Nuvgil and the 2nd day I got a headache and quit. Since the Dr. gave me a whole package of information and dvd on Xyrem, I'm going ot assume that will be plan B. How long were you on Xyrem before you noticed results?


I am in the same boat. I was given nuvigil but also had pounding headaches. I have not tried xyrem yet. I am in the process of getting it. I'm pretty sure my anxiety is a direct result of sleep deprivation.

#18 LauraL

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Posted 09 October 2012 - 02:26 PM

I don't have anxiey, but the foginess and mandatory afternoon naps is the norm for me. The Dr put me on Nuvgil and the 2nd day I got a headache and quit. Since the Dr. gave me a whole package of information and dvd on Xyrem, I'm going ot assume that will be plan B. How long were you on Xyrem before you noticed results?


Headache is a common side-effect for anything that affects neurotransmitter levels. I've had them when starting/stopping/switching doses of antidpressants and Nuvigil. They've always gone away. It takes time for your body to adjust to a new medication. I'd give it 2-3 weeks to see what the long-term side effects will really be like. For me, the headache and jitteriness went away by about week two. I still have dry mouth and eyes, but I can live with that if it means I get to be awake. :)

#19 The Dreamer

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Posted 16 October 2012 - 03:26 PM

Yeah...no urine test before my MSLT. And, they didn't tell me to stop taking any of my meds before the PSG/MSLT. So, like the previous PSG, I took all my pills for the night before I went in. Including the sleep pill that I was on at the time (supposed to take it a couple hours before bed time normally anyways, and like before I intended to sleep right away after they finished hooking me up. I pretty much don't watch TV unless its from one my TiVo's.... Hard to watch TV with commercials and without instant replay.

Though they did have me not take my Provigil during the MSLT. And, no coffee. But, I thought I read in other places here that people were told to discontinue Provigil a week or so before their MSLT. Might affect REM. Might be something else I was taking.... Because the cardiopulmonary doc (no sleep medicine certification) said that I didn't have any REM during my PSG or MSLT. Though later my Neurologist/Sleep Medicine doctor reviewed the data, and said it would support a Narcolepsy diagnosis. But, then he had me get a spinal tap...and my hypocretin level was low...but not low enough, so he reversed the diagnosis. According to the paper references...it was 160 units below median, but was 40 units above the low threshold. I forget what the units are (seem to recall that its either ng/mL or pg/mL). He's all about objective tests....like I'm depressed because I checked a box, saying that I'm worried about my health, or that my EDS is limiting my activities. Though I don't feel sad.

Psychiatrist said if I had walked in off the street, he wouldn't have considered me to be depressed. But, because my Sleep Doctor says I'm depressed...he's going with that. Though he did say Narcolepsy is something that is clinically diagnosed not based off of some experiment that Stanford is doing. I then got to see the Psychiatrist that treats Narcolepsy patients, and he also reviewed my MSLT and said it supports a Narcolepsy diagnosis, and along with everything else...including my Cataplexy. I have Narcolepsy. Until that point I had Cataplexy due to Sleep Apnea and Depression. Or I had Idiopathic Hypersomnia with Cataplexy. As long as they don't say the N word, they can avoid having to get certified to prescribe Xyrem, etc.

The psychiatrist that I'm seeing is the only doctor in the city that treats Narcolepsy patients...and the only doctor in the Xyrem success program. Didn't know Behaviorial Health is in the lower level of the student health center. Had assumed that because of the address, that he's only there to treat students (us faculty/staff types aren't allowed to go there for our needs.) Though probably should've realized it was possible, since the sleep lab is down there. He's says he's been thinking of trying to take over the sleep lab and get it accredited. The head of the lab right now is a senior RPSGT. And, accreditation requires that the head be board certified in sleep medicine. (something I didn't learn until last year's NN Conference....but I had already had both my first PSG and later PSG/MSLT from there....)

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