Narcolepsy & Sleep Apnea

Apologize in advance for such the long post...

In April of 2007 I got a titration study and found I had Moderate obstructive sleep apnea. In May of that year I had sinus surgery. I do not remember the name of it, but they opened my nasal passages and reduced the size of my turbinates. I slept better than I had in years. My CPAP machine was the best thing I ever did for myself. My pressure was prescribed at 10cm. I am using a full face mask. At this point I was a senior in high school and finally had an answer to why I fell asleep in class, was tired constantly etc.

In Feb of 2008 I started evening classes for nursing school. I thought I had been done with falling asleep in class until this started. I notice and have been told by my classmates I fall asleep in class, even just for a few moments. With being up from 6:30am until at least midnight, and having clinicals at 6:45 am on weekends, I thought this was just that I was sleep deprived and tried to rework my schedule to no avail.

Now a year later, I have recently found out that my paternal grandmother has been diagnosed with narcolepsy for years, and while she denies taking medications for it, does use a CPAP at night. My mother, father and twin sister also have sleep apnea, and use CPAP therapy. Upon this information, I realized that my father, has always had narcoleptic qualities. Stories are constantly told of him falling asleep during driving, reading, and has been fired from several jobs because he has been caught falling asleep. I have done much research on the internet about Narcolepsy and have found there to be a possible genetic link.

So, I am keeping the same schedule. I work at a daycare center, and so I try to take a 45 min nap everyday during my break. I find during the childrens naptime, I easily fall asleep, esp. with the relaxing music and lights off etc. At school, with the lights off and my teachers discussing powerpoints, I easily doze. I wake up feeling knowing I have been asleep, but it has only been for a few minutes. If I do not get up and go do something, I just as easily fall back asleep. The breaking point came about a week ago when I was driving. I usually feel tired when driving, but have never fallen asleep while driving. On this particular day, I did. I believe it was just for a second, until I drifted on to the gravel, and fortunatly the road was straight and relativly empty, and I awoke once I hit the gravel. This was about 2:00 in the afternoon, bright and sunny. Since my titration study in 2007, I am not sleeping as well as I did at first. I think I may need a new pressure as my titration was done before the surgery, and perhaps my pressure has changed one or two cm.

Since then, I have been keeping a sleep journal, so when I go to my doctor, can save myself the step later. I notice I am very prone to just falling asleep if I have the oppurtunity. Laying on my bed studying, sitting on the couch, listening to lecture, etc. Whenever I am not physically or mentally stimulated I guess.

What do you all think? Is is possible to have both sleep apnea and narcolepsy? Any thoughts/ideas/comments would be appreciated!

My sleep doc, when I went for my first post-cpap start followup, went through and entire set of questions and answers, and has now referred me for a MSLT (multiple sleep latency test) to test me for narcolepsy based on some things *I* thought were normal, but apparently are indicative of narcolepsy. While I have not fallen asleep to the level you are describing, I have other tendencies. The doc asked me to poll my family for similar symptoms, since there is that genetic tendency. My sister has some of the same symptoms, my son has a few....when talking to my mother, she told me that there is at least one person in our family that has been diagonsed with narcolepsy, although she could not remember who it was. She is going to check with my aunt who knows all things in the family and let me know.

You may want to get your doc to test you using the mslt test. He said that in his opinion, the current treatments for narcolepsy are nothing short of miraculous, since he can prescribe meds one day, and the day after the patient starts them, in most cases the narcolepsy is totally controlled.

It is indeed possible to have both OSA and nacrolepsy. You really need to raise your concerns with the docs.

I just had the MSLT yesterday to hopefully rule out nacrolepsy as the reason for my continued exhaustion & fatigue. Don't know the results as of yet but I now know that I can fall asleep in under 90sec regardless of the time of day.

Is your obstructive apnea getting the best treatment possible? What is your AHI? What is your leak? How much sleep are you getting every night? If your PAP therapy is as effective as possible but you still have excessive daytime sleepiness, that definitely needs to be looked into, for your safety and the safety of others. Another sleep study may be needed, possibly including the daytime test Debjax mentioned for narcolepsy, depending on your symptoms. That is my understanding, anyway.

From what I understand there is only a very weak genetic link with narcolepsy, except with dogs. Whether someone else in your family has it is not really diagnostic and most people who have it don't have anyone else in their family with it. You need a sleep study and a history to be sure.

Anyway, as my doctor told me some people have adequate treatment with CPAP and yet are still very sleepy. This is what happened to me so I thought. Turns out I have narcolepsy. It is the most horrible thing because it's not as easy to treat as apnea. In fact, I'm finding it impossible. The stimulant drugs barely work to keep away sleep attacks but they sure work great at producing the most awful "side" effects. I have lots of sleep attacks during the day, I'm not even aware of it half the time, I'm just told of the things I miss even while I"m sitting right there. Those are the "microsleeps". Other times I cannot resist sleeping. I can fight it off for a while but eventually I will just fall asleep. I've hit my head etc. I've had many near accidents with driving so that at this point I almost never drive anywhere.

Do you have the hallucinations and paralysis? I have them everytime I sleep, both the hypnogogic and hypnopompic hallucinations and the paralysis. I have cataplexy, but thankfully it's mild and infrequent. I also have the worst night time sleep. Everyone kept telling me oh you just need to adjust to the CPAP. I think I'm adjusted. I can go to sleep just fine, it's just that I wake up over and over. I can wake up an hour after going to sleep and think the entire night is over. I need a clock to tell me that I need to go back to sleep because an hour isn't enough. But I keep waking up again and again with the same feeling like I slept enough already...and usually with paralysis and hallucinations. It's this problem and the excessive daytime sleepiness that is making my life so difficult. I dunno if you experience stuff like this I know many people with narcolepsy do, but I've heard some people with it only have the excessive daytime sleepiness.

One little comment, which is not really about narcolepsy, but is important to note and that is that unless you're using Cpap for your midday naps, you're actually putting yourself in a worse-off position than you might be in if you didn't nap at all, however much you might feel you need one. It is just vital that you use Cpap every single time you sleep (barring 2 mins while in a boring meeting ) as sleeping without it just tires you out even more. There are small machines that people have for travelling, that might be useful for you if you can get a private place at work to use it (and maybe an alarm clock), so you might want to look into that.

Julie wrote:One little comment, which is not really about narcolepsy, but is important to note and that is that unless you're using Cpap for your midday naps, you're actually putting yourself in a worse-off position than you might be in if you didn't nap at all, however much you might feel you need one. It is just vital that you use Cpap every single time you sleep (barring 2 mins while in a boring meeting ) as sleeping without it just tires you out even more. There are small machines that people have for travelling, that might be useful for you if you can get a private place at work to use it (and maybe an alarm clock), so you might want to look into that.

I understand what you're saying, but something you may not understand about narcolepsy is that it's not a matter of feeling a nap is needed... it happens whether you want it to or not no matter where you are or what you are doing. Yes, it can sometimes be fought off for a limited time, but eventually it is IMPOSSIBLE to fight off. Sometimes you don't even know it is coming it happens so suddenly, it would be impossible to apply a mask let alone find a place to plug in a machine etc. Thankfully I did not have oxygen drop below 90% on my sleep study, but that's just me.

Thanks to everyone.

As far as the multiple sleep latency test, maybe you can help me with this. What was your experiences with this? I have read that the mslt you get a chance to sleep every 2 hrs and depending on how long it takes you to fall asleep determines if you have the disorder or not. I believe webmd quoted like less than 10 minutes to fall asleep.

As far as cataplexy, i do not experience this. Nor do I experience the hallucinations. Perhaps you could benefit from a different medication. When I sleep at night, I sleep like a log. I have a Fisher & Pykel FlexiFit 431 full face mask. I really experience little to no leaks. I have only recently started being awoken in the middle of the night, and it is as simple as just turning over and I go back to sleep.

A travel machine would be good for use at work, maybe if it could just stay there, I am not sure what my O2 was during my sleep study. The problem is that I can sleep for a good 45 minutes during my break, clock in, go into my room where all the children are sleeping, and sit down to do paperwork and find myself falling asleep. Is there any kind of documentation you can give your professors, bosses etc. that tell about narcolepsy and that this is a disorder. Like, if i was to inadvertantly fall asleep (since I am not diagnosed and on medication yet) and my boss found me, she could technically fire me for doing so, even though it was a medical problem and beyond my control?

Hi. Just want to add that symptoms stemming from any sleep disorder can present very similarly to symptoms of narcolepsy. Except in overt cases with classic cataplexy, unless all known sleep disturbances are effectively treated, it can be hard to tell the difference. When the MSLT nap test is done, it is following a night in the sleep lab so it can be seen if one had a good night's sleep and still had the excessive daytime sleepiness.

Sometimes the initial sleep study and titration are just the first step of diagnosing and resolving our issues. Residual daytime sleepiness may require another sleep study or other tests. Making sure the current treatment is therapuetic would be the first step.

Kathy

Hi beachgurl -

I see you have a data capable machine. Do you have the software and card reader so you can look at your data? In your case, I would definitely think that would be absolutely necessary. Even though you're on CPAP, it could be you're still having apneas, and that's the cause of your drowsiness. What you're describing is exactly what I experienced before my apnea was treated properly.

beachgurl_1988 wrote:As far as the multiple sleep latency test, maybe you can help me with this. What was your experiences with this? I have read that the mslt you get a chance to sleep every 2 hrs and depending on how long it takes you to fall asleep determines if you have the disorder or not. I believe webmd quoted like less than 10 minutes to fall asleep.

While the actual test is as you describe, the diagnosis of narcolepsy isn't as simple as falling asleep within 10mins. They hook you up to many of the same wires used in an overnight sleep study and it is a combination of sleep latency and the data recorded by those sensors that will allow for the diagnosis regarding narcolepsy. When given the opportunity to sleep for 20 mins after each 2 hr period, it never took me more than 5 mins to fall asleep and one time just a mere 90secs. Yet I would be highly surprised if I am diagnosed with narcolepsy, as I've never fallen asleep in the uncontrollable manner described above. Yeah I am dead tired and yes I can fall asleep at the drop of a hat if given the chance. But I can also remain awake when doing such things as driving, talking to someone or sitting in a mtg.

beachgurl...I agree with what others have said here that chronic sleep deprivation from undertreated sleep apnea can look a lot like narcolepsy, you could even get a "false" positive on an MSLT (well, it would show that you're sleepy, that's not false ;>). For me my doctor and I ruled out inadequate treatment with the CPAP because the machine reports my AHI below 1.0, mask leak is not bad, I use the CPAP every night, etc. Also that I experience cataplexy can really be nothing else but narcolepsy. And, again, some people with sleep apnea still feel sleepy even after good treatment with CPAP. So you should first figure out if your machine is working well for you then look at possibly other sleep disorders/risidual sleepiness. From what I understand the treatment for risidual sleepiness and narcolepsy have some similarities...scheduled naps and stimulant drugs. You can let your employer know that you have a sleep disorder so that if they do see you falling asleep they (hopefully) shouldn't fire you. You don't need a diagnosis of narcolepsy to do that, sleep apnea is enough, it can make people sleepy during the day just like narcolepsy can. Your doctor should be able to back you up on that and help you keep your job while you work on getting good treatment. One note about scheduled naps, my doctor told me to keep them at 10-15 minutes and he said the idea is to stay in the lighter stages of sleep so that you don't feel groggy the rest of the day. So you could probably start doing that right away and you might feel better during the day.

A fairly decent explanation of MSLT:

"Falling asleep early in one of the daytime naps only diagnoses excessive sleepiness, not narcolepsy. For narcolepsy to be confirmed, the patient should have early onset of REM sleep. Specifically, he or she should enter into REM sleep ("latency to REM") within 5 minutes after first falling asleep, and this should occur in at least two of the four/five naps. Normally, you would never enter REM within 5 minutes of falling asleep after a good night's sleep. Remember, normal REM first occurs about 60 to 90 minutes after sleep onset, and then periodically thereafter. After a good night's sleep, REM occurrence in a brief nap period indicates a state of abnormal brain activity. Even one early-REM nap is abnormal, but to be sure of the diagnosis the standard has been accepted as two or more early REM periods out of four or five naps." --http://www.lakesidepress.com/pulmonary/ ... olepsy.htm

nobody wrote:You can let your employer know that you have a sleep disorder so that if they do see you falling asleep they (hopefully) shouldn't fire you.

This is not general advice, but specific to my situation.....There is no way I would tell my boss if I have narcolepsy, I would be out of a job as soon as she could find someone to replace me. My husband had his heart attack in August of '05, and wound up with heart damage....she had him dropped to 3 days a week within 9 months, and he is constantly afraid he is going to lose his job.

I wound up with chronic angina (no CAD, but aterial spasm), resulting in quarterly trips to the cardiologist (using my accrued sick or vacation time) I injured my ankle severely and this affected several business trips I was supposed to take, not to mention having to take a few hours each week to do physical therapy (I mean a FEW hours and it was hell every day I had to go) for six months....then I had to have surgery to fix the ankle. At the same time, I developed a trigger thumb that had to be operated on about a month after my ankle surgery, again affecting her schedule.....I was moved to 4 days a week a year ago....one of our other coworkers hurt her ankle and had to take a day off each week for a few months for physical therapy after losing 4 weeks due to the injury....she was never able to go back to full time.

Although there are no blatant violations of ADA, It has the appearance that anyone with chronic illnesses is either moved to part time (with absolultely NO benefits, including sick time, vacation or paid holidays) as soon as it can feasibly be managed, or strongly encouraged to find employment elsewhere by means of cutting hours or other methods......sucks, but there is no real alternative for us. Hubby and I have, over the last 2 years, lost 40% of our annual income.....

If I told her I had narcolepsy, I'm pretty sure I would be gone within 180 days.

I agree with you that it's a risk. People often flippantly city the ADA as though it's some sort of golden shield against losing your job. Employers can certainly and easily find legal ways to get rid of you even though the real reason is they don't want someone who needs "accommodations". On the other hand, you can't expect your employer to accommodate you if they are not aware that you need the accommodations. Many employers will work with you, especially if they like and need you. IMO it kind of sets the bar higher for people who have medical problems, which seems unfair, but that's the way our society works (unfortunately).