anybody have both apnea and narcolepsy?

[Angeline]

I've tried to read the archives but haven't found if there is anyone who has two sleep disorders at the same time? I have OSA with Narcolepsy w/cataplexy. Does anybody out there have this dreaded combination? Or know anybody that goes through what I go through? Any feedback would be welcome....

Angeline

[kteague]

We do have some forum members with both, but I'm not sure if they're here frequently. Hopefully they'll stop thru and see your post. Welcome.

[Mary Z]

I don't have narcolepsy but have hypersomnia for which I take Nuvigil.
My cousin has narcolepsy, but I don't know if he has OSA. He used to take desoxyn for the narcolepsy. Don't know what he takes now. I have heard from people on another forum who have both. Good luck. What a combination!

[SleepingUgly]

Just to clarify... Unless you have cataplexy, a clear diagnosis of narcolepsy cannot be made in the presence of OSA unless the OSA is well-treated. Anyone with a poorly treated sleep disorder can appear to have narcolepsy on an MSLT. Yes, it's possible to have both, though.

[Angeline]

I was diagnosed & treated for apnea 4mos b4 MSLT. The nite b4 the MSLT I used CPAP while hooked up to wires and no apnea episodes took place so they proceeded with MSLT the next day. During the test I went to REM sleep within 7-10 minute during 4 naps; they skipped the 5th nap and told me I had narcolepsy with cataplexy along w/osa.

My husband says I don't jump around in my sleep as much as I used to now that I am using an adjustable pressure (I'm not saying that right am I?). When I wake up in the morning I feel more refreshed from sleep than I have in 20 years of struggling with a disease I didn't know I had. However, I still have spell of weakness during waking hours in which I cannot move my limbs or my head drops forward or my entire body just quits working out of the blue. These spells are much less severe than they used to be and shorter in duration.

Do you think that my apnea is still not well treated?

[SleepingUgly]

I was diagnosed & treated for apnea 4mos b4 MSLT. The nite b4 the MSLT I used CPAP while hooked up to wires and no apnea episodes took place so they proceeded with MSLT the next day.

It's hard to say whether your Sleep Disordered Breathing is well treated. You weren't having apneas, so that's good. I don't know anything about how they scored hypopneas and whether they looked at RERAs (Respiratory Effort Related Arousals) and Flow Limitations, so it's hard to say whether you're completely clear of all sleep disordered breathing.

That said...

During the test I went to REM sleep within 7-10 minute during 4 naps; they skipped the 5th nap and told me I had narcolepsy with cataplexy along w/osa.

My husband says I don't jump around in my sleep as much as I used to now that I am using an adjustable pressure (I'm not saying that right am I?). When I wake up in the morning I feel more refreshed from sleep than I have in 20 years of struggling with a disease I didn't know I had. However, I still have spell of weakness during waking hours in which I cannot move my limbs or my head drops forward or my entire body just quits working out of the blue. These spells are much less severe than they used to be and shorter in duration.

I assume these spells of weakness are cataplexy. I do not know enough about what could possibly cause cataplexy-like symptoms besides cataplexy associated with narcolepsy. If this is true cataplexy, which it very well may be, that makes a strong case for your having narcolepsy.

Do you ever fall asleep uncontrollably during the day? Since CPAP? Did your doctor ever discuss treating your cataplexy with medications? Do you still have excessive daytime sleepiness?

[angelbo]

[/quote]I assume these spells of weakness are cataplexy. I do not know enough about what could possibly cause cataplexy-like symptoms besides cataplexy associated with narcolepsy. If this is true cataplexy, which it very well may be, that makes a strong case for your having narcolepsy.

Do you ever fall asleep uncontrollably during the day? Since CPAP? Did your doctor ever discuss treating your cataplexy with medications? Do you still have excessive daytime sleepiness?[/quote]


I have excessive daytime sleepiness esp all day everyday sometimes the only thing that helps is to stop what i'm doing and take a nap. It's been like that for years. Thankfully, i have not fallen asleep walking or driving. Tried Nuvigil, it made me very nervous and nauseated; had to quit. I recently started taking choline & inositol and Cell Food for wakefulness; it helps til 6pm or so. The Apap helps with feeling refreshed when I first wake up but the sleepiness shows up one or two hrs later so i take those two supplements.

For cataplexy I tried Xyrem, it gave mea horrible anxiety attack. So doc gave me amytriptilene. It controls it so-so. But i'm concerned about getting fat and having heart problems on this med.

[Angeline]

Sleepingugly, that previous post was really me, angeline, I don't know why my computer wouldn't take my name so i had to change it to angelbo to get it to post but don't be confused, it's just me....

[RoxanneY]

I was diagnosed with Sleep Apnea May 2010. I adjusted well to the CPAP, but I was still exhausted and could not focus and I knew something was still wrong. I could not get out of bed. I say my internist and had all blood levels checked. All was normal. I called the sleep Dr. and he read the cim card. My Pressure was increased and I went on my way. At the beginning of December, I called the sleepp Dr and went to see him again. I had another sleep study and I do have Sleep Apnea and Narcolepsy and RLS.

I started on Nuvagil and immediately felt the difference. I also take Requips for the RLS. I try to get 7 plus hours of sleep during the week and let myself sleep in one day of the weekend.

My brother had Sleep Apnea, had the surgery and was diagnosed with Narcolepsy/Cataplexy 4 years later.

It gets better, I promise.

[SleepingUgly]

Tried Nuvigil, it made me very nervous and nauseated; had to quit.

What dose? Did you ever try Provigil?

I recently started taking choline & inositol and Cell Food for wakefulness; it helps til 6pm or so.

Really?? I have no idea what those things are, but maybe I should take them. I can't get anything to last until 6pm. I am a rapid metabolizer, I guess.

The Apap helps with feeling refreshed when I first wake up but the sleepiness shows up one or two hrs later so i take those two supplements.

You're not tired during the day with those? Can you send a link to exactly what you're taking?

For cataplexy I tried Xyrem, it gave mea horrible anxiety attack.

Before you fell asleep? I've only read about it, and understood it to be so fast in working that you're supposed to drink it in bed.

So doc gave me amytriptilene. It controls it so-so. But i'm concerned about getting fat and having heart problems on this med.

I am not up to speed on which medications are useful for cataplexy, other than Xyrem.

[RoxanneY]

I take Nuvagil 250. It lasts till about 8PM and then I start to wind down.
Started on 125, but it did not last till about noon.

[TheDreamer]

I had Narcolepsy...and then I didn't.

OSA dx was in December 2008...been compliant with cpap, but after the sleep debt was repaid...my insomnia (which had gone away a few years before I guess the OSA got bad) came back and so did my EDS, sleep attacks, HH, SP, etc. Did the MSLT last December....at first it was normal, but then neurologist said there was brief SOREMs, but the cpap would wake me up. So, he said I did have Narcolepsy....but even though he's a sleep certified neurologist and the doctor that did the PSG/MSLT is a pulmonologist without sleep certification, my pulmonogist sleep doc (and in the same practice as the doc that summarized the PSG/MSLT) wanted more....a spinal tap, Even though only 88.5% of N w/C patients have the no/low hypocretin (though 99.1% of those with no/low hypocretin have N w/C)...and I didn't find what the findings are for patients with N w/o C are....though I hear it isn't considered a test for those. But, after enduring the spinal tap....the Narcolepsy diagnosis I had was pulled back.

OTOH, I also did the blood test and I do have the HLA-DQB1??? (I seem to recall somebody linking a study of sleep difficulties for people with the gene but don't have Narcolepsy....)

Nobody seems interested in fixing my sleep, even though I'm sure that given that my old problems came back when my sleep debt was paid off that its connected some how. Instead I have a Idiopathic Hypersomnia.....

Maybe I need to find a new job and move away....somewhere where I can see the doctors that say IH and N w/o C are the same thing or that continued OSA with continued EDS with CPAP compliance is N....

And, not my current sleep doctor who said he doesn't believe me when I say I have insomnia, because my cpap compliance report says I'm keeping it on all night.

I just want to sleep again....

Meanwhile...I did get put on 20mg Ritalin SR at 8am, and an extra 10mg Ritalin at 12....though it doesn't help the wave of sleepiness that hits about 4 hours after I get up (around 10:30) or the next wave that hits around 4pm (and they don't seem to care that I need to work to 6pm...and later during the summer time)....though if I did have a formal diagnosis of something like N, maybe then I could claim a disability where I don't have to work nights (on top of regular hours) anymore....

Debating if I want to be patching a server tonight....

The Dreamer.

[SleepingUgly]

I take Nuvagil 250. It lasts till about 8PM and then I start to wind down.
Started on 125, but it did not last till about noon.

Wow, I wish I could get that many hours out of any wake-promoting agent!

[SleepingUgly]

Bold is mine:

What are these so-called hypocretin (orexin) molecules?
Hypocretins (orexins) were discovered by two groups of researchers almost simultaneously, hence the two names "hypocretins" and "orexins". The first group called them "hypocretin-1" and "hypocretin-2" after discovering that the molecules were found only in the hypothalamus and had some weak resemblance with the gut hormone secretin. Only 10,000-20,000 cells in the entire human brain (out of many billions) secrete these specific hypocretin molecules. The hypothalamus, a region localized deep in the base of the brain, regulates many basic functions such as the release of hormones, blood pressure, sex, food intake regulation and sleep. The subregion of the hypothalamus containing the hypocretin cells was known to be especially important for the regulation of feeding. These molecules were thus first hypothesized to be important in feeding regulation. In fact, the second group that discovered the hypocretin molecules called them "orexin A and orexin B" (from orexis=appetite in grec) and suggested that they stimulated appetite. Orexins and hypocretins are thus interchangeable terms and the scientific community is divided on what is the best name to use.
#

How can I have my hypocretin levels measured?
Hypocretin-1 (but not 2) can be measured in the cerebrospinal fluid (CSF) but not in the blood or in any other peripheral tissue. A lumbar puncture is required to collect CSF. Most patients with narcolepsy-cataplexy have no hypocretin-1 molecules in their CSF. If you are interested in having your CSF hypocretin levels measured, please contact Mali Einen at the Center for Narcolepsy.
#

How do you collect cerebrospinal fluid (CSF)?
To draw CSF requires a lumbar puncture (spinal tap). This is a safe but not completely insignificant procedure (the main problem is that temporary headaches can occur in about 5% of the cases following the procedure). The procedure is a little similar to an epidural anesthesia (actually safer and easier), is used a lot by neurologists to exclude many neurological problems such as brain hemorrhage, brain infections, multiple sclerosis, etc... We have tried to measure hypocretins in other tissues such as blood but this molecule probably exists in sufficient amount only in the brain and the CSF. Clearly, some effort should be devoted in measuring hypocretin levels more easily.
#

What is HLA?
HLA stands for " Human Leukocyte Antigens". HLA antigens are molecules produced by the HLA genes. HLA molecules are expressed on the surface of white blood cells to coordinate the immune response. DR and DQ are two different types of HLA molecules. HLA genes are very important systems to keep the immune system in check. The HLA molecules are very particular in that different individuals generally carry different HLA "subtypes" (for example DR1, DR2, subtypes of HLA-DR; DQ1, DQB1*0602, subtypes of HLA-DQ). The fact HLA molecules are slightly different from one individual to another makes our immune system slightly different from each other.
#

What is the best HLA marker in narcolepsy?
The best HLA marker for narcolepsy is HLA-DQB1*0602. Over 90% of patients with narcolepsy-cataplexy carry HLA-DQB1*0602. This marker is more specific and sensitive than the old marker HLA-DR2, especially in African Americans.
#

Can HLA testing be used to diagnosed narcolepsy?
Absolutely not. About 20% of the general population carry the exact same HLA subtypes (HLA-DR2, DQB1*0602, etc). Furthermore, many patients without cataplexy do not have HLA-DQB1*0602. The HLA subtypes are only predisposing factors but are not sufficient by themselves to cause narcolepsy.
#

How is HLA involved in narcolepsy?
No one knows for sure. A large number of other diseases (>80) like Multiple sclerosis or Juvenile Onset (type I) Insulin Dependent Diabetes Mellitus are also associated with specific HLA subtypes. Most of these diseases are autoimmune disorders.
#

Can narcolepsy be diagnosed by measuring CSF hypocretin levels?
Yes but with a caveat. No single test will ever be 100% specific for narcolepsy but this test is clearly much more specific than HLA typing. Aproximately 90% of the narcoleptic patients we have tested to date have undetectable hypocretin levels in their cerebrospinal fluid (CSF). All the normal individuals (with or without HLA-DR2 or DQB1*0602) we have tested have detectable hypocretins in their CSF. Having undetectable levels (independently of any other severe medical condition) is thus clearly a strong signature for narcolepsy. We however still need to extend the study before fully assessing the value of the test. For example, we don't know if patients without cataplexy also have abnormal hypocretin levels. Furthermore, it is likely that some (probably rare) patients with narcolepsy will have normal CSF hypocretin levels. In narcoleptic dogs for example, hypocretin CSF levels are normal even so the animals have all the symptoms of narcolepsy. In this case, the receptors for hypocretins are the problem, not the hypocretin molecules (receptors are proteins on which the hypocretins act to produce their effect on cells, like a lock -receptor- and a key -hypocretin-). In the narcoleptic dogs, the hypocretin is present but cannot produce its effect on cells in the brain.

http://med.stanford.edu/school/Psychiat ... aq1.html#2

Dreamer,

Do you have cataplexy?

Why do you want a diagnosis of Narcolepsy over a diagnosis of Idiopathic Hypersomnia?

BTW, in my opinion, there is no such thing as OSA and Idiopathic Hypersomnia. My reasoning is that some proportion of people with OSA continue to have EDS despite therapeutic CPAP use. Therefore, how can we ever say that their hypersomnia is "idiopathic" when it can always be attributed to OSA? It's just semantics, though.

[Angeline]

Sleepingugly, sorry it took so long to get back to you but here are the answers to your questions:

Tried Nuvigil, it made me very nervous and nauseated; had to quit.

What dose? Did you ever try Provigil?125mg of Nuvigil and no, I didn't try Provigil

I recently started taking choline & inositol and Cell Food for wakefulness; it helps til 6pm or so.

Choline ^ Inositol tablets are sold at Vitamin World usually in the local mall or online. I take one tablet in the morning 9 or 10 am and another half around 3 or 4pm which carries me til 9pm or so. (I recently changed my routine). The next day I take Cell Food; a few drops in a bottle of water. I sip on that throughout the day until 6 or 7pm. You can google that product online also.

Really?? I have no idea what those things are, but maybe I should take them. I can't get anything to last until 6pm. I am a rapid metabolizer, I guess.I take these supplements the way that I do because my body gets used to one product if I take only one otc product. I take them more than once thru the day because I need all day coverage. Then sometimes I skip days and take nothing at all to rest all day taking no supplements at all. (I hope I said that clearly enough to be well understood.

For cataplexy I tried Xyrem, it gave mea horrible anxiety attack.

Before you fell asleep? I've only read about it, and understood it to be so fast in working that you're supposed to drink it in bed.I took the stuff while in bed just as instructed. Fell asleep quickly but 2hrs later awoke with horrible anxiety attack

So doc gave me amytriptilene. It controls it so-so. But i'm concerned about getting fat and having heart problems on this med.

The Merck Manual online says that there are antidepressants that can be used for cataplexy. Amytriptilene is one that my doc says can be used for it because it is a tricyclic.

Angeline