Sleep Apnea, Narcolepsy and Surgery

[Carebear]

Good morning,
Back in 2010 I was diagnosed with Mixed sleep apnea, with 113 apneas (average an hour?) then a few months later after a daytime study diagnosed with narcolepsy. Because my SA is so high I was sent to a surgeon to have some problems in my airway adjusted in March of 2011. After Tonsils, Adenoids, Partial Glossectomy of the tongue, UP3, and Hyoid Myotomy and Suspension I was sent again for a sleep study a few months later only to find out that my apneas had not changed for the better at all. I went into the surgery knowing that I would still need my cpap for the rest of my life regardless of the outcome so that was not the reason that I went ahead with the operation. To make a long story short it was not easy at all to recover from. My doctor has suggested and accepted my decline of seeing a different doctor to be evaluated to have my jaw broken and realigned.

But anyway, I am so addicted to my "breathing machine" that my body/brain will not allow me to fall asleep without using it no matter how tortuously sleepy I get. Even after surgery in recovery I was begging for the machine to be brought in to me and thankfully I was allowed to use it even then, only with oxygen attached. No, I don't "love" what the mask does to my face, nor having to be attached to something at night, not being able to nap anywhere anytime without it, nor cleaning it, etc.....blah blah blah. BUT I am thankful to have it now that I know I wasn't breathing well at night. I thought I was the best sleeper in the world and maybe so....but not so good at breathing while I slept...
So, is anyone else feeling the "addiction?" Am I the only one with Narcolepsy and Sleep Apnea in the world? Does anyone else still struggle with tiredness and sleepiness even though they are 100% compliant and on meds to help the awakeness?

[MaxDarkside]

So, is anyone else feeling the "addiction?" Am I the only one with Narcolepsy and Sleep Apnea in the world? Does anyone else still struggle with tiredness and sleepiness even though they are 100% compliant and on meds to help the awakeness?

Heh... interesting questions considering this discussion, just now wrapping up I think...
viewtopic/t75110/Can-Narcolepsy-Cause-Sleep-Apnea-.html

No, you are not alone. I crave the mask I have not been diagnosed with narcolepsy and people here seem to think it's not likely I have it, but I am 100% compliant, AHI's of 1-2, clusters of apneas entering / leaving REM and have the daytime grog so bad I'm going back to my Neuro-sleep doc Tuesday.

[HPM]

Hi CareBear - I understand what you're saying. I can't sleep without the mask. I might doze off for a few seconds, but then wake up. I like the way you put it - "addicted". If the power goes out due to ice or lightening,etc.. I am miserable and need to invest in a battery of some kind.

[BlackSpinner]

Addicted? Only if you consider the rest of the human race "addicted" to O2 and sleep too. Are people in wheelchairs or on crutches addicted to them too?

No way I am sleeping without it and exposing my body to O2 shortage.

[SleepingUgly]

I have not been diagnosed with narcolepsy and people here seem to think it's not likely I have it...

We didn't say that! We said that the notion that narcolepsy causes OSA is unsupported by any information we're aware of! You VERY well may have both OSA and narcolepsy!

[MaxDarkside]

I have not been diagnosed with narcolepsy and people here seem to think it's not likely I have it...

We didn't say that! We said that the notion that narcolepsy causes OSA is unsupported by any information we're aware of! You VERY well may have both OSA and narcolepsy!

OK, no worries. Let me rephrase; " I have not been diagnosed with narcolepsy and based on the valued input of well informed people here, I believe it's not likely that I have it." (just the nearly overwhelming daytime grog and ...)
GRIN

[SleepingUgly]

I have not been diagnosed with narcolepsy and people here seem to think it's not likely I have it...

We didn't say that! We said that the notion that narcolepsy causes OSA is unsupported by any information we're aware of! You VERY well may have both OSA and narcolepsy!

OK, no worries. Let me rephrase; " I have not been diagnosed with narcolepsy and based on the valued input of well informed people here, I believe it's not likely that I have it." (just the nearly overwhelming daytime grog and ...)
GRIN

Wow. Assuming I'm one of the "well informed people here" (and I say that only because I think -SWS and I were the only ones to weigh in on that thread, and he's not "people"), and I guess I'm having a tough communicating that I think you may very well may have narcolepsy. (I'm not going to mention that I don't think narcolepsy causes OSA or that OSA causes narcolepsy, lest that confuse you.) You may very well have narcolepsy.

[peterg]

I have not been diagnosed with narcolepsy and people here seem to think it's not likely I have it...

We didn't say that! We said that the notion that narcolepsy causes OSA is unsupported by any information we're aware of! You VERY well may have both OSA and narcolepsy!

" (just the nearly overwhelming daytime grog and ...)
GRIN

I had an overwhelming amount of grog last night and slept (if you can call it that) without the mask for the first time in 6 months. with whatever apnea I was experiencing, plus this physical pain after a hard days shopping (diagnosis pending) it was my worst night sleep wise . then agian, grog wise, it was the best of times , it was the worst of times. off to nap now, been awake for a whole 4 hours.... WITH my mask on this time. as for narcolepsy, for home studies, one needs an eeg machine to get some data. if I had narcolepsy I wouldnt need the grog heh?

[rosacer]

Last week a friend of mine explained she has narcolepsy. What she told is really nasty. If she doesn't take a powerful medication each night at the same hour (10 pm and then 2 pm) she can fall asleep all the sudden anywhere.

She told she has sleep apnea too. She puts the mask on and then she takes the medication. This medication can produce heart attacks if taken in the whole dose that's why she needs to put an alarm clock to wake up each night after 4 hours and then take the second half of the medication. She have had 2 heart attack in the past due to that medication.

She used to fall asleep all the sudden at school, over the food, anywhere, etc etc. What I didn't really understood is, if the fact that the medication which induces a coma stage is the cause of the sleep apnea or the sleep apnea is simply another problem not related. I didn't ask which type of machine she uses, if she is on an induced coma I would expect something like a servo machine. I will ask her.

Any way it seems there are degrees of narcolepsy? because I had never heard of a person falling asleep like that, going into REM in a couple of minutes as she explained. I'm so happy she is able to live a good life now that the problem is under control.

[SleepingUgly]

Rosacer, I'd be willing to bet the medication your friend takes is Xyrem. I'd be very surprised if it's prescribed given that it can cause a heart attack. The reason it's taken every 4 hours is because the half-life is very short. It does not induce coma. It's known as "the date rape drug", and obviously can cause serious impairment, memory issues, etc., and must be taken in bed. I understand it can be a life saver for those with narcolepsy.

[rosacer]

Sleepingugly,

Thanks very much for the explanations. Yes maybe it's Xyrem becaue she told she need to dispose from the medication boxes in a special way not to attract the drug dealers from the area; I think she was kidding a bit.

To me that coma state sounded so hard to understand, she should feel really gone when she takes the medication. Whatever the reason of the heart attacks I hope it doesn't repeat because her Dr seem to think it is the medication, imagine if it's not the medication she could be at risk.

The date rape drug, what a name She said if there is a fire she would not wake up even with the fire alarm ringing. When I hear stories like that I find myself very fortunate to only have sleep apnea even if I need to mask each time I'm going to sleep.

OT: it would be nice to have a masked icon in the smilies