apnea and narcolepsy

[jmbhvac]

Hello everyone. Maybe someone can help. Several years ago I was placed on a cpap after years of torture. I must say it helped for a while. Then my drs sugessted a rhinoplasty. I heard many horror stories but it helped quite a bit. Im not exact with the medical terms but my apnea cou t was I belive to be 97. My cpap was set at 16 cm. Since the surgery and another test it is still really high. I am just not getting the effect I used to. Someone told me to check for narcolepsy. Since I have been able to sleep on a fence post most ofmy life. Could I have both and my dr not have diagnosed it? Just want relief. A long night sleep still doent help the tiring days I have.

[Julie]

Hi - it's very possible that your equipment is not working for you, but without knowing what you use - full name & model #'s of machine and mask (and type of mask), it's hard to advise. Masks are by far the biggest issue with patients who haven't been fitted properly so let us know what's what and any other info (sleep habits, food, meds, hours, etc.) that you can and we'll do our best to help.

[kaiasgram]

Hello everyone. Maybe someone can help. Several years ago I was placed on a cpap after years of torture. I must say it helped for a while. Then my drs sugessted a rhinoplasty. I heard many horror stories but it helped quite a bit. Im not exact with the medical terms but my apnea cou t was I belive to be 97. My cpap was set at 16 cm. Since the surgery and another test it is still really high. I am just not getting the effect I used to. Someone told me to check for narcolepsy. Since I have been able to sleep on a fence post most ofmy life. Could I have both and my dr not have diagnosed it? Just want relief. A long night sleep still doent help the tiring days I have.

It is possible to have both sleep apnea and narcolepsy. It is also possible for a doctor to miss the narcolepsy diagnosis. But the question in my mind right now is what's going on with your cpap therapy? If your AHI is too high, then your extreme tiredness might be due to inadequate therapy with the machine. It would be a good idea to register and sign in with your equipment listed, like most of us have at the bottom of our posts. Exact make and model are important. We may be able to help you with your cpap pressure settings after we've seen some of the data from your machine -- I'm assuming that your machine records at least some data since you're referring to your current numbers (what you're calling apnea count).

When you say "I am just not getting the effect I used to," I think less about narcolepsy and more about your possibly needing a pressure adjustment on your machine, or possibly a different type of machine, because it sounds like your cpap therapy was working effectively at an earlier point in time.

[kteague]

It may be that upon further investigation that your data reveals your sleep apnea treatment is not optimized. If that turns out to be the case, the group here can be helpful with addressing that. The thing about assessing for narcolepsy is, unless there are frank undeniable signs beyond daytime sleepiness, it's hard to tell if something else is causing the sleepiness or if it is indeed narcolepsy. Any sleep disorders, such as sleep apnea and limb movements, just to name a couple, can cause daytime sleepiness. Some other things that can muddy the water with feeling bad are diabetes, thyroid dysfunction, anemia, and medication side effect. If you have ruled out everything that could be suspect for contributing to how you feel, and your sleep apnea treatment is confirmed therapeutic, your doctor can order an overnight test followed by a daytime nap test (MSLT) to look specifically for narcolepsy. There are times doctors will go ahead and order this test before ruling out other things, but except in special cases, that's probably not the most pragmatic move. Good luck in going forward.

[jmbhvac]

Thanks for the replies. Sorry I didnt get back sooner, I was out for a family emergency. I did forget to mention several things. I am diabetic type 2. The mask I wear is a Resmed nasal pillow. I forget the exact model, but have used several others over the years and it is the best ive tried this far. My cpap is a Resperonics RemstarPlus C-Flex. Thinking back maybe the auto setting was not set high enough? Is there a way to check the settings? I know it is supposed to be set by drs orders but maybe its wasnt set right by the company that i purchased it from.. Ive owned three other cpaps in the past and at first I thought the one I have now was ok
. Just not resting well for a while. Now my family has told me that they actually have heard me snore while using it. My latest sleep study was only about 8 months ago. I have had four over the years. As we know insurance hates to pay for new eqipment and drs. Hoping for a simple fix I guess. Thank you for any advise and input. God Bless.

[Pugsy]

My cpap is a Resperonics RemstarPlus C-Flex

If this is the model machine you have then it will offer zero data that might explain why you aren't feeling so great.
All it records is how many hours you use the machine each night.
It doesn't have an auto function either..so not sure where you came up with the auto comment maybe not working right unless you were referring to the auto on feature that just turns the machine on when it senses your breathing.

[Julie]

You can, however, find the clinician's manual for your machine at Apneaboard.com - you need to hunt around on the site a bit to find those at the bottom of one of the pgs - and change your settings - all by yourself, as the rest of us have been doing for years. It's your therapy and your machine and don't let anyone tell you otherwise.

[yossuiusa]

I recommed operaion to open your throught . even if 16cm is not efective,cpap is not good for u.

[ironhands]

There's a lot of misconceptions out there about what narcolepsy is. It's not just being able to fall asleep anywhere, with little to no warning. One of the major symptoms of narcolepsy is cataplexy (present in about 70-80% of cases). It is described as a sudden loss of muscle tone during sudden emotional shifts. Basically, do you go limp when you're surprised, laugh, scared, etc? If not, I'd say the likelihood of narcolepsy is quite low, considering your extremely high apnea scoring (but it's possible). A 97? Wow. Anything over 30 is considered severe. I would be pretty certain that it's just a case of ineffective treatment. You may need a pressure adjustment or a new mask, I'd recommend a visit to your DME to check your logs, or do another titration study because something doesn't sound right.

[kteague]

As has been stated, the machine you listed does not report treatment data, just usage. While getting another machine would be ideal, if that's not something that can happen at the moment, maybe your doctor will order a temporary loaner of an autopap that can collect detailed data and determine an effective fixed pressure for your machine. I had one on loan for 2 weeks but they added a week due to poor sleep during the test period. That should be able to be arranged quickly and get you on the road to getting answers. If they do order a loaner, you might want to ask if the starting pressure in the range could be up close to what you are now using.

[jencat824]

Thanks for the replies. Sorry I didnt get back sooner, I was out for a family emergency. I did forget to mention several things. I am diabetic type 2. The mask I wear is a Resmed nasal pillow. I forget the exact model, but have used several others over the years and it is the best ive tried this far. My cpap is a Resperonics RemstarPlus C-Flex. Thinking back maybe the auto setting was not set high enough? Is there a way to check the settings? I know it is supposed to be set by drs orders but maybe its wasnt set right by the company that i purchased it from.. Ive owned three other cpaps in the past and at first I thought the one I have now was ok
. Just not resting well for a while. Now my family has told me that they actually have heard me snore while using it. My latest sleep study was only about 8 months ago. I have had four over the years. As we know insurance hates to pay for new eqipment and drs. Hoping for a simple fix I guess. Thank you for any advise and input. God Bless.

One thing you mentioned may be contributing to poor therapy - you have been heard snoring and are wearing a nasal pillow mask. Do you wear a chinstrap? If not, or sometimes even with one, your therapy may be escaping thru your mouth. That might explain how you feel.

Since you had a sleep study 8 mos ago, did you get a new machine then? If not, time for a new machine, data capable, so you can participate in fine tuning your therapy for you.

[ironhands]

As we know insurance hates to pay for new eqipment and drs.

A lot cheaper for them to drop the $ on a new machine and titration study than have to foot the bill for an extended stay/recovery after a heart attack or stroke. With an AHI that high, it's a serious risk.