Janet,

I am glad you finally have some good direction.  Keep posting your husband's progress.

As for your friend, an AHI of 97 is high (severe is >30 AHI), but quite common around here.  Mine is 114 and yes, they can completely stop the apneas.  She needs a new doc (maybe your husband's), if they are telling her they can't.  You can find an ABSM accredited sleep disorders specialist near you in the FAQ section which is linked in Linda's signature or in the top posts of the Sleep Apnea Help section.

There are two main types of limb movement.  That due to the effort to breath, which gets less with effective CPAP use because the suffocation is gone, and true RLS/PLMD which is a neurological disorder and usually gets worse when the body is at rest.  Which is causing the movement is usually clear during a sleep study when a CPAP is effectively in use.  Periodic Limb Movement Disorder is the sleeping cousin to Restless Legs Syndrome.  I have RLS/PLMD.  The main drugs for RLS/PLMD are Mirapex and Requip which are very low dose Parkinson's drugs.  They do not deaden reflexes.  PLMD movement is more spontaneous twitching.

You seems to be aware of the effects of untreated apnea, a short list is; increased risk of heart attack and stroke, increased blood pressure, heart arythmias, headaches, depression, weight gain, there is a link to diabetes, nocturia, memory and concentration problems (which would have much greater effect on ice hockey than Requip), etc.  So you are right to be concerned.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

My husband still had a lot of leg movements in his study with the CPAP, which is part of why the Director is reviewing it.  They noted these are the reason why he didn't get into a deep sleep much, so I had questioned if the mask would really solve our problems or not.  I didn't want us to go through a ton of masks and have him more tired, when we aren't solving the WHOLE problem.  My husband was uncomfortable with the mask (which was the full nose kind) because he couldn't sleep on his side at all without air blowing out of the mask edges.  He doesn't have restless leg syndrome per the tests but does have periodic leg movements.  He may have moved more because he was uncomfortable on his back, but we won't know for sure.  

My girlfriend is getting a Optilife mask which has the nasal pillow thing.  It looks to be WAY better than what my husband tried.  We are also setting up an appointment with an Ear Nose and Throat doc to see what else is going on with his nose.  (He has to mouth breathe at all times.)  He had a sinus infection back in February which I think changed something in there because everything has been a lot worse since then with the snoring and all.  

Vicki, when you went back for your second sleep study, you went from 114 to 0?  That is truly amazing!!  (P.S. I didn't like my husband's doc and don't want to go back since I feel like he acted like my questions weren't important and he definitely barely reviewed the data.)  I will look for a ABSM accredited sleep disorders specialist, but this isn't exactly a booming town full of highly qualified docs....

Janet,

RLS is the awake version of PLMD.  PLMD is what it is called when it occurs during sleep.  PLMD and RLS are both neurological and treated the same way.  In case I wasn’t clear, when I said that PLMD is more twitchy, I meant more twitchy that thrashing because you are trying to breath.

I've been a treated patient since 1999.  I have sleep studies about every 16 months.  My doc. insists on it and I have found I always need my treatment tweaked (usually a higher pressure).  Optimum pressure is that which eliminates 95% of the apneas, so no one usually has an AHI of 0, even “normalâ€� people.  Normal is considered an AHI < 5.

If it is higher than that in a treated patient, then something is wrong.

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I'm still waiting for the Director of the Sleep Center to get back to me with her review of sleep study.  We got the CPAP machine and Optilife mask on Friday and my husband used it this weekend.  He states that he slept okay with it.  Question:  He says that his one nostril is so stuffed up that the air isn't getting through it.  He has been doing the saline before bed.  My girlfriend said to buy an antihistimine and squirt it before you use the machine?  Has this happened to any of you and what did you do?   He doesn't feel any different.  Since the titration sleep study was (in my opinion) a disaster, I asked the doc at our appointment how we would know this was working, and he just said "you'll know."  How long was it until "you knew"?

Janet, you might want to check out the Breathe Right Nasal Strips for your husband.  I have a deviated septum and my left nostril is almost closed.  I wear the Nasal Strips at night with my Optilife mask, and it works much better.


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~*~*~ Lisa ~*~*~

Dx: Severe OSA 6/21/07 (AHI - 33, 85% O2)
Tx: Started CPAP 7/11/07 - Initial pressure 10, ComfortGel mask (hated it), switched to Optilife mask (love it!)

~Sleep is a symptom of caffeine deprivation.~

Thanks for your reply.  We had tried the strips prior to CPAP and they didn't seem to do anything.  I guess trying them with the CPAP can't hurt.  

Question for everyone:  I just remembered that my husband mentioned something about thyroid levels being close to the upper limit after his last regular doctor visit.  Is there a correlation between thyroid and apnea?????

Janet,

He will never see any positive effects of his CPAP if he can not use it.  Don't use topical antihistamines like Afrin every night, they have a rebound effect and will make things worse.  Does your husband have allergies?  Does he have congestion on a regular basis?  If so, we will address that separately.  Is he just squirting a little saline up his nose or is he irrigating his sinuses?  (see section on sinus irrigation how-to in "Sleep Apnea Help" section).  Is he using a humidifier?  If he isn’t using a humidifier then that could easily be what he needs.  Maybe he needs a nasal mask rather than nasal pillows.  I have allergies and a sensitive nose and my nose can't tolerate nasal pillows.

Remember that it has taken weeks, months or even years to get to the unhealthy state he is in.  Many people feel better after their first night of not being suffocated, but it takes just as many days to weeks to notice the subtle improvements.  And improvements can not occur of a CPAP is not being used consistently, all the time and anytime he sleeps., NAP with his PAP

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

My husband is using the CPAP every night and is sleeping fine with it, so I guess I'm waiting for when "we'll know" which was the doctors response to my question on since the CPAP sleep study wasn't good at all, how will we know if this is working.  I'll check out the section on nasal irrigation.  We don't know if he has allergies.  Yes, he's using the humidifier.  My husband didn't sleep well at all with the mask because he sleeps on his side and when you move the air escapes out the side of the mask.  You may disagree with me, but he felt like he had to sleep on his back and was terribly uncomfortable in this position.  I know everyone is different.

I do not disagree with you at all, your husband should sleep in the position he is most comfortable in and he should adjust his mask in that position.  We are not required to sleep on our backs.  If his mask still leaks when he adjusts it while in a comfortable position, then he should keep looking until he finds a mask that doesn't leak on his face.

It took several masks for me to find one that works and I have a feeling most people are that way.  If he has a good DME (Durable Medical Equipment) supplier, the people who gave him his CPAP, then they might have different masks for him to try on and see if they leak.  They would also be there to help him adjust the mask.  Once again, it should always be adjusted in the position he is most comfortable in.  If he can't get his DME to let him try different masks, then he may have to spend some money and buy one or two online to try.  This initial investment will be very worth it.

I misunderstood.  You said that "one nostril is so stuffed up that the air isn't getting through it".  That usually means you are not able to successfully use a mask.  But that is great if he is sleeping fine with it.  Some people (like me) can't tolerate nasal pillows though and do better with a mask.

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

He's sleeping fine with it, but I don't know if he's getting any more air with it than without it.

Janet K, if he is sleeping fine w/CPAP and mask, then he is getting more air w/them than w/o.  The "you will know" amounts to when he starts waking up feeling more rested than he did before CPAP and he'll know when its really been successful when we wakes up feelingl refreshed and ready to tackle the day. My first 30 days on CPAP were WORSE than before CPAP. For some of us it takes awhile to find the right mask, right pressure, etc.

For some mask tips see "My mother is going for her 2nd sleep test tonight". They aren't the be all and end all but they are things I learned from my sleep lab manager and my own experience that helped me.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

He was sleeping fine before the study and continues to sleep fine.  He feels like he has to try harder to breathe in and out and that his heart is pounding with the mask, so we're definitely not there.

Have you contacted your doctor about this. Your husband may well need a pressure adjustment, perhaps a change to a bi-level machine, maybe just a change to a CPAP w/EPR or C-Flex, or the new Respironics M Series AutoPap w/A-Flex. The difficulties inhaling and exhaling plus rapid heartbeat merit discussing the problem w/your doctor ASAP before your hubby decides to just throw in the towel instead! Good luck!


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

I agree.  What's EPR and C-Flex?  I haven't heard of them.

P.S. I absolutely LOVED your slinky quote.  I almost spit coffee all over my cubicle wall when I read it.  Too funny!!

EPR is Resmed's term for expiration pressure relief.
C-Flex is Respironics version of similar but not quite the same relief during expiration.

EPR and C-Flex are only available in straight CPAP or CPAP mode on autos. Respironics has recently come out w/a new M Series Auto w/A-Flex. The A-Flex indicates that the expiration relief is also available in auto mode.

There is a good explanation of the differences between EPR, C-Flex and Bi-level (Bi-PAP) at cpap dot com.

Oh yeah, I was in "just" the right mood when I first saw that Slinky quote. I absolutley could NOT resist purloining it for my sig. Unfortunately, it was an anonymous quote so I can't even give credit for the genius who came up w/it.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.