Me again. Just got my results, can you believe it?

SleeplessinCLE · Post by **SleeplessinCLE** » Wed Dec 19, 2007 11:05 am

OK. It's me again. I gave up on this CPAP thing a while ago, but I just got back from my rhuematologist (who sent me for the study in the first place) and he happily gave me my study results. First time I'm seeing them. He said he couldn't really help me with this as it's not his area.
What does this all mean?

Total study time: 418.5 mins. Total sleep time: 330.5 mins. Sleep efficiency fair at 79%. Sleep architecture: abnormal. Sleep onset delayed: 39 mins. REM onset delayed: 164 mins. 3 episodes of REM lasting: 38.5 mins. Acheived stage 3 delta sleep lasting 19 mins. 78 arousals: 42 occurred spontaneously, 35 due to repritory events, 1 due to leg movement

Baseline oxygen saturation: 95%
During study there were 109 hypopneas: 1 central, 4 mixed, 18 obstructive.
Mean duration of hypopneas: 23.1 secs.
Mean duration of mixed apneas: 18.8
Mean duration of obstructive apneas: 16.1
Total respirtory index was elevated at 24 events/hr.
During REM the RDI was 67 events/hr.
The apnea/hypopnea index was 24 events/hr.
Nothing significant with heart rhythm. No significant leg movements

My biggest problem with the mask and machine was that I could not exhale against it. (That and how it looks...)

Rhumy doc suggests taking this study to another doc, since the first one never even spoke to me - even by phone. He may not exist, as I have no proof that he does.

Anyway - Can someone please tell me what this all means? Thanks so much.

DreamStalker · Post by **DreamStalker** » Wed Dec 19, 2007 11:18 am

Well it means that you have moderate sleep apnea ... not severe and not mild.

It means you would do well to get over "how it looks" and give yourself more time to get used to "exhaling" against it -- or get used to looking like a heart attack/stroke victim and get over inhaling and exhaling like one if indeed you survive to inhale and exhale.

It means you may need to educate yourself on the co-morbidities of your condition in order to encourage you to change your attitude about treating your condition.

Best-o-luck!

Goofproof · Post by **Goofproof** » Wed Dec 19, 2007 11:34 am

Make sure they don't put Cause of Death on your Death Certificate, Vanity.

You have a chance to make XPAP treatment work for you before major damage is done, if you tale a active effort in your treatment.

Get a APAP, and the software to monitor your treatment. Exhale relief is important. A well fitting FF Mask or a Nasal mask with taping to insure against mouthbreathing.

Sucessful treatment, makes for a better life. Jim

SleeplessinCLE · Post by **SleeplessinCLE** » Wed Dec 19, 2007 11:35 am

OK. Well, thank you for your kind and generous response, Dreamstalker.

I wish you and yours a great Holiday season and wonderful New Year! Cheers!

SleeplessinCLE · Post by **SleeplessinCLE** » Wed Dec 19, 2007 11:38 am

APAP is the machine that gives relief upon exhaling, right?
I am going to make an appointment with one of the other docs that my Rhuemy suggested. He was disappointed that he'd sent me to someone as disinterested as the first one.
He also said that Rhuemy's in general are finding that more and more of their patients with RA or Fibromyalgia also have apnea. Right now he said it's nothing more than a noteworthy coincidence, but they're looking for the correlation. I thought that was interesting.

Goofproof · Post by **Goofproof** » Wed Dec 19, 2007 12:18 pm

APAP, not only gives you exhale relief, if set correctly it treats you at the lowest pressure you need, through the night. That makes treatment go easier. Less pressure the less leaks are, and the easier it is to breath against. Jim

SleeplessinCLE · Post by **SleeplessinCLE** » Wed Dec 19, 2007 12:26 pm

Thank you Jim. I'll make myself a note to ask for the APAP type of machine. The first time, I had no idea what was going on and no one really talked to me about options or choices in masks. And of course, I didn't know enough to ask any questions, so I just took what they gave me and when I called them for help, well they didn't call back. I think I just got a horrible sleep doc the first time.
I did make some changes in my sleeping habits and have felt better, but I think I'd better have another study done after the first of the year. I think my insurance will pay for another one then.

Thanks again.

ozij · Post by **ozij** » Wed Dec 19, 2007 12:42 pm

Did they ever do a study on you with a mask and cpap? That's called a titration study, and they try to figure out the right pressure for you.

What you posted are probably the pre -titration results.

There are some conditions where a self adjusting machine does not give you the necessary exhale relief - and people are switched to a machine that supplies different pressure levels: higher for inhale, lower for exhale. That's called a bi-level or bi-pap. And the are also bi-paps with auto adjustment.

What machine do you have now? What pressure is it set to?

O.

DreamStalker · Post by **DreamStalker** » Wed Dec 19, 2007 1:09 pm

SleeplessinCLE wrote:OK. Well, thank you for your kind and generous response, Dreamstalker.

I wish you and yours a great Holiday season and wonderful New Year! Cheers!

Sorry if my initial response came out somewhat gruf. The reality is that you need to get yourself over the first hurdle ... which is educating yourself regarding your condition and what the consequences of not taking a proactive attitude towards treatment are. You have made the initial effort by searching out and finding and registering at this forum. However the attitude in your initial post remains wanting and in need of encouragement.

I would suggest you Google more information on sleep apnea and learn why it is in your best interest to treat your condition. From there you can progress to understand how to treat your condition (something the members of this forum excel at).

Your baseline O2 saturation does not appear to be all that severe but you must remember that it was a one-night stand at the sleep lab and it may not be a true representation of your actual case. Low O2 saturation levels (< 90%) can corrlate to fibromyalgia-like symptoms.

So, you could see another doc and get lucky to find one that has an interest in your health as opposed to your money ... or you can take an active approach and start researching how apnea affects your health. It does take time and effort to get over the learning curve ... but that is the case for most everything you consider important in life isn't it?

You can get started by reading the topics linked to the yellow light bulb (Our Collective Wisdom) at the top of the forum page ... then there are the numerous posts on this forum which you can search. Some find it easier to search the posts by using Google Search engine :

type - your topic : cpaptalk.com

Again, good luck and you too have a nice Hoilday

krousseau · Post by **krousseau** » Wed Dec 19, 2007 2:18 pm

My biggest problem with the mask and machine was that I could not exhale against it. (That and how it looks...)

Just about everyone here looks "that way" for a significant part of out lives now. That was an insult to people who decided it was more important to get treatment than look good while sleeping.

Since you came back I'm assuming you are considering taking this seriously. Fom your posts so far-basic education is #1-do what Dreamstalker suggested and you can have a better idea what it is all about with an evening of reading.

It sounds as if you may have given up before you even tried CPAP. Did you go back for titration? Did you ever get a CPAP and use it at home? Sleep apnea is a pgrogressive condition with many long term complications. Sleep apnea can affect mood and mental functioning. Your rheumatologist picked up on it early. You have a good chance to improve your prognosis. You may feel it is just one more thing to deal with (rheumatology problems are also long term and no fun). On the other hand dealing with sleep apnea could make your rheumatologic problems improve.

Education & decide if you want treatment. If you decide on treatment come back for some more about getting on track.

Sleepy Dog Lover · Post by **Sleepy Dog Lover** » Wed Dec 19, 2007 11:28 pm

How long ago was your original sleep study and what machine were you originally given? What mask did they give you to use? They make xpaps now that have exhalation relief built into them, and the amount of relief is adjustable by the user. If you get a Resmed machine, you want to make sure it has EPR , that is Resmed's version of exhalation relief. If you get a Respironics machine, you want to make sure it has c-flex or a-flex with it. Currently, Resmed and Respironics are the only brands that have exhalation relief, and not all models have it. I can't tell you which version of exhalation relief works better, I have a Respironics apap with c-flex and it works well for me.

As for the mask, find a good DME that will let you try on a large variety of masks at pressure. The mask is a very individual decision, and depending on your comfort level with certain masks, the shape of your face, etc, it is impossible to tell you what mask would work the best for you. I love my Aura Headrest, but some people can't stand it.

Hope this helps, as others have suggested, you should click on the yellow lightbulb and check out "our collective wisdom". Then come back and ask questions. There are many people who will help you the best that they can. Most people here also don't care about how a life-saving treatment looks, it is saving our lives. As for others seeing it, from what I have seen, they would prefer looking at the mask than listening to you saw logs all night.

Have a nice holiday, and check prices before you buy from a DME. CPAP.com can beat almost any price that a brick and morter DME will give you. The B&M DME's also want to give you the cheapest, stripped down xpap possible, and try to make you pay extra for anything more than the basic unit. I would say that if a DME spends time with you and lets you try on a variety of masks, I would buy at least my first mask from them. The ability to do that is usually worth the marked-up price.

Hope all this helps.

SleeplessinCLE · Post by **SleeplessinCLE** » Thu Dec 20, 2007 7:10 am

The first machine was a stripped down model. I think I had one of the F&P masks. The pressure ramped from 4.5 up to 10.
I fell asleep with the mask on after a few nights, but awoke not being able to exhale. It panicked me. I reset the ramp up, fell asleep again, and again, awoke. When I called to ask about lowering the pressure for a while, I was told I'd have to wait until they could ask the doctor about changing the "prescription" and their clinician could call me back. That never did happen. I learned how to get into the set up and changed the settings. I wanted to set the top end pressure to something much lower, but I couldn't get this machine to go lower than 10. Maybe I messed it up, I don't know. After about 10 days of my not sleeping more than a couple of hours a night and my SO complaining about my thrashing and moving and the noise, I brought the whole thing back. I concluded it wasn't doing either of us much good.

Each time I called the doc's office for help, all I could get was a receptionist type person who kept referring me the clinician who never calls. I wasn't offered nor even given an appointment with the "sleep doc". I never saw him nor spoke with him. For all I know, he doesn't even really exist.

This experience cost me about $600 out of pocket. Plus, a lot of wear and tear on myself. I will research the 2 docs that I got yesterday before going to either. I'm more than a little skittish after that experience.

Thanks for all the info.

ozij · Post by **ozij** » Thu Dec 20, 2007 7:50 am

krousseau wrote:
My biggest problem with the mask and machine was that I could not exhale against it. (That and how it looks...)
Just about everyone here looks "that way" for a significant part of out lives now. That was an insult to people who decided it was more important to get treatment than look good while sleeping.

I'm sure it was not meant as an insult - and I would hate it for pepople to feel they can't say the real reasons they avoided cpap. People may find the hospital look terrifying in the beginning - that' OK.

SleeplessinCLE, you're welcome here - and I'm pretty sure both DreamStalker an krousseau feel the same. If they sound harsh, it's because they know how many bad things can come as a results of untreated sleep apnea, and what a great help cpap can be.

In addition to causing us major bodily harm, untreated sleep apnea can make us feel horrible, and have can have unpleasant effects on our family life - cuddling together if you can is much more fun thas sleeping alone because you - or your SO snore(s) so badly.

That said, I think that if I were given a choice of treatable chronic conditions to suffer from, Sleep Apnea would rank pretty high in my list. This is the condition which you get to treat while you're asleep, and you get to sleep well when treating it. Not a bad deal.

Keep us posted, and let us know how things turn out with your other docs.

Good luck
O.

krousseau · Post by **krousseau** » Thu Dec 20, 2007 10:24 am

Absolutely ozij, this is a great forum-an excellent place to learn and get help.

My comment was intended be matter of fact without being harsh. It was intended to increase awareness of why sleepless in CLE might get less than an enthusiastic welcome.

So Sleepless--welcome, Untreated sleep disorders have serious long term consequences--and they can be well managed by appropriate treatment. Knowing some basics about terminology and the treatment options will make it easier to get specific info for yourself. Getting some idea of treatment options means you won't accept the first PAP machine someone foists off on you. Don't take the first suggestion and run with it-look at all the options-there might be something better. And don't let a doc who won't answer your phone calls discourage you--keep calling. Sounds like you got a batch of lemons the first time around--and on your part it gave you an easy out. You can get good support here and hope you can find a good doctor.

It sounds like you are starting from scratch equipment wise. Are you going to be paying out of pocket and if yes is that a problem? Do you need to find out if there is some financial assistance in your community?

countrygent · Post by **countrygent** » Fri Dec 21, 2007 10:37 am

Right on advice from. You aren't whining. It isn't easy for lots of people. I hate it too.

I am three weeks in as a newbie, in abject misery - yesterday a new low, spontanious tears at work. It is the dead-empty tank exhaustion caused by unfamiliarity with the mask, hose and air waking me, or some kind of continuing sleep disturbances, plus the long long period of undiagnosed apnea started me off in a bad way out of the gate. Plus my HI number remains stubbornly in the 20 range. My head is a little clearer though, the inflammatory pain down, and if I had to self-diagnosis I'd guess my oxygen levels are way better without the apneas as those have been cut way down. So I've attacked the worst part - the danger to my oxygen-deprived body, but need to work on the more subtle sleep stage and good sleep part.

You must stick with it if you have moderate or higher apnea numbers.

Two weeks ago I got news my life insurer was declining my application to rewrite a policy on account of the apnea. That caused me to study up on the long term effects of untreated apnea. I discovered they range from all the minor loss of enjoyment of life symptoms to death.

Was back at the DME to go off the auto study and onto straight CPAP and we had a discussion about compliance and non-compliance. His point of view was that people who can tolerate OSA without heavy negative symptoms are unlucky - they lack motivation to stick with the therapy because they feel OK.

Mortality in the fourth decade on is significantly increased by untreated OSA - heart attack and stroke. The lesser known effect of the constant overnight oxygen deprivation is more sinister - advancement of geriatric senility - in other words failure to attend to OSA as soon as it is diagnosed can advance the onset of dementia and alzheimer-like symptoms later in life. And OSA takes lives and maims through the more obvious outfall of fatigue - auto and industrial accidents. I have been told that household insurers will now decline property coverage for OSA occupants who are non-compliant as they are more likely to burn, flood or otherwise cause property damage or injury. The reduction in recuperative mechanisms and healing of the body makes OSA a contributor to the onset and progress of numerous other conditions where a stronger and better rested body could marshall a stronger recuperative or anti-infection response. Little research has been done to date but in everything from emotional disturbance, inflamation and infection, cardio-pulmonary and brain fuction, OSA appears to have an effect. It stands to reason as breathing is one of the foundations of life itself. Breathe poorly - live poorly. Imagine if you couldn't eat or digest food. The oxygen/co2 system is as much about providing the body with energy and nutrition as the digestive system.

For me, OSA was also robbing me of career success. I've said this before, I guess because it is on my mind these days, it has cost me a fortune and that in the end means years of early retirement up in smoke.

So be motivated to tough it out, it is a sinister and dangerous condition that demands a determined response.

Because the medical establishment didn't have a very satisfactory response prior to the '80's, and awareness has been growing since, there still isn't a huge amount of firm research or statistical study. It will come. You don't want to open the newspaper in 20 years and find out you have done serious irrepairable harm to yourself by not treating something as obviously wrong as being repeated suffocated while sleeping.

Those of us that feel the OSA in immediate negative ways are fortunate to have motivation. Pity the people who can tolerate OSA better than CPAP.
They are being murdered very very slowly.