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just diagnosed
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tracey Offline

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Post: #1
just diagnosed
Hello there,
I have just been diagnosed with sleep apnea.
My results put me in the moderate category - 21 interruptions per hour.
My results showed 50/50 obstructive and central nervous system obstructions.
I was wondering is this 'mix' fairly common and could the recorded obstructive obstructions be down to central nervous system dysfunction?
The reason I'm asking is because I have other health problems -including severe ME and balance problems - that prevent from maintaining an upright position. I'm a little worried now that I have some kind of underlying cardiovascular problem causing the apnea?
The sleep therapist was not totally convinced that CPAP therapy would help alleviate my daytime sleepiness because of the ME/CFS and has left the decision up to me. My sleep is very disturbed anyway because of TMJ (I wear a night brace on my teeth) and fibromyalgia pain.
She thought wearing the mask might add further stress to my nights. - I have none of the usual risk factors associated with obstructive sleep apnea so she didn't think not having treatment would significantly impact on my health.

Any feedback would be appreciated.
Thankyou
07-15-2016 05:12 AM
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DeepBreathing Offline
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Post: #2
RE: just diagnosed
Hi Tracey, welcome to Apnea Board.

I have a similar mix of issues - 50/50 obstructive / central apnea, and fibromyalgia (along with a whole bunch of other stuff I won't bore you with Wink ). I don't think the obstructive apnea is caused by the central nervous system - it's basically mechanical in nature. However it could be related to a general loss of muscle tone which happens with conditions like ME / fibro. I understand where your doctor is coming from, but my (admittedly unqualified) view is that the fatigue and other conditions associated with apnea are unnecessary complications on top of your other conditions. By treating the apnea you are likely to get better sleep (once accustomed to the machine) and you will likely have improved outcomes in regard to heart condition (eg arrhythmia), blood pressure and predisposition to diabetes.

One significant point is that an ordinary cpap machine won't treat idiopathic central apnea - you need an ASV (adaptive servo-ventilator). These are much more costly than an ordinary cpap and your NHS / insurance may raise all sorts of hurdles before funding one.

I have found that use of an ASV is a definite positive. I used to have terrible insomnia associated with the fibromyalgia - that is totally gone. My daytime fatigue is much reduced, and I no longer have microsleeps (and sometime not micro) behind the wheel. It's hard to give advice because of the complexity of your case, but I would be inclined to give the ASV a go if you can. It will take a bit of getting used to, but I think you might find the benefits outweigh the difficulties. I don't think you'd get a lot of benefit from an ordinary cpap, and they can actually make central apnea worse under certain circumstances.

DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-15-2016 07:08 AM
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trish6hundred Offline

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Post: #3
RE: just diagnosed
Hi tracey,
WELCOME! to the forum.!
I wish you good luck as you start your CPAP journey.

trish6hundred
07-15-2016 01:11 PM
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tracey Offline

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Post: #4
RE: just diagnosed
Thanks for the replies - I'm in the UK and I think I will have to go through process of trying cpap machine first - but they do a follow up assessment so I guess if its not working there will be other options.Smile
07-15-2016 02:01 PM
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OpalRose Offline

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Post: #5
RE: just diagnosed
Welcome to Apnea Board tracey!
Keep us posted with your therapy. Smile

OpalRose
07-15-2016 02:25 PM
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PoolQ Offline

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Post: #6
RE: just diagnosed
Just a thought, but with your other complications you might be able to get them to just go right to the ASV machine, it is the gold standard for dealing with mixed apneas like you have
07-15-2016 07:11 PM
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tracey Offline

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Post: #7
RE: just diagnosed
(07-15-2016 07:11 PM)PoolQ Wrote:  Just a thought, but with your other complications you might be able to get them to just go right to the ASV machine, it is the gold standard for dealing with mixed apneas like you have

Hi there - I'm feeling confused after talking to the sleep therapist today
over the phone.

I asked for the exact breakdown of episodes (127 episodes, over about six hour period - 59 Central/67 obstructive). Mostly happening when I'm lying on my back (I sleep mainly on my side).

The therapist thought I could basically deal with the problem simply by sleeping on my side - she didn't seem concerned by the Central apnea.

My understanding is that central events dissipate when using the CPAP machine and it's only if the central events remain or increase that there is a problem with complex sleep apnea syndrome that might warrant trying a ASV device.

Have I understood properly thus far? It feels without trying the CPAP I won't know if there's an underlying problem with central apnea?

My doctor has referred me to a cardiologist because I have many near syncope events during the day and wake feeling very unwell (dizzy/nauseous).

I don't know if I'm trying to forge too many links - has anyone any experience of these problems?

thanks.
(This post was last modified: 07-19-2016 08:57 AM by tracey.)
07-19-2016 08:54 AM
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DeepBreathing Offline
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Location: Perth, Western Australia

Post: #8
RE: just diagnosed
With the greatest of respect to your sleep therapist, I think she may be too quick to dismiss the significance of those central apneas. By definition an apnea is a cessation of breathing for 10 seconds or more - not something you can safely ignore. You are experiencing about 20 such cessations an hour and half of them are centrals. 5 - 15 events per hour is defined as "mild" apnea and 15 - 30 is "moderate". You're squarely in the middle of the moderate band. Given your other health complications I think it would be prudent to try and eliminate all those apneas.

While centrals can sometimes resolve with the use of an ordinary cpap, this is not the normal situation, as far as I am aware. In fact, it can make central apnea worse in susceptible patients. Further there is not a lot of evidence that sleeping your side can reduce the occurrence of central apnea (I've only been able to find one study with that conclusion). Sleeping on your side can certainly help obstructive apneas in many patients.

It may be that "the system" requires you to try cpap first before graduating to ASV. If that's the case, give it a go. But stack the odds in your favour by insisting on a fully data-capable auto-titrating machine such as the Resmed Airsense Autoset (or "Autosense for her") or a Philips Respironics Dreamstation Auto. I always suggest these brands as they have the biggest share of the market and there is a lot more support for them. In any case, I really do think you should try the therapy and see if it helps improve your other symptoms as well.

DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-19-2016 09:31 AM
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richb Offline

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Post: #9
RE: just diagnosed
Hi tracey. Welcome to the Apnea Board. DeepBreathing has pretty well summarised the mixed apnea situation for you. I also agree that you should pursue treatment of your mixed/complex apnea. It will take some time to get an ASV machine if your Doctor needs to rule out traditional CPAP therapy as being effective. Maybe you could ask for a titration on an ASV machine that starts out with CPAP and then is switched to ASV to find the optimal therapy for you. As DeepBreathing suggested it might eliminate a step in the usual course in dealing with insurance. Stay in touch. We can offer lots of help along the way to successful treatment. And, if ASV therapy doesn't work at least you will know.

Rich

Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here: http://www.apneaboard.com/wiki/index.php...SleepyHead
07-19-2016 10:53 AM
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cate1898 Offline

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Post: #10
RE: just diagnosed
Welcome to the forum tracey! I hope you get this all sorted out in a timely fashion for your health's sake! Do keep us updated!

APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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07-19-2016 01:53 PM
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