Confused & looking for some advice

[bmxtuffy]

Hi. I'm a 41 year old male. About 16 months ago (following a home sleep study) I was diagnosed with moderate OSA (15 events per hour) & I began to use a fisher & paykel respironics remstar Aflex. It was initially set on a auto pressure of 6-7 & wore a nasal pillow. Every time I would go to the CPAP outlet to check my data I was told that I was a model CPAP patient, with my AHI never exceeding 0.3. However since September of last year, I began to feel terrible during the day, not your average 'yawning tired', but a deathly unable to concentrate & constantly squinting type of tiredness. In January of this year, I began to have episodes of waking up gasping for breath, I went once again went to The CPAP outlet & was told that my results were still great. They suggested switching to a full face mask as I might be a 'mouth breather', so I did that to no avail.

In the end i decided to go to the Melbourne Sleep Clinic & have an overnight sleep study done in the hospital. My overnight study was conducted in March of this year & was a 'split' study. The results showed that my pressure level was too low & it should have been set at a fixed pressure of 10. Along with that, it indicated that I had 4 incidents of central apnea & that I had severe Restless leg syndrome/Periodic limb movement disorder (67 events per hour). My sleep doctor said that I might be getting the central apneas because of the Sifrol that I was taking & he put me on a course of Clonazepam. Following that, I became terrified of having CSA & began to prop myself up in bed & force myself to sleep on my side. Since I started doing that, the deathly tired feeling of being unable to concentrate etc stopped. I began using the dream mapper app & although my AHI was low (always around 0.3 - 0-5 & never above 1.5) it continued to show a few centrals. I decided to try switching back to the nasal pillow & see what would happen, the one time that I did that the dream mapper app indicated that I had had 25 central & 22 obstructive apneas with an AHI of 5.1. Yikes!

Following that (a few weeks ago) I decided to get a second opinion on what is happening to me, so I contacted a different respiratory physician & went to hospital for another overnight sleep study. This time the study was not split and done completely without a mask. The results of that one said that I had basically nothing. Zero episodes of OSA or CSA and only two recorded Hypopnea's (i still had severe restless legs / PLMD) As you can imagine, that left me more than a little confused. I was told to stop using CPAP & that the doctor will state his professional reputation on the fact that I don't have CSA. Since then I have continued to use my full face mask, & I still get the OSA's, CSA's & Hypopnea's showing up on my dream mapper app. I slept one night on my back (not propped up on my side) and the death like tiredness reappeared. So in a nutshell, I have no idea what to do or really what has happened to me. I'm considering a switch back to the nasal pillow again, to see how I go.

I know that this has been an incredibly long winded post, but I had a lot to get of my chest. Any advice or opinions on my situation would be greatly appreciated. All the best, Rob.

[m13l1n1]

Well. As soon as I saw the 6-7 setting I was surprised to see max at 7 and I thought it's a typo. I don't know if you have tried raising the max to 12 yet since doc said it's 10 after the sleepy test. Also do you feel your mouth dry every morning you woke up? That might indicate you are a mouth breather and nasal cpap won't help as pressure escaped from mouth. How do you feel waking up in the morning or do you wake up during the night? I always said good AHI just mean the machine is working. You can be awake and breathing constantly all night long and get a good AHI as there's no CA or OA.

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[Julie]

Back sleeping provokes many more apneas in most people, so even if you're getting some help from Cpap, it's better if at all possible to sleep on your sides, if necessary with pillows in behind to discourage flipping when asleep. And I definitely think your high setting should be much higher, even 15, because it's the low setting that determines how much therapy you get and you may just not be getting enough - you could try it at 8 or 9 and the high setting even at 15 (it blocks therapy if set too low). Sorry to say your doctor does not sound knowledgable (all too common occurrence) about the therapy, whatever he might know of the science) and you'd do well to talk to others if at all possible. A good friend was diagnosed at Monash and set up with good equipment there - don't remember the doctors' names, but also had PLMD. As you can tell I strongly recommend you stick with Apap as it can also do Cpap if eventually you're seen to do better on that (at a proven-in-time good setting), but Cpaps only do Cpap. And you should download free Sleepyhead software that most here use... post graphs etc. to Imgur.com and leave links to it in this thread.

[bmxtuffy]

Thanks so much for your advice, I'm booked in to see the specialist next week & I'll mention your suggestions. I guess my biggest question is how one overnight sleep study (split) showed that I had OSA, CSA & Hypopnea's & the other (no mask at all) suggested that I had nothing but a couple of Hypopnea's. How can that happen?

[Julie]

Wish I had an easy answer for that question, but without having been a fly on the wall.. or knowing anything about who tested you, if you'd had any meds prior to testing, alcohol, etc... but home studies are not as comprehensive as labs, don't cover as many possibilities, so... Suggest you do come back to this thread plse so we can follow and help as things go along.

[bmxtuffy]

Thanks so much for replying. My last two tests were done in a lab, which is why I'm so stumped. You couldn't get two more different sets of results. Anyway, thanks again, I'll be sure to keep you posted. All the best, Rob.

[Guest]

bmxtuffy it would be helpful to know what position you were in during each of your sleep tests in order to make any connection.
one thing does seem clear and that is the leg movements which need to be addressed.

I began to use a fisher & paykel respironics remstar Aflex. It was initially

set on a auto pressure of 6-7

& wore a nasal pillow.

there is no such cpap machine as you have blurred two diff. mfgs and one doesn't use Aflex.
set on a auto pressure of 6-7 may have been the starting pressure
fwiw an auto will have a low and a high pressure range not normally set so close together.

as mentioned consider getting sleepyhead free software
write down your cpap and mask mfg. & models so we can help you make sense of this
please understand that until you get your treatment effective that memory and discussion will be difficult and impaired
learn to write things down for that reason, you should get a notebook to write everything in for easy reference

[Jay Aitchsee]

BMXtuffy, I don't know if you have sleep apnea or not. I suppose the different results could have been from different sleeping positions in the two studies or the different combination of meds taken during one and not the other.

I can say, however, that 4 CA in a night is hardly anything to be concerned about, much less, terrified about, unless they lasted for considerably longer than 10 seconds and resulted in an Oxygern desaturation.

I suggest you continue your therapy. Get the software (SleepyHead) and learn to monitor the treatment yourself to ensure that it is being effectively applied. If your symptoms of tiredness, etc. persist after you know that any apnea is being treated, you will be able to rule out sleep apnea as a cause and look to other possible causes.

As far as leg movements, there are some who discount them completely as causal in tiredness and fatigue. I can tell you that I was diagnosed with severe PLMD and tried just about every commonly prescribed medication to treat them. Some did seem to quiet the movement some, but none made me feel better, and most made my sleep worse. I finally gave up trying to treat the condition directly and opted for strictly following the precepts of Good Sleep Hygiene which seemed to help far more than any medication I have tried. But I am a case of one and my results may not be typical.