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Diagnosed with Central Sleep Apnea - apneabloke - 07-14-2018
Hi all
In December last year after realising that waking up tired every day and waking up anywhere from 3-7x a night every night for probably 8-10 years wasn't normal, I got referred for a sleep study.
I had a home sleep study that diagnosed Central Sleep Apnea with average AHI of 35+/hour. After trying an auto adjusting CPAP machine for a couple of nights and literally being woken up every 2 mins, the specialist referred me for an in hospital study. The hospital study concluded the same results as the home study.
My questions and issues are as follows:
1) I've had at least 4 appointments with the specialist since December that last about 5 mins where there's no discussion around investigating possible causes of the central sleep apnea, with the exception of having had an MRI to ensure I didn't have a brain tumour, which thankfully I didn't. Quick research shows there are multiple causes for central sleep apnea. Is it common not to just focus on treatment of CSA without investigating the possible root cause of it?
2) With the new machine I've been trialling the past week, it is set to fixed pressure, which starts at 4cm/hour and over 30 mins ramps up to 8cm/hr based on hospital recommendations, I do eventually get off to sleep, but only last about 2-3 hours at the most then wake up and my nose is sore and my heart is thumping out of my chest as I try to keep up with the machine. My AHI count is still 16/hour. I end up after 2-3 hours of using the machine just turning it off and going without the rest of the night. This is not helped by the fact I had a broken nose as a kid and can't even comfortably where sunglasses - despite corrective surgery 20+ years ago). At best I might have to try other masks but im not convinced CPAP is going to work for me.
3) I've heard from quite a few people with obstructive sleep apnea that they've never been able to have a good night sleep with a CPAP machine and I don't imagine i'll ever get close to having an 8 hour uninterrupted sleep with one, no matter how they configure it. Credit to anybody who can get a proper sleep with these things. Based on others experience, what are my likely alternative treatment options? I've read there are a couple of drugs that can be prescribed - cetazolamide (Diamox) or theophylline (Theo-24, Theochron) and possibly others. Anybody been prescribed these and do they work and what side effects do you get? I'm also wondering if an oxygen tank might be the go, as I seemed to sleep the best with this in hospital.
Any advice from other CSA sufferers based on own experience would be appreciated.
Thanks
Apneabloke
RE: Diagnosed with Central Sleep Apnea - Stom - 07-14-2018
I'm still learning the ropes about centrals and PAP therapy, but one thing is clear:
As far as I know, basic CPAP and Autoset CPAP do not treat central apneas at all. They can also cause centrals, making CSA worse, possibly giving you centrals you wouldn't have otherwise. So it seems weird if they are treating your central apnea with an ordinary Phillips Dreamstation.
CPAP and Autoset CPAP are for obstructive apnea.
RE: Diagnosed with Central Sleep Apnea - jaswilliams - 07-15-2018
Step one download sleepyhead and post a couple of daily graphs.
Step two post a redacted copy of your sleep study here
You can upload both as attachments
And welcome to Apnea Board
RE: Diagnosed with Central Sleep Apnea - gwc2795 - 07-15-2018
apneabloke
RE: Diagnosed with Central Sleep Apnea - DeepBreathing - 07-15-2018
G'day Apneabloke. Welcome to Apnea Board.
The gold standard for treating central sleep apnea is an adaptive servo ventilator (ASV) which is basically a CPAP machine with extra intelligence that allows it to track and respond to your breathing on a breath-by-breath basis. If your breathing becomes more shallow (perhaps indicating the onset of an apnea) the machine will increase your inhalation pressure to keep things nice and stable.
As mentioned above ordinary CPAP or APAP machines don't usually do very well at treating central apnea, and can actually make it worse under some conditions. Perhaps in your next five minute consultation you should ask your doctor whether he has considered prescribing an ASV and if not, why not? The answer may well be that ASVs are extremely expensive and he's hoping to treat you at lower cost. The alternative answer may be that he is concerned about your heart. ASVs are contraindicated for patients with severe congestive heart failure - there is some evidence that if you have this condition an ASV is not at all good for you.
Regarding comfort and getting used to the machine - yes, that can take some time. It's often the case that you'll need to try several different masks before you can get one which suits you - this is a frustrating process but don't give up. You might also try making a pad out of flannelette or t-shirt material to reduce the pressure on your nose. Given your injury a full-face mask such as the Simplus might be your best bet.
Don't give up on this - it's not an easy process but the final effect on your health will be worth it.
RE: Diagnosed with Central Sleep Apnea - SarcasticDave94 - 07-15-2018
Welcome to the Apnea Board.
I'll not claim any such guru status on any aspect of apnea, treatment etc. I'd state though that I'm very informed of the process involved in getting and being successfully treated via ASV.
I will be as brief as I can. I had the CPAP set to high pressure, 18 of 20. I couldn't breathe out against that as a noob. I failed that compliance. I also failed BPAP compliance later, as central apnea manifest itself under that therapy. I woke up far worse for using BPAP.
I complained about it often to the doc. Finally, after about 1 month of BPAP, I demanded an urgent need doctor visit. I saw the doc and nurse at my pulmonary doc's office the following weekday as soon as they opened. The nurse there handled most of it. She and I went over my latest sleep study, and being coached on bullet points here I asked why my central apneas were many times higher than the OSA and Hypopnea counts. I followed up with, "Aren't centrals like mine indicative of ASV treatment?" She asked why I wasn't already on ASV.
Next was a few months fight to obtain the ASV machine after a new sleep study and titration proved need. I finally did get the ASV obviously.
By the way, my AHI numbers were initially over 70. I halved them via a bariatric sleeve surgery when I lost about 100 pounds. But I still had over 35 AHI. BPAP didn't change AHI to my recollection, at least not by much. The ASV? I'm always under 5 and regularly close to 0.5
Fight the doc on getting onto an ASV, at least in conversation. I'm not a doc of any sort, but this may be what you need too.
Post data via Sleepyhead and let gurus find what is going on. Best on getting this resolved.
The very best advice I can pass is this, don't quit until you get the proper mask, machine, therapy that makes you better than now. No kidding, you'll be in a fight, but it's one worth enduring and be determined to win.
RE: Diagnosed with Central Sleep Apnea - Sleep2Snore - 07-15-2018
Hi apneabloke,
Welcome to the ApneaBoard.
It might be better if you did download Sleepyhead software https://OSCAR Official Download Page ----> CLICK HERE ./ pick the one for your computer etc. You will need a few posts here before you can post the results though. Meanwhile, you will find instructions on many sig's on this site how to do it.
You might be better with a weeks worth of data before posting it.
After we see your results we can advise you better as to the next course of action.
RE: Diagnosed with Central Sleep Apnea - Walla Walla - 07-16-2018
If at all possible change doctors. You can download sleepyhead software here and also Rescan. Either one will document your clear airway events that you can print out. I would carry those with you to another Doctor and ask about an ASV machine which is for treating clear apnea.
RE: Diagnosed with Central Sleep Apnea - foxfire - 07-16-2018
1. Most of the time it is not possible to determine a root cause. Severe heart disease can Cheyne-Stokes respiration which is a specific type of CSA, and if heart function can be improved that can sometimes eliminate the Cheyne-Stokes, but this is not very common.
2. Your experience with the first week with the machine is not unusual. It took me 2-3 months to get used to my ASV. As Walla Walla said you may also benefit from ASV.
3. I was prescribe Diamox in conjunction with ASV. It hasn't had any discernible effect so I don't plan on refilling the prescription when I run out. O2 can be useful but, at least here in the US, the insurance rules to get it are very specific and not easy to meet unless you are very sick.