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+--- Thread: New User [need help with my data] (/Thread-New-User-need-help-with-my-data)
New User [need help with my data] - Recurve - 08-28-2017
Hi, I have been studying up on as much of this site as possible.
My mum is having days where her numbers appear good then days which I do not understand why her readings are so high. She was sent home with the new machine with settings of 7-13 for pressure and had a few good days then a few bad days. I started looking for answers and ended up finding this website as well as the ResScan software, I then downloaded Sleepyhead so I could use both to look over her data. I found at numerous times her pressure was maxing out at the 13 level so I contacted her specialist and they agreed to reset her machine to 6.4-15
Now I am seeing on her data she is even hitting the 15 during the night. I am thinking her pressure still may need to be a little higher. I have read here any number above 5 events is not considered as treated she is normally above this figure and her technicians do not appear to concerned.
I am hopeful some from this board can look at her charts and advise if anymore can be done to help or if this is the best she can hope for. 7 days of charts I hope helps
htt p://imgur.com/a/4Yaya
htt p://imgur.com/a/GfwBE
htt p://imgur.com/a/PBO7T
htt p://imgur.com/a/PBO7T
htt p://imgur.com/a/PBO7T
htt p://imgur.com/a/W3bHH
htt p://imgur.com/a/VB5WU
1 chart from before I got them to increase from 7-13 to 6.4-15 (thanks to this board I knew something needed changed)
htt p://imgur.com/a/lsxzB
RE: New User - DeepBreathing - 08-28-2017
G'day Recurve. Welcome to Apnea Board.
The charts are showing high numbers of obstructive apneas and high numbers of central apneas. So the first question is: How many centrals showed up on her sleep test? If she had a lot of centrals prior to going onto APAP therapy, then you might need to consider a different type of machine (ASV). If, however, the centrals only showed up after she started therapy then they may be pressure induced. The fact that they seem to cluster around 6:00 am when the pressure goes up does make me think they might be pressure induced.
As a first step, I would reduce the EPR (exhale pressure relief). It's currently set on 3 - try 1 or even off. Note that this might cause discomfort when exhaling, but it might help reduce the number of centrals.
Second, each night shows a rapid increase in events around 5:00 to 6:00 am. This sudden onset looks like it might be positional - eg chin tucked to chest, putting pressure on the windpipe. It would pay to investigate what's happening here. A lot of people find that wearing a soft cervical collar supports the chin and prevents this type of blockage.
It may be that she does require a higher pressure, but I think you should check out these other factors first.
RE: New User - Recurve - 08-28-2017
Hi thank you for the response this was her sleep study
http://imgur.com/zK4MEo4
http://imgur.com/a/sOG2R
She has had multiple fusions on her spine (actually built like a cage in her back with Titanium) during this sleep test she was on morphine, tramadol and a whole lot of other medications. She was advised even though she would suffer more pain the morphine they think was causing a lot of the central Apnoea. She has stopped morphine all together but is still on other medications.
I will look into the neck cushion also and contact her technician to test adjusting the pressure relief
RE: New User - DeepBreathing - 08-28-2017
The first thing which stood out in the sleep test is the very high proportion of central apneas. Medications can indeed cause central apnea with opiates (ie morphine) being notorious for this. However it's difficult to unravel what's caused by the drugs and what's endogenous. I suspect she will need to remain on the meds (?) in which case you should investigate whether an ASV machine is more appropriate for her. These work remarkably well but are expensive (~AU $4000 or so) so the sleep clinics try to get the lower cost machines working before they go to ASV. Unfortunately the health funds only pay a small fixed amount (between $300 and about $800 depending on the fund) regardless of the type of machine.
RE: New User - Recurve - 08-28-2017
Thanks again,
We have gone out and purchased a neck collar and will see if this helps at all then contact her therapist about changing the EPR tomorrow. She has stopped morphine but continues to need Tramadol which we are told can cause it also. In the end we may need to look at the other machine.
Her technician in WA seems to think her numbers are ok and the machine is treating each event but reading this forum I tend to not agree.
RE: New User - Recurve - 08-28-2017
New data
Mum used the neck collar last night and it does not appear to have helped at all if anything it was 1 of her worse nights. Leak rate looks fine pressure was a slight issue but not at the times she was having the most centrals (If I am reading the charts correctly).
http://imgur.com/gyYi0RH
I will be calling her sleep place today to ask for her to adjust EPR and if they have even sold her the correct machine. Is there any other things I should be asking?
Seems crazy that they seem to have very little clue about the machine she needs after her sleep studies and 4 weeks of wearing the test machine they provided. Then they advise her to buy the wrong machine.
RE: New User - trish6hundred - 08-28-2017
Hi Recurve,
WELCOME! to the forum.!
I wish you good luck with getting your mother’s CPAP therapy needs straightened out.
Hang in there for more responses to your post.
RE: New User - DeepBreathing - 08-28-2017
Yeah, that's still pretty bad. It seems the obstructives are still coming in a big cluster in the early morning, and the pressure is bumping up against the maximum the whole time. It would be interesting to see what's going on there.
On the other hand, the centrals are going all night long, even when the pressure is fairly low. They are not pressure-induced as they showed up in the original sleep study.
They could be related to her medication, or else they are endogenous, or a mix of both. In any case, an Autoset is not going to fix them - you need an ASV. The recommended machine (recommended by me, that is) is the Resmed CS Pacewave (also called the AirCurve ASV in some countries). http://www.resmed.com/au/en/consumer/products/devices/aircurve-10-cs-pacewave.html
RRP is about $4500, but they are widely advertised at $3999, perhaps lower if you shop around. There is no benefit in shopping for these in the US as their prices are no lower than Australia (and in many cases higher) for this particular model. This is a big wad of money, but I suspect it may be the only way to get her therapy sorted. Does she have Centrelink or DVA benefits? If so, they may be able to assist. In my experience DVA are far more approachable and helpful than Centrelink, especially if you go into the DVA office in St George's Tce.
If you do need to go to the ASV, then expect a full refund for the AutoSet - under Australian consumer law it would be construed as not fit for purpose.
One issue you do need to be aware of is that ASV machines are contraindicated for people with severe congestive heart failure. If you Mum falls into this category, then a deep and meaningful discussion with her cardiologist would be in order.
In the meantime, try reducing the EPR to see if that helps with the centrals. Unless your clinic has locked it out, the EPR should be a customer setting that you can use yourself without relying on the clinic.
You wrote earlier that the technician seemed satisfied with your Mum's results - I would not be satisfied with that technician! These are very poor results, but they can be improved. For my own interest, can you tell me which clinic you're using?
RE: New User - Recurve - 08-28-2017
Thanks for that I shall change the settings myself if the technician refuses, I agree I am not happy with those numbers and will look at getting her heart checked properly before we change machines. She is on a full disability pension so I may contact centerlink to see if they can help also, thanks for the tip.
I will send you a pm of the clinic not sure it is wise to name them on an open message board
RE: New User - Recurve - 08-29-2017
Wow what a phone call I just had to endure with her technician she was very aggressive to the fact I asked for help on a forum.
Apparently it is all mums fault as her claustrophobia means she can not use a full face mask, they said all would be perfect if she wore full face mask and it was mouth breathing causing the issue could this be correct?.
I replied that we used the neck collar and the centrals where happening with no real bad leaks and asked if the other machine was a better solution. She claims everyone is wrong bar her anything under 10 events/hr is fine. I said well her events are well above 10 and how can this be fixed.
She got extremely aggressive to the point I had to multiple times inform her we where not at war against each other I simply want what is best for my mothers health. She stated in her opinion the pressure is set to high and reduced it to 13 from 15. I asked about changing the EPR from 3 to 1 she refused but said she will change it from 3 to 2.
I do not trust these technicians as from what I can see her centrals are happening in the main sleep study to the point they emphasis that predominately Central. Now after all this time she still has readings off the charts. Can someone give me settings to try without the need to speak with such rude ignorant technicians? should I change it to airplane mode to lock them out? should i set it 6.4-15 with EPR of 1 or 2 or 0?
I am so angry right now they made out like I was attacking their credentials when all I wanted to ask was is there a better way. All blame was put on my mother which I can accept if the leaks showed during the central apnea she may need full face mask but from what i can read with limited knowledge her leaks where fine while these events occurred.
Should we be seeking another specialist if so is there any in Western Australia that can be recommended with less egos than the people we have had to deal with. I will not be apologetic to wanting what is best for my mother.