[CPAP] Introduction

[Knitman]

I started treatment August last year after yet another ICU visit(I keep falling backwards if I stand and that time I stopped breathing.) Anyway, they discovered I had sleep apnea.

Sent to Royal Papworth where I was for 8 days. Was sent home with Nippy 3 and oxygen. Hated it and it didn't don me much good. I kept taking it off in my sleep. Another ICU visit and this time a 4 weeks stay, in a different hospital, without my Nippy3 and they did nothing about it! They didn't know how as I had broken leg, knee, ankle and foot and was plastered toes to groin.

In December last year was put on CPAP and I have used it religiously every night except for two nights when I was sick and 1 when I fell asleep downstairs. I have had terrible trouble with masks. Bad leaks, no matter how tight I strapped iot. Infected nose bridge too but I still persevered. Eventually got a Dreamwear Full Face. This was better but I had to wear it tight to stop leaks and had terrible marks on my face that didn't go away for man y hours. 

I had much trouble getting a good AHI although I certainly felt much better and stopped falling asleep at the drop of a hat. (I also lost 10st in weight. Not normally fat but had a trauma, lost memory from May2014 to Sept7th 2019 and clearly ate a lot!)

Two things have changed dramatically this last week. I have a new mask a Resmed F30. A soon as I put it on, I knew it was going to work. It does fabulously. No leaks, nt tightness altho I wake with strap marks, gone in about an hour. And last night my AHI was 2.7. Has been 1.6, 3.1, and 5.1. 

A major change is how I sleep. I slept sitting upright for many years. It was too painful to lay down. Severe spinal issues. I bit the bullet and laid down again, foetal position as I used to. Hurt like hell. But AHI dropped well. Now, I am sleeping through without waking more than once, for about 7.5 hours.  I feel terrible when first up because of pain but once I have drugged up, I am okay.

I love this mask and so relieved my AHI is this low. 

The last time I was in they sent me home with a setting of 9 on my Dreamstation. but they hadn't tested me on it first. It was too low. I was told over phone how to alter it. I decided myself almost 2 weeks ago to put on auto trial. My average setting turns out to be 11.5 and my 95% pressure is around 13 but can be 17, tho since the mask change it has not been that high.

Sleeping laying flat has been a huge challenge and tho I am back to more pain, I think it is worth it. I have congestive heart failure because my OSA went undiagnosed for about 20 years, maybe longer, when I clearly had all the symptoms. My Drs are very good and they did diagnose important issues, FMS, OA, RA, HBP, High Cholesterol, severe spine issues, DDD, etc I am just surprised not one of them thought about OSA.

Kind regards

[Sleeprider]

Knitman, you have many health issues that affect your CPAP treatment. If you are willing to post some OSCAR daily detail charts, we will see your settings and the how you respond to the the machine. Since you used to sleep upright and had a high AHI, I suspect we may see positional apnea issues. This is a common result of when the chin drops to the chest and occludes the airway. It has a "signature" pattern where apnea are clustered tightly in groups. You can read about it in the Positional Apnea Wiki http://www.apneaboard.com/wiki/index.php...onal_Apnea and we have had great success in treating it with a Soft Cervical Collar to keep the airway open http://www.apneaboard.com/wiki/index.php...cal_Collar

Post a chart or two, and we can let you know our opinion. Your prior machine was a ventilator with a backup rate. I'm not familiar with the particular machine, but a more contemporary approach would have been an adaptive servo ventilator, which is more comfortable than the spontaneous/timed bielvel which I think is representative of the Nippy.

[Knitman]

Thank you kindly for your response. 

I have no trouble at all with sharing my OSCAR charts. How would I share a chart from when I was sleeping upright? I did realise that my head well flop forward so I tilted slightly back. Strangely, too far back and my AHI would go very high. 

I said I slept flat. What I meant was my bed is now flat. It is fully adjustable. I have slept in what I call the 'astronaut' position for years. but with my back upright, my bum in the trough, thighs raised and from knee down flat.

Are you suggesting that I can go back to sleeping like that if I wear the collar? I have worn them as a teen so know exactly what you mean. Would that be better for me than what I am doing now?

I like the way I sleep now. It was my normal sleep position for most of my life until about 10 or so years ago. Before the adjustable bed, I often stayed downstairs and slept in my recliner. 

I didn't mention but I am a full time wheelchair user-I am not paralysed but walking is painful and dangerous. I have brain damage from childhood traumas and I fall backwards without warning. It landed me in the ICU 5 times last year.

If you saw me in my house on a short visit, and I didn't get up, you'd not think there was anything wrong with me.

The drawback to having successfully returned to the foetal position is that I can't sleep longer than about 7 hrs because pain prevents it. Until the pain meds kick in I am also in a mess when I awake but an hour later and I am fine. Today has been a good day. No sleepiness at all. My swimming was a no go becaus eof extremely heavy rain all. My husband would have got soaked getting my wheelchair out of the adpapted car. Going in on my crutches would maybe have been okay but after my swim it would have been dangerous. I love to swim as in the water I am not disabled. I am an good swimmer. 1 mile in 55mins. 

I do tend to ramble. I have difficulty speaking sometimes, like I am drunk. I also stop talking in the middle of a sentence because I just go blank. Writing is not a problem because no one sees the blanks! I also disassociate. Although I have come a long way in terms of healing, CPTSD never goes. 

The way I feel right now is that I want my AHI to be low, well under 5, each night. I am prepared to pout up with the problems laying down causes.

I am also willing to go back to my previous position to try out the collar and see if that stops the high AHIs. One thing that is apparent, I have limited motion of my neck and pain. This laying on my side has made that worse.

My apologies if much of what I have written is extraneous to the subject or your question.

What is the best way of getting the screenshot of the OSCAR layout to post here?  I may already have succeeded before you answer!

kind regards

[Knitman]

       

[Sleeprider]

Knitman, there is specific information from your charts that will helps us. This tutorial will help you to organize the charts for our use. http://www.apneaboard.com/wiki/index.php...ganization The different charts on the right can be dragged up or down to show us Events, Flow Rate, Pressure, Snores and other information. In the menu at the top is View. You can go to View (next to File) and select Reset Graphs and select Standard to show the information we most want to see. The Advanced View focuses on respiration. The View menu lets you toggle the Pie Chart off, or use F3 to close that. We don't need it, and better information is underneath. So in summary:
Go to View Menu
Select: Reset Graphs / Standard
Select: Left Side Bar
Unselect: Pie Chart (F3)
Unselect: Daily Calendar (F9)
Unselect: Right Sidebar (F10)
Select: Take Screenshot (F12)

That will give us what we need. I can tell you right now, we will be making changes.

[Knitman]

Hoping I did this correctly. Oh I forgot to mention I have COPD and Asthma. Both mildly. In fact I was shocked. My husband has COPD and his is very obvious. I diagnosed it and spoent a long time convincing to go to the Doc. He is 73. I am 62.

       

[Sleeprider]

If the November 2 chart is what happens when you are sitting reclined in bed, and December 22 is while laying down, the difference is pretty amazing.  You can probably stop a lot of that by using a soft cervical collar that supports your jaw and chine, but does not restrict your neck and throat.  The flow rate chart is very important to interpreting your results. Please try to move it up so it is visible.

What is the story on this CPAP machine? It shows it is in auto Trial mode. That mean it is likely a Dreamstation DSX400 which is a fixed pressure Dreamstation CPAP Pro.  We see some auto-pressure movement which may be a Dreamsations Auto CPAP DSX500.  See if you can find one of those model numbers.  Have you ever talked to your doctor about bilevel or BiPAP?  For someone with your pressures and especially COPD, a bilevel pressure machine that provides lower exhale pressure and higher inhale pressure is much more comfortable and effective, and can improve ventilation.  

Here is an example of what your chart should look like with Events, Flow Rate, Pressure, Leaks and Snores:

[Knitman]

       



It's a Dreamstation CPAP, not an auto. I have it set to Auto trial to try and see what my pressure ought to be. No idea what the machines you mention are but I would prefer an auto, with my limited knowledge.

[Sleeprider]

If your insurance is good, we can coach you on discussing an upgrade with your doctor. A fixed CPAP machine is going to be very difficult for you to manage due to your preferred sleeping position. I'm sure you probably had some kind of study to determine your pressure in a sleep lab, and you were forced to sleep flat. That resulted in a fixed pressure that does not work in other sleep positions. You are in the UK and depend on the NHS where you get infrequent attention from a consultant and rarely have any attention to your changing needs. There are machines that can work much better than the fixed Dreamstation, and you will have to discuss your needs as a COPD patient with heart failure and back problems that require you to sleep upright. In my opinion, a bilevel machine like the Resmed Aircurve 10 Vauto is ideal, but even a Resmed Airsense 10 Autoset would serve better to change pressure with your changing needs, while providing some pressure support (difference between inhale and exhale), to better support your respiration and make breathing easier with COPD.

That is a lot of information, but we will work to get you acquainted with what it means, as we also work to optimize what you have. This is a really great chart, exactly what we want. Your night in an upright position is a wreck, but I think you can sleep that way if you use a soft cervical collar, and perhaps increase pressure.

[Knitman]

I really appreciate that you are helping me. However, I simply must correct your erroneous view of the NHS. The Royal Papworth where i am lucky to be a patient is ultra modern and one of the world's leading hospitals. I get all the attention I need and ask for. This year it has been difficult for us all because of COVID and my ward and all the staff were seconded into COVID care. IF I were asked to go in, I would refuse. In fact I have just had a letter, email, from the th Govt., telling me that. y husband and I must shield until the 18th. This whole area is now on Tier 4 lockdown. Basically, what the USA gets told about the NHS is nonsense and I believe is a deliberate ploy so that you continue to accept the inhumane system over their.

I do not need to worry about insurance. Everything is free. From the 52 pills a day I take, John's treatment, my machines, my masks, my filters, all of it is free. NO ONE ever goes untreated or dies or goes bankrupt for lack of funds for treatment. ALL treatment is free. Transplants, cancer treatments, Covid treatment, everything, no matter the expense. 

When I had my sleep study done, I was in. the hospital for 8 days. Of course I was allowed to sleep the way that is comfortable for me. i.e upright. I had my own room and John stayed with me. Each time I have been in. During those eight days, I had scans of my heart which discovered I have biventricular failure and was immediately given meds for that. The only test I did not have is an MRI because I cannot do it. They were arranging for an open one for me but COVID hit. I have episodes of bradycardia when I sleep. Whilst I was in I was going from 30-200bpm. Now it is down to 30-90bpm.

Why can I not continue to sleep in the foetal position? It seems I am able to a nd is much better for my readings. That 16+ chart was not a normal one. But yes, I found it very hard to get readings under five. Yet Dreamapper says my 90 average is AHI 5.4.

Do I mind if I ask if you are a medic?  Just wondering. You appear to have the desire to help people that medics have. If you are a medic, I can quote you and tell them your opinion. One thing is that since starting CPAP treatment I have lost 140lbs (10Stone) and will ,lose another 30lbs. I think I said after the trauma in 2014 I out on weight enormously. Altho my memory of then until Sept7th 2019 is a blank, I must have eaten a lot. 

Even staying sleeping in the foetal position as I am doing, I think the auto trial is showing I need an Auto CPAP at least.

Once again, thank you for your kind advice.

kind regards

(am off to bed now as I have lost track of time and it is gone 1am here.)