[CPAP] Introduction

[Knitman]

 I slept the whole night as I am used to, positioned like an astronaut but I had my back sloping instead of bolt upright. 

I wore the collar all night. I put a microfibre cloth tucked in the back where the velcro strapping is as it rubs my neck. I have a Dr Dakota collar arriving this week which will hopefully be more comfortable.

No dry mouth. In fact had to wipe the inside during the night from dribbling.

Had I got up when I awoke wide awake after 7hrs my reading would have been 0.97  but I felt I had not had enough sleep so I used my meditation mantra and went back to sleep for further 2 hours approx.

kindest regards

   

[Sleeprider]

I think you might be another great before and after example for the soft collar.  Pretty amazing transformation, and speaks for itself.

Before


After

[Knitman]

I am certainly hoping so. A collar seems to solve all of my problems along with the new mask type, Resmed F30 which is wonderful.

kind regards

[Knitman]

I have no idea what went wrong. I went back to laying on my side after 3 hrs and saw my AHI was 10.6. It was then AHI 4.08 for the first 2hr 27m and then it was 16.07 for 3hr 29m. I was asleep from when I first went from sitting to laying. My husband says I was on my side when he got up at 10:30am. I had wondered if I had maybe turned onto my back but that seems unlikely as it would hurt too much. 

I was not expecting this, obviously, and it is somewhat disheartening. I found out yesterday that the prognosis for heart failure is bad. Despite having no symptoms that I can tell except for arrhythmia which I have had since my 20's. 

   

[Sleeprider]

Sleeping on your side does not preclude positional apnea if your chin compresses while in that position. It actually is common. It looks like a bit of a setback, but I'm sure if you are careful with putting on the cervical collar, things will come back.

[Knitman]

Sleeping on your side does not preclude positional apnea if your chin compresses while in that position. It actually is common.  It looks like a bit of a setback, but I'm sure if you are careful with putting on the cervical collar, things will come back.

I wondered if I did not have it tight enough. It may have been better to tighten it rather than panic and lay down. I say tighten because I know last night my chin easily went inside the collar I deliberately opened my mouth, whereas my first two uses of it, I could not even force my chin down. 

I also wonder how much stress places a part? I don't see really how, if the physical stuff is in place correctly.

I ask because I discovered yesterday that heart failure is almost always fatal within 5 years. I was not at all aware of this. I amy have been told but I was in my blackout when all this happened, the sleep test, heart tests etc so I can't sy I wasn't or was told. 

I have no symptoms except for an irregular heartbeat which is nowhere near as bad as it was. I am only rarely aware of it but that hs been since my 20's. I swim 1400m in 50minutes or less. That is 200m short of 1 mile (1600m=1.6km=1 mile) several times a week when not in lockdown. My last swim about 2 weeks ago, the Monday before Xmas. 
I get no other exercise due to not walking. 

I found out today that a person I corresponded with, with SA, heart failure and knitting(I'm a designer) in common, died aged 50 of COVID on Xmas day. This would not of course have had anything to do with last night. It just threw me a loop today.

Last. night's reading has left me feeling anxious. Hopefully with no good reason. I normally just take everything as it comes, a day at a time but I am not perfect.

[Sleeprider]

I lost my dad to CHF and the progression and timing is different for many individuals. I think the mortality rate is 50% five years after diagnosis, so not as grim as you think. What is your left ventricular ejection fraction at this point? Maintaining some level of exercise slows progression, so while it is uncomfortable, do what you can. I'm sure you are on therapeutics like diuretics and blood pressure control, which can help slow progression. My condolences for the loss of your friend.

[Knitman]

I am sorry about your dad. 

Time goes very quickly. 5 years is a very short time when one is 62. I have spent all of my life recovering from my violent, abusive, 24/7 frightening first 19 years. I escaped, was homeless, then I met my husband at 22 and we have been married ever since, legally for 8.5 years. I'd be dead if not for him becoming my rock and safe place. 

I only came to terms with it all 4 months before I turned 61. I have had three periods as an adult of going through what needed to be gone through. 18mths of sheer terror when I first went into therapy and 'told on them'. The fear was indescribable but I got through it and came to understand I had no reason to fear as what I was afraid of was not real, it was just mind control and I was deprogrammed over a period of 5 years. 

Then in 2007 I was at a dog show and I told my friend that I had a really unpleasant feeling in my tummy. She said it was nerves and it would pass once I had been in the ring. She was wrong. That feeling just grew, convincing me I was very ill. I had a GP who was very understanding and knew I was not ill but she sent me for a whole load of scans and blood tests anyway to convince me. It truly felt like there was something in my tummy. I cried daily for 5mths then one day the feeling in my tummy was so intense I fell to the floor clutching my tummy. I then heard these animal sounds coming from somewhere and it felt like that thing from alien was coming out of me. What did was the worst crying I have ever experienced. It physically was excruciating. I slowly recovered. I stopped dressing in just black, grey or brown. I became a very colourful and smart dresser. I stood out. I wear hats of all types. This I enjoy and it distracted people from my troubles walking and the canes I used.

My OCD stuff just went away. They had been with me all my life, almost. They just stopped. Thank goodness as I would have been washing constantly during this pandemic year. 

Then Sept 7th 2019 I fell, yet again, but this time broke my fibula, ankle, 5th metatarsal and pushed my knee cap out. I pushed it back in. The pain of this fall  made me cry instantly but in seconds I saw my dad, and every other 4 letter word that had harmed and I screamed out rage for quite some time, encouraged to do so by John. I was finally exhausted. Astonished that I had had that rage in me. I have never hated, and I still do not, and anger frightened me and to admit I felt anger was to admit I was like him so I buried it deep.

I then had 8 weeks in hospital where I had to face other things. I was totally in the control of others. I was naked and unable to do anything on my own. In a few days I just accepted it and felt no embarrassment or shame. I also realised I was now free. I lost 140lbs with 40lbs to go. I was not used to being that fat but during my 5yr memory gap I am told I only ate Tesco's own bran store cooked Finest Granola Squares, scampi, and fresh grapes. In that order. I mean I ate just the one food and nothing else for however long it took to go off it. The Granola was the longest. This why I got so fat. I was agoraphobic again.

So you see, whilst I am fully aware that people with CPTSD are more likely to have auto immune problems, heart disease and die young, I had not expected that to be me. 

I swim almost a mile in 45 mins 3-4 times a week when not in lockdown. My last swim being the Monday before Xmas. The earliest I can return will be the 18th if the lockdown ends as we are told it will. 

I have only the normal pain movement causes me. When I swim it hurts my arms and shoulders firstly. It then wears off. I drug up well. I have no trouble at all breathing and in fact on that last day a professional swimmer/surfer told me unprompted that my swim ming technique was excellent and my breath control was remarkable. He was shocked to realise the wheelchair at the edge of the pool was mine.

My BP averages 118/63 and my resting heart rate is 49. During my sleep, it goes between 30 and 100. I know the first test showed it going from upper 30's to over 200. 

I know this has been a long reply with perhaps a lot of detail you don't need or want to know. I share it because it is important to me. My life has been very difficult indeed. I have fought very hard to be where I am now. I want time to enjoy my hard won freedom and general peace of mind. To have overcome so much and then just die isn't what I want or expected. It sort of makes me feel I just should have thrown in the towel many years ago and not put myself through the healing process.

Oh, I am fully aware we all must die. I am also more than aware that others have it far far worse and do not get the opportunities I have had. It is August 2019 I was diagnosed and from what I have read, and you have confirmed, I have a 50% chance of being dead by 2024 or being so ill because of my heart that life would not be worth having. I am not sure I read what happens to the other 50%.

Oddly, I did 'die' last year as a result of one of my falls. I was how I ended up being in a sleep clinic. I had fallen at home, as always, but in such a position, John and my two neighbours couldn't budge me. The paramedics couldn't. In the end the fire brigade and the medics did get me out but all the time shouting at me not to sleep. I was angry with them because I was in such a lovely place. No dead people, no bright light, altho where I was was all white and peaceful and all I wanted was for them to leave me alone and let me sleep. Unbeknown to me, I was dying from lack of oxygen. All in all I went nearly 2 minutes without. Yet I felt so at peace and I wanted to just float away. I was not at all pleased to be so rudely woken as I was in the ICU. Now of course I would thank those men and women for saving me.

I am going to speak with my GP tomorrow if I can. There are only two I will speak with and hopefully one is on duty.

[sheepless]

I can't imagine how difficult what you describe must be/have been. for that I can only offer my sympathy.

with respect to the collar, they're not particularly comfortable and the conventional advice is to wear them loosely. I think it depends. I have a short neck and weak chin so I find I have to wear mine quite tightly. I don't like it but I'm used to it and it's absolutely necessary to avoid oa clusters, plus it's the only method I've found to work for me to keep my lip leaks down.

all this to encourage you to keep trying adjustments and other collar brands/sizes/styles if necessary.

[Knitman]

I can't imagine how difficult what you describe must be/have been. for that I can only offer my sympathy.

with respect to the collar, they're not particularly comfortable and the conventional advice is to wear them loosely. I think it depends. I have a short neck and weak chin so I find I have to wear mine quite tightly. I don't like it but I'm used to it and it's absolutely necessary to avoid oa clusters, plus it's the only method I've found to work for me to keep my lip leaks down.

all this to encourage you to keep trying adjustments and other collar brands/sizes/styles if necessary.

Thank you kindly. Last night I slept with it tight but it didn't bother me. However, it wasn't smooth sailing.


I awoke after almost 5 hours with a reading of 5.26.(when broken down it was 1.45 at 3.2  and the over 3hrs at 6.27)I did not remove collar and lay down. What I did do was adjust the back of bed so that it sloped further back. It was more comfortable and I slept for 4.47hrs but with an AHI of 3.26. I had a lot more VS2 in this last 5 hrs but I have no idea of the significance of snores. 

I can post the charts, even separately if wished. I ended up overall at 4.32 with VS2 and PB too.

kind regards