Hi, introduction and my experiences
My name is Sam and I am a 63 year old male from the UK, just north of London.
Many years (20+) ago I remarked to my doctor that just as I dropped off to sleep that I became aware that I was not breathing.
About 5 years ago I went to the doctor as I was so tired all the time, blood tests, thyroid function etc etc..
Last December my Partner (Lindsey) informed me that I need to see my doctor as when I was asleep I stopped breathing, she herself was having a few sleepless nights.
Late Decmeber we visited my GP and she "googled" stopping breathing whan sleeping and I fitted the profile of sleep apnea, was told that i shoulld lose weight (175lbs and 5 feet 7 tall) so not really overweight, cut down on drinking alcohol, I rarely drink any!! and no smoking, I don't..
Anyway she referred me to a specialist ?? who before I saw them sent a company round to monitor my sleep, he couldnt keep the monitoring equipment going but left it with me anyway, it worked for all of 45 mins before the alarm went off to say it was not working correctly and I tried for 20 mins to get it working before giving up and turning it off. I arranged to collect a new monitoring device the next day from Hospital where I was going for a pre op assessment (more of this later). I put all the monitoring equipment on the night and despite all the pipes and wires etc managed to sleep. that equipment was collected and I was told I would be contacted sometime.
I did get contacted some weeks later where I was invited to visit the hospital to discuss the results of the monitoring, unfortunately it was about 2 weeks too late to help in the recovery room after some major abdominal surgery where I struggled to breathe whilst coming round. They asked me a couple of days later if I suffered from S.A I answered that I had been monitored but not diagnosed. Anyway I attended the local hospital where I was informed that I woke up 59 times an hour and that Iwas suffering with OSA. I was given a machine (DevillBiss sleep cube) and a nasal mask and told to get used to it as I needed to wear the mask for the rest of my life. I used it from day one, that was the first problem, the nasel mask leaked and I tended to open my mouth from time to time..
Within a week I returned and was given a full face mask and a dehumidifier (dry mouth from sleeping with it open), I found the full face mask much better and had some excellent results with it. I actually stopped feeling tired and wasnt falling asleep every evening on the sofa. I had a coupld of minor problems with it all but persevered for the first 90 days (at this point I was easily compliant and getting my 4 hours a night sleep, my AHI was around 15 which was explained to me as being an 85% improvement. it also meant that I kept my driving licence as SA is a notifiable condition in the UK, I also have met and spoken to a couple of people with the same condition whose help and advice were helpful, one had lost his licence but he would not use the mask.
SO a sucess story, well not quite, the minor problems have developed itno quite major issues, Mainly leaks. I'll list them and any actions taken.
1) leaking mask, was issued with yet another mask with nasal probes, leaked after 10 mins, tried for a few night and reverted to the full face mask.
2) pressure, the machine starts at a pressure of around 3.5 to 4 cms H2O and ramps up to 19.5 where it stays, this causes the seal on the mask to flutter which wakes both of us up, I have managed to seal it by tightening it but that leaves me with deep red marks on my face and has given me a toothache due to the pressure applied by wearing the mask too tight. Pressure was reduced to 17.5 after discussion with the nurse.
3) with reference to both above I have seen somewhere on the forum that the mask needs to seal at a representive pressure not just the start of the ramp phase, makes good sense to me, the nurse told me that the pressure is only going up to comensate for the leak, yet the pressure ramps up to the full pressure and stays there, we have both checked it up there and its always at max..
At my last visit and having spoken to the nurse with concerns, I am falling asleep in the evenings again and feeling much more tired than a few months ago, I now get woken by the noise of the leaks and 9 out of 10 times turn the machine off and back on so the ramp starts again so I can get to sleep with low pressure, I can and do this several times a night. Some times I just take it off..
it was at this point I was aked if I had ever had a bang on the head because that could mean central SA ? I also get a sore or painful throat which she felt and discussed as possible thyroid goitre or cancer..... and told me she would make an appointment to see the Doctor (specialist). That was a couple of weeks ago and he was quite embarrassed as he did not even have the results of the sleep study or anything else of any use.. he did confirm that I should need the pressures that the machine was going to and that at those pressures it would leak.. he sent me away with the promise that he was going back to get all the details and would write to me with his findings and recommendations, he did check my throat and said he could nit find anything abnormal with it and was quite annoyed that the nurse had even mentioned it..
I am still turning the machine off and back on several times a night..
when I readf a few posts on here I was very encouraged to read that AHI's of around 4 or 5 were possible, currently mine have gone north of 25....