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....
Welcome Sam, the minimum AHI you should be trying to achieve is 5 anything higher pushes you back into the mild SA.
I know a lot of people in the UK that don't get as good treatment as in the US or Australia, keep at it till you get the results you need
WELCOME! to the forum.!
Hopefully, you can get your CPAP therapy fine tuned so that you can get good quality sleep.
Sometimes it can take quite a few different masks 'till you find the one that works for you, so just keep trying.
Hang in there for more suggestions and muc success to you.
Welcome to the forum sam496, you've come to the right place for helpful, knowledgeable people!
Thanks for the welcome, I'm afraid I sort of expected the medical people to know what they were on about and now I am not so sure.
Anyway I have with a bit of searching found that I can do my own charts by using the Devilbiss on line chart generator. the results are below. Not sure what all the numbers mean yet and how they work together??
Last night (last day below I went back to try the Res Med Mirage Liberty mask which was the last one issued, was slightly better than before although it looks like my AHI has gone up while wearing it, I find it more uncomfortable than the full face that I have got used to.
Tried attaching a doc with my results from the cpap [attachment=1753]
Thanks for the comments
Unfortunately, your data using that online software does not tell you what type of events are being counted in the AHI. There is a difference between obstructive apnea events and clear airway events, but both are counted in the AHI. One responds well to increased pressure, but the other can get worse with increased pressure.
One thing I hope your machine does not do is react to leaking by increasing pressure. None of the CPAP machines I am familiar with do that. I am confident yours doesn't do that, either. Machines react to events that are interpreted as obstructive (snoring, labored breathing or halts, flow limiting) by small increments in pressure.
If you feel comfortable with trying new settings and you have that capability, you might try reducing your maximum setting even more and increasing your minimum setting. Doing this slowly (small setting changes and leaving for at least 4 days at each) you can monitor the differences in your online data.
Most of us get better scores when we raise our start pressure (or minimum pressure). If you start higher, the machine does not have to make as many adjustments to reach an effective pressure to prevent obstructive events,
Initially, if this were me, I would initially set my start pressure to about 8, and my maximum pressure to about 14, and run that for 4 days to a week. The narrower band of pressures would allow for better mask fitting to establish leak control.
Even with an AHI in the low teens, you are getting better sleep than before, so you need not worry in the short term if you cannot get the scores below 5 or even 10.
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
Quote: Last 90 Days Last 30 Days Last 7 Days
% Days of at least 4 hours (not continuous) in a 24 hour period 91% 87% 100%
Day Count 90 30 7
Days at least 4 hours 82 26 7
95th Percentile Pressure 17.0 16.5 16.0
90th Percentile Pressure 16.5 16.0 16.0
AHI 16.5 18.5 17.5
Pressure Plateau Time 3% 6% 7%
High Leak Flow Time 2% 3% 5%
NRI 5.00 1.75 0.00
EPI 1 1 0
While Breathing Hours Last Day
Adherence Score (4 continuous hours) 97% (29/30)
Your results indicate a fairly high CPAP pressure and continued high AHI. As mentioned by QAL above, we don't know what type or distribution of apnea, hypopnea and central airway those events are. Based on U.S. standards, you're not adequately treated and continue to have moderate apnea. Also, with those pressures, you might benefit from bilevel (BiPAP/VPAP) therapy which would lower pressure on exhale and generally be more comfortable.
Leaks and mask fit is usually the biggest challenge, and you still need to find a mask that fits and avoids leaks. It would be much better if you had a machine that provided real data. I'm not familiar with the "DevillBiss sleep cube". They are usually branded as IntelliPAP Standard, Standard Plus, Auto Adjust, Bilevel S and Autobilevel, and most IntelliPAP machines are supported by Sleepyhead Software. http://www.sleepfiles.com/SH2/
Do try downloading and installing Sleepyhead and see if it will read your machine data. It would help a lot.
Thanks for the advice, my latest update is,
Mask sealing with nasal pillows or full face (alternated as I seem to get a couple of good nights before leaking) is still pretty poor..
After waiting 5 weeks for the letter with new plan from the consultant I decided to contact them only to be told that they were waiting for me to make contact??
Basically I was waiting for a letter from them, and they were waiting for me to contact them....... As I pointed out to the nurse "it's a good job its not life threatening".....
So back I went to the nurse, who informs me that they wanted to try a few changes to the set up of my machine, if they knew this why did they not contact me they have all the info to? in fact most of it is dealt with via text messages between the nurse and I.
The new plan is that they have set max pressure to 11 which is as soon as I put the mask on, they have set a ramp which i can switch on to enable me to get to sleep.
She went on to explain that having considered my study yet again that I have a mixed apnea of obstructive and central, and this new setup may not make any difference and that they will probably send me off for a proper study overnight at the hospital...
we also went through a selection of masks to see what we could find that didnt leak. I started with a nasal mask but moved quickly on to a full face due to mouth breathing, I find the full face fine but it leaks, I also have a nasal pillow mask whick leaks round the mouth possibly due to being the wrong size and maybe also due to the shape of my face.
I did express that a nasal mask with a chin strap to encourage me to keep my mouth closed may work, they dont have chin straps, so I have now a made up chin strap (from one of the other masks, not ideal but works to a degree) and a new Phillips Respironics nasal mask (easylife). Initial findings are:-
4 nights sleep so far, AHI of 16.5, 11.5, 19, 18.5 with no leaks waking me up, they are going to request a download from my machine after 3 weeks for monitoring purposes but based on these early results I see a new study in my future and probably a BIPAP machine.
I have downloaded the sleephead software but as I have no way of downloading data from the sleepcube, I can use devillbiss online software to get a set of results but it will only give pressures and AHI but not O and C percentages. it does have a port on the back which maybe for downloading ?
thanks for the inputs
Latest update is I have just purchased SmartLink Version 2 Software with Module, Cables, Data Card and Card Reader for DeVilbiss IntelliPAP Machines from one of the stores listed on here.
I ordered from a USA site as its over 40% cheaper including shipping than the UK or EU based stores. even if they charge me a lot for tax and import duty it will still be cheaper...... deliverey by Friday...
what does it all mean?
would i be correct in assuming from the data that I have little or none obstructive apneas?
new mask works well with no noticable leaks,
lower pressure set at 11cm/h2o maybe the answer to that..
I'd like to get an oximeter to complete the set up and see the full picture but the $700 to $1200 quoted is beyond reasonable..