I'm not discouraged. Just wanting to know how alone or not I am in this.
I'm plugging along at c-pap, wearing every night 9 hrs on avg. 100 percent compliant.
I've slowly been adjusting settings (not as slowly as Paula suggests, might have to mend my ways, I am slowing with time anyhow) Never doing so for "no good reason" but only after studying numbers or dealing with problems (like machine runaways, stuffy due to too low pressure etc) I had the best ever AHI on 8-14 but it was too much too soon, so I'm working my way in that direction...s...l...o...w..l..y.
I've got plenty of perceived improvements, less night loo trips (though still good and bad days) longer stretches of sleep (saw 7 hours once in the 45 days I've been at this)
I may have up to three days with ahi under 5.0 strung together, but between other causes of bad sleep (ie pain/cold) and the slight disruptions from pressure adjustments along the way, mask changes etc.
Most other folk who have been newbies along side me "class of Dec/Jan 2014/15" have gotten quickly to not only under 5.0 but under 3.0 and even 1.0. and stayed there more or less.
Is my case odd, atypical, hopeless? I'm sitting tight where I am number wise for at least few days more. If my leak rates are tiny tiny amounts of big leaks, say under .25 and usually less, and my overall leaks being under the limit of 24 by half or more, and no dry mouths/throat. Should I try adding a chin strap? (I'm very sensitive to heat)
Is it just going to take time? Is it possible that I could when I finally get my pressure worked up to 8.0 and above, all will fall into place?
Sorry this is so long, not everyone is following my journey.
The Manse Hen
Susan, it's not uncommon for it to take a while, and some people never get there. However, with the right combination of mask / machine / pressures / humidity / EPR / etc / etc you should be able to achieve your target. The solution (as you have already found out) is to only change one variable at a time and give it some time to settle down. The problem is that there are a lot of variables, and a lot of other issues (colds, flu, whatever) which will interrupt your progress.
Don't get despondent, and don't get too hung up on the numbers. Even if it takes some time to get to the magic 5, using the machine regularly will still help you towards better overall health.
Apnea Board Moderator
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
I'm going on 3 months now and my AHI has only been under 5 one time and like you I'm up every 2 hours to the potty. It's torture but I am feeling better, I've been adjusting my pressure up in small increments so I can find an average thta at least I can expect every day instead of all over the board.
Didnt take me about a week after I started setting my own pressures to get under 3. With a FFM Im not going to be able to get under 1. FFM I have to go to high max pressures like 18 and the machine hits it quite often to get a AHI of 2 or so.
With a nasal mask I can get under 1 about all the time with a range of 8.5 to 12 cm.
But it takes way more time than that for alot of folks. I had to be a bit more aggressive because my O2 falls rapidly into the low 60s if I only have two OAs back to back. Fastest drop the sleep lab had ever seen. But it recovers slowly so I cant afford to be having OAs much at all and for sure not close together. Hence I had to push the envelope faster pressure wise as to making changes to get things under control. Waiting for two weeks for a Doc ordered pressure change wasnt an option.
Not suggesting you do that. But in my case I had reached the point of not being able to think clearly until way up in the day and cardiac problems were not going to stand O2 drops like that with the accompanying adrenaline shots to jolt me into breathing.
Thanks DB, Sumzzzs, Ghost,
I'm not giving up, it just helps me plod along to know that it's not just me. Sorry to hear you are also having similar difficulty Sum. I definitely feel better even with my imperfect numbers. Ghost, it's good to hear that you haven't given up the ghost, having lived with those desats!
The Manse Hen off to that adventure which is now more like Disneyland and less like the walking dead, of sleep.
I am down to averaging AHI to 1. Since I have a data recording CPAP and an oximeter. What events my CPAP machine indicates might be false positives since I am not seeing my sPO2 drop.
It could be that your pressure settings are too low. One is that when they did the testing they might have just looked at apneas and did consider upper airway respiratory arousal events.
The other is that they didn't use a proper protocol to assess your pressure. The following paper published in 2008 showed that incredibly that 22% of sleep centers didn't have a written protocol. I am an engineer working in manufacturing and you would be certified for ISO9000 or anything without a written procedures even if it was nails.
I reference these two articles. I include the entire bibliographic entry so you can search for them online since links aren't allowed in this forum.
1. “Clinical Guidelines for the Manual Titration of Positive Airway Pressure in Patients with Obstructive Sleep Apnea,” written by the Positive Airway Pressure Titration Task Force of the American Academy of Sleep Medicine, published in the Journal of Sleep Medicine, by Task Force Members: Clete A. Kushida, M.D., Ph.D., RPSGT (Chair); Alejandro Chediak, M.D. (Vice-Chair); Richard B. Berry, M.D.; Lee K. Brown, M.D.; David Gozal, M.D.; Conrad Iber, M.D.; Sairam Parthasarathy, M.D.; Stuart F. Quan, M.D.; James A. Rowley, M.D., Vol. 4 No. 2, 2008, found that 22% of certified sleep centers didn’t have a written protocol for their sleep studies.
“Upper Airway Resistance Syndrome,” PCCSU Article, 07.01.11, by Olukayode Ogunrinde, MD; Herbert J. Yue, MD; and Christian Guilleminault, MD, BiolD. The PCCSU is a publication of the American College of Chest Physicians. “College” in this case refers to a professional society and not an actually physical college.
I think it an individual issue, some like myself since starting on cpap have not seen a AHI of 5 , I take that back my highest was the end of my first week it was 8.21, that was only one night , most night run under 1 and a few around 3.5.
Now that's just me, my sleep study put in the severe category of 37 AHI so you can see this therapy is just what I needed.
Now someone else might a higher AHI like 60 so for them it could take longer to get under the normal of 5.
You just need to keep positive, I'm going to guess your still longing lower AHI's now than at your sleep study.
Your doing fine and remember this is an up down process and it's better to continue than not!
Sorry to hear that you are having so many problems. I know it can be very frustrating to see high AHI numbers and seeing others with lower numbers, but everyone is different. Don't be discouraged, once you get over this flu bug, things may start to improve.
May I ask what your untreated AHI number was, and did the sleep study doc/tech recommend a setting at that time? Also, what AHI numbers are you seeing now?
I know you've been advised to leave settings alone for awhile, and that is good advice. I understand as I am tempted to tinker with settings too. :grin:
Also,find the mask that works best for your situation and stick with it.
02-17-2015, 08:52 PM
(This post was last modified: 02-17-2015, 08:57 PM by TyroneShoes.)
This may help; this may not help. But FWIW:
I find that there are a lot of false positives recorded whenever I am rassling around to get comfortable just before I go to sleep, and if I rassle around after waking up and haven't removed the mask yet. If you are making a lot of midnight trips, that will only magnify this issue.
So maybe your AHI is actually lower than your think; check your graphs to see if you can spot these false positives (usually CAs) at the edges of your sleep sessions. They don't count because the word "sleep" is pretty prominent in the terms "obstructive sleep apnea" and "central sleep apnea", but if these events happen when you are not asleep, then they are false positives, by definition, and are due to the irregular nature of breathing when awake and moving around.
The machine does not know nor care if you are really asleep. It needs your help in that area, because it will dutifully flag anything that looks hinky whether you are asleep or not. It only takes a few false positives to turn a 4.5 into a 5.4. Or a 0.5 into a 2.
So to get a more accurate AHI, what I do is do all my rassling around first, and put on the mask at the very last. And when I wake up and know I am not going back to sleep, I take the mask off immediately. That minimizes the false positives. It helps to have auto-start invoked.
02-18-2015, 02:04 AM
(This post was last modified: 02-18-2015, 02:05 AM by swaziman.)
I've been going for about a month now. Still having issues. I went quite quickly up to my min of 7. One day of painful chest muscles (diaphragm? ) and it's been fine since. Still not sleeping longer than about 3 hours in a go. But my AHI is never over 5 so have to be happy with that. Keep with it Manse Hen.
Something unknown is doing we don't know what.
(Professor Sir Arthur Eddington, astrophysicist)