Disappointed after 7 months of therapy

[okcpa99]

Have had way too many problems to list since starting CPAP therapy in February. Severe sleep apnea. AHI was over 30 on my sleep study.

My AHI is consistently 7-15 everyday despite therapy. My pressures range from 7-20. I have obstructive events even with a pressure of 20.

My sleep doctor is great and has tons of experience. He suggested I switch from the ResMed S9 to the Respironics for 2 weeks and see if the machine would make a difference and gave me a loaner. Just got my results back today. My results were TERRIBLE!!! I had no leaks (I use the Tap Pap) and my AHI has been staying in the 20-30 range, with a pressure of 20 for 2-3 hours at a time.

So my tongue is too big and my jaw is too small and it sucks. So I get to go see a dentist and get a custom mouthpiece to use in conjunction with cpap therapy. I want to get the TAP-PAP CS (Chairside). Have no idea how long it will take to get this approved by my insurance, get the impressions made and the appliance created.

I take provigil 1-2 times a day and I am totally compliant with my cpap use. The night sweats are horrific. I have started laying out a change of clothes for when I wake up at night freezing in wet clothing. I have had all my hormones checked and I am not premenopausal and don't need hormones so the sweats are from the apnea.

I am frustrated and disappointed. I have gone to such measures to try and make this work.

I have tried the following masks (in order) since February:
-Quattro Air - totally disastrous (due to my jaw falling back). terrible ulcer on my nose (still have a scar)
-Hybrid - disaster - leak, leak leak
-AirFit P10 - did not like the headgear. Had to shorten it and it just got loose so easily causing leaks. Also got a nasal sore
-Nuance Pro - pillows so, so, so, soft. Did not like the headgear. The cheek pads popped out after just a few weeks of use
-Swift FX - it is ok but my leak rate is pretty high with this
-TapPap - almost no leaks and NO STRAPS!!! I sleep with my hand on my cheek (even if I try not to) so my hand moves the straps which causes leaks. This is my favorite mask but only wish it came with the nuance pillows.

So maybe an oral appliance plus cpap will be my magic combination. Who knows. Everyday I feel like giving up but I am too afraid I will die in my sleep someday if I don't keep on trying.

[Krelvin]

Provigil (modafinil) is a medication that belongs to the drug class called stimulants. Provigil is prescribed to increase wakefulness in patients with excessive sleepiness related to narcolepsy, shiftwork sleep disorder, and obstructive sleep apnea/hypopnea syndrome. Common side effects of Provigil are headache, upper respiratory tract infection, nausea, nervousness, anxiety, and insomnia.

Sounds like the opposite thing you would want if you are trying to sleep...

[kteague]

You certainly been putting forth a valiant effort. Just thinking about that wide a spread in the pressure you need and a few thoughts come to mind. I think you are one who could benefit from folks here talking a close look at your data. If your OSA is positional, can you do whatever is necessary to prevent the worst position (usually back)? Some people must back sleep due to other problems, and if that's the case, maybe you should start your pressure range up closer to what you'll end up needing. If you really do need close to 20 very much of the night, maybe a bi-level is in order. (I didn't check what machine you are using.) Good luck in finding solutions. If it were me my first step would probably be to raise my lower pressure.

[Wulfman...]

What "kteague" said. Your pressure range is too wide and if you need higher pressures, it's not able to respond quick enough. And, if it did respond quicker, it would probably wake you up.
If you're adjusting your masks to a lower pressure, when the pressure rises, they're going to leak like crazy.

I see lots of issues in your post that, with some tweaking, could improve your experience.


Den

.

[SleepyToo2]

Do you have a breakdown of the kind of apneas? Are any of them central or clear airway? They can be caused by the pressure being too high. Insist that your sleep doc looks at that, and adjusts the pressure accordingly. You may need a different type of machine to get you sleeping properly. Tell us what kind of apneas you have (preferably with some charts showing the events) , and someone will be able to help you get this sorted out.

[Pugsy]

My AHI is consistently 7-15 everyday despite therapy. My pressures range from 7-20. I have obstructive events even with a pressure of 20.

What happened to
viewtopic.php?f=1&t=96033&st=0&sk=t&sd=a&start=15

by okcpa99 on Tue Feb 25, 2014 10:08 pm
Downloaded the software and this is what I got:

CPAP Statistics as of February 24, 2014

Details Most Recent Last 7 Days
AHI 2.67 3.60
Average Leaks 0.49 4.31
95% Leaks 2.40 21.60

I couldn't find any images of your reports in your posts anywhere. Would be helpful to see what you are seeing.
Are you still having the insomnia?
How many hours of sleep are you averaging? How many wake ups during the night?

[okcpa99]

I will try and get some data uploaded (but I do not have any of the data from the respironics machine).

As a side note - during my sleep study, I was having apneic spells lasting 100-180 seconds and my sats frequently went down to (and stayed in) the range of 70-72% for extended periods of time. I cannot remember what the percentage if the time was in the 70% range but it was significant. I am not skinny by any means but I am not obese either. I am 5'10" and weigh 180. My neck size is within normal limits but I have micrognathia (smaller lower jaw, set back too far).

It seems like I had a spell when things were going fairly good (for about 2 weeks - several months ago) but since then it has been a struggle.

My doctor thinks I may be rolling onto my back during the night. I never wake up on my back but I certainly could be rolling onto my back while I am sleeping. I will try sleeping with a body pillow to see if that helps keep me on my side.

As far as the machines go, my doctor has studied the algorithms for many of the machines (he has been doing sleep medicine since the 1970s and has published many articles). He likes the respironics algorithm because it responds a little less quickly to apnea events and then comes down quickly once the apnea is improved. The Resmed machine pressure goes up quicker and comes back down much slower. He feels the respironics method gives better results, however, my numbers were much, much worse on the respironics machine. He was very puzzled by this and is not sure if the respironics machine was just not as effective, or if my resmed machine is not measuring the events correctly. He said he usually does not see this dramatic difference between the two machines.

I fall asleep quickly but tend to wake up 1-3 times a night. Those awakenings correlate with more obstructive events (and higher pressures) or when I am freezing from laying in wet clothes (indicating I was having more events). I do not get too many leaks with the TapPap but, of course, they increase when the pressures go up. I just have to figure out how to keep the pressures from going up.

Almost all of my events are obstructive. I have some centrals but probably at least 90% are obstructive.

I take the provigil to help me survive throughout the day and it really helps. I just would really like to sleep better at night and not need it anymore.

I am going to stay hopeful that with a body pillow and a oral appliance and my cpap, that things will get better. My nephew is a dentist ad he is checking on the TAP-PAP combo appliance today and see how soon he can get it made.