Normal progression or is this the best it gets?

thimarine · Post by **thimarine** » Tue May 29, 2007 6:52 pm

I am in my 6th week of cpap. I have a new mask. I started with a comfort lite 2 full face mask but developed a terrible sore a the bridge of my nose and struggled with leaks all night long. About 10 days ago I got an opti life 2 nasal pillow mask. The first two days were great, then not so much, then sort of every other day is a good day with no drowsiness, then it seems like I'm worse again. Not as bad as before, but still some drowsiness. I have a remstar auto cpap set at 8-18. 30 day avg is now 14.2. Last week it was 15.4. I like the nasal pillows. I don't struggle with leaks. I still get up to go the the bathroom 2 times per night. I night I slept through the whole night. Is this a normal progression. Does the drowsiness every completely go away? I'm 57 and have probably had sleep apnea for the past 20 years. I don't fall asleep in church anymore and the drowsiness doesn't lead to nodding off anymore. I would just like the drowsiness to go completely away. There are days when it does. Is this the best I can expect or does it get better? Thanks.

Wulfman · Post by **Wulfman** » Tue May 29, 2007 8:55 pm

If I were to take a "wild" guess......I would say you're mouth-leaking. Many folks with nasal masks have this problem and don't know why their therapy isn't working.....(their mouth falls open when they fall asleep).
Your main options are taping your mouth shut, Polident adhesive strips to seal your lips or full face masks.
Please check out this thread.

viewtopic/t8011/Links-to-Mouth-leaks--A ... Guard.html

Best wishes,

Den

kteague · Post by **kteague** » Tue May 29, 2007 9:02 pm

Does it get any better? I'm counting on it! So far it is still going in the right direction for me.

You mentioned your pressure but not your AHI, leaks, etc. That info is a good indicator of if you are on the right track. I'm not the expert here, but seems your pressure range is quite wide. If it takes a pressure of around 14 to fix most of your events, it has to chase them quite a ways from down at 8. Who decided on your pressure range?

Getting a comfortable mask that doesn't leak is key. Keep doing all you can to help yourself until everything works well together to give you the rest and resultant energy you need. An off day now and then happens, but it shouldn't be what you regularly experience.

Best wishes.

Kathy

track · Post by **track** » Tue May 29, 2007 9:53 pm

At 57 you are going to get drowsy at times...it comes as we get older...that's my take anyway. I have two dogs....one is the equivalent of a 15 year old and the other a 60 year old. Guess which one has the most energy...guess which one sleeps all the time.
I am 59 and I have been on cpap since christmas. I feel better than I did prior to cpap but it's not some miracle turnaround for me... I still get tired....but then I only sleep 5- 6 hours. When I was younger I could sleep 8 or 9 hours at night. When it was 10 PM I was ready to go out and party in my 20s...now I am not ready to do much of anything other than be a couch potato at 10 or post here on cpap.

thimarine · Post by **thimarine** » Wed May 30, 2007 6:16 am

My pressure was set by my provider-- the VA--when I got the machine. I have a follow up in August to check the info on the card. I have no idea how to check it myself. Is there a way to find out how many leaks and what the AHI is? Thanks for all the responses.

Guest · Post by **Guest** » Wed May 30, 2007 6:42 am

I have a resmed machine and every morning it tells me when I get out of bed what my 95% pressure was that night, the AHI, the AI, The HI, and the leak rate for the night before. I just push a couple of buttons and it appears on a little screen on the machine. I can also set the pressure to whatever I want by pushing a couple of buttons on the top.

tangents · Post by **tangents** » Wed May 30, 2007 6:48 am

Hi Thimarine,

Maybe others can chime in if I'm off base, but two trips to the bathroom per night sounds to me like a classic symptom of sleep apnea. So that makes me wonder if your apnea is being adequately treated. I agree with Kathy that your lower pressure might be too low, and by the time your machine ramps up you've already experienced an apnea event.

With your machine, you can access the data via the smartcard, but since I don't have the Respironics, I can't comment on this. I'm not sure if you can still get the software or not. If you assume you are mouth breathing and try some of the fixes on this forum, and start feeling better, then you'll have your answer.

I'm very grateful to all of this country's veterans. Good luck to you, let us know how you're doing.

Cathy

oceanpearl · Post by **oceanpearl** » Wed May 30, 2007 4:59 pm

Getting up to go pee twice a night comes with the territory as you get older. Mine didn't have anything to do with Apnea.

NEVER GET BETWEEN AN OLD MAN AND A BATHROOM!

thimarine · Post by **thimarine** » Wed May 30, 2007 5:41 pm

Thank you to everyone who posted a response to my questions. I am going to try the mouth taping. I have read the suggested threads and what they had to say about taping. I have learned more from this forum than I have from the VA. When I got my machine, it was pretty much a pat on the back and a "good luck with that." But, I figure I can learn on my own and would rather the VA spend more time with our younger veterans coming back with PTSD and head wounds. I appreciate Cathy's comment. I'll let you know how the taping goes. By the way, I have been treated for BPH and take Flomax, so two trips to the bathroom are an improvement for me. I forgot to mention that. I was thrilled when I went one night without getting up once. There just seems to be this ebb and flow of days with really great energy and no tiredness to days where it's almost like before treatment but not quite as bad. I'm learning. This forum is great. Again, thanks all! (BTW the thi before Marine are my towns initials and my state--- Terre Haute IN)

Lea · Post by **Lea** » Wed May 30, 2007 7:55 pm

I’ve been on CPAP about the same amount of time as you, and I’m still tired. I have a ComfortLite2 and use the nasal mask. At first I had some problems with the mask leaking, but now that I’m getting use to adjusting it, etc…I think it’s fine. My GP tells me that some things in your body can change due to apnea, one being your sleep cycle. By what I hear it seems like recovery time is different for everyone.

I was taking Provigil for a few days to help my energy level, but it made me sick. My sleep md is going to try me on it again in a couple days. We’ll do a very low dose for a week to let my body adjust. If you don’t feel better soon you might want to consider trying a medication.

I would be interested to know how you're feeling in a few weeks. Good luck with your recovery!

thimarine · Post by **thimarine** » Wed May 30, 2007 8:26 pm

Lea thank you. One thing that puzzles me is that my 90% numbers have dropped since I started using nasal pillows. My 30 day average went from 16 for 30 days and 15.2 for 7 days to 15.2 and 14.2 last week and now this week they have dropped to 13.2 for the 30 day cycle and 11.2 for 7 days. I have only had the nasal pillows since May 18 (13 days), so I'm at a loss for what the numbers mean. I am new to this and don't know if that means I'm not getting the therapy I need with nasal pillows, if there is something wrong with the machine or if the taping will help. I'll report back. Please let me know how you are doing especially if you go back on medication. I have read about it but it has never been suggested by my doctor. I'm not in a situation where I can call my MD as it's pretty much a catch as catch can at the VA and wait your turn. I'm not complaining. That's just the way it is and why I find this forum so useful. I apologize for asking all these rookie questions, but I'm getting great feedback.
Thanks again.

DeltaSeeker · Post by **DeltaSeeker** » Wed May 30, 2007 10:17 pm

thimarine,

I'm on Provigil 200 mg/day and it has saved my job. I still get drowsy about 2:30 or 3:00 in the afternoon but at least I'm not falling asleep at the computer anymore (hence the avatar pic) or at least not if I get a decent amount of sleep at night (like I should be in bed right now and not "chatting" on cpaptalk).

It doesn't make my heart race like other stimulants do (sudafed for example) and I don't feel all "speedy" (hate that feeling). I just feel wide awake and chipper most of the time.

Oh, and oceanpearl - no one had best get between me and the bathroom at night either! They'll get knocked over and knocked out Ain't no fooling with me. Heck, I'm only 49 and I have that problem

thimarine, I was in Indiana this weekend - Nappanee - with my kids visiting Amish Acres. Giving them a social studies lesson and a fun time at the same time . I know what you mean about waiting your turn - I was an Army brat myself. My father was a career man. Started in the Army and ended his career in the Navy. My parents were divorced when I was 2 but I still spend many days at the 5th Army Hospital waiting around. I actually miss that building

BTW, you have as much right to quality treatment as the younger folks coming back do. Their needs might be more urgent at the moment, but OSA is also a life threatening disease! You have served our country and therefore deserve our respect as well. All our vets, young and old, deserve to be treated with admiration and respect.

Linda

tangents · Post by **tangents** » Thu May 31, 2007 6:45 am

Hi Indiana Marine!
My pressures are way higher when I use the hybrid, and a little higher when I use my nasal mask than when I use the nasal pillows. My advice (for what it's worth) is to work on your mouth leakage, and see if things settle down andyou start to feel better.

Best of everything,
Cathy

TWolf · Post by **TWolf** » Thu May 31, 2007 7:29 am

Hi thimarine,

I've been doing this about the same amount of time as you so I'm a newbie too but I thought I'd chime in since my experience is related. I use a Breeze with nasal pillows and I soon discovered that I too was leaking from my mouth. I just wanted to comment on the use of tape. Following advice that I got here from all the taping threads, I've been using 3M Nexcare Gentle Paper tape. It hasn't irritated my lips or face and even though it sticks very well and stays in place all night, it comes off pretty easily. I have a moustache and I haven't had a problem at all. Also, you may experience a problem refered to around here as "blowfishing". It happened to me and once again I came back here to CPAPtalk for an explaination and solution. It seems that mouth leakage occurs not only when your mouth opens during sleep but also because your tongue falls back and loses the "seal" at the back of your throat. If you tape and your tongue continues to fall back the air doesn't have anywhere to go and you blowfish. This was causing arousals and was driving me crazy. The solution, at least for me is to leave a small part of you mouth untaped as sort a "relief valve". You'll have to play around with how much to leave open - too much and you'll keep on leaking, not enough and you'll keep looking like Dizzy Gillespie. Just my $0.02. Hang in there.

TWolf

thimarine · Post by **thimarine** » Thu May 31, 2007 12:49 pm

Twolf and tangents. Thanks. I tried the taping last night. As opposed to yesteday, which I would rate as a 1 on a scale of 1 to 10 (10 being the best), this morning was an 8 and I still feel pretty good at around 3:00 p.m. with increased energy level. Went to bed at 10:40 p.m. and got up only once at around 5:00 a.m. to use the bathroom. When I got up at 5, I felt air against the tape but felt like I felt the first few days I started using the nasal pillows. I'm anxious to see what happens in the next few days. I went to the thread someone suggested about the taping using chapstick and nexcare surgical tape. No problems getting it off in the a.m. and no breathring problems. The fact that I felt pressure when I got up at 5 would seem to indicate mouth leaks. This is really a great forum. I appreciate everyone's help. I hope someday I'm able to contribute instead of doing all the asking. Again, thanks all.

Mask

Additional Comments: Started w/FP431, got UMFF med. 5/10/07, got UMFF sm 6/12, tried Swift 6/16/07 (no good 4 me), I think the Hybrid (8/5/07) is IT!!!!

Mask	Software

Additional Comments: Strictly a side sleeper

Normal progression or is this the best it gets?

Normal progression or is this the best it gets?

Does it get any better?

normal progression (who set pressure)

normal progression

normal progression

normal progress