Normal progression or is this the best it gets?

[quote="thimarine"]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.

Snorkel. It took me two years to get my machine from the VA. The local clinic requested the study in 2005. I had the first sleep study in late 2006 and then one with a cpap machine in Jan 2007. I got my machine April 14, 2007. The sleep study had to be done at IU Med Center because the local VA no longer has a sleep study room. My next follow up is in August. However, I have a sleep tech I can call. He gives practical tips but I can tell he is stressed out. He ordered a nasal pillow mask for me when I got a sore on my nose from my full face mask. He told me to read the literature or go online to figure it out. He was nice enough but I could tell he wanted to get me off the phone. There's just too many of us and not enough funding. Budge was 1B short this year but the administrators gave themselves a $30m bonus. No political statement intended. That's just the way it is. I don't know how it is in other areas. I can only speak for my area which is Indiana/Illinois.

As to your question about setting everyone on auto, I think it's just the new people. There were others there picking up new machines that were bipap. Some of the people there (when I picked up my machine) had been on cpap for a couple of years and their equipment was outdated.

Hi thimarine,
I wanted to throw in in case any of this could help. Three years ago at age 41 I had to go to the bathroom all day and night (no.1) and I was sleepy all day. Not a good combination to be trapped in the radar control room
with only periodic bathroom breaks, and dozing at the scope!

Finally I went to the urologist who measured my low flow, tried dialation, didn't help, tried Flomax, helped a little but the Flowmax sapped my energy bad. It could be hurting yours.
Ultrasound showed that my bladder never emptied but stayed half full even after going. Finally I gave in and had the old standard TURP surgery to bore out the prostate passage. What a cure and relief that was! I can go like my 12 year old son now. I have not had any side effects at all from the TURP after a few weeks of recovery.
You do NOT have to live with trouble flowing or unwanted medication.

That solved, I went to the sleep doctor and got a Cpap. After many weeks I got some alertness. I wear a pillowy light-blocking eye mask from sleepessentials.com around my chin and top of my head under my Cpap straps as a gentle chin strap, and nasal pillow mask that solved air leaking. The bigger nostril size was necessary to not feel like suffocation, even though they were uncomfortable at first, my nostrils adapted.
After a long time of adapting to the Cpap it is easy to sleep with. I try to get drowsy, almost asleep first, then slap the mask on in the dark.

I have finally realized a lot of my lack of energy after starting Cpap was from my body's reaction to eating too much flour and sugar, not enough exercise, and going to bed too late. I have had some improvement from
adjustment of diet and exercise. Good luck with it.

[quote="thimarine"]Snorkel. It took me two years to get my machine from the VA. The local clinic requested the study in 2005. I had the first sleep study in late 2006 and then one with a cpap machine in Jan 2007. I got my machine April 14, 2007. The sleep study had to be done at IU Med Center because the local VA no longer has a sleep study room. My next follow up is in August. However, I have a sleep tech I can call. He gives practical tips but I can tell he is stressed out. He ordered a nasal pillow mask for me when I got a sore on my nose from my full face mask. He told me to read the literature or go online to figure it out. He was nice enough but I could tell he wanted to get me off the phone. There's just too many of us and not enough funding. Budge was 1B short this year but the administrators gave themselves a $30m bonus. No political statement intended. That's just the way it is. I don't know how it is in other areas. I can only speak for my area which is Indiana/Illinois.

I'd like to chime in on the medication thread. I am also taking Provigil, and like Linda, it has saved my job. I read up on it and found that Provigil doesn't affect you like stimulants do because it doesn't affect the central nervous system. It just affects the area of the brain that is related to arousal, therefore it helps to keep you awake.

Frances

Last night I slept from 11:15 p.m. bedtime to 7:00 a.m. without getting up and without having to go to the bathroom. Only the second time I've done this in the 6 weeks I've been on cpap. I started mouth taping two days ago and the change has been wonderful. I have a headache in the back of my head and a stiff neck but realized that I haven't slept the who night through since the 1980's and I think I actually have some pressure sores and achiness from sleeping so much. I did get a mark on my face from the tape. I'm using micropure paper surgical tape and I ripped it off really fast this a.m. because I was in a hurry. Didn't have a problem the first day. I'm telling you, the taping works wonders. I know it's been only two days, but I'm cautiously optimistic. Thanks again to everyone for the suggestions and encouragement.

thimarine:

Ever considered a full face mask???

had a full face mask. The sore on the bridge of my nose took over 2 weeks to heal. Before I got the nasal pillows I had to cover it with blister pads which caused ana imperfect seal which caused more leaks. As far as the one that covers your whole coconut, no, I haven't considered it and I really don't want to and I'm not sure that the VA would give me one even if I asked. At some point, when my nose isn't still tender, I'm going to try the full face mask again and hopefully not repeat the same mistakes that caused the ugly infected blister. But thank you for your input and for asking. I appreciate everyone's thoughts.

thimarine,

I'm with you on the full face mask. I'm an Industrial Hygienist and work in safety & health. One of my responsibilities is to train and fit workers for respirators and I wear them myself. I know from experience how uncomfortable a half face respirator (equivalent to a full face CPAP interface) can be and how hard they are to fit. The bridge of my nose can only take so much even with the most comfortable one I've been able to find so I just knew going in that I wasn't going to be able to sleep with that thing over my nose and face. For that reason I started off wanting nasal pillows and got the Breeze. My nose was sore at first but once I got the right size pillows it was okay. Then I discovered I mouth leak and after a failed night with Polidnet I tried taping. And like you I seem to be doing well with it. The last three or four nights I've slept straight on 'til morning (after turning at the second star to the right ). A kind soul here sent me a Hybrid to try so I'm going to give that a go to see how I do but ironically enough it arrived about the same time that I started seeing progress with the tape.
As far as getting up to go to the bathroom, I'm 48 and was getting up once every night to every other night. In about six weeks on CPAP I've only gotten up once. Fine the rest of the day but morning output seems to have decreased.
Hang in there, you're not alone.

TWolf