My start on CPAP.

[brajande]

New to CPAP, started on the 3rd. Adjustment is an adventure for sure. Picked up the machine from the DME, decided to try the activa nasal mask that was provided during my titration study (They gave me two, would save some money if it works). I slept well during the titration study, so I was ready for my first night. After some extensive reading on this site, I made a few changes to my bedroom as soon as I got home. I built a shelf between my nightstand and my bed, Looks good and works great. I then used picture wire and wall hooks to route the hose above my head, as I tend to turn a few times during the night. I was ready. First night (day, I am a night shift worker), slept maybe 2 hours, was on the mask for 5 hours, just could not sleep. Took about an hour to fall asleep, and as soon as I woke up, I turned on my back and got a nose full of rain. Not a very courteous alarm clock. After scaring my wife half to death with my coughing/gagging (I swear it felt like 3 oz of water straight into my lungs), I took a moment to relax myself, and tried to fall back asleep. After two hours, I just could not get past thinking about my breathing. Okay, breathing too deep, now too shallow, now too fast, oh poop, too deep again... I assume many of you have experienced the same thoughts the first few nights. Well, I was awake anyway, no sense in trying to sleep now, noon is a rough time to wake up (think 2 am nightees ). I will surely be tired tomorrow night, and should have no problems sleeping. I felt pretty much unchanged after my "nap."

Alright, time to get serious about the CPAP comfort. Adjusted humidity level, bought a $3 scarf at walmart, and built a rig using rubber bands and id holders to better manage the hose. Thought I was a genius, and was going to post directions, pictures, awesome reviews, unfortunately someone smarter beat me to it. See the BOSS management system. My set up is certainly not as sexy as his set up, but it works for me. So, around 6 am on the 4th, I decided it is time to go to bed. Fell asleep pretty quick. Slept about 4 hours on my back, woke up. Wide awake. No luck falling back to sleep. Could not sleep on my side, mask keeps leaking. But, at least there was not early morning bath for me. Looks like I am going to adjust to CPAP well. So I thought.

Had to work the night of the 4th, got home at 0800am on the 5th. Relaxed for a short while, then time for bed. Pretty exhausted, definitely ready for sleep. Put the mask on at 0900, and closed my eyes. After continually adjusting mask position and tightness, I opened my eyes, now 0945. Reset the ramp, lets try this again. Mask keeps leaking, opened eyes, now 1015. Now cranky . Okay, lets try this again, this time forget side sleeping, try sleeping on back. Eyes closed, thinking "I would love to sleep on my side." Please oh please be quiet brain... Eyes open, 1100. Oh boy, need to get up for a while to relax. Took off my mask, face hurts, red lines around nose, feels like razor burn, there has to be some answer for me. On to CPAPtalk.com.

After some research, now considering that I might need to make a mask change. My insurance has not bought one yet, so what do I have to lose. Call to the DME. (I don't want to start a DME conversation, unfortunately I have no choice, I have an employer sponsored health insurance, which just happens to only support the employer owned DME, sleep centers, and sleep docs. What can you do?) Unfortunately, it is Friday 1130. No appointments until Monday. Cannot show up at an office and pick up a nasal pillow mask. Nope, have to go through a whole fitting appointment. Have to wait until Monday. I guess no sleep for me this weekend. I know, I know... I get cranky when I don't sleep well. Luckily I talked with the respiratory therapy director. Got some good advice about the activa mask. Guess I will try it. Back to bed around 2pm. Slept until 4pm. Maybe 1.5 hours sleep. Better than nothing I suppose, but I am too tired to function, and it is snowing like mad outside. Cabin fever is about to set in.

Alright, after an extremely boring, frustrating, and long day, time to sleep again. (Now the 6th at 0600) Unable to sleep, have to keep adjusting mask. Forget it, mask off, machine unplugged, I will try to sleep the way I used to. After about 10 minutes, realized if I give up, I will never get passed this awkward stage. Time to watch some TV and try to relax. Now 0800, decided to take a knife to my memory foam pillow, and scissors to an old T-shirt. Already feel better. Made an open area where my mask can sit while I sleep on my side, and made a "pad" out of my T-shirt that covers the bridge and sides of my nose. Mask now not leaking much, when I sleep on my side. I was able to adjust it easier. Fell asleep pretty quick. Noticed, I do not think about my breathing patterns, I just don't. Pressure does not bother me. I don't even use the ramp feature. Slept for about 4 hours. Unfortunately had to wake up. Did the usual routine when I awaken while sleeping...bathroom, water, stretch. Then back to bed. Took a little longer to fall asleep. Having to keep adjusting the nasal mask, and the T-shirt thingy does not stay in place. Amazingly, I was able to fall back to sleep. This time for about 2 hours. Now I feel as good as I did before starting CPAP therapy. Maybe there is still hope.

About to go to bed now. Still plan on visiting DME monday to get the swift LT nasal pillows. Will try the Swift FX if the DME has it available. But, I am at least a little hopeful that I might get a little good rest tonight. Thanks again to everyone on this site. You have made CPAP more comfortable for me, and have given me the hope to continue trying. I told my wife I was done with it after my 1.5 hour of sleep night. At least I was not going to try again until I got a different mask. Because of the advice on this forum, I have stuck with it. I know I am not out of the woods yet, but at least I am on my way. Maybe things will significantly improve with a different mask, at least now I am able to deal with the pressure of the CPAP, and am used to breathing with forced air in my nose.

I still have a long way to go. I have seen a lot of self proclaimed "newbies" on this site, including myself. I just wanted to share my story, so that others can see that many people have struggled getting used to a new CPAP device. I hope that getting a new mask will be a giant leap in the right direction. Who knows, it may be harder to sleep with the Swift. Only time will tell.

[Geminidream]

Good luck on your new journey....I am a newbie as well (been on CPAP therapy since Dec. 17th 2009). I have struggled with the usual adjustments too, but it is so important to stick with it. Your quality of life depends on it. You will find this forum is a fantastic place for ideas/advice/support. Welcome!

[pb5927317]

I am glad I am not the only one. I have three different masks that I rotate through during the night. Last night was probably my best night so far. I took a melatonin, Ambien CR, and a shot of Crown Royal. I think I woke upon once and used my machine for a whole 9 hours!

My BP is 130/84..so I dont think it was the best nights sleep, but I slept.

My pressure is at 20 and needs to be 24. So I believe this week they are going to be putting me on bi-pap. And they said I shouldnt feel over pressurized. Actually, I feel so pressurized, I am pretty sure its I need to stop leaking from all ends

[KatieW]

Brajande, welcome to the forum. Your descriptions were so vivid and real, it brought back memories of my 1st few weeks. Yes, hang in there, it will get better. You've done some good comfort adjustments, now it's finding the the right mask for you.

[dtsm]

I'm in week 5 of 'therapy' and although my numbers aren't the greatest (see other post), I know it's a long journey and will take time. I was unable to fall asleep with the mask on (actually tried two different masks) at night. Tried 60-90 minutes the first few nights.....so I punted and took the high road. Went to bed w/out the mask on, set alarm for 90 minutes later and then put the mask on - it worked for me. Able to fall back to sleep and average 7 hrs per night with it.

Now after finally settling in on mask #2 (EasyLife nasal mask), and two weeks with this mask, I tried last two nights to fall asleep with the mask. Friday was easy cuz I was dead tired, last night, took 60 minutes but did fall asleep. Tonight's Super Bowl Sunday so might be too hyped after the game to fall asleep with the mask, who knows?

Anyway, my newbie advice - relax, every night's a new adventure in the beginning, everything takes time to adjust to - the fitting of the mask, the noise of the exhalation port, weather changes, how you feel each night before bedtime, etc. etc. It will improve, it will get easier and long term we'll all benefit.

Be well......

[sleepycarol]

Welcome to the forum!!

I am glad you posted your story. It makes others feel not quite so alone in this rather complicated journey.

I am proud of the way you are hanging in there. Before you know it, you won't be able to sleep unless you are masked up.

[rheumrn]

I started cpap on 1/18/10 and am trying to get the best therapy I can. My two sleep studies showed that I had 40 to 60 events per hour with my O2 sat dropping below 60.

I am the proud owner of: Contour cpap pillow, finger pulse oximeter, neti pot, BreathRight nasal strips, numerous chin straps, bed wedge (GERD) and Aussie heated hose. I am eagerly awaiting a Regenesis (buckwheat) pillow and a Papcap to help deal with my receding chin and mouth breathing. I sleep only on my back now but may try to experiment with side sleeping if I can.

I have tried to reduce leaks by tightening the lower straps of my mask (small Quatro full face mask) very tightly. I don't hear a "large leak" but my numbers seem to indicate I have them. I want to try a hybrid mask to see if my AHI improves.

I may take my SD card to my DME next week to see if they have any suggestions. While I am there, I will check out the hybrid masks. It seems that buying different masks can be expensive but may be a necessity to determine which one works best for you. I don't want to wait 3 months to have my insurance pay for another mask.

Last night's numbers from my PR System One REMStar Auto cpap with A-Flex and heated humidifier at "2":
(7 days/ 30 days)
Therapy hours= 7:42/7:36; Large leak= 11%/21%; AHI= 10.9/8.7; Periodic breathing= 1%; 90% pressure= 16.2/13.8

Good luck to my fellow newbies and thanks for the helpful tips from the forum members!

[JohnBFisher]

... I started cpap on 1/18/10 and am trying to get the best therapy I can. ...

I was going back through older posts and found this. So, let me say clearly and loudly, Welcome! I will also PM you so you know we noticed your post. Sorry it took so long. Sometimes adding a reply at the end gets missed. But we try our best.

... My two sleep studies showed that I had 40 to 60 events per hour with my O2 sat dropping below 60. ...

O2 at or below 88 is the criteria for needing supplimental oxygen. As you might imagine, a low O2 value is really bad for you body and brain. I assume with CPAP your O2 levels were good. And if you have not seen, untreated the complications that result will literally kill you.

... I am the proud owner of: Contour cpap pillow, finger pulse oximeter, neti pot, BreathRight nasal strips, numerous chin straps, bed wedge (GERD) and Aussie heated hose. I am eagerly awaiting a Regenesis (buckwheat) pillow and a Papcap to help deal with my receding chin and mouth breathing. I sleep only on my back now but may try to experiment with side sleeping if I can. ...

You've really gone all out to make this work. Good for you. I'm thinking I might pick up one of those CPAP pillows. Part of the reason I only sleep on my back is to be certain that I don't dislodge my mask. A pillow that allows me to turn on my side would be great. Of course, I would still want to sleep on my stomach. That I miss the most.

... I have tried to reduce leaks by tightening the lower straps of my mask (small Quatro full face mask) very tightly. I don't hear a "large leak" but my numbers seem to indicate I have them. ...

I also have and like the Quattro full face mask. Often the leaks occur when we are in REM sleep and our muscles are very relaxed. I sleep through them. I once asked my wife if my mask leaked at night (before I got the leaks under control). She said that if sounding like a ten gallon tea kettle qualified, then yes, she was pretty certain my mask leaked! And here I thought it was not too bad!

... I want to try a hybrid mask to see if my AHI improves. ...

It might. The hybrid includes the different size pillows in the same package. I am also interested in the Hybrid.

... I may take my SD card to my DME next week to see if they have any suggestions. ...

That's a great thing to do as you start up. This will allow you to see what the numbers say. As I've noted, when my mask leaks I feel horrible the next day. So, getting that under control has been a big help. Knowing the numbers can help you get the most out of your therapy. Eventually, your unit will have software (a new version of the EncoreViewer software) to read the SD card.

... While I am there, I will check out the hybrid masks. It seems that buying different masks can be expensive but may be a necessity to determine which one works best for you. I don't want to wait 3 months to have my insurance pay for another mask. ...

Some DMEs will allow you to exchange a mask within the first 30 days or so. Mine Respiratory Therapist (RT) at my DME sometimes offers me sample masks he receives. He just asks that I offer him my impression so he can guage what will work as he talks with his other patients.

... Last night's numbers from my PR System One REMStar Auto cpap with A-Flex and heated humidifier at "2":
(7 days/ 30 days) Therapy hours= 7:42/7:36; Large leak= 11%/21%; AHI= 10.9/8.7; Periodic breathing= 1%; 90% pressure= 16.2/13.8 ...

Let's see:

• Therapy Hours - Great for someone who started less than a month ago!
• AHI - As you've noted it's high, but definitely better than it was!
• Periodic Breathing - At 1 percent it's probably not a big issue.
• 90% pressure - Hmmm, It's up for the past week. It might just be an artifact of a new unit (less than 30 days old).

So, considering you have used this unit for less than one month, you are doing brilliantly!

... Good luck to my fellow newbies and thanks for the helpful tips from the forum members! ...

Thank you! And again, welcome to the forum. You appear to be a member who will try to make this work. In fact, you've come a long way already. Don't be surprised if you run into roadblocks. I've been at this for almost 20 years. I still find that I sometimes need to tweak things and adjust as my body changes and life tosses new curve balls my way. This is a great place to come for ideas and the moral support to stick with it.

[Jersey Girl]

Could not sleep on my side, mask keeps leaking. But, at least there was not early morning bath for me. Looks like I am going to adjust to CPAP well. So I thought.

Eyes closed, thinking "I would love to sleep on my side."

Wow, you certainly went through a lot of preparation! I personally use a Contour Pillow that is made from memory foam. It has gentle cut outs on the bottom corner of BOTH sides so that when you turn on your side, mask and tube are out there freely and no leaks!

I am currently using a Comfort Gel nasal mask, but would like to use nasal pillows, but I seem to have trouble breathing with the pillows, so I am still using the nasal mask. As to rain out, or moisture build up inside the mask, I found that when the room temperature is cold, say 62-66 degrees, I get more rain out than when the room temperature is a little warmer. Also, I keep my humidifer on low - about 3 clicks.

Welcome to the world of CPAP!

Warmly,

Jersey Girl

[JohnBFisher]

Jersey Girl, nice avatar! Reminds me of many hours spent on the Jersey shore.

And that's a good post for your third. Who says their own experience doesn't matter? That's the type of post that matters the most. Someone else who's on the same journey also learning how to make it work. Good job!

[brajande]

Update... Picked up the Swift LT today. Looks like the activa mask was too large for me, and they do not have smaller sizes than standard. So, I tried two other nasal masks, then ended up trying the swift LT pillows. The other masks (Comfort gel, and Zest) fit much better than the activa, and had less leaks with head turns. I had to push the mask with my had to the side pretty far before I got a leak, probably 1/2 to 3/4 inch displacement without leak. I certainly would not let there be that much pressure on my nose when sleeping. Unfortunately, they seemed pretty "heavy" on my upper lip. Either the masks were too tight, or my upper lip is still sore from the activa. I asked about nasal pillows, the DME put the swift LT on, and I was in heaven. No pressure on lip, straps are comfortable, although I will probably buy the strap covers as they feel a little hard when sleeping on my side. What was amazing... I slept 6 hours last night with the activa, only waking up once. I guess my body finally gave in. After picking up the swift LT, I returned home, and tried to take a nap (I never take naps, unless I am really tired and have to work, and usually cannot fall asleep easily when I try.). I put the swift LT on, and woke up 3 hours later. Slept on my side, no issues with comfort. Nostrils a little red, but plan on picking up some water based lubricant to help moisten my nose when I am not wearing the mask. I am excited, my CPAP adventure is getting better. Let's hope this mask continues to work well for me.

Morale of the story: A proper fitting mask is essential to success. This has been repeated numerous times from the many members on this site. My advice, when you pick out a CPAP mask, either during your titration study, or from a DME, do not allow them to only try one mask and tell you it looks comfortable. Insist on trying different styles and different manufacturers. During my titration study, it took less than 2 minutes to select my mask, mostly because I was tired and did not want to try many different masks. Today, my fitting appointment took 45 minutes to try three masks, but I was persistent in trying the different sizes of each mask, and did not accept the first mask that was suggested, even though the therapist had a lot of success with placing this mask with other patients. Well, it is not comfortable for me, so try again. "Therapist", actually the respiratory therapy manager, guess I ruffled some feathers when I told them I was upset that I had not slept all week, and they were going to make me wait through the weekend before I can get a mask. Like I said, I get cranky when I don't sleep well. Luckily my wife was great to point that out to me all weekend. I happy now!!