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Just starting out

 

Hi All,

 

I'm new to CPAP and the SleepGuide forums; I got here a while ago by following links on Flickr when I was checking out photos of different equipment. But I've only actually been using a CPAP device for about one week now.

 

I've known I had OSA for many years; my first partner 20 years ago used to stay up half the night terrified that I'd never start breathing again... I snored badly and would stop breathing for up to a full minute at a time. I went for my first sleep study at my doctor's suggestion in 1995. It went poorly and turned me off; I remember a very clinical environment, a noisy machine, an big honkin' uncomfortable mask and being hooked up to what seemed like 40-50 wires. The diagnosis was OSA but my doc never prodded me to take it any further.

 

Fast forward to 2011... I've moved across the country, got new insurance, and have been to see a renowned sleep specialist. Recent (3 years +) symptoms include waking up 5 and 6 times during the night, frequent nocturia (every wake-up), and nodding off during the day at extremely inconvenient times like right after every meal, during meetings and even while driving.

 

The doctor was surprised when he met me, as he said I'm not a typical apnea candidate; I'm tall and slim, for starters. He looked for other clues in the checklist, like smoking, alcohol use, heavy caffeine intake -- I don't do any. He seemed startled when he looked in my mouth, and said I had the "highest palate" he'd ever seen (I don't know what that means) and suspected I might have congenital deformities predisposing me to OSA.

 

I went for a new sleep study in April 2011 at my local hospital. This time the setting was more hotel-like and, while plenty of wires were attached, it seemed much less intrusive. After observing me for 2 hours of sleep I was gently awakened and told I had considerably more than 42 episodes per hour, and they were going to kit me up for the remainder of the night. The tech seemed to know right away what machine and mask to use, meaning she didn't try but the one. I found the first pressure uncomfortable, and I think they lowered it slightly.

 

I came out of REM about 6 am and they started undoing me. Said she and her colleague observed no further episodes and they would send the report to my doctor. When the tech asked how I felt, I told her honestly I felt awful -- like a train wreck. She said that wasn't possible.

 

Saw my doctor again about 3 weeks ago and we went over the results. The visit was only a fraction of the time of the intake a month earlier. He said, "Felt great, didn't it? Getting a good night's sleep?" I said no, I felt exhausted after the sleep study -- it's in the report. He said that wasn't possible.

 

It took his office about a week to get my paperwork going and another week to get the DME company to get insurance clearance and the equipment to me. As I mentioned, I have been using the CPAP for a week now. It's a Philips SystemOne REMstar, basic model, not the Plus or the Pro. It does have an SD card for recording just nocturnal compliance (hours used). The unit is virtually silent (yea!) and has a heated humidifier attachment. It's hooked up to a long flexible hose with a Mirage Swift FX silicone nasal pillow system. The DME rep set it all up in my bedroom and told me to try to get used to using the machine without the humidifier. If I was still waking up parched after several days, I could start using the humidifier without the heater. If that was still uncomfortable, I could try the heater but shouldn't go above setting 2 (of 5). The CPAP pressure was preset at 8 (of 15), and he told me only my doctor could change it.

 

The first night was tough. I went to bed at 11 pm and woke up at 2 am in pain. My septum was so tender and sore that I couldn't keep the nasal pillows on for another minute. I took off the headgear and slept without CPAP the rest of the night, getting up about twice more.

 

Every night since then I have worn the mask all night, and slept through the night. All but the second night I have used the ramp feature. I tried no humidifier, but found I needed it as my bedroom is pretty dry; most nights I warm the distilled water in it to 2.

 

Here's where I need your advice... I still wake up wrecked, like in the sleep study. The best description I can offer is that I wake up feeling like I've been out late the night before, drinking heavily and got in a fist fight. It's like a hangover plus body slams. I'm sore everywhere... my chest, my face, I have headaches for about 2 hours after getting up (and I'm someone who never gets headaches). My nose is literally bruised, and it hurts too much to touch the septum. I'm not used to waking up feeling like a truck ran over me. On the plus side, I have absolutely no sleepiness during the day. Actually, I'm so awake I now have some trouble falling asleep, something I've never known. For years I've been fast asleep within 30-60 seconds of hitting the pillow.

 

So, am I "refreshed"? It's hard to say. I get the sense something is better, because I have more energy. But it's not focused energy; if anything, I'm more foggy and distracted during the day. I now feel like a robot on auto-control. My chest and lungs hurt, but I suspect that's because air is being forced into them where I used to be almost exclusively a stomach-breather before. My nose aches well up through dinnertime every day, and I have to be gentle with putting on the nasal pillows at night. But the headaches usually subside by about 10 am.

 

I called my doctor's office yesterday and asked whether I should tell the doctor all of this in advance of my mid-June followup. His receptionist said she'd let him know.

 

Well, that's my CPAP experience so far. I apologize that it's only a short experiment to report, but I wanted to get some input before deciding whether to ditch the whole apparatus. I see my doctor in a couple of weeks and I'm trying to prepare myself for what to tell him and what to ask for. I feel a little "pushed along" through the system... they had a pre-set idea of what machine, what setting and what mask to use during the sleep study, didn't take my feedback into consideration, and now I have precisely the same set-up in my home. It doesn't feel like anything has been customized to my needs and comfort at any point in the process. And most importantly, my nose is black and blue and I feel lightheaded and achy most of the time.

 

Surely this can't be right? Thanks for any thoughts you might have.

 

Chuff

Pompano Beach, FL

 

 

Views: 240

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Replies to This Discussion

Permalink Reply by Chris H on June 1, 2011 at 4:31pm
Hi Chuff, Getting used to pap is a process. The DME needs to set you up with the "best fit" mask , usually a mask can be exchanged in the first 30 days. if the straps are not adjusted when you are at treatment pressure, they can be painful. Do not ditch the equiptment. See if you can find an A.W.A.K.E meeting their is support there. If your mouth opens you may be loosing the benifit of pap .A full face mask or chin strap may be helpfull. Good Sleep,Chris
Permalink Reply by Mary Z on June 1, 2011 at 4:51pm
Please don't give up.  It took a long time to get properly diagnosed and treaated and it will take awhile to get used to the machine.  Like Chris H said there are many different types of masks.  You can contact the equiupment company that set you up and tell them your problems with the mask and try a new one.
Permalink Reply by Janknitz on June 4, 2011 at 11:36pm

It's a Philips SystemOne REMstar, basic model, not the Plus or the Pro. It does have an SD card for recording just nocturnal compliance (hours used).

 

This does NOT make sense.  There are three System One models:  The Plus, the Pro, and the Autoset.  If it is not a plus or a pro it is an autoset, and that IS a data capable machine.  Let's hope it is the autoset, because you need data!  

 

Please clarify which machine you have.  If you have a data capable machine, we can help you access the data (which may be there, but the DME locked you out) and help you see if you are getting any effect from the machine at all.  If your AHI's or leaks are too high, the machine will not work, but once we know what's going on, we CAN help.  

 

The model name (CPAP Pro with Cflex plus, CPAP Plus, or Auto with Aflex) should be printed just above the LED window.  Alternately, you can look for the model number on the bottom--DS150 (Plus) DS450 (Pro) or DS550 (Auto).  

 

Report back and we can help from there.  

Permalink Reply by Chuff on June 7, 2011 at 4:35am

I'd like to thank each of you for reading my intro and for your suggestions and support.

 

I telephoned my DME company last week for clarification on which model CPAP I have, specifically mentioning the Plus and Pro models. They told me it was not one of the commercially available System One models; it was a special one just for DMEs. I don't actually believe this.

 

Nothing is printed on the top above the LED window, but near the serial number on the bottom it says " Ref 150P". The DME company rep was adamant that the machine does not record AHI data, stating that it's rare that my doctor specifies that in the ordering instructions.

 

This past weekend I went out of town and didn't take the CPAP. My nose desperately needed the rest; the nostrils had begun to form tiny lesions, and the skin is peeling from all around my nostrils. It's still highly sensitive if I touch the septum in any way, but at least the bruises have subsided.

 

Here are some photos that might help determine what equipment I have.

 

Chuff

 

 

 

Attachments:
Permalink Reply by Chris H on June 7, 2011 at 4:11pm

Hi Chuff, If your Doctor did not specify "data capable" than your DME can provide what ever machine complies with your Rx. Balmex for chapped lips works well to heal nose sores. 
Their is a support network called A.W.A.K.E  google and see if you have a meeting near by.

Knowing your numbers will show how your doing and if their are things that need to be addressed.Machines are usually rented till paid for so if your Doctor will ammend the Rx you may be able to swap machines. Good Sleep,Chris       

Chuff said:

I'd like to thank each of you for reading my intro and for your suggestions and support.

 

I telephoned my DME company last week for clarification on which model CPAP I have, specifically mentioning the Plus and Pro models. They told me it was not one of the commercially available System One models; it was a special one just for DMEs. I don't actually believe this.

 

Nothing is printed on the top above the LED window, but near the serial number on the bottom it says " Ref 150P". The DME company rep was adamant that the machine does not record AHI data, stating that it's rare that my doctor specifies that in the ordering instructions.

 

This past weekend I went out of town and didn't take the CPAP. My nose desperately needed the rest; the nostrils had begun to form tiny lesions, and the skin is peeling from all around my nostrils. It's still highly sensitive if I touch the septum in any way, but at least the bruises have subsided.

 

Here are some photos that might help determine what equipment I have.

 

Chuff

 

 

 

Permalink Reply by Chuff on June 7, 2011 at 9:10pm

 

Unfortunately, because Balmex is a petrolatum-based product, I can't use it with the silicone nasal pillows. I suppose I could put it on when I wake up and wash it off when I got to bed. The DME told me yesterday absolutely no oil or cream products should touch the silicone at any time.

 

My next appointment with the doctor is Tuesday morning. I'll bring up the issue of data collection, as well as the comfort problems. Does anyone know whether the P150 on the bottom of my CPAP corresponds to the DS150 that Janknitz mentions above?

 

Despite my living in the most populous part of my state, the nearest A.W.A.K.E. group seems to be 4 hours away.

 

 

Permalink Reply by Anastastos on June 13, 2011 at 10:49am

Hello to everybody.

I have just joined SleepGuide. I have been using the CPAP,  S8 AutoSet Spirit II from Resmed. I have used the Quattro FX full face mask for about 2 weeks but there were leaks so I  have started 3 weeks ago  using the Ultra Mirage II Nasal Mask and the leaks have been minimised. In the beginning my nose used to ‘block up’ as soon as I put the Nasal Mask on and I had to use nose sprays to ‘unblock’ it, but gradually I got over it and use no sprays now.

However, I am having similar experiences to some parts of  Chuff’s description –

 I wake up feeling like I've been out late the night before,- . I get the sense something is better, because I have more energy. But it's not focused energy; if anything, I'm more foggy and distracted during the day. I now feel like a robot on auto-control.

I have no idea why this is happening, because a lot of things have improved, no waking up in the night for bathroom, no snoring and hence no sore throat in the mornings, no sleepiness whatsoever during the day and the readings on my CPAP for last night are as follows:-

Pressure – 12.0, LEAK-0.16 L/s, A.H.I.- 3.6, A.I.- 0.5, H.I.- 3.1, Hours-9.45

I appreciate that I have been using the CPAP for only five weeks but is it normal to feel like this ?-   foggy, distracted and like a robot on auto-control?  ( Thank you Chuff for the description).

Permalink Reply by Mary Z on June 13, 2011 at 2:00pm

Anastasios, I don't know that's it's normal or usual to  feel this way, but I have heard other people here and on other boards describe the same feelings.  You may have a sleep deficit to make up and may sleep longer than usual for awhile.  It just takes some of us longer than others to really start to feel better.  Is your doctor, his nurse, an RT, or a tech available for you to talk about these problems?  Hopefully within a few weeks you will no longer feel like a robot on auto-control.

Maybe some other members have more feedback. Good luck.

Permalink Reply by Chuff on June 13, 2011 at 2:32pm

 

Anastasios, I'm sorry to hear you're also having this result. I'll bet it's not that uncommon; maybe it has to do with the pressure settings that have been chosen for us to start out with. I've been giving the matter a lot of thought lately, and plan to bring it up with my doctor at tomorrow's appointment.

 

I have some good news about my headgear. I've been wearing the Mirage Swift FX upside down. I took it apart this weekend to try out some different nasal pillow sizes (DME set it up with medium and also left me with XS, S and L attachments) and to wash the gear, which was starting to carry an odor from the nasal infections it was causing. When I tried to put it back together again, I kept getting a strange twist in the headgear, so I tore open the plastic bag and consulted the manual. I'd been wearing the headgear all wrong! (DME had not demonstrated how to put it on when they brought the CPAP.) I'd been wearing it with the blue stretchy band over the top of my head and the adjustable silicone band around the back; seemed logical at the time to me. I wore it correctly for the first time last night, after a weekend off, and it didn't hurt.

 

However, I'm still headachey in the mornings and feel less focused than before CPAP. My chest feels like it's been unnecessarily "pumped full of air", but I'm sure an understandable contrast to my prior oxygen-deprived sleep. Nevertheless, I'm going to ask the doctor about possibly reducing my pressure from 8 to 6. My gut instinct is that it's too strong for what I need.

 

I also realized last week that I may be having a negative subconscious reaction to the CPAP based on watching my father die a few years ago. He came out of a surgical procedure in a coma and remained that way for 4 days, most of it on a respirator. He died after the respirator was removed. The CPAP makes me feel like I am on a respirator, like something else is doing the all the breathing for my body. Perhaps that's why I wake up with this eerie effect that I've been inflated unnaturally... Mentally I feel every day like I'm rising from the dead.

 

Maybe my doctor will tell me that all this is normal. Maybe it's just a matter of adjustment, to the CPAP or to my thinking. At least I don't have to change headgear right now. I'd still like a machine that captures AHI data, though, so I can at least tell if this treatment is helping.

 

 

Permalink Reply by Chris H on June 13, 2011 at 3:21pm
Hello Chuff and Anastasios, Good to hear you figured out the headgear setup .You are" waking from the dead" Before cpap you were inching closer to death with each apnea and hypopnea. You have sleep debt to catch up on and your body has to get acclimated to having good O2 saturation at night .You dont learn to ride a bicycle with out a few skinned knees .You are on the learning curve. When your body stops fighting and you finally relax and realise the machine is a good thing ,you will say I wish I had been diagnosed loooong ago.It is a process to get dialed in ,but it is well worth it. Good Sleep,Chris  PS; you are both normal for the amount of time you have been at it.It will improve.
Permalink Reply by Anastastos on June 13, 2011 at 3:52pm

Thank you both, Mary Z and Chuff.

I will see my doctor next Wednesday  for the first time after the initial sleep study  and definitely discuss it with him  and see what he has to say. Judging by the discussions on this forum,  I believe fellow sufferers can help with  more practical advice since they  live with the problem.


Permalink Reply by Anastastos on June 14, 2011 at 1:57am

               Thank you Chris for the encouragement. I absolutely agree about the learning curve   

                and wishing I was diagnosed a lot earlier.      

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