still not sleeping, BP going up, maybe giving up

[dogluvr]

I've been on cpap now for 10 days, and not only has my quantity of sleep diminished greatly, but my blood pressure has gone up . I am normally 114/72 or thereabouts (even at several dr's appts in the last couple of months) but at recent checks at a wellness fair at work (a hospital) and at an automated machine at a pharmacy, I am about 144/90. I am sure it's because I've been sleeping so little lately. I fall asleep fairly quickly but wind up waking up within 2 or 3 hrs and only sleep sporadically afterwards. I usually wind up taking the mask off after 4 or 5 hrs of trying, but that doesn't necessarily help me fall back to sleep. Talk about frustrating, I'm getting to the breaking point. I called my dr's office yesterday and left a message with her nurse, but did not get a return call. And by the way, it's not due to the mask leaking or anything, as the readouts on my apap are indicating no leaks.
Has anyone out there experienced this? I've been willing to give this some time, but it's only getting worse. I tried ambien the other night and yes, did sleep about 3 1/2 hrs but that's about it and my husband said I sounded terrible, worse snoring than he's ever heard and generally he says I don't snore much at all let alone real loudly. I am going to try some 5 mg melatonin tonight and for the next few to see if that helps. If that doesn't help, I may give up. My BP and overall quality of life was better prior to starting cpap.

[Pugsy]

Snoring?...Usually means mouth breathing and/or ineffective therapy.

Do you have the software to see for sure what is going on?
Available here in Uncle Bob's signature.
memberlist.php?mode=viewprofile&u=38643

Tutorial on how to use the software here.
http://montfordhouse.com/cpap/resscan_tutorial/

Let's get some reports to see if something in your therapy needs some improvement.
If you will post a typical night's detailed reports someone can offer ideas that are more specific than "give it time".
We need more information so we can see what might be causing problems.

Don't know how to post image of a report. I use screen shots. Here is how I do it.

Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

[robysue]

I've been on cpap now for 10 days, and not only has my quantity of sleep diminished greatly, but my blood pressure has gone up . I am normally 114/72 or thereabouts (even at several dr's appts in the last couple of months) but at recent checks at a wellness fair at work (a hospital) and at an automated machine at a pharmacy, I am about 144/90. I am sure it's because I've been sleeping so little lately. ....
Has anyone out there experienced this? I've been willing to give this some time, but it's only getting worse.

Just wanting you to know that others have had this kind of experience. I started CPAP on Sept. 23, 2010. Ten days into therapy I was a real basketcase: Not only was my sleep severely disturbed, but my daytime functioning levels had plummeted. Hubby insisted on calling the sleep doc over my objections .... And, although my rise in BP was not as dramatic as yours, it was there: For years my BP had been in the range of 98-110 over 60-something. During Fall 2010 at numerous doctor visits, it was consistently running around 125-130 over 75-80. But because these elevated numbers were still at the high end of "normal", I also kept having the nurses and docs keep telling me that my BP was just fine. I finally ask the nurse in the PCP's office to compare the reading she'd just taken to the records of my BP's on the last several pre-CPAP office visits. At which point she did acknowledge that the reading was up by quite a bit.

But it does get better: At my annual physical a couple of weeks ago, my BP was back down to where it's run for years: 98/62.

And learning to sleep with the machine can be done. For some of us, it's a hard, long task that requires commitment, hard work, and patience, and effort. And some of us take a lot longer than the average of a couple of weeks to a couple of months to start feeling even as well as we did pre-CPAP.

In my case? The first four months were hellish. But by the sixth month, things slowly started turning around and I was noticing that I was no longer waking up with my daily low-grade pain in my hands and feet. By the end of eight months into therapy I was beginning to notice "woke up feeling almost refreshed" was starting to appear in my insomnia logs. By the end of ten months, I was starting to consistently feel as good or better than I'd felt pre-CPAP: in terms of pain, headaches, mood, and how rested I felt on waking. I'll be honest: I'm still dealing with some insomnia, but it is now mostly under control. I'm getting 5 1/2 hours of quality sleep most nights. For me, that's enough to function on since I typically was only getting around 6 1/2 hours of not-so-great sleep pre-CPAP.

But one key to making it work is wearing the mask all the time you are asleep. As in every night, all night long.

So the first thing you need to do is make a commitment to wear the mask anytime you are in bed trying to sleep. But lying in bed for several hours masked up and not sleeping is doing you no good. When you cannot get back to sleep after waking up, you need to get out of the bed, go into another room and do something that quiet and soothing. Return to bed only when you are calm enough and sleepy enough to try again.

You should read my Taming the CPAP-Induced Insomnia Monster for lots more tips on how to deal with the insomnia that you are currently experiencing.

[dogluvr]

Pugsy and roby sue, Thanks for the replies.
First of all, while you both were replying back, I noticed someone else had mentioned robysue's previous posts about the insomnia monster, so I have just moments ago, finished reading that. I will say that I do generally follow the same routine, waking up and going to bed about the same time every night and I do not have a tv in my bedroom. I have occassionally read in there, but not usually. I do take the mask off ( a no-no I see) and just overall struggle with the anxiety of all this and all that my diagnosis means. As an aside and a further worry, my husband feels (I don't agree with him) that if I just prop myself up on pillows more at night and use the tennis ball technique to stay on my side, I will be fine w/o cpap. But I'm not listening to him
In regards to the 'snoring' that he heard a couple nights ago when I had taken ambien, he said it was strange sounding, like it was coming from my nose and kind of moist sounding and he thought I was dying or something. I do not like taking prescription meds if I can help it but I was getting desperate. i do plan on taking melatonin at least for a little while (a week or so )
In regards to all the software questions from pugsy, I do not know what software I have on my apap machine, only that it is a Resmed autopap for her with an SD card that I am supposed to bring to the dr at appts. I do not have one scheduled at this time but as I had mentioned, I left a message with the nurse yesterday about all this. She may be off on Friday's as once previously I had left a message with her and she returned my call on the following Monday. I would love to know more about the details about my sleep though and will look over the uncle bob link that you mentioned. i am not exactly electronically inclined however. I'm pretty sure I only have windows 7 basic and am not familiar with another term you mentioned (too tired to remember what it was without going back to look) besides snipping.
I guess starting a sleep log may be in order and also to find out a little more about the details of my sleep if I can. And to keep the mask on. By the way, last night I had tried the mirage vista and I actually liked the fit of it better (not so close to my eyes) and after some adjustments with the head gear and the angle of the nose piece feature that it has, I had no leaks. But.....it was noisier than the mirage fx and I eventually (2 hrs maybe) took that one off and replaced it with the fx (for 3 more hrs), I don't know if I'll try it again or not.
Thanks for the info. I guess I have to be more patient. I tend to be far less patient when I am sleepy compared to my normal easy going self (which I want to get back to .

[Emilia]

If you are snoring really badly.... your mouth is open and all your therapy is going out leaving you as if you didn't even have a machine/mask. You may need to try some of the tricks to keep your mouth shut---- taping (do a search on the forum for that and you'll get a bunch of results), ask your DME to fit you with a full face mask or a hybrid (nasal pillow/oral mask), or try a chin strap (not everyone succeeds with this) to hold your mouth shut. Once you can keep your mouth closed, you will reap the benefits of your therapy.

You really should leverage the data from your machine via software to 'see' what is happening. You may also need adjustments in pressure or flex settings. You don't mention your pressure settings.... and those can help tell the story in conjunction with your data as to whether they need to be tweaked a bit. Your mask may be leaking as well, and the data will indicate this. I believe that in addition to the ResScan software, there is now a web based beta software you can use. Others with your machine can help you with that.... they'll be along soon.

This is doable... DO NOT GIVE UP! You have a very severe case of OSA and the risks to your health and life are serious. You have to get this to work for you for you own sake and your family's.

Best of luck!

[Emilia]

You sound so tired, and I am sure you are. Is your husband or another family member more tech savvy than you are? Do you have a techie friend or neighbor whom you trust to see your data and help you? The software will read your SD card and plot out, via graphs and charts, your overnight therapy. You'll be able to 'see' how you did, if there are leaks, if your need to tweak your pressure settings to effect better therapy, and more. It is a learning curve, but you must learn to do this to achieve the best therapy for yourself. You cannot depend on your doctor or the DME to be available to check data or make changes for you.... they are primarily only interested in if you are using the machine to meet compliance for your insurance so they get paid. A knowledgable patient is an empowered patient..... and you have a top of the line machine with tons of information inside it just waiting for you to see and learn from.

You can do this..... if you need techie help, get it from somewhere, but you can learn to do this.

[Canadianguy]

First off a big Hello,

I'm only on my second night with the Resmed S9 Autoset, in apap setting, using nasal pillows without headgear. It was recommended to me by a co-worker who has been a "hose head" for more than 11 years to try the Swift FX nasal pillows without headgear. I have found no trouble breathing with this mask, with in a couple of minutes I could even talk to the DME with the mask and pressure on. Not much on your face and the straps are really thin. So if your still in a trial period and think that the mask maybe your troubles, its worth a try. I have not checked my blood pressure readings yet, but my pulse was way up 107 beats a min. last week, today after just one night of 6hrs with mask 78 beats a min. Please don't give up, I know its not easy for all and somethings will be trial and error. But I feel we are at the right place to get the best advice to help us in this transitional time in our lives.

Keep reaching out, these people are so caring and understanding.

Good Luck,
Canadianguy.

[ameriken]

I do take the mask off ( a no-no I see) and just overall struggle with the anxiety of all this and all that my diagnosis means.

Regarding the taking the mask off, there's nothing wrong with doing that. I think it's fine and normal to take it off, and take a 'breather' so to speak. Kinda get your bearings and let the anxiety pass. However, if you intend to go back to sleep, it is absolutely necessary to put the mask back on.

My first night I slept 5 hours with it on, then took it off and decided to sleep a couple more hours without it. After laying there for a minute or two I thought about it and decided not to start a bad habit. So I put the mask back on and sleep the whole night with it now. You do get used to it and even get to the point where you forget you even have it on.

So I encourage you to take it off, get your bearings, and then put it back on.

Besides, anytime you sleep without it, you are not breathing and are intentionally doing serious damage to yourself. Do that enough times and one time you might not wake up. Nothing worse than hearing a story (like football player Reggie White) dying in bed with a CPAP machine at his side that is UNUSED.

[Suetois]

Hang in there! It took me more than 10 months to work out the kinks and get used to therapy. You're already a couple of steps ahead of many newbies in that your mask already fits, and you can fall asleep with it on. Those things can be major challenges. It took me ages to find a mask that works (and I'm still not more than about 85% happy with it).

Also, for some of us success depends on more than just the right mask. One of the changes my sleep doc made during that 10 months that made a big difference was switching me from CPAP to BiPAP. I just couldn't get used to exhaling against the high pressure it was taking to control my apnea. By switching to BiPAP, I was able to drop the pressure on each exhale significantly. It feels *much* more natural--and I can sleep through the night. The reason I'm suspecting this might be an issue for you is that you're waking up right about when many people go into REM sleep when their apnea is at its worst. That means your machine is probably cranking the pressure up to counteract the apnea. The increased pressure may be bothering you enough to wake you up. It's a possibility to consider anyway.

Remind yourself that without therapy you're only "sleeping" superficially anyway. All those arousals caused by apnea are preventing you from getting a real good night's sleep. I thought I was sleeping through the night back when I was snoring all night long, but the EEG during my sleep test proved that I was actually waking up to grab another breath almost 90 times per hour! I just wasn't waking up enough to realize that I was awake that many times. I was suffering a lot of side effects though. Once I adjusted to therapy, I quit waking up with headaches. Now I dream a lot. I wake up feeling alert. My memory has even improved significantly. Things really can be so much better than they are when you're not breathing properly during the night.

Sue

[cindjo717]

Doglvr, you have all of our sympathies, we know what you are going through and you can do this, you have to for your health. My first mask was a nose pillow mask and it did not work well for me. I had anxiety attacks with it, felt like I was suffocating for some reason and the air went out of my mouth. I would definitely switch your mask, try a full face, have you tried that yet? If you feel taking your mask off is a good thing for YOU then do so, it is not bad at all. Give yourself a break here and there. Get up like other's have said and go and do something, I have done same at times. I tend to wait until I am REALLY tired and closing my eyes and just can't keep them open, THEN put on my mask.. do you have it on ramp? Mine starts out low and comfy at 4, then ramps up on auto anywhere from 8 to 14. I seem to be hovering around 14. My prescription was for 10 and that was not correct for me, so it could very well be your pressure is wrong too, yours may be too high or too low.. If you don't know how to set your machine we have videos on here that can show you or you can call your DME or respiratory therapist ( mine came to the house and set up the machine for me) There are plenty of avenues you can take and at first yes, it may be hard, but for your health it's a must do.. Good luck and keep us posted, there is so much help for you here.. I am a newbie too, just got my machine about 2 1/2 weeks ago.

[dogluvr]

To Ameriken....I am aware of Reggie White. I am a GB Packer fan, lived there during the glory years of Brett Favre and Reggie White . It was so sad to hear he had died and now it is even more significant to me.
To Emilia...yes, I am tired I am on a pressure setting of 6/16 currently with a formal titration study being suggested by my dr for some tweaking at a later date. My AHI readouts on my machine are actually less than one, like at 0.6 or 0.4, so I know it is actually helping. However, during probably half the time I have the mask on, I am not sleeping, so the results won't be completely accurate. The snoring was only that one night that I had tried some ambien (which I had left over from my sleep study). Also, the readout on the machine is also showing "good" mask fits so I am assuming that means no leaking. I basically am not aware of any. My husband knows less than me about tech stuff but I do know others who are. One that I am thinking of, has a husband on cpap, so maybe I'll reach out to her.
To Canadianguy...Hello I am still on the mask trial and though I think the fx is working for me, I will ask about the one you mentioned.

[dogluvr]

To Sue...that is a very interesting concept. Is that something that the data on my machine would be able to 'see'? Probably not because it doesn't know what stage of sleep I am in. I will ask my dr about it. I too feel like my memory has suffered in recent years and I am hoping that with successful treatment that my memory and dreaming and alertness will come back.
To Cindjo....I think my mask is fine. I don't think I would like a full face (due to claustrophobia) and as long as I am not leaking, I will stick with the nasal. My 20 minute ramp time is set at 6 and feels comfortable. After that, I have no idea what it tops out at (set at 16) since I don't know any data yet other than the few readouts from the machine such as the 'good' mask fit and low AHI readings. My DME is actually working with me fine so far. They have a good reputation and really want what's best for the patient. They are also part of my hospital system that I work for so maybe a little extra TLC from them . they are available 24/7 and it is actually respiratory therapists who fit cpap patients with the masks so I feel they have my best interests at heart and know what they are talking about. The most experienced of them was formerly a registered sleep technician and uses cpap herself.

[dogluvr]

Okay, I've downloaded the software from Uncle Bob's link. Do I now need a usb adapter in order to transfer the data to my computer? I don't think I have a usb adapter. Is there anything special I need to know about buying one? And the data will still be on the sd card correct ? for when I have to bring it into the dr? Thanks

[Pugsy]

If your computer has a SD slot (like for camera SDs) then no need for anything else.
If your computer does not have a SD slot then you will need a SD card reader/adapter that will plug into one of the computer's USB ports. Doesn't have to be a fancy expensive one. Generic from WalMart $8 to $10 will work. Online sources can be even a little less.

Using the SD card with the software does not change or alter the data on the SD card. If you are afraid you will accidentally do something to the SD card you can slide the little switch and make it a "read only" SD card. You would need to remember to slide it back to "write" when putting the SD card back into the Resmed machine.

[robysue]

Okay, I've downloaded the software from Uncle Bob's link. Do I now need a usb adapter in order to transfer the data to my computer? I don't think I have a usb adapter. Is there anything special I need to know about buying one? And the data will still be on the sd card correct ? for when I have to bring it into the dr? Thanks

Do you have a digital camera with an SD card? Because you down load the data off the S9's SD card in much the same way you download digital pictures.

If your computer is less than a couple of years old, it may have a built in SD card slot. In that case, just stick the card in there and you'll be fine.

If your computer doesn't have an SD slot, just go to a place like Best Buy, Office Depot, Office Max, or even Target and ask a salesperson to show you the cheapest SD card reader. It will cost $10 or less and it will work just fine.