Frequent awakening (long)

So tired,
Which apap machine do you have? If you have the PB 420e, you need the cable to connect to your computer. If you have the Encorepro, although there may be a card loaded in the machine itself, if you don't have the software on your computer and the card reader, you won't be able to access the data that is on the card in the machine.

I can't believe how much I've learned having this machine since 7/28. For me to write the above paragraph and know what I'm talking about is amazing to me...

Sleepless,

My auto is a Remstar auto with cflex (which I think is turned off). You can see some sort of doodad in a slot on the side.

I really do appreciate your trying to help me! Now if I can only sleep well tonight.........I'm dreading it already. What do you think about the Activa with the straps bunching up in back??

So tired,

No need, first off, to thank me for help. That's what this site is all about. Glad to be able to pay back some of my "debt" I incurred from all the help I've been given over the past couple of months.

Now about your machine, that's mine so I can tell you a lot about it. The card is inserted and that is what records all your data. If you look at the bottom right of your machine's display, it will show you the card is inserted.

Now, in order to get the information off that card, you need to have the Encorepro software installed on your computer and a card reader to insert the card into from your machine which gets attached to your computer. When you wake in the mornings, or whenever you would want to get that information, what you would do it take the card out, insert it into the card reader which would be attached via USB plug to your computer and then open your software and go through the appropriate steps to read what is on the card. If you have the card inserted and don't have the software, you will have to wait and see what your doctor, or whoever is handling this for you, perhaps the DME, tells you when you give them the machine or card back.

Is this a rental? If so, they gave you a top of the line rental. Do you have the CFlex option turned on; do you know? I could tell you how the changes settings, but it's not a smart thing to do if this is going back or someone other than you is going to read your card as the patient is not supposed to know how to do that. If you can keep this machine, you're very lucky. But I wouldn't tamper with anything if it's being rented and the card is going to be read by the prescriber.

As far as the Activa, yes, my head felt too small for the straps, too. If you try to lower the bottom strap as far down as you can get it, that used to help me a little. You can also order a mesh cap to attach it to. It comes with two sets of straps on it positioned where you would need them to be for a nasal mask. Maybe that would work better for you? This is what it looks like:
. This one sells for $59 at http://www.parknicollet.com. You can look online for cheaper prices perhaps. It may be worth the investmenet if you are planning on staying with a nasal mask. This cap can be used with, I believe, all if not most of them.

Let me know how your night went last night. Hope it was a better one. Hang in there...it does get better with time.

If this is the Softcap, they carry it at Cpap.com for practically nothing. I've got a new one I haven't used yet. $28.50

https://www.cpap.com/productpage/softca ... onics.html
or this
https://www.cpap.com/productpage/softca ... onics.html
also $28.50

I think it is cpapman.com or cpapstore.com that has a plethora of caps in all colors and patterns, including camoflague and leopard at comparable prices.

SLI,

Yep, the machine is a borrowed one from the DME who is going to read the data and send a report to the doctor. So, I agree that it would not be a smart thing to tamper with the settings on my own. I don't want them to discharge me for being noncompliant! They supply my O2 also!

I think a better solution is to just call them on Monday and ask that they change the settings a tad. I didn't understand Rested Gal's post about runaway pressure as I had never heard of it. (I did send you a PM RG..) I just did a search on it and wonder if it is indeed the latest problem.

To complicate matters, I have had pretty severe chest pain/soreness yesterday and today. No OTC pain meds have touched it. It does feel like it's musculoskeletal. I know it's not cardiac. I'd think maybe I overdid it at the gym but haven't done anything differently than usual! I did a search on that also, and it could very well tie in with runaway pressures!

WHY CAN'T THIS BE SIMPLE??

Last night was an ok night. I woke up less and had few leaks with the Activa. SLI, thanks for the suggestion of the head cap thingie, but it doesn't seem to be moving. I do have the bottom straps as far down as possible and loose as well.

Anxious to hear further thoughts......

So tired,

Do me a favor and get yourself checked out and make sure it's not something cardiac? I don't know how you can be so calm and diagnose yourself like that. Chest pain is chest pain and it's always better to let a doctor tell you it's nothing. Don't get me started here. I had chest pains last month which turned out to be from an increased dosage of medication they had me on to prevent migraines. No one ever told me there could be heart problems associated with taking it at higher doses. Needless to say, I'm off of it now. But the idiot partner of my PCP told me she thought it was muscular. When it didn't go away and it would wake me up at night, when my PCP came back, I went to her and she diagreed totally with her partner (which is unusal) and was concerned about coronary artery spasm until I told her about the neurologist upping my dosage of the mirgrain med. She had heard it could cause chest pains. I did my homework online and found all sorts of stuff, including a warning put out by Canada in Jan. of 2004 alerting patients about the association with this med and heart problems. Nuff said.

Anyway, I thought you felt the headgear wasn't working for you on the Activa, which I why I mentioned the mesh cap. Glad you don't need it.

You are on O2, also? Please do me and yourself a favor and, at the very least, call your doctor with your chest pain symptoms and let them decide if you should be checked out. When you say no OTC drugs are touching it, it sounds pretty heavy duty. Angina can come fom a lot of different causes, and some of them need immediate attention to prevent further complication. Heart disease runs in my family. My maternal grandfather died at 54 from a massive coronary so I am very careful when it comes to my heart. I have already had two cardiac ablations, one successful and the first one not, and had lived my whole life with tachycardia and arrhythmia until they were able to fix it with that procedure. I had what they consider just high blood pressure, 140's over 90's, but most of the time it comes down from cpap. I don't know why it doesn't stay down, but it's never enough now for medication, thank goodness. Hate to take anything if I don't have to.

Let me know how you are later, please. And at least CALL YOUR DOCTOR.

Lori!

Well, let me just first say that I am an RN with oodles of experience. I already have heart disease....I have familial cardiomyopathy. I have already had a cardiac cath and I have perfect coronaries. I have had a failed internal defibrillator implant (don't ask), and a failed ablation. At present I have an implantable loop recorder to assess my arrhythmias. My cardiac status is stable, believe it or not! My cardiac function has increased dramatically since diagnosis 3 years ago. I am followed closely by my electrophysiologist and pulmonologist. It's OK, trust me! I am already on Coumadin, so I know it's not a pulmonary embolus, plus I have no reason to have one anyway.

If there was ANY question, believe me I would call the doctor. I am 100% sure it's not angina. My BP is low and my heart rate is fine. I have equal breath sounds and I doubt if it's a respiratory problem. I really think the runaway pressure makes the most sense.

So tired,
I am impressed, to say the least. You did worry me before when you spoke about chest pains and diagnosing yourself as fine. But it sounds like you have plenty of knowledge on the subject of heart disease, not to mention your own condition.
So you, too, have ventured into the wonderful world of EPS's and ablations. I had one done to correct my insanely fast hearbeats and arrhythmia back in 2000 at a very well-know...I should say THE heart hospital (that's it's nickname) here on Long Island because they said I was a great candidate for it to cure me. However, when they went in and saw how bad things were, and although they did some burning while they were in, they felt I needed a trans-septal ablation and decided it was too risky and put me on Betapace. Within a day or two of being put on it, I started feeling horrible and gained 15 lbs. in two weeks. I was usually thin and couldn't gain 15 lbs. in two weeks if I sat on the couch all day and ate Bon-Bons. When I told this cardiologist/EPS doctor, he said, "Oh, people who have heart conditions tend to become sedentary. Start exercising and watch what you eat." I can't tell you how mad that made me.
Eventually, after being on the medication and getting checked every two to three months by him, and telling him I was having more and more attacks since being on the medication, in about the 11th month, they put me on the Loop. They told me I probably wouldn't fill it up, but if I was lucky enough to get five readings, to "dump" the info into this telephone receiving end and they would assess the situation. Well, in five days, I had my five readings and as soon as I sent the info in, I got a call back in minutes from a doctor there who asked me if I had been to an ER over these episodes. I laughed because this is how I was living for the past 11 months.
Long story short, my doctor's collegue called me and begged me to come in while his partner was on "vacation" and told me to stop, cold turkey, this medication which you're supposed to be weaned off of. I knew what that meant. Finally someone realized that this was not the right med. for me. He told me I needed to have the procedure repeated and the best place for me to have it done would be at a computerized mapping center who can pinpoint the exact areas and perform the trans-septal. These are the doctors from "the heart hospital."
I decided they had enough bites at this apple and went to NYU-Cornell Medical Center in Manhattan where the chief of the EPS Lab repeated my ablation without trans-septal, with a 2-hour procedure taking 5 1/2 hours, and I have never, ever had another problem with tacchycardia or arrhythima again, I am so blessed to say.
Well, that about sums it up as quickly as I can. Oh, I failed to mention, my childhood/young adult internist who was a self-proclaimed cardiologist, even though he wasn't at all, diagnosed me all my life, since 11, with a prolapase mitral valve condition as being the reason and put me on episodic doses of valium and Inderal. I was so angry to find out he was wrong all those years and I had something that could have been cured long before.
I did, before the ablations, also, have one of those horrible treatments with Adenazine (don't know if I spelled it right) which made me ER shy since the doctor didn't warn me it would stop my heart for a second or two. I felt like someone had put tape over my mouth and nose and I was mortified. Never wanted to go back to an ER for my heart after that. But one time when I was in one of my episodes, that always seemed to happen at the wrong times, after 22 hours of a heatbeats that sounded to my husband like an engine running, it was so fast, and he couldn't even get pulse check because it was too fast to count, I decided I needed help. I did go to the ER and they had me at a pulse rate of 235 bpm. I knew I had to find some real solution to my problem before I ended up stroking out in my early forties.
Sorry to bore you. Just thought you could relate to what I went through. I hope you feel better real soon. And I'm very happy to hear that it sounds like you are in great hands, not to mention the level of your knowledge and expertise.

Janelle wrote:If this is the Softcap, they carry it at Cpap.com for practically nothing. I've got a new one I haven't used yet. $28.50

https://www.cpap.com/productpage/softca ... onics.html
or this
https://www.cpap.com/productpage/softca ... onics.html
also $28.50

I think it is cpapman.com or cpapstore.com that has a plethora of caps in all colors and patterns, including camoflague and leopard at comparable prices.

Is this softcap the one you use for your swift? And is it designed to be used with any mask? One more question, how far down does it come in the back?

From what I've seen they can be used without modification by about any mask, except the ones with a over the head or the ones with two hoses (nasal prong or pillows) that go on each side. They do make headgear straps that will stabilize those better, however. There is a separate mesh or non-mesh cap that will accomodate the nasal pillow/prong designs that have the hose coming over the middle of the head and include a loop for that purpose. Might be a good idea for the Aura, after you remove that cumbersome Lockbox thingee.

I used the Tiara Fungear (white lace, also comes in black) for the cap for my Swift. But it is the Respironics softcap I have that I haven't used yet. I'm contemplating buying an Activa and might save it for that. There are also "caps" that are mostly strap and have a solid section of material at the very back of the head, doing away with any adjustment clips, etc. back there.

Thanks for the below info.

[quote="Janelle"]From what I've seen they can be used without modification by about any mask, except the ones with a over the head or the ones with two hoses (nasal prong or pillows) that go on each side. They do make headgear straps that will stabilize those better, however. There is a separate mesh or non-mesh cap that will accomodate the nasal pillow/prong designs that have the hose coming over the middle of the head and include a loop for that purpose. Might be a good idea for the Aura, after you remove that cumbersome Lockbox thingee.

I used the Tiara Fungear (white lace, also comes in black) for the cap for my Swift. But it is the Respironics softcap I have that I haven't used yet. I'm contemplating buying an Activa and might save it for that. There are also "caps" that are mostly strap and have a solid section of material at the very back of the head, doing away with any adjustment clips, etc. back there.

Hi Lori,

Yah, I can certainly relate to all you've been through. And you didn't bore me in the slightest! As you found out, there are EP's and there are EP's! Some guys I think want some practice and are too eager to get in there and play around. I do trust mine. What exactly was the arrhythmia that you had ablated?? Inquiring minds want to know! I am really nosy when it comes to medical details! I also had the Adenosine IV before and it was the weirdest feeling. I grilled them beforehand about their Atropine availability to get that heart rate back up! Didn't need it though.

You will be relieved to know that the chest soreness/pain is all gone! Thanks for your concern! I did switch back to the straight Cpap last night, with the Activa. I did sleep better, but still woke too often. I think I'm getting used to the Activa now. In the morning I'm gonna call the RT and see what he has in mind. I think I can persuade him to lower the pressure on the autopap and see what happens. It must be runaway pressure that gave me the problems.

It might make you feel better about your old *cardiologist* to know that MVP has been way overdiagnosed. They have changed the criteria and now I don't have it either (although I have enough heart stuff to worry about)! They used to blame most arrhythmias on it, and now they know better.

To restful sleep!!

With the runaway pressures you will usually wake up and feel like you are being blown away and when you read the pressure it is like 14 or higher.

So Tired,

I wish I could remember the exact name they gave my arrhythmia but I think I blocked it out of my mind. It had something to do, if I'm remembering right, with supraventricular? Is that correct? I really don't want to go back there and try to remember, actually.

I have to tell you, the adenosine treatment they gave me, they didn't even warn me what they were going to do. The just did it. That was what freaked me out so badly. If they had given me a warning, actually an option, too, that they were going to do it, I would have been ready. But all of a sudden, I felt like I died, which, for all intents and purposes, you do for that second or too, and then got my breath back. The doctor was so proud of himself that it worked, he calmed me down and said, "I'll be right back to show you what just happened." He came back and handed me my EKG which showed where my heart stopped beating and how it came back. I was relieved to finally have a heartbeat that wasn't making me feel like I couldn't stop running the track after all those hours, so I guess I didn't say anything out of being grateful for that. But it made me so ER shy for anything having to do with my heart again. That's when I knew, since the episodes were increasing yearly and I was getting older, that to save myself from an inevitable stroke, I needed to get some help.

And the first doctor who did the failed ablation and put me on Betapace is from the most reknowned heart hospital here on Long Island, St. Francis/The Heart Hospital. They actually call it that in their name. It's where EVERYONE who has a heart problem goes. This doctor did not need the business. I think it was his cocky knowitall attitude that put me in the bad position I was in.

Anyway, so happy to hear you're better and not feeling those horrible chest pains. Continue to feel better, please.

Well everyone, this is SO discouraging! I just talked to the RT at the DME. No surprise, he was no help. I mentioned the chest paint/soreness which has to be from the Autopap as it disappeared when I went back to the straight at 5 cm. He said he had never heard of that. I mentioned the possibility of runaway pressure, and he said he had never heard of that either! He asked where I got that information and I told him online and he pooh-poohed all of it. He had no suggestions at all except another sleep study.

I am going to call the sleep tech at the center and see what she can come up with, if anything! I can't think of what else to do. I know the sleep doc knows even less, although he is willing to help anyway and really does care. At least I think he does!