Newbie needs support-2 days w/o sleep!

[Desperate_in_DM]

Please forgive my lack of knowledge about all of this. It's all very new to me. For over 2 years now I've had declining health. It started after the birth of my son. First I was told my fatigue was being a new mom, then that it was PPD, then Epstein-Barr reactivation, then B12 deficiency, then vitamin D deficiency, then Chronic Hyperventilation Syndrome, then new mom again, then Lupus, then Adrenal Fatigue and now Sleep Apnea. Each time I would be treated for what that doctor believed was the problem without seeing any improvement in my health. I was becoming desperate as my irritability was becoming dangerous. I lost my job because of it and now must stay at home with my high-needs toddler son and I'm afraid I'll lash out at him.

I had my overnight study on the 2nd of August. The next day I was contacted that I had an AHI of 25 and Pulse-Ox of 85% during the study. I was told that the physiological cause and further info on my study would be discussed at my follow-up appointment in September 15th, but that they wanted me to come in for a CPAP the same day! (I had already been fitted before my sleep study as my Dr. was so confident I had apnea).

I was given REMstar Auto A Flex by Repironics. They had me try 3 masks and I chose the Respironics Simplicity mask because it seemed less cumbersome. I was fitted with the extra-small nostril pads. I tried using it last night. Each time I would feel I was starting to fall asleep, I would quit breathing, the CPAP would kick into high gear and the puff of forced air would transition me to almost asleep to fully awake. I did not sleep last night due because of this.

I'm trying to stick with it and tried again tonight. I went to bed at 10PM. I finally quit around 12:45AM because I was starting to have what I guess were panic attacks. I don't feel like I can fully exhale with the mask before more air is forced into my nose.

My machine is set to start at 6, but I could tell the the pressure had steadily increased. I couldn't see in the dark without waking my husband what it had gone up to before I started "freaking out" and shut it off. The technician told me that I would feel like I was struggling to exhale as I require such small nostril pads. But on the size small pads I was getting a lot of leaks for some reason.

I don't want to give up on the machine, but I have had 7 hours of sleep in 3 days and I'm feeling more than a little mentally unstable right now. I just want this to be over, but I know I have to stick with the CPAP to get there. I just wanted to hear from other people that it gets better. I was just dismayed that the machine contributed to keeping me awake as I'd heard from at least 5 people that the first night they got their CPAP they slept better than they had in months/years.

[redback]

Sorry to hear that you are not sleeping. We have all been there.

First, wake up your husband. Get the bugger involved. You are having panic attacks and you are worried about waking him up???? Really?????

Second, call your sleep clinic, technician or doctor. Seek help. Do not try to tough it out. You will collapse.

It may help to set the machine to a constant pressure. My own sleep technician doesnt see the point of these apap machines. If the machine is reacting to your episodes in a way which wakes you up then something needs tweaked. Simplify the whole thing by just setting it to a constant pressure but call somebody and get help.

You have a baby and a sleep problem. This is a combination which could lead to serious illness and the baby will suffer. For the sake of your child go get help and involve your husband.

[Julie]

Hi, how awful that they did not set you up properly! If you don't mind, however, and I'm certain you'll understand, I'd like to suggest that you find someone, whether "official" or family, to take your baby for a short time, whether a few days or a week, which would allow you to have a looser schedule to take care of yourself, and alleviate worries (and ?? realities) of anything whatsoever happening as a result of your state of mind. It's nothing to do with being a good mother, but with recognizing that at the moment you don't have 100% (far from it) to give to a child and that's what he deserves. I think it's important for both of you, but unrealistic to expect your working husband to deal with.

Two things stand out in your note, one is that I'm not at all sure you have a mask suitable for you, in the right size, and fitted properly enough to do a good job. Cumbersome may be one thing, but right now you need to get treated and something more effective is important, so please contact whoever started you out with the Simplicity and say you need to have something else right now, and that you need them to take their time (with you lying down if at all possible) to set things up.

The other thing is that I don't think they've explained your machine at all. What is supposed to happen is that your doctor prescribes a setting of a certain amount of pressure. With an auto machine, that means that it should be set up to start at a 1 or 2 numbers below that prescribed pressure, and up to five numbers above it, which generally gives you a good range to breathe in. So if your prescribed pressure is i.e. 10, you would set the machine (or whoever did it for you - you'll learn in time to do it yourself, but don't tell the DME because that makes them crazy) for 8 and 12. HOWever, there is a feature on the machine called the Ramp, that supposedly helps you adjust to your prescribed pressure slowly each night by starting you off at quite a low number (like your "6") for a certain amount of time - 10 minutes or whatever - until the machine reaches the prescribed number. Most of us turned off the ramp feature altogether after a few days which means that the machine (and you) start off going straight to the prescribed number. This is because ramp starter numbers are usually set so low that we can't breathe well at all, and only when the machine reaches the proper setting do we relax! Unless your prescribed pressure is very high (over 15), you'll probably feel better turning the ramp off altogether (you can always reinstate it in future).

So to sum up, I think you need to first get a mask that works for you (and you shouldn't have to tighten the straps to the point of discomfort because that only causes new problems), fitted properly. Second, you need to find out what your prescribed pressure number is and get them to set the machine to begin at just 1-2 numbers below it, and a few (NOT a lot) above it, for maximum effective therapy. Setting the machine to default numbers (4 - 20) is useless and makes the machine ineffective. If necessary, tell us your prescribed number and we can tell you how to set the machine properly (as I said, dealers don't like patients doing that, and even tell them it's "illegal" to do so, which is absolute, utter nonsense, because they want to keep control). It's not hard at all to do, but we would need to know what your prescribed number is. Thirdly, try not using the ramp feature (again, something we can tell you how to shut off) so that your immediate breathing once the machine's on is within the 'good' range and not working its way up from the cellar to where you breathe comfortably.

[cflame1]

Does your sleep lab do mask fittings?

Somewhere that you can try on different masks with a machine set to your pressures (and lay down with them)?

Try some other ones... just like Julie's recommending. Don't just go with what's less cumbersome or what looks cool. Find something that fits well and you can breathe with.

[Desperate_in_DM]

2 hours of sleep last night. Just as I finally fell into a comfortable sleep WITH the mask, the toddler awoke 2.5 hours early. I'm trying to find someone to take the toddler today, but my husband is currently activated with the military and my sister, who lives in town, has a meeting she can't miss. I don't really know anyone else who could help. Waiting for 1 person to call back...

Cflame1 (Nicki?)---I couldn't help but see that you were living in Iowa? What part? I am in Des Moines and have been using the Mercy Sleep Clinic in Clive. Their sleep clinic has their own respiratory home store, but the lady who helped me seemed very distracted by my whining toddler (babysitter fell through). Anyway...I was just wonder if you might go to the same clinic and thought if so, you might have some suggestions/insight on the clinic/home store.

[echo]

Can you tell us what your APAP settings are currently?

Most likely you will do better in straight CPAP mode (so there is NO change in pressure while you're sleeping). Normally they "prescribe" you "your pressure" during a "titration study". In this case, it sounds like they're doing the titration at home on an APAP, with the theory that the APAP will find the right pressure for you. After a week, that data can be used to estimate your ideal pressure. But it doesn't always work like that in real life.

You may want to go back and ask for a real in-hospital overnight titration study. It's possible that in time you will get used to the APAP's changing pressure, but with all that on your plate, and your inability to tolerate it, why torture yourself? Get the titration done at the hospital.

You can read more about how sleep studies and titrations are conducted here: wiki/index.php/Sleep_Study_Tests

Welcome to the forum, and good luck!

[Desperate_in_DM]

I would tell you the settings if I knew how to find them. Last night/this morning I was trying to figure out how to look this stuff up and manually change it and I couldn't. I'm going to have to spend some time today reading the full manual and tinkering with the machine during Monkey's naptime. Honestly the only instruction I got on the unit was where the water for the humidifier went, where the filter was, how to adjust the humidifier level and how to turn it on and off. She showed me absolutely nothing on the settings on the machine and did not tell me the prescribed pressure.

I wonder if I could contact the clinic and have a tech help rather than returning to the respiratory home store where they were less than helpful.

My son saw me this morning and exclaimed "Mama 'phant!" I guess I looked like an elephant to him.

[echo]

My son saw me this morning and "Mama 'phant!" I guess I looked like an elephant to him.

That's cute!! You should explain the machine to your kids so they're not scared of it. Read this: viewtopic.php?f=1&t=54094&p=505242&#p504009

Someone will be along shortly to give you the clinician's manual for your machine. To make it easier for us to help you, please go to the User Control Panel -> Profile -> Edit equipment, and fill out your mask and machine (preferrably in "text" format). Then it will appear under every post you make.

[jweeks]

My son saw me this morning and exclaimed "Mama 'phant!" I guess I looked like an elephant to him.

Hi,

Another poster in another thread recently told a story about his granddaughter seeing him use CPAP for the first time. She thought that her grandfather was being attached by a monster, so she started trying to fight off the monster. What a startling way to wake up that must have been.

At this point in time, I'd suggest going back to the basics. You are exhausted and have kids to take care of, so this isn't a good time to have to become a CPAP engineer. My uninformed suggestion would be to get the machine set on straight CPAP at your titration pressure, have it set for CFLEX (or ERP) level of 2 or 3, and use a full face mask. The idea isn't to learn and optimize at this point, the idea is survival. Once you get a few weeks of sleep behind you and get caught up, then it would be a good idea to slowing introduce some of the more advanced stuff like a nasal pillow mask and APAP mode. But for now, you just need sleep without all the hassle, and I think simplicity is the way to go.

-john-

[Emilia]

When I went for my titration, I was so SURE I wanted nasal pillows...they looked so lightweight and everything appeared less claustrophobic. I put that on and took it off right away. I really hated the feeling of the nasal pillows.....probably just a simple reaction to having my nostrils covered. I then put on a nasal mask...it was comfortable, and I was lucky enough to take to it right away. I slept easily at the lab with that mask and had no leaks. It was just beginner's luck, I guess. Everyone is different, but I agree that the nasal pillows is a learning curve and best left for after you get some rest. I know I will try them again when I am rested and more experienced using this therapy.

You are totally sleep deprived right now, and with a toddler and the responsibility that goes along with having him, it is impossible for you to focus on your needs. Getting a good babysitter lined up for a few days will benefit you so much. I hope your sister or another mom you know will step up and help you get through this initial phase of your therapy.

Best of luck to you!! Keep us posted.

[DoriC]

Yes, straight cpap at titrated pressure is the least confusing way to go. Do you know what your titrated pressure was during the sleep study? If you can get that info and have the tech change your settings that would be a good idea, if they won't, ask here and someone can give you instructions. You should get a copy of your study and RX. The ramp and Aflex settings are your own personal comfort features and you can experiment with them until you find out which is best for you. We found out pretty quickly that my husband didn't need a lower ramp setting and liked the full pressure right away. With the flex settings he quickly found that it didn't match his breathing patterns having him inhale before he finished his exhale so we kept lowering it and finally shut if Off. The mask is the crucial part in all this. Mostly everyone tried several masks before they found nirvana! My husband is a mouth breather so he needs a full face mask but had to try different styles in those too. We went back to the equipment provider (DME) once to try different masks with our machine on, and since they couldn't provide us with a cot my hubby rolled up his jacket for a pillow and laid down on the floor. After that we had them come to the house and requested they bring the UltraMirageFF which we found was the mask he used for his sleep study. After some minor adjustments, voila! This is not to say that this doesn't take patience and lots of help and education from the experts here but it will be so worth it when you can really fully enjoy your sweet baby. Please keep us updated and we will try to help you. Blessings, Dori

[Hospiceangel]

Hi,
I agree with all the other posters. Straight CPAP with a ramp is the way to go. In my area, Colorado, they do have Respiratory Therapists at the sleep lab during the day. I would get on the phone and call first but the squeaky wheel gets the grease!!! You need sleep and you need it now. I know all of us know what sleep deprived is and with a new baby and a toddler? Sheesh!!!! Get your sister, a neighbor, a church group, and that man of yours involved!!

Call your Doctor, and call the DME provider. Make an appt. Lay on the floor. If you must take the kids, do it, but keep fighting. I was fitted with a nose mask. I thought I would like the nose pillows because it's hard to read when I have the mask on and I thought it would be less restrictive. I have a LT Swift for her that I'm still trying to get used to. I say trying because it's hard. I'm using the medium pillows and that blast of air is not comfortable. I can't imagine how much worse the extra small pillows would be.
Hang in there and keep us posted.
Shar:)

[Desperate_in_DM]

It would have been nice if I had been introduced to the CPAP during my overnight sleep study.

I still don't understand everything. I'm reading when I get a chance, but Monkey is climbing the walls today. Here is what I can figure out from this machine:

*A-Flex disabled
*After the machine was on, I hit the ramp button and didn't see a symbol come on the screen. Should it? Also, the pressure didn't change from a 6.
*The setup screen only offers me the ability to change the humidifier setting, set auto on/off, mask alert and LED backlight. I cannot see that anything else can be changed.

I called the clinic and was told to give it another day before I decide whether or not I need to see a tech.

[Hospiceangel]

Sorry angel, but I'm feeling suspicious.
Who was it that answered the phone? A scheduler that could care less or one of the techs? Did they let you talk to a tech? The other folks who are more experienced with your machine can jump in here about the settings on the machine. It seems to me they were giving you the old runaround....
Call back and insist on talking to a tech. If they don't like it they can lump it. You're the one that is sleep deprived.
Keep posting.....
Shar:)

[Thomas F.]

I found this link to the manual for your machine (I think). The manual explains the buttons, LCD screen info, etc.


It sounds to me like your machine is set to start at 6 and then goes up from there based on your breathing needs. Look at the setup screen as described in the manual and it will show what your machine is set for. 6 is a low setting to begin with so I don't expect you should need to go lower and ramp up.

The key is to not have any leaking of your mask to nose or not to leak air out of your mouth. Otherwise the machine will increase pressure the adjust for the leaking. Again, the manual will tells you how to find the settings.




http://respironicsremstars.respironics. ... Manual.pdf