Really ticked off-Kind of long

[AmoRanas]

First I wanted to thank everyone for all their posts. I have been reading them religiously for weeks now and learned quite a bit.

I have had a couple of sleep studies, first one I didn’t get by 2.3 hours of sleep and the technician didn’t give me the ambien that the doctor indicated. I didn’t ask because I thought that maybe I was supposed to bring one of my own.

So the doc had me come back free of charge for a second. I refused to take the room that I was in the first time since the camera they had was so noisy and it had a pull-down bed, not a real matterass and really I’ve had better at Motel 6.

The second one was better slept for about 6 hours had and AHI of 67. All hypopneas, no obstructive apneas at all.

Third time with the device. I was under the impression that I was on a bipap from my conversation with the tech and the label on the machine. I fell asleep right away and had also taken an ambient. Slept for 4.5 hours with the first part being free from hypopneas and as the tech increased the pressure from 6 I started have more and actually started having OSA’s. Finally I woke up from it all and my AHI was 23 at the end. I finally had a day without a headache. I was so happy.

The doc sent the prescription to the DME and I went in to get it. It’s a cpap. I made them call the office stating that I was tested on a bipap. They were told no. SO I called the doc’s office yesterday and today and was told that they only have cpap’s. “Really”, I said. Why was I told different and what machine was I actually on? I drilled her. She then said that if she were to prescribe a bipap I would have to come back in for a study on that machine. Wait, I thought you said you didn’t have any?!

So last night I put everything together and went to bed. I thought I was going to suffocate. I couldn’t exhale very well at all. I ended up with a migrane, ear pain and felt like my nose had almost swollen shut. I even had the heated humidifier on and moisture was starting to build up in the mask so I turned in down one. After a few hours and still wasn’t sleeping even with taking an ambien, took the thing off, cried a wee bit and went to sleep on the couch. Didn’t even want to be in the same room as that thing.

Am I being a baby? How can the first night with the equipment be so much better than actually getting it home and sleeping in a real bed? The full mask doesn’t bother me at all. I am not claustrophobic. I’ve been riding motorcycles and wearing a full face helmet so I am used to that and wind in my face.

I am so disappointed with myself, my equipment and my doctor. I really want this to work.

Sorry this has been so long.

RemStar M Series, Comfort Mask

[DreamStalker]

What pressure did they titrate you to?

1) Get yourself an original copy of the prescription.

2) Get yourself a copy of your sleep study report.

3) Fill out your profile (button at top of web page) to let other members view what your equipment set up is.


Once you provide the group members with additional info ... the help and advice will flow forth like the winds of your CPAP machine.

[Janine]

(clipped)

So last night I put everything together and went to bed. I thought I was going to suffocate. I couldn’t exhale very well at all. I ended up with a migrane, ear pain and felt like my nose had almost swollen shut. I even had the heated humidifier on and moisture was starting to build up in the mask so I turned in down one. After a few hours and still wasn’t sleeping even with taking an ambien, took the thing off, cried a wee bit and went to sleep on the couch. Didn’t even want to be in the same room as that thing.

Am I being a baby? How can the first night with the equipment be so much better than actually getting it home and sleeping in a real bed? The full mask doesn’t bother me at all. I am not claustrophobic. I’ve been riding motorcycles and wearing a full face helmet so I am used to that and wind in my face.

I am so disappointed with myself, my equipment and my doctor. I really want this to work.

RemStar M Series, Comfort Mask

Sorry this has been so long.

No, you are not being a baby. Or at least if you are, that makes at least two of us. My first night on cpap was the same as yours - horrible, couldn't exhale properly, headache, sore ears, little sleep. The next night I finally forced myself to go to bed at 4am and it was the same.

Luckily, I then found this place and got help. I was on a cpap and nasal mask and got switched to a machine with cflex (exhalation relief) and a full face mask. The claustrophobia went away and I could breathe out much easier. I have worn it the last 2 night successfully. I don't think it is perfect and I think I want more features on the machine but instead of feeling horrible and not wanting to sleep, I actually looked forward to last night. It was more of an adventure than a chore. And I feel much better, even after 2 nights.

Give yourself a break. Of course you are ticked of, disappointed and frustrated! Read everything you can here, research your machine and mask (I think I read that comfort mask isn't comfortable) and do what Dreamstalker said.

It will get better. Hang in there!

[brackstone]

I was on CPAP with CFLEX and I could not sleep at all with mine. I had it for 6 months and I could not exhale at all.

I called the doctors office a few times over the span of 6 months and they finally switched me to Auto Bi-Pap after I pretty much demanded a new machine.

But now things are developing nicely, so don't be too discouraged! There is still hope

[Linda3032]

AmoRanas, it already sounds like you are doing a good job of complaining (that's a compliment), so just keep it up. Complain until they give you a machine that you want and need.

If your titrated pressure is very low, you might not need a Bi-Pap, but who knows.

It doesn't sound like you got a good titration if your AHI was 23 at the end. They should be able to find a pressure that will get it under 5.

Make sure you get a copy of your sleep study.

[SleepySandy]

Hi AmoRanas - You definitely are not being a baby. Keep pushing for what you need.

The second one was better slept for about 6 hours had and AHI of 67. All hypopneas, no obstructive apneas at all.

Third time with the device. I was under the impression that I was on a bipap from my conversation with the tech and the label on the machine. I fell asleep right away and had also taken an ambient. Slept for 4.5 hours with the first part being free from hypopneas and as the tech increased the pressure from 6 I started have more and actually started having OSA’s. Finally I woke up from it all and my AHI was 23 at the end.

This puzzles me:

• 1. The first sleep study had no apneas - hypopneas only.
  2. The titration study had no hypopneas or apneas at a pressure of 6.
  3. The tech took the pressure over 6 and there were hypopneas and apneas resulting in an AHI of 23

Questions:

• 1. Why would the tech increase the pressure?
  2. Is it possible those apneas at the higher pressure were centrals? If there were no apneas during the first study it seems they could be related to the higher pressure.

AmoRanas - definitely get a copy of your sleep study. You want more than the "summary report". After much requesting I also got graphs and some other things. Here are links to mine. Yours won't look the same but you can see the type of information you might get.
viewtopic.php?p=151256
viewtopic.php?p=162252

[sleepyjane]

hi I probably won't be much help but just wanted to say I feel for you. In fact, the frustration came through your post and actually made me feel empathetic enough to tear up a bit for you.

I know how it can be wanting so bad to feel better and get things right and the office and doctors are rushed and vague and don't explain things, etc. They start forgetting the huge effects this stuff has on one's life and rushing everything and just setting a prescription and not taking sufficient time reflecting and making sure things are right.

I have had multiple symptoms of sleep deprivation (physical, emotional, and mental) for 15 years,,the whole while on treatment..only recently did I discover that several of these problems are associated with sleep deprivation( (I didn't realize, for instance, if one is deprived of stage 3 and 4 sleep that they get severe muscle pains...never would have suspected things like that were connected with my apnea.

This time, thank God, I found this board and I did a lot of research and I was very emotional, luckily, as I had not slept in 2 days due to other things. I went it and came across desperate and very emotional and sleep deprived. I told them all the suffering I had done due to this (for instance, over 20 years clinically depressed and 15 years suicidal).

I let it be known I was desperate to get help and it seems, for the first time, I became a person somewhat and less of a number. I also came in knowledgeable and had a list of specific questions and was firm on what I needed and wanted.

Thank God I got him to switch me from a bipap to a autopap and then an auto bipap within 2 weeks so going from cpap and those others, I finally feel I got a good machine. They were supposed to deliver it today in fact but doctor's office never faxed in past 10 days and also set a pressure that the machine can't do (that inspires confidence in the doctor)..the provider told me he and other doctors need a rep to explain the machine as this is a common problem..the sleep doctors not knowing how the machines work..well, no wonder they don't recommend them if they don't know how they work.

The good thing is this board is going to help you. I learned more in 2 weeks on here than in the previous 15 years and by knowing was able to help to get me own treatment better and not just leave it to the doctor.

You are not a baby..sleep deprivation itself makes us emotional..the whole thing is frustrating and we so want to feel better. Even though my treatment did not fix any of 15 or so problems when set too low, it did make the morning headaches go away.

The bipap sounds kind of tick tock or like breathing in and out and down with where you can hear it kind of breathing in and out. A cpap just sounds the same constant rush of air..if you can remember, how it sounded in the hospital on your 3rd try, maybe that will give you some idea if it was a bipap.

Also this information may be on your sleep study report ..mine said when I was on a cpap and when I was on a bipap which they tried at the end. Definitely request your sleep studies..this is the first time in 15 years I ever saw mine and I am kicking myself for not getting earlier one..I am currently awaiting all my medical records.

My doctor wrote me a prescription for a single ambian...I don't think they had them at my sleep center. The bed is important. My bed I feel affected my study. In a past study, they said I was one of the most restless sleepers and was all over the bed and woke up with the cord wrapped around neck a few times. Here, the center had a nice room but memory foam bed which was VERY soft (I have harder bed as I have back problems). To my surprise when looking at sleep study, I started the night sleeping on my side and did not move from that position until I woke up a few hours later to use the bathroom and then I moved on other side. Study showed I stayed on that side. I was only on my back about 7% of the time.

At home, I feel I am on my back more and moving all night; since one has more apneas and breathing events on one's back, this may not be reflecting my normal pattern if my home bed is firm enough to allow free moement and their bred sinks you in and tends to have you stay put cause of difficulty turning, thus at home I may be on my back more than in lab and thus having more apneas etc.

Since it was difficult to turn over during the sleep study (I found it very hard to turn in the ultra soft memory foam) this may not be an accurate representation of a typical night for me..so the bed affected or possibly affected the study at least a little of it. All the money they make, you think they could get better beds.

It is interesting that the higher pressures actually were causing the hypopneas for you. I don't think this was the case with you but I have heard at the very high pressures, it can trigger central sleep apneas.

Keep in mind at high pressures I was just told by my doctor it can cause one to retain carbon dioxide in one's lungs causing breathing/lung problems. Nice how no one told me this before when they switched me from bipap to cpap 12 years ago and started messing my lungs. so this may be another reason to get the bipap.

I would ask doctor for a bipap..the insurance may pay it if he prescribes it. I do know when I first started on the bipap for the first time ever it was very hard to exhale, I cried as it was hard to get used to from regular breathing but now I prefer sleeping with it and am used to pressure 20 with no problems so one does get used to it. I will start a full face mask next week and try to keep in mind..it may take a while to get used to it.

I think the best thing you can do is be informed, be insistent, and if you sound like you know what you are talking about, they may listen more than with their other patients. If you cannot get the machine you want (some companies let you rent the machine first if you wanted o try it), then consider changing doctors if you can as the effects of sleep deprivation can rob you of the quality of your life, making the time and effort spent researching, insisting and, if warranted, seeking a different doctor well spent. I do wish you well.

_________________

[AmoRanas]

Thank you all for replying. I can't begin to tell you how much it means to me.

It is amazing how apnea has changed my life over the last 10 years, the daily suffering and all this time not one of my doctors ever mentioned anything. I am full of anger and I felt like it's just another doctor rushing me through the door.

I'll stay persistant. Thank you for your guidance and support.

Angelique

[Snoredog]

nearly all sleep labs will titrate you using a Bipap machine. The machine they use is remotely controlled and they can make it emulate almost any machine except for an ASV. Some may even be equipped to do that.

Just because they titrate you on a bipap doesn't mean your sleep really benefit s from using one.

Normally you have to first trial a basic cpap machine therapy before going to autopap or bipap, even if it is known you need one from the start. Nearly all insurance has that in their policy (except for kaiser, who uses a autopap for titrations). Doctors can get around that with a letter of medical necessity.

If your pressure is only 8 or 10cm, you are not really gaining much going to a bipap. A bipap is better suited if your pressure is high like 15cm or higher. If you were given a Remstar it should have Cflex which offers some relief.

[blowfish]

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[cohodependent]

Yeah, what Snoredog said! The machine we use to titrate in our lab has the ability to do every thing from Cpap to Bipap to straight timed Bipap. We have the ability to change the pressure and mode from the tech room. Only way to do it with out having to go in and out of the room all night long. I am sure you were titrated on a flow generator just like our. The tech would have used it in the Cpap mode.

The other thing, the AHI of 23 was for the whole night. It takes time to get the pressure up to where you need it to be. If you go too high then things tend to get worse. I try to get as much data as I can for our Doctor so he can make the choice of pressure. It is better to go too high, than not high enough. The Doc should be able to review the study and see at what pressure setting you were best.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, CPAP

[christinequilts]

nearly all sleep labs will titrate you using a Bipap machine. The machine they use is remotely controlled and they can make it emulate almost any machine except for an ASV. Some may even be equipped to do that.

With my ASV titration, I had dueling xPAPs- ASV on one side the bed and a Synchrony on the other...if they needed to switch machines, I think you would have needed to move from one side of the queen sized bed to the other-lol

Almost 4 years ago, I know the lab used BiPAP S (old 'ironside' tank Respironics BiPAP S) for all their titrations, and only certain rooms could be used for BiPAP ST titrations, which were brought into the room. Now all rooms can do BiPAP ST (Synchrony's) but they only have a couple set up for ASV.

I didn’t get by 2.3 hours of sleep and the technician didn’t give me the ambien that the doctor indicated. I didn’t ask because I thought that maybe I was supposed to bring one of my own.

Do you normally take Ambien? Doctor will script it sometimes for people who don't typically take it, but very few labs will 'dispense' Ambien or any other medication, because of legal issues of who is licensed to dispense medications. Even if they say they will, I'd still bring my own if I had it, just in case.

Third time with the device. ...Finally I woke up from it all and my AHI was 23 at the end. I finally had a day without a headache. I was so happy.

Definitely need to know what your projected AHI was at different pressure, not the average for the entire night at various pressures. Looking at your results can help you understand your treatment better too, and at this point, how you feel about your treatment is big part of your success.

Everyone typically starts with straight CPAP on titration, even in my case were a BiPAP ST titration was ordered on my original titration, they had to follow protocol and show CPAP and regular BiPAP didn't work before trying BiPAP ST.

And no, you're not being a baby- it takes some getting use to. I had to go through an adjustment period with my Adapt, even though I'd used BiPAP ST for 3 years prior. I think at the lab, most people go in with an expectation of not really wanting to use xPAP and not expecting it to help much, even if we know rationally it can help. When we feel pretty good in the morning, we suddenly have great expectation for that perfect first night at home, which isn't always perfect, as you found out. And yes, there were nights I wanted to bag the whole thing and go back to my old machine...and a few times I'm surprised the mask didn't end up across the room.

[sleepyjane]

Thank you all for replying. I can't begin to tell you how much it means to me.

It is amazing how apnea has changed my life over the last 10 years, the daily suffering and all this time not one of my doctors ever mentioned anything. I am full of anger and I felt like it's just another doctor rushing me through the door.

I'll stay persistant. Thank you for your guidance and support.

Angelique

It really does make one anger and remember even sleep deprivation itself makes one angry. I felt the same way recently..I mean suicidal every day for 15 years (a big part of this was due to the antidepressants themselves as FDA black box warnings and increased suicidal ideation in some people taking antidepressants now show us they do), but had I had proper treatment I never would have been so depressed and gotten this treatment that proved so toxic to me. I mean imagine living every day wanting to die for 15 years worth of days. I mean what if I'd have carried through on it..this messups of doctors not fixing the problems might have contributed to ruining my kid's life. So the ramifications of these type of doctors is astounding.

I think how did that affect my life when I have also been jerking my leg for at least 12 years and noone but the lab technician mentioned it to me and doctor never discussed or offered or said I needed treatment until a month ago.

And this is the best doctor I have had of the 4 I had over last 15 years since diagnosis. Here are just a few of the symptoms I have had that I am recently discovering are all most likely linked with sleep deprivation and as a result of my three sleep disorders. Had I realized all these were linked to this, had I found these boards sooner, imagine how the quality of my life had been improved, but now thanks to being insistent and thank to the advice on these boards, I have hope that the next 15 more be better.

Connected I feel are these things: severe memory loss, lack of concentration, difficulty comprehending things, cognitive decline, fogginess, severe clinical depression, anger, irritability, rages, sadness, extreme emotionality (for which I receive great criticism), weight problems (at least in part as sleep deprivation reduces leptin which lets you know when you are full and other hormones/enzymes leading to carbohydrate craving and weight gain), complete and utter exhaustion with no energy, ADD (which apnea mimics --I never had this as a child), higher blood pressure, metabolic syndrome, blood sugar problems, muscle pains and cramps, frequent night time urination, respiratory problems (from retaining CO2 due to doctors putting me on cpap from bipap despite having high pressures and knowing this is the results statistically..there are a few other ties but I forget what now (memory problems you know..I keep forgetting the ginkgo).

How else should we feel when these doctors hold so much power over how we subsequently feel by their decisions. Good decisions sometimes take time but they are so overbooked they don't take it. Thank goodness, he was open to my strong suggestions, I think this or that would help.

I am good at picking up body language and let me tell you, I was picking up they thought I was a real pain, some staff were downright rude, but in the
long run, who cares..I just see them occasionally but I live with myself every day. The provider just left 15 minutes ago and I am now the proud possessor of a auto bipap set I believe at the optimal settings, a new full face mask, and hope that tomorrow will be a better day (please God).

I also identify with anger in not being told anything..never told of having PLMD despite it showing up in last four studies or offered treatment, never told about full face masks (had no idea thy existed before last 6 weeks), not told about tubes being too long, or retaining carbon dioxide in lungs when they could have prevented this since they knew and had I not asked why he was switching me from cpap to bipap, still would not know this was likely causing some of my breathing/lung problems, never knew about auto pap or bipap, effects on my health, importance of proper treatment beyond the barest briefing, and so forth.

This board and its people are the reason, I stand here with hope that I may improve. Now we all have better days ahead. If only all doctors were doctors would be able to put themselves in another's shoes and then try to treat us as they would treat themselves or a loved one. I am glad you are going to be persistent and learn also. May your life soon improve.

[chennOR]

AmoRanas wrote:
It is amazing how apnea has changed my life over the last 10 years, the daily suffering and all this time not one of my doctors ever mentioned anything. I am full of anger and I felt like it's just another doctor rushing me through the door.
________

I too get so much good advice on this forum. I wanted to let you know the best advice I've followed is to change one thing at a time. I was fiddling with everything each night and I couldn't stand it and I was ready to "take on the docs and the insurance co and all the neighbors who've been rude to me and . . . . ." And I am generally an easy going person. UNTIL I started using my cpap. I was so determined to do it, yet it was hard to adjust to. There are a lot of adjustments your body is going through - this can be overwhelming - so try to be patient with yourself.

Keep posting, listening to the good advice and keep using your machine.

I've been using mine every night since Feb 26, 2007 and just last week got a big increase in stamina. Still nothing is balanced out just yet, things keep improving but they aren't quite in balance. But now I am more positive things will keep improving and as I adjust - things will come into balance.

I went through a period of time where I was really angry at all the doctors who missed the sleep apnea and allergies and deviated septum, and GERD, etc., etc. But as I get more good sleep each night, I get less angry about things. Now I know when I am able to handle difficult situations and I wait until I am ready. Before cpap I handled them "when I flew off the handle".

Keep checking in, posting, reading, learning, sleeping, and let us know how you are doing. Sending encouragement your way.

Carol

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