Struggling Newbie here...

[Orionstarr]

Hello Everyone!

Just wanted to thank you all for an extremely informative and caring forum. I am brand new to the cpap experience, and I must admit I have been having a very hard time adjusting. Reading what everyone has to say is making the transition easier for me though and I appreciate each one of you. Since you all have shared so much, I wanted to share my story with you and let you know if you have any suggestions for me I would be very grateful. I also thought it important to let anyone who may be deciding against the treatment, like I did years ago to please stop and reconsider. Do what ever it takes to make your treatment work... please.

I had a sleep study done over 4 years ago and was told at that time that I had small pallet that was causing severe apnea and needed to be on the machine... I tried at that time, I honestly did, but could not tolerate the mask at all or the feeling that I was suffocating and could not breath, I could not even make it through the sleep study so they could calibrate my pressure. Other than the apnea I was in good health, young, and only slightly over weight. (maybe 15-20 lbs) I quickly gave up on the idea of going on cpap and ignored the health risks. In my ignorance I thought heart complications and the other risks of untreated apnea were something that happened to 'other people'. I justified this by telling myself I had been sleeping for 30 years already and was not dead yet... plus...well...I'm ashamed to say it but... hey, they just were not sexy!!

Fast forward 4 years and here I am yet again trying to adjust to cpap. The important point here being that during those years that I SHOULD have been using that machine... I was diagnosed with ADD because I could not concentrate and had all the symptoms of ADD. (which I know now were most likely apnea related and NOT ADD at all) I was put on Adderall because of this diagnosis, which of course made it much easier for me to go without sleep. Hey, those pills made me wonder woman I once went 4 days with zero sleep!! I was hospitalized 6 times with uncontrollable asthma and was give soooo many steroids that with in a years time I had gained 80 lbs!! My health (And spirit) spiraled down hill from there. I had a heart attack 6 months ago 10/06/08 (Yes, before the age of 40...) have had 2 angioplasty surgeries, had a stent implanted in a coronary artery, developed high blood pressure and I am also now on the full range of post heart attack medications, in fact, I am on 12 prescriptions. The worst part is the anxiety and panic attacks that I have developed because I am just plain scared. Every time I have a chest pain or get a little short of breath I become terrified I am having another heart attack and sudden death is immanent... they have me on Klonopin to help with the panic, yup another medication.

I do not have a crystal ball and I am not a fortune teller, but I can not help but look back and wonder where I would be today had I NOT GIVEN UP.

I had to ask my cardiologist to set me up for a sleep study as I knew if I did not speak up it would never be suggested. I also knew I needed to sleep if my heart had any chance of healing and my health had any chance of improving. This time I am determined to do what it takes to make this work. I slept less than 2 1/2 hours during my sleep study and had 91 apnea episodes. (I didn't even know that was mathematically possible. ) I slept even less when I went back for the second night of the study but some how they calibrated my pressure at 13. Because of allergies and asthma I am a mouth breather so I was prescribed a full face mask and and was given a standard pressure cpap machine. (Resmed S8 Escape II with H4i humidifier) So far I have only been able to tolerate it for 2 hours max per night. I wake up gasping for air and am forced to take it off. I have tried (against my better judgment) taking Ambien but continue to awaken every couple of hours and wake up in the morning with the machine still running and the mask lying on the ground or the on the bedside table. It is so disheartening. It has been about 8 nights now. I let the doctor know I was having troubles with this and his advice was basically "Buck Up" and keep trying. I am trying and will continue to do so. Failure at this point is not an option and I am convinced my life literally depends on my success. I have tried pur-sleep aroma therapy hoping that would make compliance easier, I have had it now for 3 nights and so far I don't notice too much of a difference.

I am wondering if perhaps with these other health issues and the problems I am having (Feeling like I am fighting to breathe, repetedly awakening and removing the mask while asleep) if perhaps the Doctor gave me the wrong kind of machine. Maybe I should be on bi-pap or a-pap? (I did not even know these existed until reading this forum...) My insurance covered the machine so I doubt they would allow a new one 2 weeks later. Does anyone have any suggestions on this?

Thanks for listening, I will not give up and I hope anyone out there being faced with the decision to "Comply or not to Comply" will not make the foolish mistake I made, and some how, some way make the treatment work for you.

[tossandturn]

Wow. What an experience, thanks for sharing. Congratulations for giving this another go, you know it will help you. I applaud you for coming back and trying again. Whatever support we can give you, we will. Hang in there!

[Julie]

Hi, I was wondering if you've been using the ramp feature on your machine - Respironics machines have it, but I don't know if yours does. It's a button you push on going to bed that very gradually pumps up the air pressure to the setting prescribed, rather than your just immediately starting out at that setting. I mention it because so many of us have found that the starting pressure (using the ramp feature) is so low we can't breathe at all, and have disabled it on our machines, preferring the machine to go straight to the prescribed pressure, especially as we don't find that difficult at all, beyond getting used to the sensation the first time or so, and providing the prescribed setting is not so high (far less common) that it could be hard to go straight to it with no 'lead-in'. So, you might want to think about that if in fact your machine has ramping and you've been using it. Another point might be that your MD is very conservative and prescribed a low setting to begin with, making it hard for you to adjust in general, in which case you might want to ask him to raise it a notch, or else learn (here) how to do it yourself as most of us do too. One more possibility could be your machine (again) might not have a feature called Aflex or Cflex that the Respironics ones have that makes exhaling easier for those of us who find it a strain, and if that's the case with you, you might even want to consider switching machines, if either you or your insurance can afford it.

[Wulfman]

This is a little confusing......

(Resmed S8 Escape II with H4i humidifier)

However, your profile shows you have the S8 Elite II.

The previous Escape models did not have exhale relief. However, according to their website, the Escape II should have Easy-Breathe Technology AND EPR (Exhale Pressure Relief).

They still don't have data-capability, but if you're having trouble breathing out against the pressure, the exhale relief should help. However, it DOES drop the pressure and may make it possible for more events to occur during the exhale process.

Den



http://www.resmed.com/us/products/devic ... c=patients

http://www.resmed.com/us/products/s8_es ... c=patients


Discover quiet

The entry-level CPAP device in our S8™ Series II, featuring the following new benefits:

* New whisper-quiet operation is 60% quieter than before
* New Easy-Breathe technology – ResMed’s revolutionary new therapy system
* New and improved EPR™ with Easy-Breathe technology for enhanced patient breathing comfort
* Usage-based compliance download for accurate patient monitoring
* Data card – a standard feature included for easy two-way data transfer

[kteague]

Thank you for sharing your experience. Who knows how many will be influenced to persevere in their treatment because of your words. Glad you are "at it" again and hope you can get things worked out to be effective for you.

If you are going to request a machine change, the sooner the better. Check your titration report for 1) if you slept enough to be titrated, 2) if you were supine and in REM, and 3) if they indeed resolved your events at a pressure of 13. If the answer is no to any of the above, you would be justified in requesting a switch to an autopap that will find your needed pressure, or at very least insist on a data capable cpap.

Taking your mask off during sleep could be due to an ineffective pressure and a sense of suffocating. Or it could be just a part of the mask feeling foreign. Or it could be a combination of both. If it's just a matter of getting used to it, that behavior should stop over time. But again, without a data capable machine, you won't know know if your pressure is effective.

Until you sort things out, it may be a good idea to not sleep on your back, since some people's apnea is worse when on their back. And elevate the head of your bed just a few inches. (That's only if your cardiac condition doesn't prohibit those suggestions.) Best wishes as you make this work this time.

Kathy

[junie]

Thank you for sharing your story glad to hear you have decided to come back, good luck
to you.

[rested gal]

Welcome to the board, OrionStarr. It's all going to get better for you, now that you've found your way to this message board.

The other posters have suggested good trouble-shooting things to look into.

I'll get several of my pet peeves out of the way first!

I had to ask my cardiologist to set me up for a sleep study as I knew if I did not speak up it would never be suggested.

It's amazing to me, that by now every heart specialist is NOT automatically sending their patients for a PSG sleep study. Or at the very least, every single cardiologist should be screening aggressively for Obstructive Sleep Apnea. Every single one of them should be doing that with every single one of their patients, imho. grrrrr.

Good thing you knew more than the doctor about OSA and its effect on the heart. Good thing you spoke up. The doctor should have.

About the CPAP treatment the doctor prescribed after your sleep study:

I let the doctor know I was having troubles with this and his advice was basically "Buck Up" and keep trying.

Unfortunately too many doctors are too busy and are clueless about cpap treatment difficulties. They figure their job is done when they diagnose and prescribe. They figure it's up to you and the home health care equipment people to work through any issues you have with the treatment itself. In a way, that's ok, but the DME (durable medical equipment...the home health care store) is often too busy too, and often clueless about treatment issues as well. And is concerned about the profit bottom line and may not go the extra mile to be sure you receive a mask you can actually "sleep" in. Even if an employee there does know what might be a problem for a new cpap user and what might help make it go better for you, again, they're often too busy to take the time to help you work it out. Too many people are handed a basic machine and mask, and then left to sink or swim on their own without the right kind of support.

Even if the person contacts the DME for help, too often the person "helping" them doesn't think to look for leak problems within the first several days. If they've given the person a basic machine like a ResMed Escape or a Respironics Plus there's no leak data to be seen, anyway! Massive leaks can be a major culprit for ineffective treatment.

If it's mask discomfort, ramp pressure issues, difficulty exhaling against pressure, claustrophobia or panic with a particular mask, the DME should be troubleshooting all those things. But too often the DME, no matter how well meaning or caring, just doesn't know what to do, or is too busy.

You, with the help of this message board, can do with the professionals drop the ball at doing. You already have the right attitude:

This time I am determined to do what it takes to make this work.
---
Failure at this point is not an option and I am convinced my life literally depends on my success.
---
I will not give up

Your story and your post will be extremely helpful to others that might be discouraged and ready to throw in the towel:

I also thought it important to let anyone who may be deciding against the treatment, like I did years ago to please stop and reconsider. Do what ever it takes to make your treatment work... please.
---
I hope anyone out there being faced with the decision to "Comply or not to Comply" will not make the foolish mistake I made, and some how, some way make the treatment work for you.

I think everyone who reads your story was nodding their head, "YES!" when Kathy wrote:

Thank you for sharing your experience. Who knows how many will be influenced to persevere in their treatment because of your words.

First thing I'd do is go back to the DME and swap the Escape for an Elite II (be sure the Elite has " II ") at the end of its name. You really need a machine that can give you more data than just "hours of use" since you're going to have to pretty much handle your own cpap treatment yourself, it seems. I'm still annoyed by the doctor's dismissive, "Buck up."

It may be that another type of machine will be better for you, but for now, until you can sort through all this more, at the minimum you need a machine that can show you AHI, AI, HI and Leak data. So try to get the DME to exchange the Escape for an Elite II. Both are "CPAP" and both are covered by the same insurance billing code.

This thought of yours is quite possible, depending on what showed up in your sleep study:

perhaps the Doctor gave me the wrong kind of machine

That's why it will be important to do what Kathy suggested about getting copies of your sleep study results -- both the diagnostic and titration reports. Not just a doctor's one page summary. Ask for the full NPSG (nocturnal polysomnogram) reports for both. Those reports should have histograms and charts and should probably be anywhere from 2 pages each to a dozen pages. You're not asking for the raw data. You just want the full PSG report(s) that was sent by the lab to the doctor who then dictated a summary report...you don't want just the doctor's summary which is usually the most that's given to a patient, if anything at all is given to them.

In the meantime, don't worry about whether the machine is the right type of machine. But do worry about getting the DME to swap the present machine for the Elite II. Later on, after you get the full sleep study report, you can get help in determining if a completely different type of machine might be better treatment for your particular type of sleep disordered breathing. A different type of machine will require a different prescription anyway. While "Autopap" does fall under a "CPAP" prescription, an autopap is not necessarily a good choice for someone with certain kinds of heart problems. A bilevel machine or a very specialized ASV (adaptive servo ventilator) type of machine might be in your future, but it's wayyyy too early to worry about that.

As the smart poster nicknamed "StillAnotherGuest" says...Gotta know what needs treating, before you decide what to treat it with. That's why you need to get the full reports from your diagnostic and titration sleep studies for a second opinion or two, or three.

You're here now, and you're going to do fine. You can relax more now.

[Orionstarr]

Wow thank you all for your responses and support!

I've never used a forum before so I'm not sure if there is a way to respond to each post or just make a general post, I'm sure to catch on eventually...

Hi, I was wondering if you've been using the ramp feature on your machine - Respironics machines have it, but I don't know if yours does.

Yes, mine does have a ramp feature, I have it set for 5 minutes because I find if I put the mask on at full pressure it is just too much - but any longer of a ramp up I can't breath at all because the pressure is way to low. I've called the sleep study doctor yet again as I had another rough night last night ... still waiting for a return call.

The previous Escape models did not have exhale relief. However, according to their website, the Escape II should have Easy-Breathe Technology AND EPR (Exhale Pressure Relief).

They still don't have data-capability, but if you're having trouble breathing out against the pressure, the exhale relief should help. However, it DOES drop the pressure and may make it possible for more events to occur during the exhale process.

Wulfman, sorry for the confusion (This pictures looked exactly the same I do indeed have a S8 Escape II - and according to the user manual, it does indeed have 4 settings for Easy-Breathe Technology and EPR ... the settings are 1,2,3, and off. According to the manual this choice on the user interface is only available IF your doctor lets you have access to the feature, which apparently mine has not. I do not have any idea what setting it is on or even if they have this feature disabled which I am guessing is most likely the case. I have no idea how to access this feature and find out what it is set at. I would ask the sleep study clinic/doctor that gave me the machine... but every time I call over there I get one of the 'nurses' and they say that only the doctor can help me with that... and is either not available or not in today (which was their excuse this morning) and I have still not received a call back. (Day 3 of trying to reach them) Do you know how to access this information? The resmed website has very limited information. Thanks Wulf

I don't know if it is ok to mention specific clinics or doctors in this forum so I won't, but I would like to add that the place where I had my study done was a VERY SMALL private clinic. They have 3 beds and only one very strung out tech to monitor everyone. The night I went back for my titration he was sick as dog and left all 3 of us ALONE in the clinic while he went out to get some 'theraflu' and a bite to eat... he also told me he is not a nurse and has no medical training other than how to run the tests. I asked him what would happen in the case of an emergency (which, with my heart condition was a big issue for me) he chuckled and said "Well, I would just dial 911... but nothing like that has ever happened before..."

This is where I got the equipment, I was not give a prescription or a choice. I saw the actual doctor when I went back during the day for the 3rd time. He spent a total of 3 minutes with me did no examination or anything. He just said that I stopped breathing 91 times in aprox 2 hours and that my 'pressure' was 13. Then he left, a tech came in and gave me the equipment, pressed a few buttons on it presumably to set it and sent me on my way. The mask that I used during the titration study was not the mask I received. When I expressed my concern about this (I had tried the mask they were trying to give me during the study and could not tolerate it so the tech gave me another mask from Fischer to use the night of the study) She said 'these are the masks we use and the only ones we have, you'll get used to it' end of conversation. I was supposed to get a medium, the tech SAID it was a medium, but when I got home and looked closer the size on the head gear was indeed a medium... but the mask was a large! I called them back and was told they didn't have any mediums in stock so I would just have to 'make do' and use the large as a loaner until the other ones came in. Ironically, even though this mask is WAY too big for me, it works. If I put it where it is supposed to go, the top of the nose bridge reaches mid forehead... but if I move the nose bridge down where is belongs, it encloses the entire bottom of my face, chin and all... yet there are no leaks and I can tolerate this one much better than the medium. Go figure...

If you are going to request a machine change, the sooner the better. Check your titration report for 1) if you slept enough to be titrated, 2) if you were supine and in REM, and 3) if they indeed resolved your events at a pressure of 13. If the answer is no to any of the above, you would be justified in requesting a switch to an autopap that will find your needed pressure, or at very least insist on a data capable cpap.

Taking your mask off during sleep could be due to an ineffective pressure and a sense of suffocating. Or it could be just a part of the mask feeling foreign. Or it could be a combination of both. If it's just a matter of getting used to it, that behavior should stop over time. But again, without a data capable machine, you won't know know if your pressure is effective.

Kathy, thanks for the good advice, I knew none of this and this information and reports were not given to me, I still do not have these answers. I am going to try to get a data capable machine, I have not figured out the 'how' part yet, but I will. Since there seems to be no supervision and ZERO support from this 'sleep disorder clinic' like so many of you have had to do, I need need to become informed so that i can oversee my own treatment.

To Rested Gal ... you are my new hero! Thank you so much for your thoughtful replies, excellent advice, and for giving me hope for the 1st time in a long time!! I am so glad that that I found you guys, what you are doing here is HUGE and makes such a difference, I can't put into words how much it means to me.

First thing I'd do is go back to the DME and swap the Escape for an Elite II (be sure the Elite has " II ") at the end of its name. You really need a machine that can give you more data than just "hours of use" since you're going to have to pretty much handle your own cpap treatment yourself, it seems. I'm still annoyed by the doctor's dismissive, "Buck up."

It may be that another type of machine will be better for you, but for now, until you can sort through all this more, at the minimum you need a machine that can show you AHI, AI, HI and Leak data. So try to get the DME to exchange the Escape for an Elite II. Both are "CPAP" and both are covered by the same insurance billing code.

This I am working on ... but in my case the DME is this very 'lame' sleep study clinic. It's in now 1PM here and I still have not heard back from them... I called at 9AM and 11 and even took the afternoon off work to try and get this taken care, I'm not sure what to do from this point, call my insurance company? The only troubleshooting advice I have been able to get so far is here in this forum. The doctor that runs this clinic is a pulmonologist by day and runs the sleep studies at night... it's a hard thing to accept but I truly believe this is just something he is doing for the money ... he supplies the machines which I'm sure he picks up at a discount and then bills the insurance companies what I am sure are very inflated amounts... I can do the math. The lack of education, follow up, help etc attests to the fact that this truly is all about the money. BUT as a patient... where do I go from here? What do I do?

I asked the 'nurse/receptionist' on the phone this morning for copies of both of my sleep studies so that I would have some answers and information for the wonderful people here on the forum who are trying to help me, she informed me that it was their 'policy' to only release a summary to the requesting physician, which in my case is my cardiologist. She told me that the summary was faxed to her already and if I wished to see it I would have to ask her, however when I asked my cardiologist 2 days ago she said she did not receive anything and probably would not since she is not the one treating the apnea, the clinic doctor is... I informed the woman of this and she became very snippy and said "Well, I'll just have to call them and find out." then promptly brushed me off the phone.

I'm a pretty mellow person but I can honestly say this is all starting to really make me angry!! Don't patients have a legal right to their medical files and test results? Makes me wonder what they are trying to hide. It is also more than overwhelming as I feel that I am at a dead end. The scary thing is exactly as you pointed out and "StillAnotherGuest" said, Gotta know what needs treating, before you decide what to treat it with. How can I have any piece of mind and know that they are indeed treating me correctly when you are being met with so much resistance in getting information and have been supplied a machine that does not give reports?? Because of my heart condition, my doctor has me on a restrictive part time schedule at work so needless to say I can not just go out and buy a new one... IF they had given me a Rx could possible inquire about getting one elsewhere, but they did not ... and I'm sure they won't I'm sure because they filled it themselves! Seriously, where do I go from here?

You just want the full PSG report(s) that was sent by the lab to the doctor who then dictated a summary report...you don't want just the doctor's summary which is usually the most that's given to a patient, if anything at all is given to them.

I guess this is the problem - the lab and the doctor are one in the same...

I'm going to end this for now and take some action, I'm heading over to my Cardiologists office right now to get her on this - I have a good relationship with her and and will sit there until she gets me the information I need from the sleep clinic since she is the one who referred me to them in the 1st place. Wish me luck. And thank you again all of you, for all the hope, help and support. My apologies for being so long winded... I never knew I had so much to say!

[Babette]

1) Glad you found us! We can help!

2) You're a smart cookie and a fast learner!

3) If you decide you want to try another mask, several forum members are running "Test Drives" for masks, so you can try it out before deciding to buy it. Check out the links in my signature line below for more info.

WELCOME!!!!!
Barbara

[alnhwrd]

Orion,

You DO have the right to copies of your medical records, including the prescription for the machine and the doctor's report on your PSG. Your rights are spelled out under HIPPA. If they keep stonewalling you tell them (politely)that their policy notwithstanding you are aware that under HIPPA you have the right to copies of your medical records and that if they do not provide you what you want you will take steps to protect your rights. Ask to speak to a supervisor. With the Rx you can buy what you need. Cpapauction.com has some pretty good deals. Of course, that doesn't solve your money problem, sorry !If you have a copy of the report and a sympathetic Cardiologist or primary care physician they can write you a RX for what you need as well.

Try pushing and holding the right and down buttons on your machine for few seconds. The Clinician's Menu should come up, which if you scroll through it would allow you to change your EPR settings. It is highly recommended that before you make changes to anything that you write the currents settings down in case you need to change it back again.

Good luck with your many medical problems. Remember that the past is the past and the fact that you are going to make this work now is what matters most.

[hummer3d]

If you need to access the clinicians menu try this link it tells how .http://www.cpap-supply.com/Articles.asp?ID=130 Once yo get in this menu you can check your current setting and change things if needed. I hope this helps you .

[rested gal]

In addition to the link hummer gave you, here's a link to an old post of mine that explains what the words "Change", "Apply", and "Exit" do, if you use the lefthand button under those words while going through a ResMed machine's menu:

viewtopic.php?p=226375#226375

[rux1960]

Hi there,

I can`t give you much about advice on the machine except that I have done homwoerk with the help of this poeple here before I decided which machine to buy ( even though mine was paid by insurance). the dme tried tos ell me what they wanted (resmeed I think) but after reading a lot I decide an aflex is worth as it can be both aflex and cflex. you have to take your power back and push your doctorsédme`s to ask for what you NEED orWANT...
I also waas diagnosed wioth ADHD during my masters which broght this as personal issue for research so now I am doing ( not sure if I will finish it) a PHD looking at adhd as a social-cultural construction( from a critical persoective of course)
needless to say I am against most drugs I think medical system is bankrupt and we are more or less victims to the way this managed care system ( whcih is all about being efficient= profitable)... I think too that if anything my traits are from the sleep problems as opposed to a brain disorder ( as ADHD is considered by the mainstream). I also had an asthma attack last year but never took any medication. I guess I am lucky I am still mild. so any way, for asthma you might want to change your diet (there are some books on the inflamatory efefcts of many foods) and also find and try to take a cours ein buteyko breathing. Do not expect doctors to know or to reccmend as not enough reserach is done and will not be probably be done as who wants to give up profits for their medications. for adhd is also some resaerch with kids taht sleep can be a cause of ADD symptoms...
I need some help myself as my sleep treatment ism not so great and finally I am buying software so I can monitor my therapy from home as opposed to goinf to the dme every few months in which they prin out last 7 days of treatment and for which they tell me my treatment is good. cling in here people are wonderful and take back your power. ADD peopel are very creative and special
so good luck

[Schnauzer]

Orionstar,

Thank you for sharing your experience. I start CPAP for the first time tonight (Fri 4-10-09). Your story helps me feel that I am not alone in my anxiety.