Totaly Frustrated.

[nussy]

After 3 weeks with my CPAP I still don't see any difference. I spent a miserable night at the lab for titration (barely slept) so I am not sure if its a total waste of time. I now have an appointment in 2 weeks to see the doc. I just feel like packing it all in. Whats the point?

My machine is set for 5 until I see the doc. Is it doing any good at that pressure?

[roster]

My machine is set for 5 until I see the doc. Is it doing any good at that pressure?

It is very rare for anyone to report good results at that pressure - too low.

Get a data-capable machine with software if you want to become healthy.

[Gerald]

Sorry you feel frustrated.

Bottom line, I think your frustration is caused by a lack of knowledge. No one has helped you learn what CPAP therapy is all about.....and how it....exactly and precisely...works. Your sub-conscious (the brain that's "in-charge" while you're asleep) is not convinced the therapy is valuable (worth the hassle).

I'll try to help you with some insight. Sleep Apnea....sleep disordered breathing....is simply a slow, insidious suffocation. Your brain is deprived of O2....and it reacts in a negative way by causing certian chemicals to be released...that help prevent you from dying in your sleep. These "panic chemicals" cause all sorts of problems if your system is subjected to them....for too long a time.

Your best way out of trouble is to educate yourself.....like most of the people on this forum have done. To do well, you need to know more about CPAP therapy than do the people you are now depending on for your care. Start reading the information attached to the "yellow lightbulb" at the top of the page.

Another thing that is vital for you to know....."We can't manage what we can't measure"......and that means you need a CPAP machine that is full data capable.....with software that will graph each night....and give you a printout that you can study.

Finally, if you want confirmation that your O2 levels are deficient while you sleep, purchase a recording Oximeter....with software that will give you printed reports. I can recommend the SPO-7500 from turnermedical.com because it is a goode value (good hardware and software).

Boiled out, what you need is good tools and good knowledge. Once you get both, you'll be able to manage your own therapy....much, much better than anyone you can hire.

Gerald

[DreamOn]

Hello Nussy,

I'm sorry to hear of your ongoing frustration. Sometimes it does take some time to work everything out, so I hope you can hang on with this for a while. Gerald and Rooster both have some great suggestions, as usual.

For anyone not familiar with nussy's story from previous posts, his situation is rather unusual. My understanding is that he was sent home with a CPAP machine set to a pressure of 5 to use for several weeks before he had his titration sleep study. He recently had his titration study, and is now waiting to see his doctor to find out what his titrated pressure should be. He didn't get much sleep that night, so is doubting whether they got enough data, but the sleep tech mentioned "7" as a possible magic number.

As others have mentioned, a pressure of 5 is usually too low to make any difference. In fact, it can be rather difficult to breathe at that low setting. Because you have a very basic machine -- Resmed C-Series Tango -- there isn't going to be much you can do on your own as far as determining your optimal pressure. As several people have mentioned, that machine will not be able to give you or your doctor any feedback regarding apneas, hypopneas, pressure, or leaks (coming from either mask or mouth).

I urge you to exchange that machine for one that will give you the information needed. In the ResMed family of machines, the very least you would want is the ResMed S8 Elite II. Do NOT get the ResMed Escape, as that will not give you any useful data. Once you have a machine that's capable of reporting full data, you'll have more feedback regarding correct pressure by viewing the apnea/hypopnea numbers on the LCD screen. You'll also be able to troubleshoot any leak problems (many of us lose therapy air when our mouth opens during deep/REM sleep, and we may not realize this).

Everyone's situation is unique. It's possible that 7 will be the optimal pressure for you. If not, it can be adjusted. I'm doing fine at a pressure of 6/7 myself, enjoying many nights with zero apneas. And I feel terrific during the daytime. For others, that may not be enough. You're going to have to wait and see how you respond.

I fully agree with Gerald that education about sleep apnea is one of the keys to success. That and perseverance. There is a lot of information available on this forum, and there are many people that are happy to help with any specific questions you may have. You're just starting out, and until your machine is set to the proper pressure you will not see optimal results. Since your doctor's appointment is not for another two weeks, you're going to have to ride this out until then unless you're willing to experiment with pressure settings on your own. I am confident that everything can be worked out and you will soon be enjoying the benefits!

Best wishes,

DreamOn

[YawnGirl]

After 3 weeks with my CPAP I still don't see any difference. I spent a miserable night at the lab for titration (barely slept) so I am not sure if its a total waste of time. I now have an appointment in 2 weeks to see the doc. I just feel like packing it all in. Whats the point?

My machine is set for 5 until I see the doc. Is it doing any good at that pressure?

I am fairly new to this but I know what it's like to be foggy headed and tired and not feeling like you can learn all the info about this new condition and machines and masks and settings and OA's and HA's, blah, blah, blah. Don't try and learn it all at once. I recommend getting a software compatible machine also. I am wondering if since your sleep study didn't go well, your doc is trying to start you out slow and raise it every couple of weeks to get you used to the pressure change.

If you want to feel empowered, I would search the threads here for clinical instructions for your machine and find out how to raise your pressure by 1 cm. You can also call your doc's office and just tell them you feel like you need more pressure, that you are feeling "suffocation". They may tell you how to raise the pressure yourself.

If you know you need this, then don't give up.

[cotech50]

call your doc, get an auto cpap and get them to set a range they are comfortable with. I am going for my titration tonite but have been on an auto since 11/25 with a range of 7 to 15 and am running an average over 12. This was by recomendation of the pulmonologist who wrote the report.

[kteague]

Oh my, no wonder you are frustrated! As things stand, you are unnecessarily facing a lengthy trial-and-error period. Personally, I think waiting 2 weeks to discuss it with the doctor is not in your best interest. This is not a "getting used to" situation. You will not get used to ineffective treatment. If you call your doctor first thing Monday morning (are they available on the weekend?), I would say that this approach is clearly not working, and that you need to go on to Plan B. Ask them why, in view of the unsuccessful lab titration, you were not considered a candidate for an autopap. If they want to keep on the same path, tell them you are concerned that there would be a more direct means to determining a therapeutic pressure and the option was not even presented to you. Don't expect your challenging this to be well received.

As far as using your machine at a pressure of 5, don't consider this medical advice, just personal experience. Grossly inadequate treatment made me worse than no treatment. Without knowing the specifics of your diagnostic study and titration or the severity of your condition, it's hard to say much. But if you choose to not use the machine this weekend, at least either sleep in a recliner nearly upright or elevate the head of your bed and take measures to assure you don't sleep on your back.

Best wishes to getting off to a good restart.

Kathy

[nussy]

Thank you for all the advice. I should have educated myself before I purchased the machine. I will certainly ask ALOT of questions when I see the doc.

BTW I did not get the responses because I did not check the notify me box. Your all very helpful and I feel better now.

[roster]

I should have educated myself before I purchased the machine.

Me too, but better late than never.

Here is a list that I often give to friends.

Things To Ask About Your Polysomnogram (PSG) and Titration Study
1. Did I have any central apneas? How many?

2. Were there any comorbidities? What were they?

3. Did I breathe or leak through my mouth? How often? What do you recommend to prevent it?

3. Did I exhibit Positional Sleep Apnea (PSA)? Was my apnea more severe in one sleeping position as compared to others? Is my pressure requirement higher in one position as compared to others? (Often sleep apnea is more severe when sleeping on the back.)

4. Is there anything else unusual about the results?

5. How will I know my therapy is preventing apneas?

6. I am determined to own a data-capable machine and software to monitor apneas, hypopneas and mask leak. This will allow me to call your office with specific questions if I have problems with the therapy. Will you help me with the appropriate prescription?

In addition to the questions:

1. Get a copy of your PSG. It is your legal right to have one.

2. Get a copy of your CPAP prescription.

3. Make sure the prescription calls for a humidifier with the machine.

[DreamOn]

I should have educated myself before I purchased the machine.

You're not alone in that feeling, nussy. Most of us knew little to nothing about sleep apnea before we were diagnosed, so we all have to start from scratch. There are a lot of people who visit this forum for the first time after they've been using their machine for a while, seeking information and support to work through challenges with CPAP. It's only then that they realize that there IS a choice in machines. The DME suppliers don't usually tell them that and often sell them the machine that makes them the most profit.

Please let us know how things go for you.

~ DreamOn