Has someone had this experience

A relative recently had a sleep study which confirmed his apnea problem. He went to the second portion of the test optimistically thinking this would change his life as many had informed him it would do. Unfortunately it was a horrific experience. He doubts the competency of the technician. The technician tried both a CPAP and a BIPap machine. During the entire night my relative slept for approximately 2 hours only. This is confirmed on the report which notes that the patient slept poorly. The technician kept coming in and taking of the leads and reapplying them. The air was so cold that my relative stated it was "like trying to breather against an artic wind all night." He questioned if there was any humidity or warmth. The mask was so ill fitted that it whistled around his ears. Finally the technician let him go early. When he arrived at his home he was nauseous from the amount of air in his stomach that he dry heaved for some time, and he was extremely hoarse from being "parched" as he said from his sinus area to his chest. His ear drums felt like they were about to pop. No one has yet to give a clear answer if this was a competent study.

The study report clearly shows that he slept very little. I obtained the report and interesting enough; it notes that he had a central nervous system event of apnea during the second part of the study. So I do not want him to give up on this but no one is very helpful. The physicain who is reading the report is recommending that he get an autoset machine. He attempted to make an appointment to talk with her but her office informed him that she is booked through the first of the year. (At that time he will be subjected to a high deductible but at this time he has met his deductible). His family physician only repeats what the interpreting Dr. says. We don't understand how the interpreting physician can make a recommendation on such poor data? The insurance has already been billed and it is very unlikely that this sleep center is goingn to acknowledge that they did anything wrong.

He is a very well educated person. Is there a way that a prescription could be written for a machine which he would be able to titrate and work with himself? He appears to be more competent at this point than the people managing and interprerting his study. Will insurance buy the machine if he pays the copay with a prescription.It is sad that he went from optimism to a sense that this is just a "doomed experiment." Any advice would be greatly appreciated.

In actual fact - if he has a copy of his sleep study ANY doctor can write the prescription for him - veterinarian, dentist etc. Just have him make sure it IS for an autoset machine with FULL EFFICACY reporting and supplies and masks of HIS choosing.

If you go to the homepage of our hosts here at https://www.cpap.com, there is a neat article on how a prescription should be written to best serve the patient. Here is a link to the page http://c0149421.cdn.cloudfiles.rackspac ... on-LMN.pdf.

Cheers,
xena

Once he gets the prescription he can do what he wants. I bought an S9 Auto out of pocket (did count towards my out of network deductible) from an online retailer. Just fax or scan/email the 'script. I didn't care for the costing plan or the attitude of the DME so I told them to pound sand. If he decides to go it on his own, I'd suggest a machine that logs data so he can stay on top of his treatment. A brick (simple cpap) won't do him much good.

Ouch! I thought my sleep study was bad, but your relative's experience was far worse than my own, and would discourage anyone from treatment. I started on CPAP in April. I ran into the arctic wind problem myself when the weather changed this fall, but using a heated hose fixed that problem. Cold air does not hold much humidity, which would make the humidifier seem ineffective. The good news is that modern ResMed and Phillips Respironics machines are designed to use a heated hose, unlike my older-model machine. (I am using a jury-rigged setup known as a Repti heat cable).

I was scheduled for a split study (half diagnosis and half titration) but I was only able to sleep three hours so the lab was unable to complete the titration. My doctor gave me the choice of returning for a titration study or receiving a prescription for an auto-CPAP.

With a prescription for auto-CPAP, a titration study is unnecessary for most patients, although some people will do better with fixed-pressure CPAP. If needed, this can be discussed during the follow-up consultation after beginning treatment, and the doctor can set a fixed pressure based on the data produced by the auto-CPAP during treatment. (Your relative should make sure he receives a fully data capable machine such as a ResMed S9 Autoset or a Phillips Respironics 560 so the required data will be available to his doctor.)

Your relative's insurance sleep study requirements will be fulfilled by his diagnostic study. It does not matter whether he is titrated in the lab, titrated on auto-CPAP, or if he remains on auto-CPAP permanently.

Finally, a single central apnea event is insignificant and of no concern.

Sounds like the sleep lab tech was smoking something in the back room. None of that should have happened. I slept soundly through my titration study, and the tech apologized for waking me up at 0600 because he said I was sleeping so soundly. What Big Dave says is correct. Any of the better automatic machines like the PR 560 or the ResMed S9 Autoset will get him in the ballpark right out of the box, but it will take some interpretation of the data to set the lower level right to get optimal treatment, and to confirm that the machine is doing what it's intended to do.

However, while most patients can be successfully titrated and treated using only an automatic CPAP machine and data, there will always remain the question of whether your friend falls into the "most patients" category. Some folks have complicating factors that really need to be taken into account, and a competent titration study is the best way to make sure that everything is working correctly and that your friend is responding correctly to the treatment.

If your friend doesn't want to undergo another titration study (at a different lab!), he/she would do well to register and make use of the advice that is freely available on this forum.

Thanks for all the information!! I really appreciate it. It would appear as if there is a need for better patient education throughout this process.

Wait! Two hours of sleep is an invalid study. You mentioned that the tech tried a cpap and a bilevel machine -- presumably there was a reason for trying bilevel, but given that there was insufficient sleep for a proper titration, on what basis is the doctor recommending an autoset (apap) over a bilevel machine? It's very costly to buy a cpap or apap only to fail with it and have to then purchase a bilevel machine. I hope that doesn't happen in this case.

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Wow! Guess I have the best respiratory clinic in the world. My tech was great - fitted the mask prior to leaving me in the room. Room was comfortable and had amenities like TV, magazines, etc until I could sleep. Slept soundly for about 7 hours. My dr is wonderful and always concerned that my machine/mask fit and work for me. (he just cannot make me into a morning person!!).

You need to seek out another doctor and clinic for your testing. Don't let one bad apple spoil the barrel!

leal536 wrote:Wow! Guess I have the best respiratory clinic in the world. My tech was great - fitted the mask prior to leaving me in the room. Room was comfortable and had amenities like TV, magazines, etc until I could sleep. Slept soundly for about 7 hours. My dr is wonderful and always concerned that my machine/mask fit and work for me. (he just cannot make me into a morning person!!).

You need to seek out another doctor and clinic for your testing. Don't let one bad apple spoil the barrel!

I had a really good sleep study too. I had a room that looked like a small hotel room. With tv and recliner. She hooked me up with all the stuff, had me watch a video. Then I read my book for awhile. Before bed, she fitted me for a mask, and had me sit and breathe with cpap machine for about 5 minutes so that I would be familiar with it later in the night for the titration phase. I woke up once and needed to use the bathroom. I was embarrassed to ask to go to the bathroom only an hour into the study, so I laid there awake thinking about it. The sleep tech came in, and I realized later, she probably sees this all the time. She said she noticed I was awake and wanted to fix a wire. But I think she was just breaking the ice so I could ask to go the bathroom. Afterward, I slept for another hour or so, a total of 2 hours and 15 minutes during the diagnosis phase. I was severe with an ahi of 79, so she was ready to move on to the tritation phase. I remember her waking me up, saying they had enough data, and did I need to use the bathroom. After the bathroom, she hooked up the mask, I rolled over, and I slept soundly for over 5 hours. I remember waking up and feeling fidgety for awhile and dozing. I realized later that I was past 8 hours, so I was fidgety beccause I had slept well and was ready to get up. A different sleep tech woke me up 8am to let me know the study was done.

I felt really good that day, and the next night, I was back to my normal crappy sleep. I actually dreamed about waiting for my followup appointment, and being angry that I was going to have to wait 6 months. Clearly, my sleeping brain wanted the machine NOW.

Since the mask was comfortable and fitted perfectly at the sleep study, that is what I asked for when I got my machine. I was really pleased with my sleep study experinece. The sleep tech was really good at helping me relax in that type of situation. And her perfect fitting of the mask helped me choose the right mask. And when I struggled at home, I knew it was just a matter of practice since I knew it could fit well. Otherwise, I might have given up on a great mask.

The current truth is that only 20% of those who are medically commended to Positive Airway Pressure (PAP) devices are able to use them more than 4 hours per night at one year.

I believe that the non-scientific in lab Polysomnogram (sleep test) is a large part of why those numbers are so low. Honestly, how many prescriptions for sleep aids do thy need to write before they figure out that the tension of going to and trying to sleep in a lab invalidates any readings they get there. We do NOT sleep the same at home.

Since the titration is also done in the lab, same issues.

Both of these consider only one night. I know from looking at my CPAP data that I do not sleep the same any night. My body, my life, all are in constant change.

They currently have the technology to do in home sleep tests. They could develop even better systems if we made it a national concern.

So then if they put the Polysomnogram (sleep test) in the home and look at several nights of data and make the titration over several weeks – and – constantly monitor afterward as well as constantly but slowly titrate then the numbers should fall more in line with the 80% at a year able to use the PAP 100% of the time I do believe is possible.

Watching the people suffer here has inspired me to write my congressmen.