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Very Difficult CPAP Titration
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I had my second sleep study (CPAP titration) recently.  My first was done professionally.  This one, I am not sure of.  Let me describe it and see if anyone else has had a similar experience.

After tech. attached electrodes, I was fitted with nose mask and then I prepared to sleep.  My nose got a little stuffy so the tech. turned off humidifier.  As time went on, I found more and more I wanted to breathe though my mouth.  Tech. fitted me with full nose and mouth mask.  Much better.  I could breathe with nose mostly but could also breathe with mouth when I needed.

Bed was not comfortable and was told to keep on my back during study (hate that).  I began to get used to the mask and breathing with it.  Though I did not sleep very well, I did go to sleep (briefly it seemed) from time to time.  As the night progressed, I noticed an increase in pressure regularly.  No end to the increase.  I was later told that this was because breathing could not be restarted by any previous pressures, hence the increase.

At some point, I detected what I presumed was BiPAP mode (high pressure on inhale, low pressure on exhale).  I did get a little used to this and would sleep occasionally.  Eventually, the pressure was increased to such a large amount that I was kept awake and very uncomfortable by this.  I found myself gasping for air with my mouth frequently, and sometimes the machine would be out-of-sync with my breathing.  The inhale pressure was tremendous.  This went on for about 2.5 hours and being painfully aware that there was no way I could sleep like this, and hardly bear it awake, I informed the tech.

He said he had been on the phone with his boss all night for assistance with my study.  He also said there was nothing more he could do and asked if I would like to end the study.  Since there was nothing more he could do, I said yes and signed the appropriate forms and left.  If I had continued the study, it would have lasted about another 2.5 hours.  I was tired, weary and frustrated and could not see spending another 2.5 hours of this torture.

Apparently, none of the pressures would re-start my breathing when it stopped during sleep and the highest pressure prevented me from sleeping, and sleep would be required to test this pressure.  A no-win situation.

I sent a letter to my referring physician describing my experience and he wants to set me up with a pulmonary specialist, who would be up-to-date on the latest treatments and discoveries.  Has anyone had a similar experience, even partially?  What was your outcome and solution?


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I've had several sleep studies, and I've had not one, but two VERY unprofessional studies.  But very different from what you're describing.

I am making the assumption you were being titrated because you were diagnosed with Sleep Apnea.

From what you've written, I don't agree that your titration was handled in an unprofessional manner.  Certainly they do not intend to 'torture' you, at least I don't think so!  But unless you inform the tech that you are uncomfortable they may not be able to 'see' that you are uncomforable via only the sensors.  At none of my studies did the techs realize when I was uncomfortable, even at the really well-handled studies.  I had to alert them.  I think they just can't spot it.  In most cases they only use the camera for a spot-check at predefined times for position, they do not watch you non-stop...

You do usually have to spend a certain amount of time on your back, especially if your diagnostic sleep study indicated your events are more frequent when supine.  Or if your events are of longer duration, or your oxygen is at its lowest.  They have to titrate for 'worst-case' scenario, if you do not have a relatively even AHI throughout the night, regardless of sleep position or stage of sleep.  

The fact that your SA was difficult to treat makes it all the more reasonable the tech continued to increase the pressure.  Changing you to a bi-level is usually the next step when CPAP is not doing the job.  In my opinion that was a very good tech that was on the phone with his boss.  He recognized you were a bit of anomaly and he did try to get the right information to successfully titrate you.  At one study, I was tried on a bi-level and like you, my breathing didn't sync with it and I felt like I was suffocating.  *My* tech shrugged her shoulders and gave me the spiel that things weren't going well and it was all MY fault.  She didn't try to get help or even try to work on the problem, just said I could stay or leave, it didn't matter.  I left.  Your guy did everything in his power to get a sucessful titration on you, with the equipment he had at his disposal.

It may be that the next step is a VPAP or similar for you, many sleep labs don't have these available as they are not commonly needed or prescribed, they are very specialized machines.

I do think meeting with a pulmonary specialist is a very good idea.  There is 'something up' with your SA that a doctor needs to get to the bottom of.

Do you have a detailed copy (5-6 pages with graphs) of the results from your diagnostic sleep study?  If you could post them here maybe someone would have some insight or opinions on what was seen and perhaps why your particular SA is difficult to treat.   If you don't have a copy, you should get one.  Here in US, at least, it is your legal right.

Blessings,
--pseudonym

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