A Tale of Two Sleep Labs

I would just like to see if others have had similar experiences. This took place in Germany within the last two months.

At Sleep Lab No. 1, where I spent 4 nights (two without a mask and two with a nose mask), I was diagnosed with severe apnea (RDI 51.5/h). With nCPAP pressure of 14.6 the second two nights I got to RDI 8.4/h. I supposedly slept 82% (which I doubt very much) of the bed time. The primary data was not given to me, and I had only the doctor's summary. There was no differentiation of back vs. side positions. I was given a full-face mask and CPAP of 14.6 and told to live with it.

This experience frightened me so much that I went to another sleep lab (with a much better reputation), spent two nights (one without mask, one with) and got what I suppose is the equivalent diagnosis, but differentiated as AHI 60.8 back and AHI 10.8 side. The second night brought me to AHI 2.8 back and 0.8 side with a nose mask and APAP 6-15, which is much easier to take. I was given the primary data sheets.

My suspicion is that the doctor in Lab 1 did not properly evaluate the data, even though I spent twice as long in her lab. The failure to distinguish back and side positions, for example, seems to me grossly negligent, and I wonder if she looked at the data carefully.

Are you aware of such gross differences in sleep labs in your country? What do you think of this experience?

That is pretty much the state of the sleep lab industry in the U.S. and it needs radical redesign. Please see viewtopic/t60874/Why-I-always-insist-on ... tware.html for some comments on why sleep lab titrations are problematic and how the typical patient can take control and achieve a good therapy.

I won't bore you with stories of my experiences with sleep labs, but let me say they are worse than yours.

Your biggest complaint is about titration, but the sleep labs even have problems with diagnosis.

The renowned sleep doctor, Dr. Barry Krakow, has said false negatives are a big problem for sleep studies attempting to diagnose sleep-disordered breathing. He reported it was common to do three nights of sleep studies in his lab and only on the third night get a positive (and correct) diagnosis. (In the unlikely case I ever decide to sleep in another lab, Dr. Krakow's is at the top of my list.)

Also, Dr. Mack Jones, a sleep doctor himself, in his book Deadly Sleep, describes his own case in which false negatives were obtained for more than one night in the sleep lab.

By liberal measures, the compliance rate for CPAP is said to be about 50%. You can understand that if this rate is so low, part of the problem might be that the titrations are suboptimal - if you are still having many events or your pressure is too high and don't know it, you are unlikely to make a longterm commitment to CPAP.

It is good that you found your apnea was highly positional and you can use lower pressures. It seems to be rare for positional sleep apnea to be titrated properly. One very active sleep technician has told me there is not enough time to do it in one night so they don't bother with it.

I can only encourage you to get a data-capable machine and software at the earliest opportune time.

My first sleep study was conducted/read by a neurologist who supposedly was an expert in sleep disorders. Had his training at Johns-Hopkins. Well, I couldn't get to sleep and only slept for about an hour and a half the whole night. He read it as "normal". I questioned the fact that I'd only slept 90 minutes and it was still "normal", but hey........he was the expert.

I spent at least the next 6-7 years feeling horrible. My new internal med doctor suggested another sleep study at a different place about 3 years ago. This time I was allowed to take a xanax in order to get to sleep. My results showed moderate apnea, alpha wave intrustion, and no REM sleep after about 6 hours of sleep. This time I started cpap and my life has improved soooooooooooo much. But......my sleep doctor doesn't know much.........but at least he correctly diagnosed me. He even let me start cpap treatment without a night of titration at the lab (since I was refusing!).

I guess my point is, you just never know. We hope that the people who are taking care of us are good at what they do, but that isn't always the case.
How are you doing now?

Thanks for these responses. It makes me feel better to know that I am not the only one to have had this experience. I have a good deal of confidence in my second doctor, and I am doing all right with the APAP 6-15, and trying to sleep on my side. I think I'm stuck with my machine (Weinmann SomnoBalance), which I think is data-capable but unlike the ResMed not to the patient -- and after worrying about that for a while I think I'm better off not seeing the data myself every day because it would probably just give me more to worry about. Worry and sleep -- which is what this is all about, after all -- don't mix well. I am taking 20-25 drops of Trimipramine at night, which seems to help me get to sleep. Now I'm thinking about taking Flonase (or the German equivalent) to keep my nose open, since decongestants are not recommended, and am wondering how long I can safely continue with these medications (will post this question separately). In any case, I'm much better off than if I had stuck with Doctor No. 1 and her 14.6 CPAP.

Which model Weinmann do you have ( http://www.weinmann.de/en/homecare/sleep_therapy/ )? Some of the models are supported by patient software.

WEINMANNsupport is the supplemental PC software for sleep therapy devices such as SOMNObalance e, SOMNOvent auto-S, SOMNOvent auto-ST, and SOMNOvent CR from Weinmann.

The process-oriented navigation in WEINMANNsupport lets the user read out, display and generate a PC-supported analysis of therapy monitoring data. Patient compliance is clearly visualized for continuous and accurate monitoring and documented in detailed reports.

http://www.weinmann.de/en/homecare/slee ... _software/

You certainly don't have to download the software every day. I did this for a few weeks while I was getting the therapy optimized. But now that everything is stable, I only download once or twice per month or if I wake up feeling bad and want to see if something went wrong that night.

Roster, I have the Weinmann SomnoBalance, which apparently does show the data if it has been set for this (to be read by patient). I can try to get my doc to do this when I see him at the end of the month. It shows RDIs, not AHIs, but I guess that doesn't make much difference.

Apappy wrote:Roster, I have the Weinmann SomnoBalance, which apparently does show the data if it has been set for this (to be read by patient). I can try to get my doc to do this when I see him at the end of the month. It shows RDIs, not AHIs, but I guess that doesn't make much difference.

If it were me, I would push hard to get the software to monitor my own therapy. I would also ask around and search the internet, including youtube, to find out how to enter the clinician's menu and be able to change the settings myself if necessary.

Good luck.