Need help with treatment

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
GrumpyInKC
Posts: 23
Joined: Thu Jan 19, 2006 3:01 pm

Need help with treatment

Post by GrumpyInKC » Tue Feb 21, 2006 11:10 pm

First a little background. I've been feeling tired for years, tried treatment for CFS about 5 years ago that included sleeping pills, vitamins, and all kinds of pricey supplements. I felt a little bitter and a lot poorer. Then my wife got a job as a sleep tech around March of last year. She only kept the job for a few months before deciding to quit because the hours and trying to be a mother. She did learn and observe enough to decide I was a poster boy for sleep deficiencies. So I first decided to make an appointment with my family doctor who recommended that I meet with a pulmonologist. I finally met with the pulmonologist in Oct. after several months of delays. The pulmonologist met with me for about 15 minutes at which time I gave him a brief background and my wife's observations. One of the things I mentioned to him was that I constantly had clogged sinuses, usually at night and generally if I sleep on my side it will be the side that I'm laying on. He checked my nose and throat and decided it didn't look too bad, so he wrote a prescription for Nasonex and recommended a sleep study.



I went through my first sleep study in November and due to the noisy environment didn't hardly slept at all in my estimation. Then in December I went back for a titration study, and due to my complaints about the noisy environment they tried to get me the quietest room. I slept somewhat better on the cpap and with the quieter environment but still woke often. The next morning the sleep tech said the titration had been quite successful. When I mentioned that I still woke many times (in my estimation) she mentioned that although the titration had mostly eliminated the apneas and hypopnea events I still had many arousals (don't remember the term she used). She said that any noise on the entire floor, no matter how small would cause me to wake or at least or at least stir and cause my brain waves to spike.



Well, I started on CPAP about a month ago and noticed improvement in the way I felt but was still waking many times throughout the night and not feeling rested. After getting my card reader and the software installed I noticed I was having many snore events. So I decided to bump the pressures from 7 to 8 and the snore index improved dramatically but the AHI and HI both increased while the OAI stayed near the same, so after a few days I raised the pressures to 9 and SI, AHI, HI all improved significantly while the OAI index went from around a .8 to 1.4. It still appeared to be the best compromise (in my opinion).

I've attached some of the graphs below.



Last week I had my first follow-up appointment with the pulmonologist, the only appointment since our initial meeting. When I arrived the pulmonologist I had met the first time was at the hospital so my appointment was with his partner. Well I described my problems with waking often and not feeling like I'm getting the best therapy, as well as my continued problems with stuffy sinuses, etc. I explained that I had raised the pressures slightly and explained my reason being the high snore index. His recommendation is for me to use a APAP for 2 weeks and then they will determine my correct pressures. He also recommended that I meet with an Ear Nose and Throat doctor to further investigate my sinus problems. It wasn't until I had already left the office that I realized that I've never even seen any of the documentation from either of my sleep studies, the doctor didn't present any of the findings or show me any of the data. I'll admit I was dumb for not even asking, and not being prepared with questions or at least print outs of my graphs.



After leaving his offices and thinking about his recommendations, I decided that I didn't think that the APAP would give them much more information that what I've currently collected (of course it would cover a greater range of pressures). I don't think getting my events slightly lower than current will make much of an improvement in my sleep, but I will confess that it is pure speculation on my part. After reading a few articles online about URARs (edit: this should say UARS i.e. upper airway resistance syndrome) the symptoms mirror my own problems. I feel like I never get any stage 3 or 4 sleep but I do get lots of REM sleep, of course this is more speculation on my part based on how I feel and how I think I sleep.



So to wrap this thing up my DME called yesterday to ask when I could come in and pick up the APAP and I told them that I was going to wait to do this until I could investigate other avenues, as I don't see much benefit for the cost of renting another machine and getting the results sent somewhere to be read for the doctor. Today the doctors office called and I talked to one of his assistants (I don't know her actual capacity at the office she may be an RT or ???), she wanted to know why I declined the APAP. I explained my observations and the fact I didn't think my troubles are directly related to titration (at least not what they will be able to determine from an APAP or CPAP). I also told her that I didn't want the extra costs. She told me they could get me the APAP for free, but I didn't think to ask if there will be a charge for collecting the data and reporting, etc. She warned me that although my wife and I are knowledgeable (said in a condescending tone) that we still need a doctor to set correct pressures, etc. She also said that the doctor thinks that my problems could be caused by "over treatment", which I assume means he thinks that raising my pressures from 7 to 9 is causing my waking.



Sorry for the long post but I wanted to give enough detail to explain my current condition. I should also add that since meeting with my doctor I'm trying nasal irrigation daily and found it to help moderately. I'm also going to call the sleep lab to get a copy of my sleep studies.



Now the question what should I try next? Can APAPs compensate for URARs (assuming this may be the problem)? I'm trying to find a tool to tell me how often and when I wake through the night so I can try to see if there is a correlation with breathing events, any ideas?

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, CPAP, DME, AHI, Hypopnea, Prescription, APAP

Last edited by GrumpyInKC on Wed Feb 22, 2006 10:58 am, edited 1 time in total.

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yardbird
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Post by yardbird » Wed Feb 22, 2006 9:03 am

First of all, don't simply chase numbers. I'm not saying that you're doing this, but some people tend to base EVERYTHING on charts and graphs. Use these as tools to GUIDE you. My first impression is that, actually, you HAVE used the tools and seem to have found a better pressure at 9.

I would also not totally discount getting more information from medical professionals. Not many of us here are medical professionals. Information is going to help you. If you can get an autoPAP for free and using it gives you more information, then ...especially since you're just starting out... I'd take a look at that option. Having said that, I will also add that many of the folks on here know more about xPAP treatment than MANY of the medical professionals I've dealt with. This is a great group of folks with widely varied experiences and a really LARGE knowledge pool to dive into.

IF you are having arousals not related to your apnea, then further investigation and treatment of THOSE symptoms may give you a better night's sleep. Are you NORMALLY a very light sleeper? I mean does the littlest noise seem to disturb your sleep at home? I ask because it's possible that you had some anxiety about the sleep study with all the wires and such and that can be a problem. However if you are doing OK on CPAP but still experiencing disturbed sleep then you might be looking at a situation where you have to treat more than one thing. Like it's not JUST apnea, but apnea AND something else.

I'd have a tendancy to do as much investigative work as possible in the beginning. More information will help you make better decisions. Oh... and I didn't see my sleep study until a month ago and I was tested/diagnosed over 5 years ago. I should have asked for it sooner.

This helping?


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Re: Need help with treatment

Post by Guest » Wed Feb 22, 2006 10:00 am

GrumpyInKC wrote:She warned me that although my wife and I are knowledgeable (said in a condescending tone) that we still need a doctor to set correct pressures, etc. She also said that the doctor thinks that my problems could be caused by "over treatment", which I assume means he thinks that raising my pressures from 7 to 9 is causing my waking.
I can just hear that "Doctor" knows best tone.

Your AHI looks stable and you obviously found the sweet spot for your titration. An APAP can't improve on that. There could be other benefits to an APAP such as reducing your pressure for part of the night, but that would depend on how your apneas are clustered. That would also require using an APAP on a full time basis, not just for titration as your physician wanted to do.
GrumpyInKC wrote:Now the question what should I try next? . . . I'm trying to find a tool to tell me how often and when I wake through the night so I can try to see if there is a correlation with breathing events, any ideas?
I monitor my oximeter results for correlation with breathing results. The oximeter provides both desaturation data and heart rate. While my concern has been mostly with desaturation, I also see the spikes in heart rate which occur not only with breathing events but during REM sleep generally, and when I move around while sleeping there are brief spikes in heart rate above the resting rate, which quite often is nearly perfectly flat. I'm sure an oximeter or heart rate monitor would provide you a clue about how often and when your sleep is being disturbed. From that you could likely find what is causing the disturbance. I have no idea what normal would be though, although a little investigation on the internet would probably yield some insights. A little less pricey alternative than an oximeter would be a "patient monitor". I've seen lots of those available on e-bay, some include memory and/or a paper recorder.

Regards,
Bill


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NightHawkeye
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Location: Iowa - The Hawkeye State

Guested Again

Post by NightHawkeye » Wed Feb 22, 2006 10:02 am

The above was me "Guested" again.

Regards,
Bill

GrumpyInKC
Posts: 23
Joined: Thu Jan 19, 2006 3:01 pm

Post by GrumpyInKC » Wed Feb 22, 2006 11:34 am

yardbird wrote:First of all, don't simply chase numbers. I'm not saying that you're doing this, but some people tend to base EVERYTHING on charts and graphs.
I agree, I’ve been deliberately slow to change settings until I’ve collected enough data to support changing. I was at 7 for the first couple of weeks then tried 8 for 3 nights and I’ve been at 9 ever since. That was kind of my point to the Doctor and his assistant, although the pressures could be fine tuned it doesn't appear that they are bad at either setting and I would doubt they are much of the cause of my sleep disturbances.
yardbird wrote:I would also not totally discount getting more information from medical professionals.
I agree, I think I’m just frustrated at the slow rate of progress. I’ve been trying to get help with this for the last 7 months and I feel like I’m just getting started. Truth be told I actually started trying to get help with this 5 or 6 years ago when I was seeing a doctor about CFS, neither he nor I knew about sleep apnea at the time.
yardbird wrote:If you can get an autoPAP for free and using it gives you more information, then ...especially since you're just starting out... I'd take a look at that option.
I’m leaning towards doing this, although I don’t think it will help much it may satisfy the doctor that the pressure is not an issue. I’m also taking the comment of getting this done for free with a big grain of salt my experience with medical professionals and DMEs is that nothing is free.
yardbird wrote:Are you NORMALLY a very light sleeper? I mean does the littlest noise seem to disturb your sleep at home?
Yes and yes. I used to sleep very well until my mid 20’s and it’s gradually gotten worse over the years. When I started down this path I thought it may just have been because the sleep apnea was keeping me from getting into a deep sleep, but that appears not to be the case. Small noises can wake me but often I find my self waking for no reason many times per night. It gets really difficult to determine how many times I’m waking and for how long. I would estimate on a good night I wake less then 10 times and on a bad night probably 3 to 4 times that. It’s really hard for me to tell how many times I actually wake as the night just seems to blend together, hence my desire to find some sort of tool that would record these events.
yardbird wrote:I'd have a tendancy to do as much investigative work as possible in the beginning. More information will help you make better decisions.
That’s my personality as well.
yardbird wrote:This helping?
Yes. Very much appreciated.
NightHawkeye wrote:A little less pricey alternative than an oximeter would be a "patient monitor". I've seen lots of those available on e-bay, some include memory and/or a paper recorder.
Thanks, sounds like what I need.