What do you do when Cpap doesn't work

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What do you do when Cpap doesn't work

Postby mjn » Fri Jan 25, 2008 2:15 am

Sorry for the long post.

On my Cpap with no leaks, full face mask, nasal mask, or nasal mask with chinstrap not matter what I wake up every morning like I haven't slept a wink. I get up around 8:00am roam around totally exhausted, then nap from 11 to 3, again waking up totally exhausted. I feel better in the evening(but still exhausted, but I know when I go to bed I will wake up exhausted.

I was diagnosed in april with apnea and have been on Cpap since May. It has never really helped, maybe a little. I went in for a titration last month and my pressure was adjusted from 13 to 12. But to no avail. I have an old Cpap machine to go along with my Resmed Elite S8. I have experimented with the old cpap as I am able to adjust the pressure. I have tried higher and lower pressures(just on occasion maybe 4 nights out of 120) and a very low ir very high setting doesn't seem to matter.

I am 38 and was about 40lbs overweight when the headaches and exhaustion started, I have since gained weight(mostly before I got the CPap) and am now 90lbs over weight.

My latest titration that set me at 12 said....

EEG
Adequate, sleep study time of 399 minutes was recorded. Total sleep time was 327.5 minutes for a sleep efficiency (TST/TIB) of 82.1% which is average. Sleep onset from lights out was 8 minutes which is normal for his age. REM latency from onset was 291.5, which is increased. Sleep architecture was was mildly fragmented. Delta(slow wave) sleep occupied 37.5 minutes of the study which is decreased for a patient of his age. The sleep study was adequate for interpretation and followed a standard PSG montage. The patient had fragmented sleep because of arousals associated with respiratory events.

Respiration..
The overall Apnea-Hypopnea index (AHI)/Respitory Disturbance Index(RDI) for the entire night was 1.3, which is within normal limits. When taken into consideration REM sleep alone, the AHI was 1.9 which is normal. Supine sleep was associated with an RDI of 2.9, which is increased. Patient had oxygen desaturation as low as 93%. No snoring was noted, and were not associated with arousals.

ECG..
Bradytachyarrythmias associated with respiratory events were not present

EMG..
PLM index was 10.8 which is mildly increased. No seizures, parasomnias, or any other behavioral abnormalities of sleep were noted by the technician.


I had a suggestions page that included.

CPAP pressure of 12cms with full face mask.

If CPAP cannot be tolerated look into surgery or dental device.

Loose weight.

Don't sleep supine.

Follow up with Doctor.

---------------------------------------

Now I had my wisdom teeth out over the holidays and was put under a general anesthesia. I had vivid dreams while I was out and felt rested for the next few days? No headaches, no tiredness.


What the heck do I do? The CPAP just isn't making me feel better. Where can I look up dental devices?

I don't even know what questions to ask. But I know i am utterly exhausted at all times, and I need to start a job next week. I am so sick of being tired.

Also I have had alot of anxiety since the headaches and exhaustion started(never had it before), and the doctor has me on Klonopin and Celexa. They seem to be helping with the anxiety, but haven't helped with the exhaustion.
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Re: What do you do when Cpap doesn't work

Postby Daniel » Fri Jan 25, 2008 5:54 am

EEG
Adequate, sleep study time of 399 minutes was recorded. Total sleep time was 327.5 minutes for a sleep efficiency (TST/TIB) of 82.1% which is average. Sleep onset from lights out was 8 minutes which is normal for his age. REM latency from onset was 291.5, which is increased. Sleep architecture was was mildly fragmented. Delta(slow wave) sleep occupied 37.5 minutes of the study which is decreased for a patient of his age. The sleep study was adequate for interpretation and followed a standard PSG montage. The patient had fragmented sleep because of arousals associated with respiratory events.


Your figures indicate that you got about 50% of the Delta Wave requirement (for normal). This might explain your continued tiredness. Delta Wave is very deep sleep (deepest)..........restful and restorative.

It is also possible that because of severe respiratory arousals you were bouncing from Stage 2 to REM.

I haven't bothered with the other areas of your post. Do you have any more detail on your sleep architecture ?

Daniel.
The untreated Sleep Apnoea sufferer died quietly in his sleep..
Unlike his three passengers who died screaming !


The first 40 years of childhood are by far the hardest
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Postby Linda » Fri Jan 25, 2008 8:44 am

Hi mjn,

Have you had followup appointments with a doctor? And if so, was it a general practioner or someone who specializes in sleep apnea?
Also, has your doctor tested you for the usual things, like thyroid, diabetes, etc? Your report is from the titration, so I'm not sure if the oxygen levels of as low as 93% was with or without cpap, but I'm guessing with cpap. While that's not particularly low, it is lower than normal. It would be good to meet with someone who specializes in sleep medicine, to rule out the apnea and cpap issues. But I do hope you are having checkups with your doctor and whatever testing is necessary to rule out any other physical causes of your exhaustion.


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Postby Guest » Fri Jan 25, 2008 11:46 am

Yes, I just recently met with my general Doctor and had a full checkup. With the exception of slightly elevated cholesterol, everything else checks out Normal.

I have been trying to get an appointment sleep specialist. March 3rd is the earlist I can get. I am in the Chicago area and were researched and only found 4 or 5 sleep specialists, mostly down town. I am in the far south suburburbs.

Daniel,

Thats word for word the titration report. So I don't know anything more.
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Postby mjn » Fri Jan 25, 2008 11:49 am

Oops forgot to log in.

The 93% was on the cpap.
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Postby Guest » Fri Jan 25, 2008 2:49 pm

mjn wrote: a sleep efficiency (TST/TIB) of 82.1% which is average.

I think that sleep efficiency of less than 85% is abnormal.

mjn wrote:REM latency from onset was 291.5, which is increased.

Normal REM latency is 90 - 120 minutes.

mjn wrote:Sleep architecture was was mildly fragmented. Delta(slow wave) sleep occupied 37.5 minutes of the study which is decreased for a patient of his age.

As Daniel suggested, it would be good to see the info/data about sleep architecture, percentages of sleep stages.

mjn wrote:The patient had fragmented sleep because of arousals associated with respiratory events.

There should be data about the total numbers and index of arousals, as well as an analysis of types of arousals. The comment above does not fit in well at this point with the low AHI and RDI numbers.

** Some of the reasons that the data is not within normal range could be due to 'lab effect'. But it would be a good idea to take a look at the data from the full report. **

mjn wrote:If CPAP cannot be tolerated look into surgery or dental device.

They don’t note that often times people can see improvements in their ability to use PAP if they go through a trouble-shooting process to make sure that everything is working correctly. In addition, at home monitoring of the effectiveness of treatment by using a fully data-capable device can often find issues that lead to needed adjustments in the treatment setup. Trying one of the new types of PAPs that is designed to help patients who are intolerant might be an good option to try before considering surgery or dental.

[quote=”guest”]Thats word for word the titration report. So I don't know anything more.[/quote]
There seems to be a lot of data missing, and it may be that you are looking at a summary report. There is usually a summary (1-2 pages) as well as a full report (5-7 pages with graphs and data). Patients have the right to get copies of both reports.

Consider requesting the copies of the full sleep study reports (from all your sleep studies) before meeting with the new doctor. These can be faxed/emailed to you. You can post the results in the Sleep Studies forum. Forum members can help you to understand the terminology, perhaps help with a list of questions, so that you can utilize the appt time with the new doctor most effectively.
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Follow-up care

Postby Guest » Fri Jan 25, 2008 4:13 pm

mjn wrote:I was diagnosed in april with apnea and have been on Cpap since May. It has never really helped, maybe a little.


How much follow-up has there been from your doc? I am not familiar with your CPAP - is it data-capable? If so, has your sleep doc down-loaded and reviewed the reports to determine the effectiveness of the at-home treatment? What has your AHI data looked like over those past months?
Guest
 

Postby Guest » Sat Jan 26, 2008 1:46 pm

It is Data capable(resmed elite s8), but no one has ever asked to see the data. My Doctor is not sleep doctor, just a general doctor.

I won't be seeing a Sleep doctor for a long time. There seems to be only 3 or 4 in the Chicago area and all but one gave me appointments in May or June. I got one to see me in March. So I made the appointment.

I am starting a new job Monday and I don't know what I am going to do, I can barely make it throught the day with 2 naps.
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What do you do when Cpap doesn't work

Postby Guest MJ » Sat Jan 26, 2008 2:58 pm

Hi mjn,

Anonymous wrote:It is Data capable(resmed elite s8), but no one has ever asked to see the data. My Doctor is not sleep doctor, just a general doctor.[...] I got one {sleep doctor} to see me in March. So I made the appointment.

It’s very important to get good quality follow-up monitoring and review of the at-home treatment. Please make sure to keep that appt. Since you have a data-capable device, you can take it or the smartcard to the appt so that the doc can download and review the data. You might want to call to ask about this ahead of time.

** Also, ask if you can be put on a 'cancellation list' to be notified of any sooner openings for appts. **

mjn wrote: I am starting a new job Monday and I don't know what I am going to do, I can barely make it throught the day with 2 naps.

I can understand your situation. The following are general suggestions to help with Obstructive apnea, that’s the most common form.

mjn wrote:Don't sleep supine.

This comment indicates that the condition is worse when you sleep on your back.

Can you sleep while on your side? This is sometimes difficult due to the mask, but would probably help your condition. You could try to use pillows to keep you on your side, and there is also a special pillow called the Sona Pillow - this is a special pillow for people with snoring/mild apnea. To prevent one from rolling over, some people suggest sewing a tennis ball into the back of your pajamas.

If you do sleep on your back, try elevating the upper body. Again, there are special wedge-shaped pillows that might help. Sleeping in a recliner might help – this is meant to be only a temporary situation until you can get the treatment working better.

mjn wrote:My latest titration that set me at 12 said....

What is your EPR setting? This is a personal preference, some people love it and some people hate it. Adjustments to EPR might help with problems of mouth-breathing.

guest wrote: It is Data capable(resmed elite s8),

I believe that patients can see their daily AHI and leak data on the view screen if access to the patient-menu is enabled. Ask about this as this data would help figure out whether or not the at-home treatment is fully effective in lowering your AHI.

Another tip for all is to avoid drinking alcohol, for example with dinner, at least 4 hours before bedtime. Alcohol can disrupt breathing as well as the overall quality of sleep.

Please keep updating about how you are doing.

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Postby mjn » Sun Jan 27, 2008 2:51 pm

I almost always sleep on my side, its in the titration where I was on my back most of the time because of all the wires and stuff. But I will check out the Sona Pillow, because i do occasionally find myself on my back due to the mask.

What is EPR? is that the exhale pressure.

After general ansethesia I felt rested for a few days, I wonder if some sort of sleeping pill would produce the same results until I can see a sleep specialist.

I am just totally lost.
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Postby Guest MJ » Sun Jan 27, 2008 8:07 pm

Hi mjn,

Just wanted to comment that my suggestions are based only on my general experience, and that I am assuming that you were diagnosed with Obstructive, and not one of the other types of sleep apnea.

mjn wrote:I almost always sleep on my side, its in the titration where I was on my back most of the time because of all the wires and stuff. But I will check out the Sona Pillow, because i do occasionally find myself on my back due to the mask.

Let us know how it goes.

mjn wrote:What is EPR? is that the exhale pressure.

EPR (expiratory pressure relief) drops pressure on exhalation so breathing feels more “natural.”
EPR is a ‘comfort’ feature. EXP can be set to off, or at –1, or –2, or –3, from your inhale setting. Again, it is a personal preference - some people love it and some hate it. It might help with the mouth-breathing that you mentioned in previous posts (note that you still need to use full-face mask). It is my understanding that patients are usually allowed to change the EPR settings on their own.

I don’t know how knowledgeable you are about the device you are using. I cannot go further with you on this subject other than to say that the ‘access’ to the EPR feature may need to be unlocked by your DME.

If you do talk with the doc/DME, I would suggest that you ask them if it's possible for you to view your daily AHI and leak data via the view screen. It would be helpful to know if there are any changes in your AHI after you try something.

mjn wrote:After general ansethesia I felt rested for a few days, I wonder if some sort of sleeping pill would produce the same results until I can see a sleep specialist.

I really don't know. Be careful if you are taking other meds.

Oxygen levels
I read a few of your previous posts. Is it correct to say that your oxygen levels were not normal at a pressure of 13cm? And then they were more normal (~ 93%) at the most recent study which determined a pressure of 12cm? What did the docs say about that? I am wondering if it would be worthwhile to do an at-home oxymetry test to check it?

Regards,
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Postby mjn » Sun Jan 27, 2008 8:42 pm

My EPR was set to 3 and dropped it down to 1. I took a nap. I did notice a slight difference, I just woke up and can't tell if it helped yet. Unlike most people I usually feel good for 1/2 to an hour afer wakingup before the exhaustion sets in.

The only meds I am taking now is Klonopin when I feel enxiety, but I don't take it all the time, only when needed. I was on topamax for a while but stopped that. It was a guest by Doctor that the headaches/tiredness may be migraine related, it didn't help.

I have an insomnia herb pill my girlfriend used to use with Gaba, Kava root, and skullcap. I haven't tried it but its been crossing my mind.

I believe Obststuctive apnea is my diagnosis.

What is involved in an oxymetry test. I have a close relative that works at a medical supply store and I can usually get or borrow anything that doesn't require a prescription.
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Postby Guest MJ » Sun Jan 27, 2008 9:39 pm

mjn wrote:My EPR was set to 3 and dropped it down to 1. I took a nap. I did notice a slight difference, I just woke up and can't tell if it helped yet. Unlike most people I usually feel good for 1/2 to an hour afer wakingup before the exhaustion sets in.

Well, that was quick. It does feel different, doesn't it? The preference seems to be based one trying to match one's own 'natural' breathing cycle.

mjn wrote:What is involved in an oxymetry test. I have a close relative that works at a medical supply store and I can usually get or borrow anything that doesn't require a prescription.

Numerous people have posted about having an overnight oxymetry, for a current example see the thread: http://www.apneasupport.org/viewtopic.php?p=93771#93771

I know that there are several forum members who are knowledgeable about this subject. So I would suggest that you will get better feedback if you post the question as a new topic.

Regards,
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Postby mjn » Tue Feb 05, 2008 8:57 pm

Well I changed the EPR and I really have been feeling much better. I also stopped taking the anxiety drugs in the evenings after reading they can cause sleep to be of low quality. I also started a very busy job. Not sure which thing is making me feel better or a combo. But I really think its the EPR setting. I have been feeling 80% the last 10 days and only sleeping 6-7 hours like I used too(instead of 10-12 with 2 naps and still not being able to keep my eyes open).

I had these problems before I started taking anxiety drugs(apnea caused the anxiety) so I really believe its the EPR setting. I am surprised it made such a difference. But I am waking up like a normal person. Tired but functional.
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Postby mjn » Wed Feb 27, 2008 8:30 pm

Its now a month later and I have no bad days. A few days where I was pretty tired but no real bad days and most days have been very good.

If you are having trouble with tiredness and headaches even after using your cpap, try a different ERP setting. I went from 3 to 1 on my ResMed Elite 8 and I noticed right away how my natural breathing wasn't hitting a wall of resistance.

I am totally off the anxiety drugs as well. But I don't think I ever really needed those, they just helped me feel a little better when really tired.
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