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Why no Titration? - Follow up on Wednesday
#31
When you meet with your doctor, you should not only ask to see the numbers, you should ask for a copy of the complete sleep study. Those are your tests, you paid for them, they belong to you. Now cough them up! There is no medical reason for a doctor to deny you a copy of your own test. Sheesh!

That said, the central apneas are not something I could comment on. I have no experience in that ballpark. I think you need to get the auto bi-pap machine (that's what you think they'll prescribe, right?), start using it, use SleepyHead to analyze results, and possibly start tweaking the settings on the machine if indicated. Then see what happens.

There are also techniques available to help you stop sleeping on your back. Google them. Or start a new thread here. Or just put a soccer ball in a backpack and wear that to bed. Go ahead and laugh. I'm not kidding. Sad
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#32
Auto BiPAP is not designed to treat complex or central apnea. The correct machine is an Adaptive Servo Ventilator, and that should have been evaluated during the titration study. Do an internet search for CPAP Titration Protocol. The procedures are standardized, and acceptable results are defined.
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#33
(11-22-2015, 10:16 PM)Tacoma Droner Wrote: When you meet with your doctor, you should not only ask to see the numbers, you should ask for a copy of the complete sleep study. Those are your tests, you paid for them, they belong to you. Now cough them up! There is no medical reason for a doctor to deny you a copy of your own test. Sheesh!
Well said.


Quote:That said, the central apneas are not something I could comment on. I have no experience in that ballpark. I think you need to get the auto bi-pap machine (that's what you think they'll prescribe, right?), start using it, use SleepyHead to analyze results, and possibly start tweaking the settings on the machine if indicated. Then see what happens.

Actually, in patients who are susceptible to centrals, BiPAP or Auto BiPAP usually makes Central Apneas worse, as does using EPR. As does allowing higher pressure (increasing the Max Pressure setting).

DonC - As DB wrote, you need an ASV titration. Sooner the better.

In the meantime I suggest staying away from bi-level and EPR, and taking precautions toward staying off your back, such as wearing a light knapsack containing something bulky but light. This should help reduce the need for high pressures to prevent obstructive events. Avoiding high pressures may help reduce the number of CAs at least a little.

Take care,
--- Vaughn
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#34
Thanks Everyone,
I called everyone this morning as I tried to get some information on numbers and to get a quick appointment so I could find out what really happened and not just be told "you had some CAs and when you were on your back it was bad".
I think that the people in the system don't like being pushed but I am not going to give up. Now I know I can fix this I want it fixed ASAP.
I will do my best to sleep on my side as that does reduce the numbers.
As I have said, thanks for everything. I will update when I have some news.
Any ideas that you have to help me sleep or sort the protocol issue out will be gratefully received.
Thanks again,
Don
-------------------------------------------------------------------

Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.
Thomas A. Edison



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#35
(11-22-2015, 10:16 PM)Tacoma Droner Wrote: When you meet with your doctor, you should not only ask to see the numbers, you should ask for a copy of the complete sleep study. Those are your tests, you paid for them, they belong to you. Now cough them up! There is no medical reason for a doctor to deny you a copy of your own test. Sheesh!

That said, the central apneas are not something I could comment on. I have no experience in that ballpark. I think you need to get the auto bi-pap machine (that's what you think they'll prescribe, right?), start using it, use SleepyHead to analyze results, and possibly start tweaking the settings on the machine if indicated. Then see what happens.

There are also techniques available to help you stop sleeping on your back. Google them. Or start a new thread here. Or just put a soccer ball in a backpack and wear that to bed. Go ahead and laugh. I'm not kidding. Sad

A sock with a tennis ball sewn to the back of a tee shirt is much easier to use than a backpack. Vis-a-vis the Central Apnea, I have a propensity to Central as well; my remedy is cup of regular coffee before bed if caffeine doesn't keep you up. Caffeine is a xanthine, which is what one of the drugs used for Central Apnea is. I just decided to cut out the pharma.
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#36
(11-19-2015, 10:35 AM)DonC Wrote: Hi,

Thanks for your input everybody.

I spent a pretty good hour with the doctor yesterday. I think I have a good one so we will move forward from here. He didn't look at the pile of info I had with me as thoroughly as I expected but seemed to rely on the report he got from the machine through the Supplier. I couldn't see the format so couldn't tell if it is easier to read than Sleepyhead but, anyway, the info was the same.

The doctor immediately said that I needed Titration and implied that I might need a BiPAP machine. I was surprised when he said that he thought the machine I have (ResMed AirSense 10 Autoset) would provide BiPAP service. I didn't think that it would. He said that if I needed anything different I may need a new machine which I agreed with.

He gave me a copy of my Sleep Study and whilst there are a ton of numbers I picked out the following:
Slept for 253 minutes
In bed for 442.5 minutes
Sleep Efficiency 57.2% (Norm 90%)
Time in Deep Sleep - 9.3% (Norm 20-25%)
Time in REM - 10.3% (Norm 20-25%)
Total Apneas - 72.8 per hour (22% H / 35% OA / 43% CA) - pretty much the same as now.
REM AHI 55.4
NREM AHI 74.8
Oxygen Low 75%
Oxygen Avg 90%
Time Oxygen below 88% - 36.4%

It also talked about arousals but I am not sure I want to get into thatHuh But, if there is anything else I should be taking note of let me know.

Overall I am pretty happy and hope that the Titration happens quickly (I am going to Florida soon to talk at the American Society of Hematologists convention about the Clinical Trial I am on for treating Multiple Myeloma - 5 years and going strong) and would like to have it sorted by then.

Please give your input in numbers, machines, doctors and arousals.Unsure

Thanks in advance,
Don

You mention treatment for Myeloma; it's possible that a drug you are using is affecting your respiration. I cannot take any type of opioid because they suppress respiration (I have a tendency toward Central Apnea - in an earlier posting, I stated that my remedy for Central is a cup of coffee before bed - if you can tolerate the caffeine, try it; it works). Check side effects of any meds you take.
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#37
Hi shaloum, welcome to Apnea Board!

Take care,
--- Vaughn
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#38
It has been a while since I updated every one and quite a lot has happened in the interim, so here we go.
I saw the doctor and got the results of my BPAP / BiLevel Titration and as we all thought, it didn't work. At a reasonably low level my AHI was 12 (about the same as I was achieving at home then) but as they tried different pressures it went up; and at one stage we got up to 80 AHI. Obviously I was very disappointed and after a long discussion the doctor said that he would talk to his colleagues and would consider another Titration, this time for ASV.
It was quite funny that the doctor started out trying to tell me that the 12 AHI I was achieving at home was good and that I should just accept it. But by the end of the conversation he thought I was a doctor (Thanks for telling me what to say everyone) and eventually talked about ASV.
Then came the telephone call. He had consulted with the other doctors and they had decided to set me up with a CPAP Titration. I couldn't believe it but he wouldn't be swayed.
So, I went away on vacation, there was nothing I could do at that moment. When I returned, 10 days ago, I looked at Sleepyhead and it was amazing. For the first four days that I was away my number was very low and the CAs had almost vanished. Then the CAs started coming back and I am almost back to normal. My AHI is a little lower as I am running at an average of 9 with 6.8 being CAs.
I am still waiting to go on the CPAP Titration that I was never given at the start of all this but if any of you can explain why they are taking this route I will be eternally grateful. Also an explanation as to why the CAs went away at the beginning of my vacation would be useful. They have come back gradually, very odd.
Sorry that this update has been so long coming but I have been pretty close to giving up. I will not, but it has been very difficult as I am still tired most of the day.
It is good to be back and just reading other posts has made me feel more like carrying on.
Thanks again
Don
-------------------------------------------------------------------

Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.
Thomas A. Edison



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#39
First, we told ya so...and the last study SHOULD have included an ASV titration. Why was it not done? What kind of sleep clinic is this?

Second, your doctor remains clueless. Big surprise, but why can't he go with his gut and do the right thing?

Don, that last study has everything you need to obtain an ASV prescription from a COMPETENT doctor. Get the full study. Go to a competent doctor. You can inform your doctor of your disappointment that he apparently knows the right thing to do, but lacks the courage or conviction to do it, and it will be necessary for you to find a professional that knows what to do with the information that was presented by this last study. It is troubling and puzzling why this doctor put himself in a position where his professional judgement was overturned by others, not involved in your care. You can use a modern ASV without a titration, using the auto settings and machine data. Who pays for all these studies?
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#40
(12-23-2015, 03:20 PM)DonC Wrote: Then came the telephone call. He had consulted with the other doctors and they had decided to set me up with a CPAP Titration. I couldn't believe it but he wouldn't be swayed.

Don - really, it is time to fire your doctor. The man is not competent. I recommend cancelling the CPAP titration and finding a new doctor. A CPAP titration will be worse than worthless, since it will waste time and money and stands in the way of the ASV Titration you actually need.


Quote:So, I went away on vacation, there was nothing I could do at that moment. When I returned, 10 days ago, I looked at Sleepyhead and it was amazing. For the first four days that I was away my number was very low and the CAs had almost vanished. Then the CAs started coming back and I am almost back to normal. My AHI is a little lower as I am running at an average of 9 with 6.8 being CAs.
I am still waiting to go on the CPAP Titration that I was never given at the start of all this but if any of you can explain why they are taking this route I will be eternally grateful. Also an explanation as to why the CAs went away at the beginning of my vacation would be useful. They have come back gradually, very odd.

Was your vacation at a lower elevation above sea level than your home? Or was there a change in diet or meds? Or a change in sleep position?

It is very common that the number of CAs will be higher when sleeping at a higher elevation. If your vacation was closer to sea level that could be the reason.

Also, if you were sleeping on your back less this could have avoided the need for high pressures to treat obstructive apneas, and lower pressure commonly reduces the number of CA we get.



Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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