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Cheyne Stokes isn't always heart related
#41
RE: Cheyne Stokes isn't always heart related
Ok... here is the latest. My AHI has been climbing lately. Out of the last 5 days I have 11.73, 2.93, 4.53, 6.09 and 11.92. Three out of the last seven days have had 6% of the night in CSR.

Thanks for everyone's help on this journey. I have taken the advice of finding a new Dr. by moving my therapy to Fusion Sleep in the Atlanta area. I had an initial consult with Dr. Riney today and she was terrific! She actually STUDIED my data ahead of time and we had a terrific discussion. She also recognized that I need a lab study to determine if I have PLM issues that are causing my issues. She also said they will be looking to see if my CAs are primarily PAP emergent or if I have Complex Apnea and if an ASV machine is needed.

Finally, a Dr. that isn't afraid of an informed patient and welcomes them as part of the team.

(Bonus was she was familiar with the Wellue O2 Ring and OSCAR.)
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#42
RE: Cheyne Stokes isn't always heart related
The real test is if she designs a test that answers those questions, rather than responds to insurance criteria for approving equipment. If so, she is truely one in a million. It's rare and wonderful to find a curious and insightful doctor, but one that has a smart clinic that can carry out a customized sleep study is amazing.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#43
RE: Cheyne Stokes isn't always heart related
Im dealing with CA's and i am looking for new doctor. I see you recommend Dr. Riney. I am in the Atlanta area also! Did she mention them being related to heart issues? I worry about that?
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#44
RE: Cheyne Stokes isn't always heart related
I'd give the doc a call. Sounds promising to you folks in getting a gem of a doc.
Dave

OSCAR
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#45
RE: Cheyne Stokes isn't always heart related
Oh gosh, I am not a graph interpreter.  If you've had all the heart work up tests, then at least it's not your heart!!!  I have not had all that work up.  Usually, my CA's are around 5-9 per night, but one night it was 25!!!  It a seemed to happen right before I woke up, so this really caught my attention. I click on the Event section and it tells you how many of each thing you had.

I did make an appt. with a Dr. Pai, with Gwinnett Pulmonology,  he is also asleep doctor, for a week from Friday.  I want to see what he has to say!  He had really great reviews!
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#46
RE: Cheyne Stokes isn't always heart related
(06-08-2021, 11:12 AM)pen123 Wrote: Im dealing with CA's and i am looking for new doctor. I see you recommend Dr. Riney. I am in the Atlanta area also! Did she mention them being related to heart issues? I worry about that?

There are several causes of CAs, as you may know. She noticed that I had a full heart work up last summer and I was told all was well, so that leaves me open to an ASV machine. The odd thing is my AHI has fallen a good bit and I am now in a 1 to 4 AHI range (I feel like I am finally in a groove on breathing with the unit now). The bad news is that despite this I am EXHAUSTED. I often wake just as tired as when I went to bed. It is really disheartening.

I had my GP do blood tests for fatigue. My MCV and MCH were slightly outside the high end of the range, but not flagged as abnormal. So I have ruled out obvious thyroid and anemia, but I will have to watch to see if they get larger. This information should help Dr. Riney in the search for my fatigue.

My sleep study was supposed to be last Saturday, but they had some water damage so they rescheduled me to their Johns Creek location on June 14th (this Monday). The responsiveness of the staff at Fusion Sleep has been terrific and so refreshing. It is easy to to stay in touch with email.

The Dr. asked me to wear the Wellue ring at the study so we can compare the accuracy of it with their equipment. I look forward to the comparison. Most of all I CRAVE a good nights rest.

The attached charts show that I have movement issues that seem to correspond with lots of pulse changes. They are slight so I think they are twitches because it takes a magnified scale to see them. My wife said one morning she woke 30 minutes before me and she noticed I was twitching a lot. Not enough to wake her, but she noticed them when awake. From what I have read, some movement disturbances don't have to be large. Just twitches can cause someone from getting to deep sleep.


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#47
RE: Cheyne Stokes isn't always heart related
(06-08-2021, 06:44 PM)pen123 Wrote: Oh gosh, I am not a graph interpreter.  If you've had all the heart work up tests, then at least it's not your heart!!!  I have not had all that work up.  Usually, my CA's are around 5-9 per night, but one night it was 25!!!  It a seemed to happen right before I woke up, so this really caught my attention. I click on the Event section and it tells you how many of each thing you had.

I did make an appt. with a Dr. Pai, with Gwinnett Pulmonology,  he is also asleep doctor, for a week from Friday.  I want to see what he has to say!  He had really great reviews!

Here is hoping you find the Dr. very attentive and engaged.
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#48
RE: Cheyne Stokes isn't always heart related
I heard back on my sleep study. Though I only slept 2 hours, they were able to titrate and find that I need an ASV machine. They said as my pressures were raised to appropriate levels that my CAs came out even more. I have a visit with the Dr in a few weeks (unless I can get in earlier to take a cancellation slot) to go over the study and the recommendation. In the mean time, I have my CA 'storms' about 3 days a week with 30-40 events, typically in the last couple of hours of the night.

Can anyone share their story of going from APAP (Airsense 10) to ASV? I heard from my DME that they think I will just get the new machine (keep my hose, etc.) and continue with my payments without having to start over to finish out the 13 weeks of payments. I'll see how my UHC Medicare Advantage coverage works out. Think I am likely to be given a fleet machine instead of new? I'd appreciate any tips on how to source new.

I sure appreciate all the help I've received from this board to get this point. If I had gone into the lab from the get go I'd probably have received an ASV from the beginning due to the severity and the CAs, but my concern over COVID was too much of a deterrent. Having the vaccine gave me the confidence to finally do the study after giving APAP a full 6-months to resolve things.


For my 6-month replenishing, I am think of getting a F&P Vitera. My F20 with memory foam was too big (a large mask) and I have read very positive reviews and feedback on the Vitera if you want to go full face.

My P30i seals well, but my mouth leaks continue to be my problem. I am also don't like how the air frame makes it harder to lay on your side and leaves indents on my face. I am bald so indents are very noticeable and seem to last for hours after waking. (I've reduced strap pressure to the minimum to keep a good seal and still have marks.) Any recommendations on a chin strap and front facing hose nasal pillow that works well?
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#49
RE: Cheyne Stokes isn't always heart related
Going to ASV shouldn't be too bad, and won't be much different than my failed BPAP forced attempt.

I would suggest staying with ResMed, the breath pattern you feel with now will be similar. Tell them you want ResMed, the AirCurve 10 ASV.

Your humidifier and heated hose settings, if used, will be identical. You will want to run it in ASV Auto mode so you get an EPAP range.

To be able to set it up, you'll need
EPAP Min-Max and PS Min-Max. Add EPAP to PS to get the IPAP, which is controlled by the algorithm and not directly input. Backup rate is automatically algorithm controlled as well.

Leaks are needed to be better controlled on ASV. Sometimes the ASV likes to blow hard while you're just about to fall asleep. To combat that, blow back literally through the mask and ASV will back down.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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