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Cindy1952 - (Therapy Thread) - Cindy1952 - 02-23-2024
[attachment=60062]On October 31,2023 I called my Doctor for sleeping pills, I was having insomnia. She asked me a few questions and referred me for a sleep test.
I performed the at home sleep test on 12/12/23. I was very surprised when I read the report on MyChart...It said I had extremely severe obstructive sleep apnea with an index of 51.9...Nadir oxygen saturation was 66%. Meets criteria for CPAP. I was referrred to a Pulmonologist and had a video visit on 1/3/24. He ordered a CPAP machine and I picked it up on 1/9/24...ResMed Airsense 10 Autoset with pressure set at Min. 8.0 Max.16....I started using it and on 1/24/24 I received a call that they were changing the pressure to Min.10 Max 20 since my AHI were still at 13.67. He also ordered an Overnight Polysomnogram PAP Titration study to be performed at the Sleep Lab overnight. On 2/6/24 I had the sleep study performed. The results were patient was started on CPAP but started to experiencing a number of OSA as well as Mixed and Central. Based on this, she was transitioned to BiPAP. The patient kept having multiple apneic events including central apneas on different levels of BiPAP.She was also not able to tolerate the higher pressures with fragmented sleep. Total number of CSA with attempted titration were more than 50% of all the apneas. Based on the emergence of complex/central apneas the patient is a candidate for BiPAP auto SV Titration if recent echo has demonstrated a EF <45%. If this is not a possibility, the best pressure for her appears to be a CPAP of 10 which resulted in an Index of 11.7 which although suboptimal is the best pressure that was achieved. I had an ECHO performed on 2/13/24 and my EF <45%, thus they changed my APAP to a CPAP at a constant pressure of 10. At that level my AHI's are at 20.84....I saw my Pulmonologist on 2/21/24 and he said this was not good....and changed me back to APAP at Min 8 MAX 20....needless to say this is not working my AHI's are still at 14.00...I do not have another appointment with him until April 6,2024 and he said if this does not work I will be referred to a dentist for treatment, if that does not work he would suggest surgery INSPIRE, if that does not work a Tracheotomy.
Thus my frustration....am I expecting too much too soon....I feel like the majority of people respond to CPAP treatment, but if you are one of the ones that do not...the treatment is all over the place and they will just refer you to the next line of treatment, and not really getting to the root cause. I can attach my reports, but I only have the last five days since I did not buy a card until then. Thanks for anything you can advise. I may need help in attaching the reports.
RE: Frustrated CPAP User..... - Sleeprider - 02-23-2024
Cindy, we see this pattern all the time, and usually get it corrected fairly quickly. In the chart you posted, we can see very heavy clusters of obstructive apnea, RERA and hypopnea accompanied with very high flow limits. This is characteristic of what we call positional apnea. It is caused by poor cervical alignment of the head and neck resulting in obstruction of the airway. We may sometimes refer to it as chin-tucking, but it doesn't matter what we call it. Read our wiki articles on positional apnea and the soft cervical collar. Evaluate your sleeping position, and eliminate tall or firm pillows, or multiple pillows, any inclined sleeping position, and be aware of sleeping on your side in a fetal position which can also be a problem. You may need a soft cervical collar to hold your head and neck in alignment to remedy this. INSPIRE will not work for you. It is intended for mild to moderate apnea caused by an obstruction from the tongue falling back, and that is unlikely your issue.
Your current settings are for fixed pressure at 10 with EPR 3. Consider putting the machine in Autoset Standard mode with minimum pressure 10, maximum pressure 14 and EPR full-time at setting 3. This problem is very common and following our guidance on correcting positional apnea has been highly successful, inexpensive and relatively unobtrusive.
Positional Apnea wiki https://www.apneaboard.com/wiki/index.php?title=Optimizing_therapy#Positional_Apnea
Soft Cervical Collar wiki https://www.apneaboard.com/wiki/index.php?title=Soft_Cervical_Collar
RE: Frustrated CPAP User..... - Cindy1952 - 02-23-2024
Thank you.. for quick response…I have been reading your previous responses to other posts and compared my reports to theirs. I kinda thought it was positional apnea, and when I met with my Dr. yesterday he really had not looked at the report printouts….he went totally by the number of AHI’s. This morning I got a new referral to the Indiana Sleep Center and on Tuesday I have an appointment with a Somnologist. I am interested in what he has to say and hope he has an explanation similar to yours. Do you have any idea why this is missed….or why they do not take this in to account….in the few weeks of my diagnosis, through research I figured that could be my problem….it seems like so much time is wasted and anxiety put on the patient, when there is an easy explanation, it THEY took the time to really go over all your data.
Thanks again….
RE: Frustrated CPAP User..... - Sleeprider - 02-23-2024
Most of the medical community is unaware of the impacts of poor cervical alignment, or don't accept that simple, low-cost solutions can resolve serious apnea. There is a lot more money in selling procedures, devices and surgery. When we first discovered the association of clustered obstructive events with cervical alignment, there was not a single other hit on the internet if you searched for "positional apnea". Now it is everywhere, and hopefully your Somnologist is aware of it. Trust me, if they are aware or actually treat it, they didn't learn about it in school. Even when they are aware of it, they associate it with sleeping on the back, and/or the tongue falling back and blocking the airway. We have seen this pattern in every sleep position including side and prone, and we know the obstruction may include structures other than the tongue, including pressure along the throat under the chin from chin-tucking. The INSPIRE therapy is based on correcting positional apnea with shock therapy by stimulating the hypoglossal nerve to cause contractions in the back of the tongue. Great idea, but there are non-invasive ways of doing a better job for less than $30,000. Everyone seems to have their own theory and way to make a buck, but we are suggesting you look for the easiest, least-invasive solution, including changing a pillow, sleep position, or try a soft cervical collar.
I encourage you to try some things out described in our wiki articles before your appointment. If you wait for a doctor's stamp of approval, you may be waiting a long time or diverted to some much more expensive and disruptive solutions.
RE: Frustrated CPAP User..... - Nightynite - 02-23-2024
I went to a Pulmonologist in a last ditch effort to get a prescription for a Vauto, the first 3 minutes of our conversation he ask me if my DME set my pressure correctly to 4-20. My jaw dropped and I told him , yep , but before the night was over , I changed it. This guy was shocked! He tried to tell me this could be the problem. I immediately got up, put my jacket on and told him I don’t think this is going to work, and left.
My success has come from this board and the experience of the users and moderators.
Sleeprider has nailed it like usual for you and many of us. He will get you where you need to be.
RE: Frustrated CPAP User..... - Cindy1952 - 02-23-2024
I just ordered a neck collar for my apnea, and should receive it tomorrow. I will have time to use it and see my results in OSCAR. I plan on taking all these reports to this Board Certified Sleep Specialist, educated at Loyola University. It will be interesting to see what he has to say, especially if it solves the problem. My appointment is on Tuesday….I will let you know how it goes. He is also the Director of the Indiana Sleep Center, there was a cancellation that is why I got such a quick appointment, it usually takes 2 months.
Positional apnea - Cindy1952 - 02-24-2024
Has anyone figured out they may have positional apnea and gone to their Doctor with this information.
Were you believed, or discounted?l
RE: Positional apnea - Jay51 - 02-24-2024
My ENT actually mentioned wearing a soft cervical collar 1st (before I even came here to ApneaBoard). He specializes in sleep apnea treatment also. My Pulmonologist also specializes in sleep apnea treatment as well. I give credit to my PCP for finding both an ENT and Pulmonologist with this specialization. Also, thanks to PCP for the humility of admitting she doesn't know everything about sleep apnea treatment and was willing to refer me out for more treatment (also relying heavily on the knowledge of my DME RT and local RT from the local hospital here). From all my experience both working with Dr.'s and Sleep Specialists, it is relatively rare though. But a few do I have found. The Sleep Dr. I had from a home sleep study didn't mention it though.
One key is education. If you can present enough relative data conclusively proving your point to a Physician, your odds increase dramatically. But sometimes the burden of proof rests with you.
RE: Positional apnea - Cindy1952 - 02-24-2024
I plan on using my neck collar tonight and see what happens. Today my AHI’s were 20. Seeing the new sleep Dr on Tuesday interested to see what he says.
Still frustrated - Cindy1952 - 02-25-2024
I used a soft collar last night and the OSA improved but not the Hypopneas....any further advice. The graphs are Friday (before collar) and Saturday (after collar)
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