10-03-2017, 01:04 AM
(This post was last modified: 10-03-2017, 01:11 AM by sw33ttsunade.)
Doctor wont raise settings higher... what now?
I am having a dilemna with my doctor and i do not want to follow his precise rx because i had to do a self-titration and the settings he wants me on make my symptoms wotse than when i had no APAP. I am literally scared I will not wake up if I put them so low. on his settings I am already having migraines and aching limbs waking up in the middle of the night with hortible AHI (it was below 1 on my titrated settings of 8.5 min 11 max and i slept all night, he put it at 8 min and 12 max and my AHI is 5.7 and i wake up several times a night in worse and worse condition).i am only 6 months in to "renting" the machine for a year before i can apparently buy it and i am worried he will prevent me from conitinuing it on my insurance because i dont want to diefrom this without the machine. what do you think i should do?
10-03-2017, 02:25 AM
(This post was last modified: 10-03-2017, 02:27 AM by yrnkrn.)
RE: Doctor wont raise settings higher... what now?
Your settings are 8.5 min 11 max and the doctor settings are 8 min and 12 max, right?
Small difference between the ranges unlikely to cause big difference in your sleep quality, especially the doctor settings are allowing the cpap to go higher. We all have good and bad nights regardless cpap pressure range. How many nights have you experienced each setting?
RE: Doctor wont raise settings higher... what now?
Which Dreamstation? Auto i am assuming from having a range. It's a fairly tight range. You might want to open up the top end some if you are consistently hitting the 12 setting. Look at Sleepyhead data and see where your 90% number is and see how often you are hitting 12. If your 90% number is edging to 12 and you see you are hitting that pressure more than infrequently, I would consider opening the range up to 14-15 and see how things roll. Your machine won't go any higher than you need it to. Do you feel like you are getting air at the low end of 8? I have to run my minimum at 8 (no ramp) to not feel suffocated.
OMMOHY
10-03-2017, 07:39 AM
(This post was last modified: 10-03-2017, 08:13 AM by Walla Walla.
Edit Reason: deleted word
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RE: Doctor wont raise settings higher... what now?
It's possible starting at 8cm instead of 8.5 is allowing more events to happen before the Dreamstation responds. The best way to know for sure is to track your results for at least a week on 8cm. After a week than try 8.5cm for a week. That should provide you with the data you need. Best way to track your data is using sleepyhead. You can also post it here for advice if needed. I don't think think your Doctor will argue if you can provide copies of your results.
RE: Doctor wont raise settings higher... what now?
The dreamstation auto is notoriously slow to respond to events, so a higher AHI with only 0.5 difference in minimum pressure is fully understandable. I can even tell you that most of those events are hypopnea, even though you didn't say so.
Why not transfer your care to your primary physician? You don't need a sleep specialist to manage your care, write prescriptions, or determine you are compliant and benefiting from the therapy. In your position, I would consider managing my own care and disconnecting the modem to prevent any tampering or access to the machine. If you insurnace co-pay and deductible is high, you might consider simply buying your own machine. The Dreamstation DSX500T11 with heated humidifier and tube is $330 on Amazon, and the Resmed Airsense 10 Autoset about $440.
You have choices. Consider asking your primary to manage your sleep apnea and CPAP. All you needed the sleep doctor for was the diagnosis. Let your doctor know that you have a fundamental disagreement about your care with the specialist. It is your right to manage your care and refuse any recommendation or procedure, including CPAP pressure settings. Be sure to get copies of your sleep tests, recommendations and prescriptions for your personal records.
RE: Doctor wont raise settings higher... what now?
Change the settings yourself. Contact SuperSleeper with the make and model number and you will receive the clinical manual that explains how to do this. I have been adjusting my own settings for over five years. It has been a trial and error effort, but I think I finally have my own optimal settings.
RE: Doctor wont raise settings higher... what now?
I suggest that you post your SleepyHead daily charts. They will let us see what is going on and thus provide you with more/better information to decide how you want to proceed.
Fred
RE: Doctor wont raise settings higher... what now?
Thank you everyone for your responses! I have been keeping a journal and following the Phillips titration manual, and i have already used every minimum from 5 to 13 over the past 6 months. Basically, at every new min setting, i react very well for the first few nights but then all the apneas come back. I had noticed that the OA were eliminated at 8.5, so i decided to focus on using that as my min and adjust my max and AFlex so that the CA and H didnt get too high. I ALWAYS have them, but i had my lowest number at a max of 11. i then tried adjusting the flex settings and settled on 3 as the best for not increasing the CA and H. I did this over several months but my doctor insists i have to do it again. I am actually now back to being dizzy and tired all day, migraines in the morning, but when i use my settings i dont wake up at night, dont have to go to yhe bathroom at night, i feel like im getting enough air, and i dont have night terrors where i wake up my whole house screaming. that was happening on anything less than 8.5 min, even just 8.
RE: Doctor wont raise settings higher... what now?
It sounds like your sleep doctor is planning on writing a research paper, and you are his main subject!
Unless he is providing the machine at his expense... you don't really need him once you have your prescription. The insurance people don't care about your pressures as long as you use the machine. As mentioned by others, your GP can handle other prescription needs. SleepHead keeps records all the way back, as long as you have used it regularly, and has enough data to convince anyone willing to look at it.
Use the setting that work best for you!
RE: Doctor wont raise settings higher... what now?
(10-03-2017, 12:58 PM)sw33ttsunade Wrote: Thank you everyone for your responses! I have been keeping a journal and following the Phillips titration manual, and i have already used every minimum from 5 to 13 over the past 6 months. Basically, at every new min setting, i react very well for the first few nights but then all the apneas come back. I had noticed that the OA were eliminated at 8.5, so i decided to focus on using that as my min and adjust my max and AFlex so that the CA and H didnt get too high. I ALWAYS have them, but i had my lowest number at a max of 11. i then tried adjusting the flex settings and settled on 3 as the best for not increasing the CA and H. I did this over several months but my doctor insists i have to do it again. I am actually now back to being dizzy and tired all day, migraines in the morning, but when i use my settings i dont wake up at night, dont have to go to yhe bathroom at night, i feel like im getting enough air, and i dont have night terrors where i wake up my whole house screaming. that was happening on anything less than 8.5 min, even just 8. We, collectively, are very, very good at analyzing what is going on. Post your results, your daily charts. You will be no worse off than you are now, and likely will know more. Actually post enough daily charts to demonstrate your issues.
Fred
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