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My doctor suggested patience - Annecelesye - 03-03-2020
[attachment=20580]
...but it seems that I don't have anymore, so I am addressing to you for help because I am really feeling not well at all. I had a sleep study a month ago because of excessive snoring and a feeling of chest restriction during the night and on waking up. I have a BMI of 27,4 and a family history of sleep apnoeas and I have a vague history of asthma with normal spirometry but clinical evidence, so I use inhalers (relvar) every day. I thought that the dyspnoea and chest pain every night was due to asthma but my sleep doctor told me that my severe problem (AHI 64,45, minimal SpO2:79) caused my discomfort. I use my cpap every night for 14 days but I wake up very tired with heavy legs and my doctor tells me not to watch the cpap's monitor because I am doing fine and everything will fix by itself after several months. I tried to find a solution by myself, getting help from this valuable site and I read as much as I could but to no avail. Last night was very difficult. I post an attachment and I am very grateful to anyone reading my story and possibly giving an answer.
RE: My doctor suggested patience - mesenteria - 03-03-2020
We hope you have come to the right place.
First thing I see, your lowest pressure setting; it's too low. Almost everyone who comes here complaining about their early days of therapy and who learns that a setting of '04' is too low by our experience, will go ahead and raise it to about 5.5-6.0 and find that they are no longer air-starved during the night and when attempting to settle in and to fall asleep. You can do that in your menu.
Secondly, you appear to have some fairly strong clustering of events. That often means that you are tucking your chin (pinching off your windpipe) as you sleep, maybe and probably when on your back. Avoid sleeping that way, but also consider purchasing an inexpensive soft foam cervical collar. Regrettably, they also take some getting used to (they can be itchy and/or warm), but you might find relief that way.
Thirdly, you have quite a few 'clear airway' events. This might only be due to treatment (it happens, unhappily), but it might be due to the way your pressure limits and relief method during exhalation are configured. I'll defer to a couple of gurus here to help you with that.
Fourthly, you may have some Cheyne-Stokes going on. Again, the gurus will have to dispel what your machine is reading and reporting, or they'll suggest another intervention, maybe even a completely different therapy...including a new type of machine.
You will learn a lot shortly, and you'll have to be open-minded...for your own good. Continue being patient, try everything we suggest, and hopefully you'll improve. You can always discontinue something that forces you the wrong way, but if you won't/can't try new things, you'll get nothing out of what we offer you.
Good luck!!
RE: My doctor suggested patience - Gideon - 03-03-2020
Welcome to the AB forum,
Your doctor suggested patience because he suspects that your central apnea is Treatment-Emergent and he is likely right, These often, not always, significantly reduce in 2-3 months (patience)
Do you have a copy of your sleep studies, especially the pre-CPAP or diagnostic one. Can you post a redacted copy of them, the It is good to see if they indicate if you had any central apnea prior to CPAP.
Treatment-Emergent Central Apnea occurs when your, not everyone's, CPAP increases the efficiency of your breathing and as such increases the clearing of CO2 from your blood. While this sounds good in your case it is not. The main drive to breathe comes from the need to clear CO2 out of the system and if it drops below your 'apneic threshold' a central apnea occurs. This can often be remedied by reducing EPR and / or pressure.
Set EPR = 0 or off, you are currently at EPR=1.
Try setting your min pressure = 7 as most adults have difficulty breathing if pressure is under 6 and your mean pressure for EPR= 1 is 9. Later we may want to try reducing you to a tight band as that frequently helps with centrals, but let's wait to try that.
So 2 changes. Min Pressure = 7 and set EPR = 0 or off.
Your flow limits are on the high side, normally I'd suggest increasing EPR to better treat them but now that will likely cause higher centrals. Therapy for mixed apnea with a CPAP machine is a balancing act between obstructive and centrals.
RE: My doctor suggested patience - Annecelesye - 03-04-2020
Thank you very much for your response. I just woke up from another stressful night. What I miss more are my dreams. Although they were on the nightmarish side, it is sad not having any. I will follow your advice tonight (that means in 15 hours, it is 8 am here now). I don't have my full sleep study, so I attach the summary. From the few I can understand, no central sleep apnoeas were detected. I don't have a diagnosed cardiological problem either, except mild arrhythmia. Thank you, thank you again.
RE: My doctor suggested patience - Gideon - 03-04-2020
You had 1 mixed apnea, that is an apnea with the characteristics of both obstructive and Central apnea. That is not significant and supports the Treatment Emergent Central apnea
Let's see what happens tonight.
RE: My doctor suggested patience - Rcgop - 03-04-2020
Patience is good advice. I just passed my 4 year mark and have seen gradual improvement from the beginning. My charts looked like yours in the beginning. Now I am consistently below 0.5 AHI. Dreams went from nonexistent to nonsensical, to nightmares, to normal.
However, active participation is essential.
Good luck.
RE: My doctor suggested patience - Annecelesye - 03-07-2020
Hello again,
I tried with EPR 0 but I felt uncomfortable so I changed it again to EPR 1. I changed my min pressure though. Today I woke up tired and with a sore throat. I am certain that I didn't catch the covid 19 yet (I am not so sure about the future since the cases escalate daily). I attach my last night's report. Thank you very much
RE: My doctor suggested patience - Sleeprider - 03-07-2020
Two things. Your pressure is too low, and the minimum needs to come up to 8.0 cm. This will help prevent the obstructive events, and will make pressure more consistent and less disruptive to your sleep. If you can tolerate more EPR without increasing CA, it will help with flow limitation which is a significant factor in hypopnea and a driver of your pressure.
You appear to have positional apnea. Your events are clustered in groups and associated with mask leaks, both of which are often related to chin tucking. See the Soft Cervical Collar wiki in my signature.
RE: My doctor suggested patience - Dormeo - 03-07-2020
In your sleep study, you were on your back the whole time. Is that how you usually sleep? Any chance you could try sleeping on your sides to see what happens?
Even if you stay on your back, there are a couple of things to consider. One has already been mentioned: a soft cervical collar. Another is to use a low, firm pillow, ideally one with a hump that supports your neck and lets your head drop back a little. That sometimes helps with the "chin-tuck" problem.
It's hard to be patient with treatment-emergent centrals, but they do often dwindle as time goes by and your body resets. You are in the best of hands with help from Sleeprider and Bonjour, and I know they will be able to guide you further as you try out their suggestions.
RE: My doctor suggested patience - Annecelesye - 08-08-2020
Hello,
while I was ready to post a success story, I experienced a problem during the last week and I am once more addressing the board for help. I try to sleep on my side and switch sides from time to time. Last night I woke up feeling a lot of air coming through the mask and I realized that I was on my back. I tried to fall asleep again but I was panicked and felt a restriction on my chest. Now I am awake still feeling restricted and dizzy and I am afraid of getting back to sleep. I had three such events last week. I post my last night's chart and while it is evident how improved it is in comparison to the initial ones, I seek your advice.
Thank you