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Losing the will to fight
RE: Losing the will to fight
I should have been more clear. Let's try 8-9 pressure at EPR 3. Image 1 is normal breathing, Image 2 suggests either movement or some inspiratory restriction that results in the wavy end to expiration and start to inspiration, with the second half of the chart showing increasing flow limit. Chart 3 is a more exaggerated version of 2 and looks more flow-limited. Chart 4 may be an arousal and is a bit chaotic.
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RE: Losing the will to fight
p/xyz, I just finished re-reading this thread.  it's worth a reminder that you have expressed a fair amount of anxiety throughout.  others have pointed it out and discussed it.  it's really not surprising, given your frustration with how you feel even with relatively low numbers. idk, but I suspect a kind of self-perpetuating cycle at work. angst negatively affects sleep quality; sleep quality negatively affects angst. who knows what's chicken and what's egg; in the end it's probably irrelevant since both must be addressed.  and that's my main point.  don't discount stress and anxiety while working with the experts here to smooth out your breathing.  and keep after the experts wherever you find them.  neither is easy.  both are necessary.  I'm sure I'm not telling you anything you don't already know; consider it strong reinforcement.

a few additional things you might consider or consider more carefully (again, probably not news to you but worth a second or third look).  

if you are not using a soft cervical collar:  aside from a few people here giving up (too soon imho) on a soft cervical collar, the vast majority of members trying the collar report incredible reductions in leaks and events.  I was a skeptic.  now I'm a fervent convert.  I don't like it.  I doubt anyone really does. but the potential payoff is so great it's worth the trouble to find one you can tolerate. like everything else in life, we adapt when we have to.  we can get used to things we never thought possible.  and the collar is nowhere near as hard as finding a good mask.

if you are serious about cpap, it's a good idea to have a sleep study.  if you prefer to avoid the institutional means, apparently at-home study equipment can be rented online.  I haven't looked into them but assume they're less expensive than what we pay here in the US through doctors and insurance.   it's worth an online search and others here may have more info to give you about these.  the study gives you more definitive details about your apnea, helps define a therapeutic strategy and gives you a baseline against which you can measure success.  I'm like you, I think: in some ways, uncertainty is worse than the disease.  the cure is knowledge,  knowledge helps reduce angst.

stress and anxiety are insidious but often not easily discerned.  we may not even be aware of it.  if we are, we may not know the extent it affects us.  for example, it was only after I left a job that 2 years of shoulder and neck pain disappeared.  I had no idea.  physical and medicinal pain remedies had little effect.  that should have been a clue but neither the doctors nor I made the connection. (I'm also aware that stress and anxiety is often a fallback 'diagnosis' when physical causes aren't immediately evident; another reason to pursue multiple avenues.)  anyway, potential remedies have been suggested.  one I haven't seen here is meditation.  i've tried meditating over the years and it's not easy to be religious about doing it but I keep trying because experienced meditators tell me all the many ways it's helpful to us, not the least of which is as a relaxation technique.  plus it gives you a time for focussed rumination. helps to keep things in context, to sympathize with oneself while trying to convert negatives into positives.  this from someone that is reluctant to try cognitive behavioral therapy.  that might appear to be ironic or hypocritical but I have my reasons, right or wrong, about what I am more comfortable with and ultimately I will give behavioral therapy a chance if other means fail.  up to you, of course, to determine your own comfort zones, but by whatever means, reducing stress and anxiety is a good thing for a whole bunch of reasons including the possibility it can improve your cpap experience.  

apologies for preaching to the proverbial choir, but no harm in reinforcing potentially good ideas.  and in case it's not obvious, I'm talking to myself as much as to you!
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RE: Losing the will to fight
Sheepless: It's funny you should mention stress and anxiety, I'm currently making some lifestyle changes to treat them as well as depression as all 3 are strongly linked to insomnia, including sleep maintenance inssonia (being unable to stay asleep).
I've been considering a soft cervical collar for a few weeks now, I'll probably buy one next week as I agree with you, people often report impressive results with them.
Regarding getting a sleep study, it's something I know I'll absolutely have to do if I don't start to improve in the next few months. I don't really mind having one away from home so long as I don't need to travel too far.
I did previously practice mindfulness mediatation and was consistent with it but can't say it did much for me. I like scientific data to verify the use of things like meditation but a lot of the studies done are from people who work in some capacity with companies who make money from meditation in some way such as classes or apps. As a result I paused my meditation and was going to do some research to see if there were any studies that reported benefits from meditation that were not carried out by people who may have biasness. My sleep issues and work committments have sadly meant I haven't gotten round to carrying out this research yet.

Sleeprider: Sadly last night I had a weird nasal issue that may have affected my results. My left nasal cavity was almost completely blocked for most of the night. I'm no expert but I imagine this meant I was getting significantly less pressure in my airway than what the machine was set at.

My centrals jumped up a bit but the resmed doesn't seem to be entirely accurate when reporting them. At least 6 of the central events were when I hadn't even fallen asleep yet (I'd only been lying down 5 minutes and it takes 20-30 minutes for me to fall asleep). Looking at the flow rate graph with my limited knowledge it seems like some were just from me moving around in bed and holding my breath as I did. Of course some of the centrals were real, just not as many as resmed reported.

I guess I should try another night at these settings to see what they do without my left nasal blockage interfering. That was a very rare issue so I doubt it happens again anytime soon. I'll report back tomorrow.

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RE: Losing the will to fight
It's possible the increase in pressure and pressure support also resulted in more CA. Give it another try, but in your case, a more restful and continuous sleep is more important than the number of events. This did knock off any hypopnea. So far, your best nights appear to be APAP 6-10 with EPR 2. You need to be the final judge in terms of deciding what is most comfortable and keeps you sleeping better.
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RE: Losing the will to fight
I still woke up a 5-6 times but I feel more well rested the past 2 days. However, I had a good spell last week where I had more energy on the 6-10 settings that abruptly ended for some reason so I feel it's too soon to get excited. I've looked through the nights flow rate and noticed some common patterns.

Pic 1 is what my flow rate was like at the start of the night, shortly after I fell asleep.

The things in pic 2 happened a lot. These periods never lasted long but there may have been around 40 times throughout the night where the flow rate went crazy and was all over the place. It was definitely a lot less common on the 6-10 settings I think.

Pic 3 happened a few times throughout the night where there are long flat parts in the flow rate.

Pic 4 happened quite a bit through the night where the flow rate would look a bit rougher and more jagged.

A positive is that I was very comfortable at this increased pressure. I know it's still pretty low overall but it's an increase for me that I seem to have tolerated well.

Daily sleepyheads charts:
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RE: Losing the will to fight
You still have sleep disruption and arousals. As I said in the previous post, you need to be the ultimate judge of what is most comfortable and restful. We are working in a narrow range of therapy that seems to work best for you, and within the limited tools we have with auto CPAP, you do pretty good. Arousals in your case are generally not related to therapy parameters, and seem to occur randomly.
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RE: Losing the will to fight
Sleeprider, I understand what you're saying but there definitely seems to be a flow limitation issue. It seems I have two choices, use 6-10 pressure and have a low AHI but some FL issues. Or increase the pressure to get rid of a large amount of the FL but in return have my centrals increase. Seeing as I was feeling pretty bad on 6-10 I think there is reason to try increasing the pressure more. The centrals may even decrease once I adapt to the higher pressure.

Do you think increasing the pressure daily in a sequence like this (9-10, 10-11, 11-12 etc.) until I hopefully hit a sweet spot is a good idea?

Also, I'm going to buy a soft cervical collar today to see if it helps. It may not arrive until monday though.
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RE: Losing the will to fight
Third option is bilevel that can offer more pressure support, as well as control over minimum and maximum time of inspiration, and trigger/cycle sensitivity. I don't know or recall your insurance situation, but a patient that does not tolerate CPAP therapy is often qualified to move to bilevel. Considering the title of this thread and your diligence in trying to make this work it might be something to discuss with your doctor. Your sleep is disrupted, and you have slightly high CA events. The devil is in the details. We are close and have made good progress, but there are limits to what you can get from CPAP.
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