Forum · 6 months in, why don't I feel better?

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[-] CreativeMauveWolf3111 +0 points · over 2 years ago

I was diagnosed with Severe Sleep Apnea 6 months ago and have been on a machine (Resmed Airsense 10) since. I average about 7 hours a night and my "score" with Resmed (My Air) is consistently in the mid 90's. Everyone said that my life would improve and I would feel better with more energy. It just hasn't happened, I feel the same each day. The amount I sleep each night is the same as it was before the machine. What gives? Anyone?

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[-] TheresaS +0 points · over 2 years ago

@CreativeMauveWolf3111

Thank you for your posting. Was wondering if you have had any follow-up studies, or what your physician has said to you regarding not feeling better since therapy?

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[-] CreativeMauveWolf3111 +0 points · over 2 years ago

I haven't seen a doctor yet. The NY Sleep Institute is where my study took place and that's where I received my machine. They have not contacted me for any follow up. It's a horrible place that is basically a CPAP distribution factory. They dole out machines as fast as possible with no care or follow up. I'm going to see my own doctor soon.

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[-] Arch +0 points · over 2 years ago

I've been on the hose since August of 1999, I ran an AWAKE group for 5 years and I'm married to a sleep tech. You definitely need to see a sleep doc and should probably have another sleep study done. It's very rare that a patient doesn't notice improvement after 6 months of CPAP therapy. The two things that come to mind are that either the pressure you are on is wrong or your mask is leaking. Get into see a doc ASAP.

Joe

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[-] ConsiderateLimeCrow9586 +0 points · over 2 years ago

I'm having the same problem. I've been on cpap for about 6 months now and feel just as crappy as before I started. For the first 4 months I had problems finding the right mask that didn't leak or leave my nose bruised. I was also diagnosed at the sleep study as needing a pressure of 5. I've since found out I needed to have a pressure of 10. Unfortunately, this hasn't fixed the problem either. I've heard that if you've had sleep apnea for years that sometimes it takes longer to feel better. Any thoughts on this?

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[-] BrainsNeedSleep +0 points · over 1 year ago

The fact that it takes so long to (a) get properly diagnosed, (b) properly set up with pressure, mask,, etc, and (c) figure out all the small things that make a huge difference is IMO outrageous, especially for something so incredibly fundamental to our health as sleep. It took from 2008 to 2015 for me just to get the right treatment, and now I am, finally, seeing significant and sustained improvement. The intervening years were a nightmare. If you are NOT feeling better after all this time, (and I see you posed 9 months ago, you may be long gone by now, sorry) you need a new sleep doctor or you need to find others with the issue and learn from them. I have my fingers crossed you haven't just thrown out the mask and machine and are now somewhere on the planet feeling lousy.

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[-] SusanR +0 points · over 2 years ago

This discussion is extremely important-- its understandable how frustrating it is when despite following all medical advice, including wearing CPAP nightly, you still feel poorly. I am assuming by "crappy" you mean you are not feeling refreshed after a night's sleep and are feeling tired or sleepy during the day--is that what you mean?

There are a few straight forward responses, but indeed this problem sometimes does not have an evident quick fix.

As mentioned, when feeling sleepy or tired despite using CPAP the entire or most of your sleep period, you should speak with your sleep specialist to ensure you are indeed getting the optimal pressure and not losing pressure due to mask leak. Sometimes the machine's output is not precise enough to determine whether you really are getting the pressure you need and a follow up formal sleep study is needed.

A second sleep problem--such as periodic limb movements-which can disrupt sleep-might be considered. A repeat sleep study might be needed to assess this.

You and your doctor should ensure that you are getting the right number of hours of sleep per night (generally 7 to 8 for adults, but this could vary person by person) and following a consistent sleep schedule is important: no amount of CPAP will help if you are only getting a few hours of sleep per night!

Sometimes medications have side effects that include fatigue and sleepiness and you and your doctor may want to review your medications, as well as to make sure there are no other medical issues that may be contributing to fatigure or sleepiness. Undiagnosed depression is sometimes a contributor to continued sleepiness or fatigue. Obesity has been associated with sleepiness and fatigue and weight loss and diet/exercise can be helpful in improving alertness and vigor.

Finally, it is estimated that as many as 10% of patients with sleep apnea have some degree of continued sleepiness/fatigue despite what seems to be optimal treatment of their sleep disorder. It has been speculated that these patients may have had untreated sleep apnea for a long time and some of the brain areas controlling alertness may have been affected. In this small group of patients, there may be benefit to careful use of prescription medications that have alerting actions while continuing CPAP--taking such medication needs to be a very carefully considered decision by the patient and his and her doctor, and will require close monitoring by the patient's doctor.

An excellent review of the problem of continued sleepiness despite CPAP therapy can be found at: http://www.medscape.com/viewarticle/812910. This might be something you want to print out and discuss with your doctor.

But dont give up--as noted above, there are many things that need to be explored to find which of the factors, when addessed, will help you the most.

I would like MyApnea.Org to consider future research on this problem. If this problem affects 10% of patients, then with our current membership of almost 5000 people, there are at least 500 sufferers in our community. Let me know your thoughts.

Thanks for the opportunity to contribute to the discussion-Susan Redline

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[-] OptimisticAmethystMink3821 +0 points · over 1 year ago

4cm-12cm to 5cm-12cm it will affect my treatment? I am going to do it myself because I'm 4cm I feel suffocating

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[-] DanM +1 point · over 1 year ago Sleep Enthusiast

I @OptimisticAmethystMink3821. Increasing the starting pressure may help with your feelings of suffocation. Some patients find that 5cm or 6cm is more comfortable. If you want to change your pressure, I recommend that you contact your home care provider so they are aware of the situation. Depending on your machine, they may be able to adjust your settings remotely.

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[-] BrainsNeedSleep +0 points · over 1 year ago

Dan, again that seems counterintuitive. Can you elaborate? Would that be a good "learn" topic? Thanks.

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[-] FaithfulCoffeeWildcat3239 +1 point · over 1 year ago

I was not having a problem with sleepiness but stopping breathing while sleeping and the result was extremely low O2 levels. I have been doing the CPAP for more than 5 months with two different masks (and tried several other during initial fitting and followup) and find that the quality of my sleep is worse now than it was before. I frequently take afternoon naps because I am sleep, this is something I never did before I started doing a CPAP. I won't say I feel worse, but I certainly do not feel any better. Yes I am fed up and dislike doing the CPAP and hope to find some other means to fix my problem with the low O2.

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[-] DanM +1 point · over 1 year ago Sleep Enthusiast

@FaithfulCoffeeWildcat3239, have you considered speaking with your physician about other options for treating your sleep apnea? Depending on the severity of your diagnosis, you may be a candidate for an oral appliance, for example.

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[-] wiredgeorge +1 point · over 1 year ago Sleep Enthusiast

Dan is on the mark. I also stopped breathing for long periods but I was constantly dozing during the day as a result. The cause was low O2 levels. I think if you check your blood oxygen yourself you would be better served regarding an intelligent decision on what course of action to take. I have a blood oximeter that looks like a wrist watch and it can record O2 levels while I sleep. If your O2 levels are dropping too low, then the treatment isn't doing what it should and this is where a doc would come in and you could provide some relevant info that could steer any revised treatment. My O2 meter cost less than $100 and I bought it on eBay. It is fairly accurate and the software install on my PC was easy.

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[-] AmiablePurpleDragonfly0984 +0 points · 8 months ago

I have used my cpap mask and machine for 5 nites and it works. My wife says my snoring stopped and I feel great. Hope this advise helps others. Harvey

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[-] AffectionateLilacKomodoDragon1594 +0 points · 6 months ago

I have used my cpap machine for 5 month and do not feel an improvement. Is there a still a "benefit" if you do not feel any effect? Without the cpap machine my home O2 night levels do not dip below 90%

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[-] wiredgeorge +0 points · 6 months ago Sleep Enthusiast

AffectionateLilacKomodoDragon1594 - The key word in your post is "feel". This is kind of a subjective thing and one person who gets on therapy will have their own feeling vs another so it is hard to gauge what YOU are feeling or felt before therapy. I actually felt just fine before I started therapy where they found I had "moderate" OSA. The issue was that I stopped breathing for long periods and didn't wake up when I started breathing again with a gasp. My SPO (O2 level) dipped into the low 70s for a prolonged period. The daytime result of low blood oxygen was falling asleep at the drop of a hat during the day; often causing dangerous situations.

I think there can be two issues... one, your daytime lack of perceived benefit may be subjective; perhaps you just feel the way you do regauless of therapy. If your SPO didn't drop to unacceptable levels without CPAP then I can't imagine how you could tell much difference. Some folks claim to feel perky and alert in the mornings after therapy. I never felt perky but was pretty alert prior and today. The other thing that crosses my mind is that your therapy may not be working. Do you monitor AHI via some means? You may also have some other condition that is non-apnea related that contributes to the way you feel.

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[-] kong +0 points · 6 months ago

I have been on CPAP for many years. When I started, I read about people describing how their life was transformed by CPAP. So many people love their CPAP machines. I still don't love my CPAP machine. As far as I can tell, I don't feel any better as a result of using it. However, I use it because I care about my health. I have severe sleep apnea. I want to live a long, healthy life.

You'll also find many people who hate their CPAP machine and, as a result, don't use it. I don't feel that way.

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