Is this apnea

[ddries4352]

I'm desperate for help, I was diagnosed with insomnia with sleep apnea and am now trying the cpap with discouraging results.about 6 months ago I started having constant episodes of gasping for air, no matter what position I was sleeping in. I was so sleep deprived that couldn't even process information or answer questions as I was unable to even absorb what was being asked. Since then I have what I call cycles of horrible sleep as I just described where I'm left feeling desperate for sleep, to cycles of bad sleep where I don't spend the entire day desperate for sleep but I'm still exhausted. I also suffer from migraines and this is reeking havoc on them.
I had a sleep study,but had problems getting in the rem stage, so second one was done. They immediately hooked be up to the cpap then soon after bipap. I didn't handle either well at all as I felt like I had a blanket over my head and couldn't breathe properly, even fought the process after sedation and didn't do well. Diagnosis sleep apnea.
Each time I use the cpap my blood pressure gets very high, sometimes going over 200 and the migraines are relentless as I'm sure anxiety is contributing to this. My question is this, does sleep apnea go in cycles, from really bad to just bad? The respiratory therapist I'm working with is putting so much pressure on me to use this machine and I just can't tolerate it. I really question whether or not this is sleep apnea because of the cycles,and just how good is it for my blood pressure to be so high. I would so appreciate any input that anyone can give me as I'm so depressed and ready to just throw in the towel. Thanks in advance, Deb

[zoocrewphoto]

I'm desperate for help, I was diagnosed with insomnia with sleep apnea and am now trying the cpap with discouraging results.about 6 months ago I started having constant episodes of gasping for air, no matter what position I was sleeping in. I was so sleep deprived that couldn't even process information or answer questions as I was unable to even absorb what was being asked. Since then I have what I call cycles of horrible sleep as I just described where I'm left feeling desperate for sleep, to cycles of bad sleep where I don't spend the entire day desperate for sleep but I'm still exhausted. I also suffer from migraines and this is reeking havoc on them.
I had a sleep study,but had problems getting in the rem stage, so second one was done. They immediately hooked be up to the cpap then soon after bipap. I didn't handle either well at all as I felt like I had a blanket over my head and couldn't breathe properly, even fought the process after sedation and didn't do well. Diagnosis sleep apnea.
Each time I use the cpap my blood pressure gets very high, sometimes going over 200 and the migraines are relentless as I'm sure anxiety is contributing to this. My question is this, does sleep apnea go in cycles, from really bad to just bad? The respiratory therapist I'm working with is putting so much pressure on me to use this machine and I just can't tolerate it. I really question whether or not this is sleep apnea because of the cycles,and just how good is it for my blood pressure to be so high. I would so appreciate any input that anyone can give me as I'm so depressed and ready to just throw in the towel. Thanks in advance, Deb

I have found that my sleep apnea can be worse in certain situations, such as body position while sleeping, and if I have any type of congestion or swelling in my throat. Without cpap, I have tons of events, and I wake up gasping and choking.

I am wondering though, why you are having blood pressure issues with cpap. Are you have an anxiety attack while trying to use it? Most people, including me, find that blood pressure is usually lower with cpap. So, it seems odd that it would go higher like that.

It seems to be a pretty common experience that doctors and equipment providers are NOT very good at helping people use their cpap. Often, the settings are not comfortable, and also not dong a good enough job. You need to be able to sleep and have effective pressure settings, or you just won't feel any better. You have come to a good forum, and we can help you make it more comfortable and also more effective. Please tell us what machine you have, what mask you have, what your pressure settings are, and what problems you are experiencing For example, do you feel like you aren't getting enough air?

[Mudrock63]

Agree with zoocrew, sounds like you have major anxiety issues with the treatment. It takes most folks a while to get used to having something strapped on their face when they sleep. It takes many an extended trial and error period before they find a mask that is comfortable and works for them. Also, often the doctors prescribed the minimum setting or close to it, which makes many feel starved for air.

It certainly sounds like you have been diagnosed with apnea, but what you are posting seems to point to anxiety issues regarding apnea treatment.

[Julie]

Sounds like a classic case of not having your settings properly entered and a more realistic low pressure needing to be adjusted.

[JDS74]

To help folks help you can you post the machine you are using and the pressure settings for it?
If, as has been suggested, your lower pressure is too low, that could account for the feeling of not being able to breathe.
Can you get a copy of both sleep study reports? It would help to see what pressures were tried and what mask was used.
If you put on the machine before going to bed and try it while awake does it seem that you can breathe normally? Any feelings of anxiety or panic? I suffer from claustrophobia and face masks initiate a panic attack just by being put on. That might be part of your problem.

You've come to the right place for help. Please keep asking questions and posting what is going on.
It can get better and you can get rest at night.

[ddries4352]

ResMed/ The machine is AirSense10 autoset/face mask (cannot use nasal ) due to sinus surgeries.
I agree that anxiety is playing a part In this, but even with the use of a sedative there is no change. I can force the use of the machine but that is accomplishing nothing but higher b/p.
What I'm not understanding is when I describe my sleep problem it is not what others describe as sleep apnea.
I have cycles, the first one I call being the really bad cycle where I will go days with very little sleep, that has a profound affect on my daily life, re: severe brain fog, unable to answere question due to inability to process the question. Severe depression and memory problems. Last nite I couldn't remember how to turn on my cell phone and had to ask how to do it.Desperate for sleep. The second one I call the bad cycle is when I get some sleep, but can someone what control my mood, remember a little better and not quite as desperate for sleep. I'm new to the cpap machine and even with forcing the use I'm not getting the sleep. No one seems to listen and the affect this is having on my life is huge. I no longer no where to turn or know what to do. Any advice you can offer is greatly appreciated. ddries4352

[chunkyfrog]

If you have a full face mask, I suggest a mask liner (like Pad a Cheek)
Soft cloth might help your mask feel more "normal" than silicone.

[robysue]

ResMed/ The machine is AirSense10 autoset/face mask (cannot use nasal ) due to sinus surgeries.

Now what are the settings on your machine? In particular, we need to know the following things:

1) Are you using AutoSet mode or CPAP mode?

2) Pressure setting(s)? If you are using AutoSet mode, there is both a min pressure and max pressure setting. If you are using CPAP mode, there's only one pressure setting.

3) Is EPR turned on or off? If EPR is on, what is it set to?

4) Are you using the humidifier? If so, what humidifier setting are you using?

5) Are you using a heated hose? If so, what temperature setting are you using?

6) Are you using the ramp feature? If so, what is the initial ramp pressure and how long is the ramp period?

There are all kinds of things about the settings that may be aggravating your anxiety and your feeling of not being able to breath when the mask is on and the machine is blowing air at you. But we really can't make intelligent recommendations about which settings to tweak and how to tweak them if we don't know what your settings actually are.

I agree that anxiety is playing a part In this, but even with the use of a sedative there is no change. I can force the use of the machine but that is accomplishing nothing but higher b/p.

It sounds to me like the anxiety caused by trying to use the machine is responsible for the increased blood pressure. You need to report that the antianxiety medication that you take is NOT sufficient to ward off the anxiety attacks when you are trying to use the machine. Report this fact to both the doctor who prescribed the antianxiety medication and the sleep doctor. You may also want to consider getting some counseling from a therapist who is good at cognitive behavior therapy (CBT). Some personally tailored CBT for learning how to deal with the anxiety caused by trying to force yourself to use the machine may be what's required to really address the anxiety issues.

What I'm not understanding is when I describe my sleep problem it is not what others describe as sleep apnea.
I have cycles, the first one I call being the really bad cycle where I will go days with very little sleep, that has a profound affect on my daily life, re: severe brain fog, unable to answere question due to inability to process the question. Severe depression and memory problems. Last nite I couldn't remember how to turn on my cell phone and had to ask how to do it.Desperate for sleep. The second one I call the bad cycle is when I get some sleep, but can someone what control my mood, remember a little better and not quite as desperate for sleep.

The OSA is not exactly the same every night. And the symptoms of untreated OSA can vary quite a bit from day to day and they can be somewhat "cyclic" depending on how they relate to other medical problems you might have.

Let me explain what I mean here: Yes, the brain fog from untreated OSA can lead to depression or it can also aggravate depression that would exist even if you didn't have the untreated OSA. Insomnia by itself can lead to daytime brain fog if it's bad enough or lasts long enough. And you might or might not have intractable insomnia even if you don't have untreated OSA. When you've got a situation where you are likely dealing with depression, anxiety, insomnia, and OSA as seperate medical conditions that strongly affect each other, a worsening in one of the conditions can make several of the others get worse. Likewise, some positive treatment of one of them may lead to a slight improvement in the others, at least in the short term.

So what may be happening is this: Your baseline sleep is pretty bad because of the untreated OSA and that causes a certain degree of brain fog, which aggravates both the anxiety and the depression. A string of several bad OSA nights in a row, however, aggravates the anxiety enough to cause an unconscious fear of choking to death in the sleep, which then manifests itself as your insomnia gets much worse, which of course generates a "horrible" sleep period where it seems like you can get no sleep whatsoever (because of the insomnia). And because you're now getting almost no sleep, the brain fog, depression, and anxiety all increase. But you eventually reach a certain point where your body's physical need for some sleep (even the really bad apnea-filled sleep of untreated OSA) starts to counteract the worst of the insomnia and you start to fall asleep again. However, the sleep remains inherently bad because of the untreated OSA. And then you're back to the beginning of another "bad, but not horrible" patch of sleep.

Over the weeks and months (and possibly years) your sleep waxes and wanes between "pretty bad", when the only thing that's really keeping you from getting a decent night's sleep is the untreated OSA, and "really horrible", when it's the combination of the insomnia and the untreated OSA that's keeping you from getting any sleep at all.

Treating the OSA might be enough to break the feedback loop you're in and eventually improve your sleep to the point where it no longer waxes and wanes between "petty bad" and "really horrible." But successfully treating the OSA will require you to deal with the very real anxiety that you are currently trapped in: As long as trying to use the machine triggers enough anxiety to increase your b.p., you're going to find it close to impossible to actually treat the OSA with PAP. Hence it's critically important that you report the anxiety issues to the sleep doc AND to the doc who has prescribed whatever sedative or antianxiety medication you are currently taking. You need to ask both docs for ideas on how to deal with taming the anxiety that occurs when you put the mask on. Perhaps the answer is as simple as adjusting the dose of the sedative or changing the prescription to a different antianxiety medication. Perhaps one or both will be able to recommend a good CBT therapist for you to work with.

I'm new to the cpap machine and even with forcing the use I'm not getting the sleep. No one seems to listen and the affect this is having on my life is huge. I no longer no where to turn or know what to do. Any advice you can offer is greatly appreciated. ddries4352

When you say "no one seems to listen", do you mean the sleep doc? the RT who set your equipment up? your PCP? the doc who prescribed the sedative and/or antianxiety medication?

Because any advice on "what to do" depends strongly on what exactly you've told all of these people and what they have told you to do.

My best advice is to seek out a really good therapist who is experienced in CBT for anxiety and insomnia issues. And then be stubborn enough to keep working with that therapist over the next several months while coming up with baby steps to address how to first figure out a way of tolerating the PAP without increasing your b.p. and then second figuring out a way of teaching your mind and body to trust the PAP enough to fall asleep with the mask on your nose.

[ddries4352]

Thank you so very much for such a full explanation, it is so
reassuring I'm not going crazy.
Now to answer your questions
1.autoset
2 5-20
3 on
4 no
5 no
6 auto
My full diagnosis is insomnia with sleep apnea, so your explanation makes perfect sense and is exactly what happens. I first started with the cpap on Monday and I'm also in the horrible cycle, which I'm sure is contributing to the situation. I feel so angry with the cpap as I'm desperate for sleep in this cycle and the cpap is taking away any possibility of that happening. (Hence raise in the BP.)
When using the cpap I feel like I have a blanket over my head and struggle with getting enough air, but if I take my finger under the mask and break the seal it feels better.
I also agree that therapy could be very beneficial as during those horrible cycles my thoughts are not good.
I am suppose to have an appointment the 26th of this month with the sleep specialist to discuss some of these issues, but RT feels it should be cancelled until I have been compliant for 31 days. His only focus is compliancy, which is putting to much pressure on me.
I have to admit I'm not the greatest at being assertive due to bad experiences in the past so I do own my responsibility. I so do appreciate the time you have taken and thank you for giving some clarity . ddries4352

[robysue]

1.autoset So the mode is APAP
2 5-20 Pressure range is almost wide open
3 on EPR is on. What's the setting?
4 no Humidifier is off or not used. Any excessive dryness? Or is no additional humidity OK with the nose and throat?
5 no No heated hose
6 auto Auto ramp. What's the beginning ramp pressure?

You also write:

When using the cpap I feel like I have a blanket over my head and struggle with getting enough air, but if I take my finger under the mask and break the seal it feels better.

Since you feel as though you are not getting enough air in the mask, one of your problems is probably that very low starting pressure of 5cm combined with the Auto ramp. My understanding of Auto ramp is limited, but I believe that Auto ramp does not start raising the pressure until the machine is detecting flow rate data that strongly indicates that you are actually asleep. So you may wind up being at an uncomfortably low pressure for a long enough time to cause significant discomfort. You may very well want to increase that minimum pressure to 7cm or so and see if that helps with the "struggle with getting enough air" problem.

By the way, there's a good reason that breaking the seal of the mask is making you feel better: As soon as the seal is broken, the machine has to ramp up the amount of air it's blowing into the mask in an effort to keep the pressure at the current level. You feel that moving air and your brain, which does not yet fully trust the PAP machine, is reassured that enough air is available so that you won't suffocate. One thing that you can try to do before breaking the seal of the mask is to see if putting your fingers near the exhaust vent so you can feel the air moving through the mask provides the same sense of relief. It's also worth noting that the longer the mask is on your nose, the "harder" it is to tell that air is indeed blowing through the mask. A lot of experienced PAPers will routinely put their hand near the mask's exhaust vent if they wake up during the second half of the night to reassure themselves that the machine is indeed on and doing its work. Feeling that breeze lets them quickly get back to sleep because their brain is reassured there's nothing out of order.

My full diagnosis is insomnia with sleep apnea, so your explanation makes perfect sense and is exactly what happens. I first started with the cpap on Monday and I'm also in the horrible cycle, which I'm sure is contributing to the situation. I feel so angry with the cpap as I'm desperate for sleep in this cycle and the cpap is taking away any possibility of that happening. (Hence raise in the BP.)

I say this as someone who has had more than my share of insomnia+CPAP problems: Tell your sleep doctor that you are having severe insomnia problems now that you are trying to wear the mask everynight. And then listen carefully to any ideas the doc might have for getting you over the hump.

The sleep doc may very well suggest a short course of prescription sleeping pills such as Ambien. If taking something like Ambien is OK with the doc who has prescribed whatever sedative/anti-anxeity medication you are taking for the anxeity issues, then it may be worth taking the prescription sleeping medication for a few weeks if necessary.

If you cannot or do not want to take prescription sleeping pills, you need to be working (hard) on using appropriate cognitive behavior techniques for trying to rein in the insomnia. In particular, you will need to consider which parts of good sleep hygiene are critical for you to work on. In my own battles when I was in the dark days of my own difficult CPAP adjustment, it turned out that a regular wake up time was the one most important part of sleep hygiene that I needed to enforce in order to teach myself how to get to sleep quickly enough that all the (negative) sensations coming from the mask don't bug me enough to make me become more alert.

I am suppose to have an appointment the 26th of this month with the sleep specialist to discuss some of these issues, but RT feels it should be cancelled until I have been compliant for 31 days. His only focus is compliancy, which is putting to much pressure on me.

Is the appointment on April 26th with a sleep doc or a PA/nurse practioner in a sleep doc's practice? Or is the "sleep specialist" the RT who set up your machine?

In either case, you need to have an appointment with a sleep doc or a PA or nurse practioner in a sleep doc's office, and if you have an appointment set up with a sleep doc, do NOT cancel that appointment. But also go into that appointment with a (short) list of questions that focuses heavily on the fact that your insomnia has gotten worse while you are trying to become compliant with CPAP and that you are at your wits' end just trying to get some small amount of sleep with the machine. Be honest about the anxiety. And be sure to mention that you think your blood pressure seems to go up when you are trying to sleep with the machine. The sleep doc's job ought to be to help you figure out how to tackle these medical problems associated with the prescribed treatment. (Of course, a lot of sleep docs simply don't do a decent job of doing their job. But that's another issue.

Meanwhile ignore the RT. Or if the RT is some how the gate keeper to seeing the sleep specialist, then stress to the RT that you absolutely have to have some professional help for the insomnia from the sleep specialist before there's any chance that you will be able to get and stay compliant with therapy.

I have to admit I'm not the greatest at being assertive due to bad experiences in the past so I do own my responsibility.

It's hard to be assertive, particularly when you are feeling so awful. I was very lucky that my husband was willing to step up and be my advocate when I was struggling during the first 6 months of PAP therapy. If you have a significant other or even a very good friend who is willing to help you, you may have more luck in getting the help you need if you put them on the HIPAA form and let them deal with some of the stupid stuff like phone tag when you just can't do it yourself.

[ddries4352]

I'm not sure of the setting answers as I am not familiar with this machine. I will say from day 1 I am really congested, not sure if from this therapy or getting cold.
My appointment on the 26th of April is with a Pulmonologist /sleep specialist. I will first spend the first 60 min.with his PA, then the last 30 min. With him. Your suggestions are right on and I will take your advise on this. All of this makes so much sense now and I actually feel hope that I might get my quality of life back. The impact of insomnia on a person's life is huge and has created havoc in mine.
I can’t thank you enough for taking the time to help be understand what was happening to me. Knowledge is power, and now I feel with this knowledge I have a much better chance at being successful with this whole journey.
I really want you to understand how the time you took to address this post most likely saved my relationship with my family, but also most likely saved my life. I will always be grateful for, at the very least the feeling of hope, but more importantly finding you here. Eternally Grateful, ddries4352

[RogerSC]

I'm not sure of the setting answers as I am not familiar with this machine. I will say from day 1 I am really congested, not sure if from this therapy or getting cold.

Just a quick comment, you're getting plenty of advice *smile*. Often congestion is affected by the level of humidification. So you might try playing with the level of your humidifier to see if you can reduce the congestion. Don't know what level you're using but if it's a high level, try reducing it. If you have a low level, try increasing it. Dealing with getting cold is fairly easy, if it's your nose that might be getting cold, then you can turn up the temperature assuming that you have a heated hose. If it's your body that's cold, and that's affecting your nose, you know how to take care of that.

Anyways, there's several adjustments that you can try changing (change only one adjustment at a time, that helps you to understand which adjustment is responsible for the change in how you feel). I'm sure that you'll get your therapy tuned in before too long, you're getting lots of help in that direction.