Last Night Was First Night

Iancdub88 wrote: ↑

Mon Jul 01, 2024 6:39 am

Last night was pretty bad. I had an hour straight where I was about to finally reach a full sleep and I would wake up.

You may want to try an old insomnia-treatment trick: If you haven't managed to get to sleep in what feels like 20 or 30 minutes, get out of bed and do something quiet in another room until you feel good and sleepy enough to try again. Don't watch the clock while you're trying to get to sleep---just estimate what you think is about 20 or 30 minutes, and if you're still waking back up just as you are about to get to sleep, then go ahead and get out of bed and go to a different room.

When you're out of bed, don't get on the computer or your cell phone. Don't watch tv. Read a real book perhaps. Or listen to some quiet music.

Then I had a panic attack when the pressure changed.

That's a good reason to consider using a fixed pressure.

Also---if you have had a past history of panic attacks and general anxiety, you might want to consider talking to your primary care doctor about anti-anxiety medication.

I was afraid to put the mask back on for the rest of the night, I think I'm actually developing a fear of it. I put it back on for the last half hour this morning and it did quell the fear a little bit but I think I'll need to stick to fixed pressure while I get used to it.

It's important to address the fear in a positive fashion.

One thing you could try is this: Far away from bedtime, move the cpap to a room with a comfy chair in it. Set the cpap up by the chair and get yourself something to do (laptop, cellphone, watching tv, or reading all work) for an hour or so while sitting in the chair. Put the mask on and turn the machine on with no intention of even trying to fall asleep while you're sitting in the chair. At first don't even worry about how long you keep the mask on---let yourself take it off whenever you feel like you're getting ready to panic. Then sit in the chair continuing doing whatever it is you have chosen to do for a few minutes to settle yourself (both mind and body) down and put the mask back on and turn the machine back on and keep the mask on for as long as you can tolerate it.

The idea is for you to teach both your body and your brain what all the normal CPAP sensory stuff feels like and how to accept all that sensory stimuli as being normal when you are not also stressing out about trying to get to sleep with the dang thing on your nose.

After an hour or two (at most) of attempting to use the CPAP while awake, move the equipment back to the bedroom and get it all set up for bedtime. And then try hard to not think about the CPAP for the rest of the day/evening until it's time to put the mask on and try at the beginning of the night to actually sleep with the thing.

Keep dragging the machine into the room with the comfy chair every day until you have no problem keeping the mask on for at least an hour while reading or web-browsing or watching tv and/or you start to feel more comfortable at night when trying to get to sleep with the mask on your nose.

I'm really depressed and tired and feeling like giving up on this therapy.

These are pretty normal feelings for people who are having trouble adjusting to this crazy therapy.

In my case, I was just plain stubborn enough to make this crazy therapy work even though it took several months. While it was hell for a while, I'm glad I stuck with it and with the help of this forum found a way to make this crazy therapy work for me.

Iancdub88 wrote: ↑

Mon Jul 01, 2024 8:11 am

Also, my doctor seemed annoyed that I would mess with the settings.

Some docs seem annoyed at almost everything. Some docs don't like patients questioning anything. Other docs figure out that some of their patients are knowledgeable and respect them when they choose to make informed choices about their own therapy.

I went through 3 or 4 sleep docs before I found one who respected me and understood that I did not want to be treated like a mushroom being kept in the dark about my own body and my own therapy.

They really just expect the factory defaults to work across the board?

Two comments:

1) (The more generous one) If you have not had a formal in-lab titration study where the tech intentionally increases your pressure 1cm at a time in response to specific criteria, then the doc or sleep center that prescribed the AutoSet may very well think that running in Auto mode with the pressures wide open at 4-20cm for the first 2 or 3 weeks is a good alternative to doing the in-lab titration study. In this case, the AHI and pressure data is typically looked at after that initial period and then some kind of a recommendation for a fixed pressure or a narrower pressure range is made. With today's xPAP machines, that information can be sent out to the DME who sold you the equipment and they can remotely adjust the machine if your machine has a wireless connection.

2) (The less generous one) Some docs do seem to think that there is no reason to change the default settings. They think, "The machine is in Auto and it can adjust to what's happening every night. There's no need to change the default settings---they should work for everyone."

Docs who fall into #2 unfortunately also often are the ones who are most annoyed with patients who change settings on their own because they see this as a "threat" to their "authority". Sometimes the only thing to do when you've got such a doc is to fire the doc and find a new one. Keep in mind that any doctor can prescribe a xPAP machine (and its supplies), so if you've got a good relationship with your PCP, you can ask them to take care of the scripts needed for xPAP therapy and simply go without a formal sleep doc.

robysue1 wrote: ↑

Mon Jul 01, 2024 8:48 am

Also---if you have had a past history of panic attacks and general anxiety, you might want to consider talking to your primary care doctor about anti-anxiety medication.

I have had anxiety most of my life but meds have never done anything but make it worse.

Thank you for all of your pointers, I will do that after work today in the living room.

Also, what are your thoughts on temporary sleep medication? I've seen mixed things online.

robysue1 wrote: ↑

Mon Jul 01, 2024 9:05 am

Some docs seem annoyed at almost everything. Some docs don't like patients questioning anything. Other docs figure out that some of their patients are knowledgeable and respect them when they choose to make informed choices about their own therapy.

Once I told her the pressure changes were making me panic, she backed off and said I should do what makes me most comfortable.

Iancdub88 wrote: ↑

Mon Jul 01, 2024 9:13 am

robysue1 wrote: ↑

Mon Jul 01, 2024 8:48 am

Also---if you have had a past history of panic attacks and general anxiety, you might want to consider talking to your primary care doctor about anti-anxiety medication.

I have had anxiety most of my life but meds have never done anything but make it worse.

Thank you for all of your pointers, I will do that after work today in the living room.

Also, what are your thoughts on temporary sleep medication? I've seen mixed things online.

I fought the idea of using prescription sleep medication tooth and nail for a very, very long time. I had plenty of experience dealing with insomnia my whole life, and I stubbornly tried to deal with the insomnia triggered by the aerophagia + CPAP stuff through sleep hygiene and cognitive behavior therapy for insomnia for several months, but non-drug methods of controlling what I referred to as the CPAP-induced insomnia were not very successful.

Eventually the PA who was treating me at the time suggested using Ambien on an "as needed basis" with the idea that I would not need to take it every night if I didn't want to, but that if I had a real disaster in terms of not sleeping on one night, that I would take it at the beginning of the next night. That did help quite a bit, but I did have problems with "Ambien hangover" at times even when I was cutting the smallest dose Ambien pills in half. (I seem to be extra sensitive to a lot of medication.) When Belsomra came on the market, my then sleep doctor (the best of the bunch) put me on it, and I did well on it and had no trouble at all weaning myself totally off of it when I was ready to quit taking sleep medication.

My biggest regret concerning sleep medication is how long I fought the idea of taking it. In retrospect I think I should have started taking a prescription sleeping pill on an as needed basis much, much earlier in my difficult adjustment instead of being stubborn about the idea.

So I'd say it's worth trying a sleep medication on a temporary basis. If you're really worried about it, you can always do what I did with the Ambien: Take it "as needed" where you choose what "as needed" means. But since most (not all) sleeping medication is designed to be taken at the beginning of the night, if you don't take it on, say, Monday night and have a disaster, then go ahead and take it at bedtime on Tuesday night to try to prevent two disastrous nights in a row.

As for what sleep medication to try, that may depend on your doctor and your insurance as well as your own reaction to them. There are several medications to choose from besides Ambien. Belsomra is probably more expensive, but it works in a different fashion than the rest of them and it seems to be less prone to causing drowsiness the next day as compared to things like Ambien.

robysue1 wrote: ↑

Mon Jul 01, 2024 10:24 am

As for what sleep medication to try, that may depend on your doctor and your insurance as well as your own reaction to them. There are several medications to choose from besides Ambien. Belsomra is probably more expensive, but it works in a different fashion than the rest of them and it seems to be less prone to causing drowsiness the next day as compared to things like Ambien.

I have a phone appointment with my doctor tomorrow morning. Hoping he's open to the idea.

Iancdub88 wrote: ↑

Mon Jul 01, 2024 8:11 am

Also, my doctor seemed annoyed that I would mess with the settings. They really just expect the factory defaults to work across the board?

I only have ever made minor changes to my original settings that were set up by my clinicians. I dont think they were ever factory defaults.

Craig H wrote: ↑

Mon Jul 01, 2024 4:02 pm

Iancdub88 wrote: ↑

Mon Jul 01, 2024 8:11 am

Also, my doctor seemed annoyed that I would mess with the settings. They really just expect the factory defaults to work across the board?

I only have ever made minor changes to my original settings that were set up by my clinicians. I dont think they were ever factory defaults.

Did you have an overnight study? I did the in home one so they didn't set anything up for me.

Had another very rough night. Only had the mask on for 2-3 hours. I know I'm never supposed to try and sleep without it but at this point, it's that or no sleep at all. I've never been this exhausted and I've never been this depressed. Both of previous 2 mornings have contained episodes of sobbing. I have an appointment at 10:30 with my doctor to either see about being put on a sleep med temporarily or maybe even giving up. I honestly don't know at this point. I know that everyone says it gets better if you just stick with it but it's really hard feeling almost tortured in the meantime.

I'm almost positive it has nothing to do with the mask or equipment. My body is about to hit a deep sleep and then it's like my brain forces me awake because it doesn't trust it. I've tried meditation. Yesterday I sat in the living room with the machine on for about an hour and I had no problem with that. It is literally just the second I'm about to fall asleep and dealing with that over and over does feel torturous.

I'm sorry to sound so bleak. It's just how I feel right now. Everyone on here has been so incredibly helpful so maybe you can offer a tiny ray of hope.

I hope your doctor just prescribed a sleep aid so your body can start getting used to sleeping while you're using the machine.

Meanwhile, keep doing the day/evening machine use. The value lies in doing this regularly. Setting up the machine outside your bedroom is important, as is doing something distracting (reading, TV, devices).

You're sleep deprived now, and we all know how that affects mood. As you start getting some more and better sleep, I suspect you'll feel more hopeful. Keep on keepin' on during this tough time.

Miss Emerita wrote: ↑

Tue Jul 02, 2024 11:49 am

.Keep on keepin' on during this tough time.

Thank you. I am going to keep trying.

Last night was interesting. I was pretty congested so I woke up to realize I had taken the mask off. I tried putting it back on but was really struggling to breathe through my nose. So I turned up the humidity by one(to 5). I fall asleep again but wake up breathing out of my mouth. And the humidity had caused the tube to make a gurgling type sound so I couldn't get back to sleep after that.

One positive through this has been that my sinuses have been more clear than ever so this is frustrating. HOWEVER, I did manage to fall asleep with the mask on twice so I'm considering that a win.

Iancdub88 wrote: ↑

Wed Jul 03, 2024 6:57 am

Miss Emerita wrote: ↑

Tue Jul 02, 2024 11:49 am

.Keep on keepin' on during this tough time.

Thank you. I am going to keep trying.

You will get there. I'm sorry that you're having a rough time, but I do believe that you will stick with it and work out the kinks and get there.

Last night was interesting. I was pretty congested so I woke up to realize I had taken the mask off. I tried putting it back on but was really struggling to breathe through my nose. So I turned up the humidity by one(to 5). I fall asleep again but wake up breathing out of my mouth. And the humidity had caused the tube to make a gurgling type sound so I couldn't get back to sleep after that.

One positive through this has been that my sinuses have been more clear than ever so this is frustrating. HOWEVER, I did manage to fall asleep with the mask on twice so I'm considering that a win.

Several comments:

1) Yes, it's a win that you've now been able to fall asleep with the mask on twice. That's real progress!

2) Lots of newbies wake up and realize they took the mask off at some point and don't remember taking the mask off. You did the right thing by putting the mask back on before trying to get back to sleep.

3) Nasal congestion is a problem for a lot of people. Many (including myself) do find that the CPAP seems to help with the nasal congestion, but at the same time really bad nasal congestion seems to make it harder to use the machine. As you've noticed, one fix is turning up the humidity, but that can lead to rainout---i.e. condensation in the tube that causes the gurgling noise you heard last night. (More on this in a bit.)

Another thing you can do for the nasal congestion problem is to get serious about nasal hygiene. What I mean by that is figuring out what kinds of things work for you to reduce the nasal congestion in the first place. As a general rule, nasal decongestant sprays are not a good idea: After using them for about 3 days, they can trigger "rebound" congestion that is worse than the original congestion was. For long term congestion, OTC antihistamines or nasal steroid sprays (generic Flonase) are a reasonable choice. For non-drug ways of dealing with nasal congestion, saline nasal sprays and the use of a neti-pot or a nasal rinse system (like the NeilMed Sinus Rinse can work wonders. Obviously, it's ok to combine a neti pot or nasal rinse system with antihistamines or flonase if you need to.

4) The gurgling you were hearing is a sign of a problem with rain-out/condensation. Basically when the air inside the CPAP hose (or mask) becomes super saturated with water vapor and then becomes just a bit too cold, you get condensation in the hose. When you get enough condensation, the condensed liquid water runs downhill to the lowest point. In your case, the lowest point was some kind of dip in the hose between your mask and the hose connection to the machine. The gurgling is caused by the constant air movement over the condensed water that has accumulated at the lowest point in the hose. And yes, it can be very annoying.

When you've got a gurgling hose, the easiest (temporary) fix is to lift the hose up where the lowest point on the hose is its connection to the machine. That will cause the condensed water to flow back into the machine and it should end the gurgling sound.

Longer term solutions to the gurgling hose include turning the humidifier back down or turning the hose temperature up (if you are using a heated hose.) Of course this means experimenting to find a humidifier/hose temperature combo that your particular nose likes. Sometimes that can be difficult. My own nose likes lots of humidity but little or no heat. (I often use an unheated hose.) So I put a hose cozy on the hose and run the hose next to my body under the covers. That usually prevents rain-out issues from happening. But when I do wake up to the gurgling sound, the trick of lifting the hose to allow the water to run back into the humidity tank works well enough for me to get back to sleep. And I seldom have to do it more than once in a given night.

robysue1 wrote: ↑

Wed Jul 03, 2024 8:10 am

For long term congestion, OTC antihistamines or nasal steroid sprays (generic Flonase) are a reasonable choice.

Funny you should mention this. I have been on generic Flonase for years but since I had been feeling so much better congestion wise, I stopped taking it the past few days. I decided to take it again this morning and will keep up with it.

I think the congestion is also being made worse from my AC being turned down too cold. I tend to run hot so with the addition of the heated hose and a mask on my face, I've been getting some serious body heat. I think the room being colder could also explain the rain out issues if the AC is making the tube slightly colder. I think my best course of action is to turn the AC to a more mid-temperature and maybe add an oscillating fan to compensate.

Iancdub88 wrote: ↑

Wed Jul 03, 2024 8:26 am

I think the congestion is also being made worse from my AC being turned down too cold. I tend to run hot so with the addition of the heated hose and a mask on my face, I've been getting some serious body heat.

What's your heated hose set to? You might want to turn it down so that you don't need to have the AC set so cold.

I think the room being colder could also explain the rain out issues if the AC is making the tube slightly colder.

Colder room temps definitely can lead to more rainout. In the winter, hubby and I keep the night time temp around 60F. That's about the only time we ever use a heated hose, and even then, we tend to keep it set as a very minimal temperature---I think 64F is about the lowest hose setting.

It's worth noting: If your hose temperature is lower than the room temperature, the heated hose is not going to heat anything inside the tube.

I think my best course of action is to turn the AC to a more mid-temperature and maybe add an oscillating fan to compensate.

The oscillating fan should help. We used that for years before finally having a ceiling fan installed right over our bed.

robysue1 wrote: ↑

Wed Jul 03, 2024 8:43 am

What's your heated hose set to? You might want to turn it down so that you don't need to have the AC set so cold.

Hose is set to 70F. The AC is a window unit so it's not totally accurate but I had it turned down to 61F last night so I don't think it's the fault of the hose in this case.