Need support/information - Haing a tough time with CPAP

I am in a catch-22. One of the symtoms of my bipolar disorder is difficulty sleeping. Sleep is the number one thing that I need to protect at all costs in order to remain stable. I have recently changed my sleep meds (Seroquel 50 mg + Klonopin) because the Seroquel has a nasty side effect of causing late night eating. My psychiatrist recommended that i discontinue Seroquel and try an old school sedative called Chloral-Hydrate. After several weeks of debating whether or not to try the Chloral-Hydrate, I started on a lowest dose and discontinued the Seroquel. I have difficulty falling asleep and staying asleep. I get frustrated and feel discomfort with my Swift FX - although it has been the most comfortable of any mask I have tried so far. I feel so sleep deprived and uttlerly miserable. I see my psychiatrist on Dec. 1 and will probably end up trying doxepin which is an older tricyclic antidepressant which has been reformulated as Silenor.

I need some help with respect to getting comfortable with CPAP. I have been 100% compliant since I started on October 27, 2010, but I am getting to the point where I am getting anxious about going to bed. I am working on establishing good sleep hygeine, which sometimes I am successful and sometimes I fall back to old habits.

My Swift FX is the most tolerable interface that i have tried so far, but I am continually aware o pain and discomfort under my tip of my nose and my nostrils. I just can't get relaxed and comfortable and all I am aware of is the nasal pillows. I just don't know what to do anymore. I actually prefer a nasal mask, but cannot find one that does not dig into the skin across the bridge of my nose. I feel like I am between a rock and a hard place - if I stop CPAP, I may cause serious bodily injury and if I continue CPAP I feel like I will never sleep again.

Friends, I need some help. I am caught up in a viscious cycle. I can't fall asleep and when I finally do, I wake up very early feeling frustrated, anxious, and full of doubt that I will ever succeed. Part of the problem is due to the switch in sleep meds which don't work and the other problem is because my nose feels so painful and I need a hose management system which I am in the process of ordering. Help! My bed is no longer the welcoming, comfortable, safe-feeling place it used to be. Thank you for any and all insights and information. Laurie

Laurie, I just popped in here for a quick read and saw your post. I am very new at this too - just this month - so I don't have the wisdom of many others here. I can, however, offer you encouragement and commiseration. I understand exactly what you mean about longing for the time when the thought of bed was so welcoming. I know intermittent/short sleep cycles can be very frustrating but I also realize you (and I) are both new at this and that it takes time. If you haven't already, check out some of the great posts for newbies that describe the stages of assimilating CPAP into your life - I found them very encouraging and insightful. Our bodies have been under assault for some time and it's going to take a while to get comfortable with the new normal and start feeling good again. You're not alone. Most of all, try to realize that each night CPAP is working, if only by inches, to help heal your sleep deficit.

Sending you a big hug!
Marla

Wishing you all the best in your need to balance the meds for sleep and bipolar with getting used to the CPAP.

You specifically write:

My Swift FX is the most tolerable interface that i have tried so far, but I am continually aware o pain and discomfort under my tip of my nose and my nostrils. I just can't get relaxed and comfortable and all I am aware of is the nasal pillows. I just don't know what to do anymore. I actually prefer a nasal mask, but cannot find one that does not dig into the skin across the bridge of my nose.

You might want to try padding a nasal mask with a liner like Remzzz or one of the padding solutions sold by Pad-a-cheek (padacheek.com. If you decide to stick with the FX, you might try going UP one size in the pillows---the pain and discomfort you are currently feeling with your pillows might be caused by the pillows poking too far into your nostrils. In that case, the solution is a LARGER pillow, not a smaller one.

You might also try Lansihoh lanolin or Ayr Gel or KY Jelly to help protect the tip of your nose and the inside of your nostrils at night. And you might also ask Karen at Pad-a-cheek about getting a barrel cozy for the Swift FX. [She makes them, but they're not yet on the Pad-a-cheek web site.] The barrel cozy will keep the bottom silicone part of the pillows from directly touching your upper lip and tip of your nose: The only place where the silicone will touch you will literally be the place where the pillows are sealing against your nostrils.

Again, good luck in managing all you've got going on.

Take a break - a one or 2 night break -- from the Swift -- it may be causing irritation the need time to heal.
Be patient in setting up the hose guidance system, you have to find the angles and tensions that are right for you, and that may take time.
Which pillow maks have you tried?

O.

Ask your Dr. about trying .5mg of Zanex and a 6mg of Silenor 1/2 hour b4 bed.
No side effects for me.

Good luck

Hang in there Laurie, this IS tough.

I try to set really small goals for myself. One baby step at a time. My ultimate goal was to be able to put the mask on and go to sleep, sleep all night, and wake refreshed. It took me a few months to get there. Each morning I identified the biggest issue I was having, and tackled that to try to increase my comfort. Sometimes it took a week or more to eliminate one little irritant. But I kept marching forward-- when I finally reached it, the reward was sweet.

The problem with the Swift FX is that you do have to kind of push it in to your upper lip and the tip of your nose for a seal. You might want to look at other masks to see if you can eliminate that irritant. The LT is nice that way, in that you can change the angles of the pillows easily, and if it's up against the tip of your nose, you can adjust it so it is not. Also, the headgear is more supportive of the pillows on the LT, so your face doesn't have to provide that support.

I forget which one, but one of the other brands of nasal masks has nasal pillows (it might be the mask with "nasal dilators") that can be set at two levels in the cradles, so that they can be pulled up higher and the cradle is far below the tip of your nose. Other nasal pillow masks come from over your head and may not put presure on the tip of your nose. See if your DME has samples you can try out.

SometimesI just feel irritated by the Swift FX for whatever reason. I trade masks for a night or two (I have an LT for backup). It seems to help, and I feel renewed comfort with the FX when I come back to it.

ozij wrote:Take a break - a one or 2 night break -- from the Swift -- it may be causing irritation the need time to heal.
Be patient in setting up the hose guidance system, you have to find the angles and tensions that are right for you, and that may take time.
Which pillow maks have you tried? O.

Currently in my possession is the Swift FX for Her - I started with xtra small pillows and went up in size to small. I have a loaner Comfortlite 2 with size small pillows. I only tried the Comfortlite 2 for about 10 minutes. I don't know if I do not have it adjusted properly, but when I rolled over onto my side (I am a side sleeper), I felt this very uncomfortable "lump". Maybe it was because I had the hose clipped in the "over the head" position?

I actually prefer a nasal mask and have tried the following: SoftGel szie Small and Medium - both sizes leave a very deep and painful indentation over the bridge of my nose and cause pain throughout the night. The most comfortable nasal mask I tried was the Easylife in size small. It did not cause discomfort throughout the night - but the indentation across the bridge of my nose was terrible. Perhaps, I could try the Easylife in size medium and use some padding that the OP recommended? What do you think? My DME is very accomodating.

You make a good point about letting my nose heal from the irritation. It is really sore and awful looking. I have been doggedly determined not to skip a night because I really want to be successful. (I stopped using CPAP in 2002 after 3 weeks because I had little knowledge and zero support).

As far as a hose management system, I was going to order the Pur-Sleep system which was recommended by an OP. Any feedback would be greatly appreciated. Thank you so very much for your help. Laurie

Phoenixpuppy wrote:Laurie, I just popped in here for a quick read and saw your post. I am very new at this too - just this month - so I don't have the wisdom of many others here. I can, however, offer you encouragement and commiseration. I understand exactly what you mean about longing for the time when the thought of bed was so welcoming. I know intermittent/short sleep cycles can be very frustrating but I also realize you (and I) are both new at this and that it takes time. If you haven't already, check out some of the great posts for newbies that describe the stages of assimilating CPAP into your life - I found them very encouraging and insightful. Our bodies have been under assault for some time and it's going to take a while to get comfortable with the new normal and start feeling good again. You're not alone. Most of all, try to realize that each night CPAP is working, if only by inches, to help heal your sleep deficit. Sending you a big hug!Marla

Hi Maria,
Thank you for taking the time to reach out and offer your support and encouragement. Your post made me realize that although I felt I have thoroughly researched CPAP to death, that knowledge can never replace actual experience. I have to remember that practical experience reinforces knowledge. I believe that the admission that I am a fledgling concerning CPAP helps me put things back into proper perspective. I am learning a new set of skills which will take time, patience, and support. Thank you for reminding me that I am not alone in my struggles and to go back and reread the newbie posts which I will definitely do! Hugs, Laurie

Guest wrote:Ask your Dr. about trying .5mg of Zanex and a 6mg of Silenor 1/2 hour b4 bed.
No side effects for me.Good luck

Hi,
I take Klonopin 2 mg. which is a longer-acting benzodiazepine than Xanax. I have been on it for years. I can't take Xanax because it causes me to have rebound anxiety due to its short half-life. But I most certainly can ask my doc to put me on either generic doxepin or the new timed-release version under the trade name Silenor. I will send a fax to my doctor's office right now. I am so pleased to hear that this combo is working well for you! I am optimistic about the doxepin/Silenor. Thanks for your input! Laurie

Laurie, I have had a lot of the problems you've had, including sores inside my nostrils and sores on the bridge of my nose. Have you tried the Activa LT nasal mask? A lot of people like it. My experience with it is somewhat limited, but so far no welts on the bridge of my nose. Admittedly, I haven't used it for a ton of days in a row, so I can't speak to whether it would cause sores after awhile.

If you're going to stick with nasal pillows, my advice is like Ozij's--take a short break to let your nostrils heal (assuming your apnea isn't so severe that this would be hazardous for your health). After that use Ayr Gel inside your nostrils, and you can try Lansinoh. The latter will also help with the seal.

I don't know much about the medications you are on and how sedating they are. Trazadone used to be the drug of choice to knock people out at night, but I don't know what's currently used, or what's best for you.

robysue wrote:You might want to try padding a nasal mask with a liner like Remzzz or one of the padding solutions sold by Pad-a-cheek (padacheek.com. If you decide to stick with the FX, you might try going UP one size in the pillows---the pain and discomfort you are currently feeling with your pillows might be caused by the pillows poking too far into your nostrils. In that case, the solution is a LARGER pillow, not a smaller one.

You might also try Lansihoh lanolin or Ayr Gel or KY Jelly to help protect the tip of your nose and the inside of your nostrils at night. And you might also ask Karen at Pad-a-cheek about getting a barrel cozy for the Swift FX. [She makes them, but they're not yet on the Pad-a-cheek web site.] The barrel cozy will keep the bottom silicone part of the pillows from directly touching your upper lip and tip of your nose: The only place where the silicone will touch you will literally be the place where the pillows are sealing against your nostrils.

Again, good luck in managing all you've got going on.

Hi robysue,

Yes, my CPAP has upset the applecart so to speak. Can I find Remzzz through Pad-a-Cheek? With respect to the FX I went from xtra small to small pillows. My nostrils are very small. I did not try the medium. Do you think I should try medium pillows? The biggest pain besides my nostrils is underneath my nose where the barrel rests. I could certainly get the barrel cozy which I will do so now. (I am writing a "shopping list" as I type this).

I am using Lanisoh and Ayr Gel which does help. Thanks, Laurie

Laurie,
I love the spirit you have on trying to make this work, because of that and the great support this forum has to offer I know you will succeed. Please keep at it.
I also prefer the nasal mask, maybe you should try some different brands of them there is bound to be one that you can use.

Check your PM's

Have you tried the Swift LT? I don't believe it touches the nose on my spouse. And I just found this interesting video on youtube. So it looks like it fits a little different for different noses. some noses it touches, some it doesn't. But nothing across the bridge of your nose.

http://www.youtube.com/watch?v=soZrYvQKOls 95% Fit Rate


http://www.youtube.com/watch?v=i7ljTAM9kUs Minimal Contact; Optimal Stability

Janknitz wrote:Hang in there Laurie, this IS tough.

I am hanging in! I am in this for the long haul. I have to realize that CPAP is not quite like figuring out how to partition my Mac and set up Windows or remove the partition if I decide I don't want Windows. Yes, computers present all sorts of tasty challenges that I really enjoy, but the challenges of CPAP are filled with so many variables that it boggles the mind. Plus, most times when one gets frustrated with a computer problem, you can simply walk away from it until inspiration occurs. Not so with CPAP - once you are hosed up and turn over to sleep and end up hearing the hiss of escaping air or as in my case, my nose begins to burn and throb - there really is no option to just turn the machine off and wait for inspiration. For me, the night becomes one of dread.

But it's daylight right now and I am going to take action and email my DME and request a loaner LT and an EasyLife Nasal Mask in Medium and size Medium pillows for my FX. I am going to order a barrel cozy for my FX, a Pur-Sleep hose management system and some Remzzz mask liner. i am going to send a fax ASAP to my doctor to get a new Rx for a new sleep medication which we discussed at my last visit. I have Lanisoh and Ayr on hand. Instead of ignoring the problems that I have at night and hoping they get better (magically!) I am going to actually do what I can to make things better. At the very least, I will be taking steps to hopefully find some improvement and keep tweaking things as they come up. Thanks JK for your usual words of wisdom! Laurie

Ms. L wrote:Check your PM's

Have you tried the Swift LT? I don't believe it touches the nose on my spouse. And I just found this interesting video on youtube. So it looks like it fits a little different for different noses. some noses it touches, some it doesn't. But nothing across the bridge of your nose.

http://www.youtube.com/watch?v=soZrYvQKOls 95% Fit Rate


http://www.youtube.com/watch?v=i7ljTAM9kUs Minimal Contact; Optimal Stability

Ms. L,

Thank you so much for the videos. They are great. I am definitely going to get a loaner LT today! I'll keep you posted. Laurie