Comment

Comment by sleepycarol on December 30, 2008 at 12:20pm

Melodie,

Try turning your humidifier DOWN. I know this seems backwards to what you should do -- but for many people the extra moisture in the air will significantly clog them up. I am one. When I first started treatment they told me to put the humidifier setting midways. I felt like I was clogging up and would feel like I was going to have an asthma attack. I tried turning it up and that only made matters worse. The lightbulb went off -- when there is high humidity in the air my asthma acts up -- if it is rainy out I am usually short of breath. Turning the humidifier down helped tremendously!! In fact I usually use my humidifier in pass over mode --meaning that the heat is turned off totally and the air blowing across the water picks up what it can. This summer I took my humidifier off completely and never missed it. Now that our heat is back on I have reattached the humidifier and have it set to just barely on.

Hopefully they can get your meds straightened out and that will help.

Comment by Melodie on December 23, 2008 at 7:19am

Hi Terrie,
Thanks for your input. My supplier also told me to increase the heat on the humidifier on my Bi-PAP Auto SV unit to give me more moisture, and also to get some "AYR" saline gel for the nose and especially for C-PAP and Bi-PAP users. I have done both of these things, but still am waking up all stuffy headed, but it does go away within an hour or so after waking up - so I really can't complain. And my not being able to sleep has nothing to do with my equipment - it is due to some changes in my medications and the docs are trying to figure out which specific meds are keeping me from sleeping. Last night I was up all night long AGAIN!!!!!!!!!!!!! So I slept Sunday night for about 6-7 hours, but Monday night (last night) I got NO SLEEP at all!!!!!!!!!! I do have to say that since getting my newest device, the Bi-PAP Auto SV, I have been sleeping much better until the Psychiatrist made some changes in my medications - so I am quite pleased with my sleep results with the Bi-PAP and was sleeping better than ever in my life.

Now it is just a matter of getting the meds situated so that I can start sleeping on a regular basis again!
I think this is just going to have to be something that the docs have to figure out with my many, many medications. One wrong mix and it can really mess you up with sleep and other things too.

Hey - I will give the K-Y jelly a try to see how it compares to the "AYR" saline gel for the nose. Thanks for your comments! I would never have thought of K-Y jelly! I really appreciate any help anyone can give.

Have a wonderful Christmas and an even better New Year in 2009! And may you continue to have great, restful sleep!
Melodie

Comment by Terrie on December 23, 2008 at 12:34am

I started using my CPAP just this past September. It has basically been a positive experience for me. I have been sleeping 7 to 8 hours a night since the very first night, something I haven't done for 10 years. It has made a remarkable difference. When I started sleeping with my CPAP machine I was suffering with mild seasonal allergies, they continued to plague me for weeks with severe congestion, unbelievable fits of sneezing and a constant runny nose. It got so bad that I was getting daily bloody noses. I had never had allergy symptoms this severe or this long past the first freeze of the year. I went to the doctor two different times to be treated for allergies, then my doctor suggested that I go a few nights without my machine to see if my problems were related to the machine rather than an unusual and prolonged allergy problem. Sure enough the next 3 days were remarkably symptom free. We knew that the mask was just severly drying out my nasal passages and had left them very inflamed. Well, I wasn't going to give up my CPAP. We called all around trying to see if anybody had similar problems using their machine. I finally spoke to a lady at my local supplier who gave me two suggestions. One, to increase the humidity on my machine and two, to coat my nostrils with KY jelly, using a Q-tip each night. Wow! It has been 5 days and I haven' t so much as sneezed much less have a bloody nose.
I haven't had a problem with a dry mouth, I have no problems sleeping and keeping my mouth closed, but I am hoping that my dry and stuffy nose problems are a thing of the past.

Hope you have as much luck with your problems.

Terrie

Comment by Melodie on December 22, 2008 at 5:55pm

Thanks again Mike! You have been very helpful and I WILL ask my doctor about the special ResMed Swift LT nasal pillows. My supplier has me alternating between the large and the medium nasal pillows. I don't know why.........I am a back sleeper and also sleep on a heating pad on low, due to some bad back problems, so I do not sleep on my side. Funny, at the sleep studies, they told me that I do not move during my sleep - not at ALL! The technicians said it was so weird that they even came into my room to be sure the machines were working right and that I was still alive because I literally do not move, not even an inch until I start waking up. They said I look like I am in a coffin or something and that most people move all over the place when sleeping. I had an idea that I didn't move much if any, because I always wake in the same exact position I go to sleep in.........LOLOL.

Again, thanks for your assistance and I will be posting again soon. I try to drink or sip on a cup of hot herbal caffeine-free tea before bedtime, and I am also on sleep medications. The hot herbal teas really help you to relax and are quite soothing.

Sleep well my friend!
Melodie

Comment by Mike on December 22, 2008 at 3:32pm

Hi Melodie,

About the nasal congestion, try a google search on "grossan." They make some fancy water pik nasal irrigation system that looks pretty cool. Probably better than the NeilMed Netipot, although I have no idea because I've never tried the nasal pik thing.

On your dry mouth, have you had your machine's data card read lately? The reason I ask is that it's very hard to know whether any air is leaking out of your mouth causing it to be dry --- it could be so minimal, you don't even notice it. But your machine's data will show it for sure if it's happening. Chin straps don't always work -- in fact a lot of people have trouble with them. I see you're wearing the nasal pillows --- those are super comfortable and non-intrusive -- I have used them myself. That said, I had to move off it because they're so easy to get leakage from. Trust me, I'd use them myself if they didn't leak so much. Especially if you sleep on your side at all, nasal pillows can become dislodged, even slightly, and leak. You should discuss another type of nasal pillow mask with your DME/doctor that might be tougher on leaks -- I know ResMed just came out with the Swift LT for her, which are nasal pillows that are supposed to be designed especially for women; perhaps they would work better for you.

About better sleep, there are so many things to learn. Do you smoke, drink or eat anything caffeinated before bedtime? If you do, don't. Also, you should avoid light immediately before bedtime -- especially blue ray light. There are special bulbs you can buy for nighttime. Also, computers and tv screens throw off a lot of light -- avoid these right before bedtime. There's so much more, that's just a start!

Mike

Comment by Melodie on December 22, 2008 at 3:14pm

Mike,
Thanks for your response! You are right, my pulmonologist DID say that I have something going on in my brain that is not telling me to breathe when I should and he said the Auto SV should help with that and it seems to be doing the trick. I had just forgotten exactly what all it was and someone had asked me. Thanks for reminding me of that.

#2 - dry mouth - I do NOT breathe through my mouth, but I do have a chin strap that I use to be sure I do not "mouth breathe". I have several other friends with C-PAP's and we all have the same problem with dry mouth and stuffy noses. I DO use the MeilMed Nasal Rinse morning and night, but still wake up very stuffy - but it usually clears up in about an hour after I have been up. I also have a "cool mist" humidifier in the bedroom and that helps during the winter too, I have even turned up the heat on my unit's humidifier as I was told to do by my supplier and the doc. So I just don't understand why I am sooo stuffy and dry in the mornings. I also use the "Ayr Nasal Gel" in my nose right before putting on my nose pillows mask and that helps until morning.

#3 - I think if I cut back on the Provigil to half a pill in the morning, and take only (1) of my anti-depressant instead of (2) - then maybe I can start sleeping again. It has just this last week that my psychiatrist had me add a 2nd pill of my antidepressant to my regimen, and I think that change along with the 200mg Provigil is keeping me awake. Even the sleep medication they gave me is not working this past week and I only slept maybe 1-2 nights out of 7! I have been absolutely miserable. I called the Psychiatrist's office this morning, but their answering machine says they are closed until January 5th - so that doesn't help me in that regard. I guess I will just cut back on the antidepressant and the Provigil and see what happens and then tell the docs when they re-open after Christmas and New Year's. I DO see my pulmonologist on December 31st, so I will mention all this to him at that time.

I am so glad that I found this site! And again, thank you for responding so quickly to me. I am also glad to know that there are some physicians on the site that will chime in to answer our questions.

I cannot use a full face mask or even a mask that covers just the nasal area, as I am very claustrophobic and had a panic attack when they tried to give me a mask in the beginning, that is why I use the nose pillows. They are fabulous! Also my supplier told me that 85% of their patients are now switching from masks to the nose pillows as they are not as intrusive as a regular mask.

Do you have any other suggestions to help with better sleep? I am always looking for ways to improve my overall sleep situation, as I rarely get more than 3-4 hours a night of sleep.

Thanks again,
Melodie (Mel) Aultman-Morris

Comment by Mike on December 22, 2008 at 1:58pm

Welcome, Melodie. I am not a doctor, and we do have some doctors on the forum who should definitely chime in if i mess up here, but here is my stab at a response:

1. a Bi-PAP Auto SV Unit is a totally different kind of machine than a CPAP. Most people who have Sleep Apnea only have "obstructive" sleep apnea, meaning that there's something physically blocking the airway, and cutting off the oxygen supply. For these folks, CPAP can be effective. Sounds like you have a more complex form of Sleep Apnea, where it's not just something physically "blocking" the airway -- your brain may not be giving your body the signal to breathe from time to time. That's called central apnea. For that, the Auto SV Bi-Pap is often prescribed. It operates under a special algorithm set up to deliver you air as soon as your breathing becomes irregular.

2. the dry mouth is something we often see with people who are opening their mouth at night -- the air leaks out of the mouth, and causes a really dry sensation in the mouth. If you're doing this, you might look into a chin strap or a full face mask, which covers the nose AND mouth. About the stuffy nose, I'm not sure, but you might try some nasal irrigation systems, like the NeilMed NetiPot, which is available at Walgreens and other drug stores.
3. You should talk to your doctor about the interaction of your sleep apnea and narcolepsy. Maybe he can adjust the prescription so that it doesn't have the same kind of alerting effect at night.

With all this, though, get it double checked by your doctor.

Mike