UARS, Sleepwalking and CPAP problems

[mortyeriksen]

Hi Everyone.

I'm new to this forum and hope to get some input that will help my treatment.

I'm 36 years old (181 cm and normal weight) and I have been walking in my sleep and experienced sleep terrors in 22 years. Every night the first 3-4 hours of my sleep. A couple of years ago I started to experience extreme fatigue, vision problems, and I have at problems with IBS, fibromyalgi, TMJ type of symptoms the last 12 years.

6 years ago I took a PSG and several other test. The sleep doctor found that I have reduced activity in the part of the brain that controls sleep (front). He put me on Anafranil 25mg (micro dose) and my problems instantly disappared. In a few weeks I had to raise the dose to get the same effects and after using 75mg for a year I didn't like the side effects and stopped. The doctor told me that the Anafranil mixed up my sleep patterns. Making me move more between stages.

Early last year I did another PSG and the sleep doctor wrote in the test result that my problem might be UARS. Accordning to the flatting chart my total sleep of 9 hours had 10% where my breaths where flat, 30% below average, 30% average and 30% good. I live in Scandinavia so there's hard to get hold of anything but snoring doctors, but I managed to get my ENT to sign me up for a CPAP trial. I got my CPAP in november last year. It's a Remstar M Series Autopap. Configured with autopap, A flex 3 and 4-15 pressure. I use the comfortline 2 and nose coushion.

I instantly felt better with the CPAP and my sleep walking almost went away, but not 100%. I had a couple of perfect nights and It seemed like I had a good week and a bad week. With my pressure changing from 5,2 to 6,7 (up and down in about two weeks). I seem to remove my mask several times in the bad weeks. Feeling shoked.

A month later I got a cold and my nose was stuffy for a couple of months. I signed up to open the nose my reducing the nose mussels. This gave an infection that I got rid of quickly. This is about 4 weeks ago. The problem now is that I can't get the same good CPAP effect. I'm back to being very tierd, body aching, taking off the mask several times a night and sleep walking. The machine doesn't seem to work that well with my new and more open nose.

I have learned that my sleep walking stops when I get rested, that's why the CPAP worked well. I did some trials getting unrestet and fixing it again. I had full control for a while.

What's happening. Is it allergy season? New and open nose? or anything else? Anyone with similar problems?

Any ideas how I can get the CPAP working even better and why I'm having this hard time getting rested and out of the sleepwalking.

Thanks in advance.

Regards,
Morty

[Julie]

Hi, well a simple guess could be that your humidifier is set too high. It can often cause problems like congestion, rainout, and feeling like you have allergies, so try turning it down - it's not 'therapy' after all, just a help out. Another common problem is having the Cpap air get lost when your mouth opens once you're sleeping, so a lot of us end up using full face masks instead of nasal ones, and feel much better that way. You can test it out by taping (do a search here if you're not familiar with it) for 1-2 nights to see how it goes, and if it helps, then look into a new FF mask like Quattro, Ultra Mirage or Hybrid.

[SuperGeeky]

Morty, welcome to the Forum!! Were glad your here

Fill in your profile with your equipment, mask, anything else and stay around a while....

Good wiki on UARS

wiki/index.php/Upper_Airway_Resistance_Syndrome

I'm interested on why your on CPAP rather than BiPAP?? Breathing comfortably is important, minimizing arousals and more importantly preventing you from ripping your mask off...

Do you have a Data enabled machine?? Perhaps an Apnea waking you up??

Just some questions to get started....

take care,

SG

[sleepmba]

Hmmmm...sounds like you might need a pressure change or maybe a different mask. With the change in your nose, you may need to change the mask or pressure.

Check out my blog for some info...maybe you will find it useful
http://www.sleepandcpap.blogspot.com
Please feel free to suggest a new topic

[mortyeriksen]

Hi Julie. I actually don't use a humidifier. Should I? I use a humidifier in the room at winter, but nothing now.

Thanks for the tip about air get lost. This might be a problem. I will do a search for taping.

Morty

Hi, well a simple guess could be that your humidifier is set too high. It can often cause problems like congestion, rainout, and feeling like you have allergies, so try turning it down - it's not 'therapy' after all, just a help out. Another common problem is having the Cpap air get lost when your mouth opens once you're sleeping, so a lot of us end up using full face masks instead of nasal ones, and feel much better that way. You can test it out by taping (do a search)

[mortyeriksen]

Hi! I was also thinking apnea. I sometimes wake up with full airblow. That's probably an apnea, but it shouldn't happen. The only data I get from the machine is AHI index (4,5) and leaks (around 25). I get a full read out by visiting the hospital. The chart looks ok, but I had about 37% leak when I checked last time and they said is should be below 30% (or something. I don't quite remember).

Is bipap more used with UARS?

Thanks for the wiki tip!

Regards,
Morty

Morty, welcome to the Forum!! Were glad your here

Fill in your profile with your equipment, mask, anything else and stay around a while....

Good wiki on UARS

wiki/index.php/Upper_Airway_Resistance_Syndrome

I'm interested on why your on CPAP rather than BiPAP?? Breathing comfortably is important, minimizing arousals and more importantly preventing you from ripping your mask off...

Do you have a Data enabled machine?? Perhaps an Apnea waking you up??

Just some questions to get started....

take care,

SG

[mortyeriksen]

The pressure is auto from 5 to 14, but maybe the machine is not responding right to my uars. I will try taping to se if it's my mouth. It might help

Hmmmm...sounds like you might need a pressure change or maybe a different mask. With the change in your nose, you may need to change the mask or pressure.

Check out my blog for some info...maybe you will find it useful
http://www.sleepandcpap.blogspot.com
Please feel free to suggest a new topic

[mortyeriksen]

My PSG show a flow limitation of 40. Is this number high or is it low? I'm not sure what it means, but I think it's the number for breath below threshold.

Morty

[sleepmba]

I recommend trying out your humidifier again. If it is heated, start at setting 2 or 3. Let us know how it goes.

[manas]

For the allergies, my doctor told me to try the following:

a) Nasal Rinse 2x daily
b) Flonase 20 mins after rinse, 4hrs before sleeping

I have been doing Flonase in the morning, but have religiously done my nasal rinse last 3 weeks, and my nose does feel a lot clearer.

[mortyeriksen]

I actually do the same. I have been doing the Nasal Rinse 2x daily since last summer. Using a nasal horn running salt water through. I use Avamys a steroid spray (probably similar to Flonase), but not 4hrs before sleeping. Maybe just 1 hour. I will try using it earlier.

I got an infection after I did my "nose job" and it might look like it's back. It's that or heavy allergy... Might of course help to stuff my nose and loose CPAP effect.

Morty

For the allergies, my doctor told me to try the following:

a) Nasal Rinse 2x daily
b) Flonase 20 mins after rinse, 4hrs before sleeping

I have been doing Flonase in the morning, but have religiously done my nasal rinse last 3 weeks, and my nose does feel a lot clearer.

[SuperGeeky]

Morty said:

Is bipap more used with UARS?

Another wiki:

wiki/index.php/BiPAP

Bilevel machines or auto bilevels are prescribed when the patient can’t tolerate a standard CPAP or APAP machine, needs a very high pressure, has central apneas, needs extra exhalation relief, has UARS or flow limitations not corrected by CPAP or APAP, or has other medical conditions such as some heart or respiratory conditions.

Morty, BiPap might make you more comfortable and the humidifier can add comfort of breathing in colder drier climates.....

Take care,

SG

[mortyeriksen]

Thanks. I will call them and get a humidifier right away. I think it's more work to get the bipap, so I have to test this one first. It will probably help my nasal congestion...

Morty said:

Is bipap more used with UARS?

Another wiki:

wiki/index.php/BiPAP

Bilevel machines or auto bilevels are prescribed when the patient can’t tolerate a standard CPAP or APAP machine, needs a very high pressure, has central apneas, needs extra exhalation relief, has UARS or flow limitations not corrected by CPAP or APAP, or has other medical conditions such as some heart or respiratory conditions.

Morty, BiPap might make you more comfortable and the humidifier can add comfort of breathing in colder drier climates.....

Take care,

SG

[SleepingUgly]

He put me on Anafranil 25mg (micro dose) and my problems instantly disappared.

The sleep walking or the nightmares? I presume the latter, at least.

What's happening. Is it allergy season? New and open nose? or anything else? Anyone with similar problems?

I can't answer because I don't understand the part about your new and open nose.

Are you on any medications?

[/quote]

[mortyeriksen]

He put me on Anafranil 25mg (micro dose) and my problems instantly disappared.

The sleep walking or the nightmares? I presume the latter, at least.

What's happening. Is it allergy season? New and open nose? or anything else? Anyone with similar problems?

I can't answer because I don't understand the part about your new and open nose.

Are you on any medications?

Not nightmares. Night terrors. The sleep doc found out that the center in my brain controlling sleep has low activity. Anafranil actually makes you switch between stages while you sleep resulting in very little time in each stage, but feeling very rested anyway. This removed sleep walking, night terrors (deep sleep + awake at the same time with high pulse) and all body ache. The switching occures for about a month, and I had perfect sleep for a month before I had to increase the dose. Side effects are bad, that's why I stopped.

I think the sleep stage switching removed my UARS, but who knows. I didn't do a sleep study when using them. The CPAP gave me almost the same effect before I did the nose job. Rest is the best cure for my sleep problem and this is what I don't get with the darn UARS.

About the nose. I was wondering if a more open nose will alter my requirements regarding a CPAP. Pressure, A flex etc.

Medications: Allergy pills, Flutide for astma prevention and Avamys allergy nose spray.

Morty