I would like some help dealing with my Sleep Apnea.   I can't use a CPAP so is there any hope for me?  I'm not sure which information is helpful so I'm going to include everything that I can think of.  I'm sorry if it is too long.



My mother says that I have had Sleep Apnea since birth.  The doctors ignored her when she told the doctors about it so she quit mentioning it.  I have always been a very loud snorer.  I have always been tired during the day and even as a child I would fall asleep during class no matter how many hours of sleep I had and how much I wanted to stay awake.  

When I was 22 years old (1993) I went to a sleep study and was diagnosed with Sleep Apnea and some long name that meant unexplained sleepiness.  I had my HUGE tonsils and adenoids removed.  This helped some but another sleep study showed that I still had apnea.  

I bought a CPAP machine (it cost me almost a month's salary).  I had a terrible time with it.  It was uncomfortable, it hurt my sinuses, and I usually took it off in the middle of the night.  It really didn't matter because within 2 weeks of buying it I had developed a bad sinus infection.  I went to the doctor over and over trying to fight the sinus infection.  I battled the infection for about 18 months until I finally agreed to have surgery.  That surgery was supposed to make everything better so I could use the CPAP again (and not be in so much pain).

After the packing and everything was removed my sinuses didn't get better.  I didn't have the infection any more.   I just couldn't breath through my nose so I couldn't use the CPAP.  The ENT said I had severe allergies but all allergy tests came up negative.  Then I developed Asthma.  I followed all of the doctors orders but it didn't get better.  

After many emergency room visits for my asthma I figured out I was now allergic to Aspirin, Ibuprophen, and similar drugs (NSAID's).  That information helped me figure out that what I now have is called Samters Triad or Aspirin Triad.  With that information I went back to the ENT.  I had hoped knowing what was wrong with my sinuses would help fix it.

Since then I have been on many different meds and a few surgeries to remove polyps.  While it helps control some of the pain and symptoms it does not fix my sinuses enough to allow me to use the CPAP.  Each surgery only gives me back my sense of smell for 1 day.  

I gave up about a year ago and gave away my CPAP.  I know it will never work for me.     

I even had one doctor tell me that my CPAP probably caused my chronic sinus problems.  I have no idea if that is true or not.  At this point that doesn't really matter.  I just want to be able to sleep through the night.  Not only am I waking up from the apnea, I am also now waking up to blow my nose.

I have a terrible time staying awake during the day.  I hate driving because it's really not safe.  I fall asleep driving, during meetings, classes, conversations, and everything else, no matter how much I want to stay awake.  I have even fallen asleep while walking.  Many times I just carry something sharp to poke my hand or leg to stay awake.  Pain helps but it doesn't keep me awake for too long.  Eating also helps me stay awake but I can't really do that during business meetings.

I have missed many days of work because I was too afraid to drive.  Even when I go to work I still have problems because my work takes concentration and sometimes I'm just too tired to concentrate.  

Is there any hope for me?  Will I ever have a day where I'm not sleepy during the day?

I read that if you have a sinus infection you can't get rid of, you should ask your doctor to consider that it may be a fungal infection. Antibiotics make fungal infections worse.
Have you been to an ear, nose and throat specialist recently? There have been new developements. Anyway, I saved the following from an earlier post, so that I could look it up. I looked it up, and it seems to have been a real study, although not with a largetest group. I'm planning to buy one anyway:[/b]

[b]~~>Source: BMJ-British Medical Journal
Date: December 24, 2005
 Didgeridoo Playing Improves Your Sleep
Regular didgeridoo playing reduces snoring and daytime sleepiness, finds a study published online by the British Medical Journal.

Snoring? Play Didgeridoo

Snoring and obstructive sleep apnea syndrome are common sleep disorders caused by the collapse of the upper airways. Continuous positive airway pressure therapy is effective, but is not suitable for many patients.

Reports of didgeridoo players experiencing reduced daytime sleepiness and snoring after practicing, led experts in Switzerland to test the theory that training of the upper airways by didgeridoo playing can improve these disorders.

They identified 25 patients with moderate obstructive sleep apnea syndrome and who complained about snoring. Patients were randomly allocated to an intervention group (didgeridoo lessons and daily practice at home for four months) or a control group (remained on a waiting list for lessons).

Compared with the control group, daytime sleepiness and apnea scores improved significantly in the didgeridoo group. Partners of patients in the didgeridoo group also reported much less sleep disturbance.

Although overall quality of sleep did not differ significantly between groups, a combined analysis of sleep related measures showed a moderate to large effect of didgeridoo playing.

The authors conclude that regular training of the upper airways by didgeridoo playing reduces daytime sleepiness and snoring in people with moderate obstructive sleep apnoea syndrome and also improves the sleep quality of partners.

"Larger trials are needed to confirm our preliminary findings, but our results may give hope to the many people with moderate obstructive sleep apnea syndrome and snoring, as well as to their partners," they say.





Note: This story has been adapted from a news release issued by BMJ-British Medical Journal.

The British Medical Journal, Science Daily, ABC News, Discovery and Men's Health magazines, as well as the Apnea Support Forum all tout the breathing and health benefits that playing the didgeridoo offers to those suffering with sleep apnea and snoring. Many were kind enough to mention . The original article was on the Reuters news service, and here is how it read:

Reuters, LONDON: Researchers have discovered that playing the didgeridoo (an ancient wind instrument of the Australian Aborigines) reduces snoring and daytime sleepiness for those with obstructive sleep apnea. The condition occurs when the airway is obstructed during sleep, and results in the sufferer gasping for breath, snoring loudly, snorting and constantly waking up. It carries an increased risk of stroke, heart attacks and high blood pressure. Swiss experts, after hearing anecdotal reports of how playing the didgeridoo reduced snoring, decided to study how it could be applied clinically. They studied 25 patients with moderate obstructive sleep apnea and two with a snoring problem. Half the group were given didgeridoo lessons and asked to practice playing daily at home for four months. The other half were told they were on a waiting list for lessons.

Daytime sleepiness and apnea scores improved significantly in the didgeridoo group, the British Medical Journal reported. Partners of patients playing the didgeridoo also reported much less sleep disturbance. "Our results may give hope to the many people with moderate obstructive sleep apnea syndrome and snoring, as well as to their partners," said the researchers. Playing the didgeridoo requires a controlled breathing pattern, and researchers believe it helps to train the upper airways to combat the symptoms of obstructive sleep apnea.
  
What is a Didgeridoo?
The didgeridoo is a wind instrument traditionally made from the trunk of termite hollowed eucalyptus trees from Australia (like the one pictured below). They average about 4 to 5 feet in length, and are played by vibrating your lips into the top end of the instrument which creates a deep humming drone. The didgeridoo is a rhythm instrument, so you play "beats" instead of melodic songs. This makes the instrument very intuitive to learn to play, so you don't need to know music or take special lessons to enjoy playing the didgeridoo straight away. It also does not require any "power" from your lungs like many other wind instruments. The didgeridoo is played with lips, voice, and tongue movement, not lungs. Play it loud or quiet or fast or slow... Just put your lips together and blow!
Buy a Great Didgeridoo and Learn to Play Here  
Buying a didgeridoo for a beginner
Straight away, demand quality! Think about it this way... if you wanted to get serious about learning to play drums, would you shop for one at a toy store because they're cheaper than the music shop? How much joy and encouragement would you get from a toy drum? Same with a didgeridoo. We know you can find cheaper didgeridoos elsewhere, but you get what you pay for, mate. You won't have to stretch your budget that far to get superior quality in sound, playability, and artwork.

When selecting a didgeridoo for a novice there are two things to keep in mind: pitch and portability. While the word pitch is the correct term for the soundwave or drone of a didgeridoo, the word key has become the most common expression among didgeridoo players. Both words mean the same thing. A didgeridoo has only one pitch, so you play rhythm rather than melody. The common pitch range for didgeridoos is from high A to low A. Beginners should pick a didgeridoo somewhere in the middle of this scale, namely, C, C#, D or D#.

As far as size goes, buying a large didgeridoo because it's within your budget may not be a bargain at all. In fact, didgeridoos over 5 feet long and/or heavy didgeridoos over 8 lbs could actually discourage a beginner from practicing. The pitch may be too high or too low, and if it's very heavy, the instrument will be left behind on camping trips, a visit to friends, or a jam session with other musicians. The size of the player is much less important, as even a six year old tin lid (Aussie for kid) can pick up the basic sounds straight away.

Yes I have been to an Ears, Nose, Throat doctor many times.  I haven't had a sinus infection in a long time.  My sinus problems are now different.

Thank you for the information on the Didgeridoo.  That looks interesting.  I'm willing to try almost anything.


When I really relax I can feel my throat close up even if I'm sitting straight up.  Is that common?

I'm sorry this is so rough for you.  I just put the post "Not breathing during the day" at the top of the forum to answer your question about how common that is.

Thank you.  I did read that thread.  It's a little different.  I don't forget to breath.  It's just if I just concentrate on relaxing every muscle in my body then my throat also closes.  I'm guessing this is what happens when I'm asleep.  I had just wondered if anyone else has noticed the same type of thing.

By the way, do you have insomnia too, or are you in a different country?

No, I have no problem falling asleep.  I can fall asleep pretty much any time.  I just haven't gone to bed yet.  I'm curious to see comments from other people.

I'm on the west coast PST.  These days I usually stay up till 1 or 2 am and then sleep till 11 or 12.  I've had more normal schedules in the past.

Did you try a full face mask with the CPAP?  Full face masks are said to work well for 'mouth breathers'.

Have you been using the nasal rinse or Sinus Rinse.  Some doctors forget to tell you about that. I have had sinus problems for 32 yrs and had so many surgeries but no one until this yr prescribed this for me.

Yes I do use a Sinus Rinse twice a day.  

I wasn't aware there was a mask available for mouth breathers.  Years ago when I asked about it I was told that all of the masks went over your nose.  Thank you.  I will look into that.

Just another thought....

Is there a mask that just covers your mouth? I have to wake up about 3-4 times a night to blow my nose.  I think that would be very difficult if I had a full mask on.

Yes, there is at least one mask that just covers your mouth;  you apparently need to plug your nose to use it.  http://www.fphcare.com/osa/Oracle452.asp

Hi StuffyHead!,

I have the same kind of sinus issues as you.  I know you said that you do a sinus rinse twice a day, but I want to make sure that you really hose them out.  Check out thes sinus irrigation tips:

Sinus Irrigation How To

As noted in the Digeridoo study:

"Larger trials are needed to confirm our preliminary findings, but our results may give hope to the many people with moderate obstructive sleep apnea syndrome and snoring, as well as to their partners,"

25 people is a very small clinical trial and the results need to be confirmed.  If you have severe apnea, (>30 episodes/hour) then the Digeridoo isn't an option.  It sounds as though you need a therapy which will certainly work and that, of course, is a CPAP.

My surgeon told me that my sinus cavities have been so extensively roto-routed that it is all air up there   .  I an curious as to why you were not able to breath through your nose after surgery?  Exactly what sinus surgery did you have?  Did you have the nasal passages enlarged by removing bone, as I did?  I also had polyps removed and my turbinates reduced, but polyps and turbinates can, and have for me, increased over time so that my nose is harder to breath through than immediately post surgery.

I take prescription Zytec (other options are Claritin, Allegra, etc.) and a topical steriodal nasal spray, Nasonex (other options, Rhinocort, Flonase, etc.).  If you do not already do this, then I would highly recommend it.  My doctor also suggested that I start taking over-the-counter Mucinex, which is a mucous thinner, to help my sinuses drain.

We have a forum member who loves her Oracle mask (the link posted above).  So you might check that out too.  I use a FF mask.  If you have to wake up to blow your nose anyway, then you might try a FF mask.  It isn't that big a deal to pull it off, blow your nose, then put it back on.

Vicki


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Being defeated is often a temporary condition. Giving up is what makes it permanent.
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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Vicki wrote:

Hi StuffyHead!,
... My surgeon told me that my sinus cavities have been so extensively roto-routed that it is all air up there   .  I an curious as to why you were not able to breath through your nose after surgery?  Exactly what sinus surgery did you have?  Did you have the nasal passages enlarged by removing bone, as I did?  I also had polyps removed and my turbinates reduced, but polyps and turbinates can, and have for me, increased over time so that my nose is harder to breath through than immediately post surgery.

I take prescription Zytec (other options are Claritin, Allegra, etc.) and a topical steriodal nasal spray, Nasonex (other options, Rhinocort, Flonase, etc.).  If you do not already do this, then I would highly recommend it.  My doctor also suggested that I start taking over-the-counter Mucinex, which is a mucous thinner, to help my sinuses drain...
Vicki

I've had my turbinates reduced, deviated septum fixed, sinus opening widened, polyps removed, and pretty much a whole roto-rootering.  Each time the doctor said that I would get my sense of smell back, be able to breath clear, and not snore.  The swelling would be bad at first because of the surgery and then it would reduce in a day or two.  As the swelling from the surgery reduced then my sinus problems would start flaring up. Then the swelling and mucus would be back.  I would be able to breath through my nose some but not fully.  

I use Nasonex.  I would like to try Zytec.  I've heard mixed reviews on it.  Maybe a box of tissues would last longer than a day at my house.

I use Nasonex® and Zyrtec®. They have helped my sinuses a lot.


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