Replies to This Discussion

Permalink Reply by Shoshana on March 23, 2011 at 4:17pm

Thank you so much, John! I am going to print your letter out and take it to my pulmonary doctor. This is a big learning curve for me, as it is for all of us when we are just starting out. According to the computer download of my machine, I do have some short periods of mouth leak. They don't seem to think that's a huge issue. But you are saying that it could culminate in exactly the type of problems I am having.

 

One problem with the full face mask is the fact that I feel so claustrophobic with it on. Is this normal, and do people eventually get over this?

 

As an aside, I am single, sleep alone every night, and hate to think of having to use this device if I should ever get into a significant relationship again. Not too romantic...especially for women.  But that's just my vanity talking. I know this is something that will lengthen my life and improve my overall health. I am just curious how other singles handle using the CPAP in relationships.

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Permalink Reply by Shoshana on March 23, 2011 at 4:21pm

Thanks, Mary!! I just happened on to this website. Once here, I thought I had struck gold! The window for the MMA surgery is only good until 60 years of age. I have exactly one year left to go before that. So I need to know fast what is and isn't working for me. And they say it will change my appearance, so that makes me a little nervous. Plus there is no guarantee it will work.

Susie
Mary Z said:

Shoshana, rant away.  You do have lot going on. Good Luck, I hope something starts to work.  The  MMA surgery is supposed to be pretty good.  Hang in there.  Wish I had some good suggestions.

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Permalink Reply by Chris H on March 23, 2011 at 4:27pm

Hi Shoshana, Would you have a problem with someone whom had diabetes and needed to inject insulin or an artificial limb ? If whom ever has a problem with a LIFE SAVING device than they are not worth knowing. Good Sleep,Chris

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Permalink Reply by Chris H on March 23, 2011 at 5:08pm

Mike....Mike....What happened to the SLEEP Doctor you found downtown that had all the nice credentials???

Mike C (at the Beach!) said:

  I don't know where to jump in here...Just home from my family doctor. In 2 months of APAP I have had what I assumed was 2 sinus infections. STILL don't know since my doctor just doesn't "communicate" though I demand it. The 1st time I flushed my sinuses with Neilmed (I think it is called?). A saline solution, gross but got back on my machine after only stopping 1 night. Seemed to just go away in 2 days?

  Now with my new little nasal FX mask (I sidelined my Quattro full face) I began to (I HOPE coincidentally!) get the headaches, right ear ache etc again after 3 days. Today woke up with my left ear 100% deaf and my face swelling....Dr prescribed antibiotic ear drops as well as oral pill antibiotics. I  am unsure what is going on. Never an ear ache in my 62 years but had sinus surgery about a year ago. I am also beginning to have occasional nose bleeds since beginning APAP 2 months ago. My dumb doctor just responds with "oh, probably just the blood thinner you have to take for your heart"....I want to choke him. I asked today if I need an apnea specific doctor for my APAP complications. NEVER answered! So here I sit at home, deaf with my left face actually swollen with major pain and NO answers. I am looking online for a new doctor since my Medicare choice was just made I have to stay in his same building it seems and ALL of them are idiots in my opinion so not optimistic. Plus, I have an unanswered call into my DME to ask if my new mask requires any setting changes etc. I already accessed the clinic menu & cranked down my minimum to 8, left my max alone at 12 so no idea what comes next. Thought I was beginning to have all the answers and now feel like tossing this APAP?CPAP & just walking away to let nature take it's course. Can't believe how much an earache (and now deafness in that one ear) HURTS! Feel like a big ole 62 year old baby.....

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Permalink Reply by Shoshana on March 23, 2011 at 5:08pm

Hi, Chris! You are absolutely right! Thank you for that bit of sage wisdom!

Shoshana!

chris h said:

Hi Shoshana, Would you have a problem with someone whom had diabetes and needed to inject insulin or an artificial limb ? If whom ever has a problem with a LIFE SAVING device than they are not worth knowing. Good Sleep,Chris

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Permalink Reply by Shoshana on March 23, 2011 at 5:15pm

Hi, Mike:

I absolutely empathize with you. These doctors don't always know what's best for us. That's why they call it a "Practice". They are practicing on us! And sometimes you start to feel like for every 2 doctors, you get 3 opinions.  I certainly hope you can find a resolution that works for you. I gave up on my machine for about a year to a year and a half, thinking "it is what it is, and I will get what sleep I get or not and try to go about my life". I just began to hit too many brick walls and the quality of my life and health diminished greatly. Friends began to take me to task as I am the main caregiver to my mom who has Alzheimer's and heart failure. If I don't take care of myself first, there will be no one for my mom. I am doing my best to give myself extreme self care, but the answers can be challenging for sure and not always so easily forthcoming. It's probably a matter of just keep on trying different things until you find something that works for you. And demand a better response from your health care providers.
Mike C (at the Beach!) said:

  I don't know where to jump in here...Just home from my family doctor. In 2 months of APAP I have had what I assumed was 2 sinus infections. STILL don't know since my doctor just doesn't "communicate" though I demand it. The 1st time I flushed my sinuses with Neilmed (I think it is called?). A saline solution, gross but got back on my machine after only stopping 1 night. Seemed to just go away in 2 days?

  Now with my new little nasal FX mask (I sidelined my Quattro full face) I began to (I HOPE coincidentally!) get the headaches, right ear ache etc again after 3 days. Today woke up with my left ear 100% deaf and my face swelling....Dr prescribed antibiotic ear drops as well as oral pill antibiotics. I  am unsure what is going on. Never an ear ache in my 62 years but had sinus surgery about a year ago. I am also beginning to have occasional nose bleeds since beginning APAP 2 months ago. My dumb doctor just responds with "oh, probably just the blood thinner you have to take for your heart"....I want to choke him. I asked today if I need an apnea specific doctor for my APAP complications. NEVER answered! So here I sit at home, deaf with my left face actually swollen with major pain and NO answers. I am looking online for a new doctor since my Medicare choice was just made I have to stay in his same building it seems and ALL of them are idiots in my opinion so not optimistic. Plus, I have an unanswered call into my DME to ask if my new mask requires any setting changes etc. I already accessed the clinic menu & cranked down my minimum to 8, left my max alone at 12 so no idea what comes next. Thought I was beginning to have all the answers and now feel like tossing this APAP?CPAP & just walking away to let nature take it's course. Can't believe how much an earache (and now deafness in that one ear) HURTS! Feel like a big ole 62 year old baby.....

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Permalink Reply by John Krainik on March 23, 2011 at 11:43pm

Shoshana,

Yes people do get used to the Full face masks.  It sometimes takes a little more work, but once you see that it works, you will do fine.  Be patient. 

Remember, try to find one that fits well without being too tight.  Your DME may need to be gently prodded to try a number of masks to get the one that fits best. 

As far as your concerns about being single and the romantic part of things, I always ask the patients I see, why they would want to use the CPAP before they are ready to go to sleep.  

 

Let me know how you you are progressing, or if I can answer aany questions for you.

John Krainik,CRT,RPSGT
Shoshana said:

Thank you so much, John! I am going to print your letter out and take it to my pulmonary doctor. This is a big learning curve for me, as it is for all of us when we are just starting out. According to the computer download of my machine, I do have some short periods of mouth leak. They don't seem to think that's a huge issue. But you are saying that it could culminate in exactly the type of problems I am having.

 

One problem with the full face mask is the fact that I feel so claustrophobic with it on. Is this normal, and do people eventually get over this?

 

As an aside, I am single, sleep alone every night, and hate to think of having to use this device if I should ever get into a significant relationship again. Not too romantic...especially for women.  But that's just my vanity talking. I know this is something that will lengthen my life and improve my overall health. I am just curious how other singles handle using the CPAP in relationships.

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Permalink Reply by Amy on March 24, 2011 at 10:56am

I have found that most of the people we have here have issues like that when they switch to Nasal Pillows because of not enough humdidity and because they are mouth breathing.  Some just can not use the pillows especially with a higher pressure.  There are many brands ofnasal masks and full face masks.  You may still need a full face mask but a different brand.  The best thing you can do is contact your HME providerand talk to the therapist abotu trying a different brand of mask.  If your insurance does not allow that you might need to look at a nasal mask rather then nasal pillows.

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Permalink Reply by Jan vanNiekerk t SnoringElephant on March 24, 2011 at 11:55am

I know what you are talking about. I had the same problem.

 

The cold air "pumping" through your airways causes it to get swollen. This is a natural reaction to the cold dry air.

 

I am on CPAP treatment since 1997. I must say the first few years I sufferred a LOT. during the time I was in for two sinus operations.

 

I am quoting from the following web site http://www.fphcare.com/osa/clinical-and-applications/heated-humidif... 

 

"Our lungs function best by receiving air that is 37 degrees and 100% saturated with water. Because the air that we breathe is not at this temperature or humidity it needs to be warmed and moistened before making it to the lungs. This is the role of the nasal airways.

When using CPAP the ability of the nasal airways to add this warmth and moisture can be overwhelmed. The body attempts to heat the air more by directing more blood to the blood vessels in the nasal area in order to transfer heat. This causes an increase in the nasal resistance or more recognizably nasal congestion. With a congested nose breathing on CPAP is much more difficult and uncomfortable.

To prevent this nasal congestion you can use a heated humidifier with your CPAP treatment. The heated humidifier is a chamber filled with water that sits on a heater-plate. The air from the CPAP passes over the warm water in the chamber before it is delivered to your airways. The nasal airways are no longer overwhelmed and nasal congestion is prevented."

 

Unfortunately this is not the ultimate...

 

What I did was to combine my old (1997) machine with a heated humidification chamber. This assisted, but even during winter times I used to struggle, because the air cools down by the time it reaches my airways.

 

A friend of mine had the same problem, and he devised his own gadget to keep the tube heated. (He is using a light bulb in a box, with his tube running through it to heat the air) It works, but I think it is dangereous. I will not recommend it!

 

I am trying to make a point and I am not trying to convince that Fisher and Paykel is the only manufacturer giving this solution.

 

I then discovered the heated tubing http://www.fphcare.com/osa/clinical-and-applications/thermosmart.html.

"with its unique heated breathing tube, mimics the ability of the nose to heat and humidify the air. Patients will experience new levels of sleep comfort as humidity levels remain constant through the night, regardless of ambient temperature" 

 

This actually keeps the air warm, while the heated humidification (water) moistions the airway.

 

This is my solution to the problem. I still suffers from allergies, I manage to sleep through the night, even when I suffer from a cold.

 

I know that some other manufactures do have the same concept.

 

I am in the process of comparing the different manufacturers. It will be available in a few weeks on my own website.

 

 The combination of these two are the ultimate!

 

I switched over to the Fisher and Paykel 608 series initially, and are now on their Auto Icon.

 

Kind regards

 

Jan the SnoringElephant 

 

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Permalink Reply by Kathy on March 24, 2011 at 12:00pm

I know the type of headache you're talking about as I'm sure many others do. I started with Bi-pap and have had to use a full face mask because I open my mouth too much. It does come in handy if you do have a cold- at least you can still breathe. By nature the whole process makes you more prone to sinus issues but I guess that's the trade off to try and get some sleep and quality of life! Now I've progressed to using an ASV Bipap machine [for central sleep apnea] which has pretty high pressure. I use Flonase everyday as well as take a Claritin at night. I also use saline nasal spray fairly frequently and often take a Sudafed before I go to bed. Those combinations help stave off the headache. My pulmonary MD agrees the saline nasal spray helps prevent most cold and sinus infections for anyone- he said he and his family use it a lot. Good Luck!

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Permalink Reply by Lisa Bowersox on March 24, 2011 at 3:29pm

Molly,

I am a sleep technologist and a Cpap user.  I had the same issue with my sinus.  You said you use the Res Med S-9 machine.  Do you use the heated hose?  It is a climate control hose.  This has helped me. 

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Permalink Reply by ymmits on March 24, 2011 at 3:40pm

Just from personal experience here, I've had a stinking cold for a few days now and am using an Auto CPAP. So I just turned down the P-min and the sinus pain goes away yet the therapy is still more effective than not using it would be. 

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