Replies to This Discussion

Permalink Reply by RockRpsgt on January 24, 2010 at 10:13am

I like the term Crapnea personally. How we term apnea takes nothing away from the fact that it is more than a minor condition with no simple solutions. If left untreated apnea slowly weakens are body by limiting our o2 and sleep. Without a consistant supply of oxygen our body's, specifically our hearts, have to work harder to get the oxygen we need. This process will cause hypertension, heart problems, nocturia, strokes, seizures, and yes eventually death. Bad sleep affects our body's ability to produce the much needed hormones needed for mental and physical healing. These 2 symptoms together combine for a physical and mental deterioration that the medical community is just now beginning to understand.

The term "moderate apnea" means that you have between 15 and 29 breathing events per hour. This means that every hour while you are asleep you either have a 4% drop in your oxygen levels, or a complete cessation in your breathing. An apneac event has to last for 10 seconds to count, but most average between 20 and 30 seconds.

Let's do the math on the medians of those numbers just to show you what may be going on. Lets say that you have 22 apneac events per hour each averaging 25 seconds in duration. This means that roughly every 2 1/2 minutes you stop breathing, and out of every hour that you sleep you are not breathing for over 9 minutes. Corey please think about this. How would you feel throughout the day if every 2.5 you had to hold your breath for 25 seconds. If you did do this during the day as well as when you sleep your body would age at an unfathomable rate. Yes sleep and oxygen do effect the aging process as well.

Your options..........

Tracheostomy- is the only 100% cure for apnea. This however carries along it's own set of problems. Dr. Mack Jones will have to give you more info on this solution.

Other surgery options- There are many different surgery options that can help reduce the severity of apnea. These surgeries can sometimes be painful and may not eliminate the need for CPAP or some other device. Most surgeries will only half the severity of your apnea. This is great if your AHI is 20 or less, but if your AHI is above 30 you will pobably still need CPAP. Search post by "Henning" for more info on these procedures.

CPAP- is the first line of treatment for apnea. I do not need to go into this in great detail as you have already experienced this line of treatment.

Oral Appliances- This is a mouth piece worn while you sleep. Unfortuanately they will only work if your airway is obstructed by your tongue. The best results that I have seen are when this device and CPAP are used together.

Last but not least losing weight and trying to live a healthy life will go a long way to improve the things going on with anyone. This includes but is not limited to a healthy regiment of sleep, diet, and exercise. In my case this is easier talked about then done in practice.

Stay in constant communication with your doctor. The internet is a good place to find questions, but not so much for diagnosis or personal solutions. Remember that if you do not do something about this "minor solution" soon it will progress. Good luck Corey, and welcome to Sleepguide.

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Permalink Reply by RL on February 4, 2010 at 6:21pm

There is a lot of info to review on this forum. If you keep looking, you are bound to find something you can relate to. If you would like more personal help, please post some more details of your experience with CPAP, like what specific model and mask you were using, and what your experience with your sleep study and doctors or DME were like. Do you still see the same doctor? Maybe they can help too. It is worth asking, or find a new doctor if you need to. Also, what issues did you have with your CPAP use? Also check out the Articles section of this forum.

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Permalink Reply by Andy on February 4, 2010 at 9:48pm

Hi Corey,

Too bad about the problems you had with CPAP. But the fact that you're here hopefully means you're willing to find a solution.

I consider it fortunate that something as "simple" as CPAP has helped me with my apnea. I was diagnosed as "moderate" as well. However, I was also sleeping only 4 or so hours per night, and because of apnea, rarely went beyond stage 2 sleep. So, while I was "sleeping" I wasn't really getting the needed rest.

Since CPAP, I'm way more rested, my memory is improving, and I feel much better all around.

As for your prior experience with CPAP, you might want to try to figure out what exactly went wrong, let us know, and maybe we can help.

The masks and equipment have gotten better, even in the last few years, so maybe the problems you had have been solved by improved designs?

I've found, as many here at this site have, that this is a treatment that the patient needs to take charge of, if good results are expected. Unfortunately, neither the doctors nor the DME companies seem to be able to take the needed time to work out the details of successful CPAP use, so it all falls on you.

I would ask you to take another try at CPAP, and see if you can make it work this time. We're happy to help!

.

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Permalink Reply by Corey Stricker on February 5, 2010 at 9:33pm

Hi.

My problems stemmed from feeling like I was chained down to the machine and couldn't move around in bed. More importantly, I found myself awakening every night and pulling the head gear off and going back to sleep without it. I was only able to sleep with it for perhaps an hour or two, sometimes longer, but rarely for the entire night without taking it off. It also leaked air and did not provide a good seal, which was annoying. Then there was also the problem of awakening with a sore throat on many occasions.

The doctor I saw prescribed the sleep study, then I went back to him and he prescribed the CPAP machine which I then purchased from the DME. The DME came to my house and taught me to use it, and that was pretty much the end of my associations with both.

Andy said:

Hi Corey,

Too bad about the problems you had with CPAP. But the fact that you're here hopefully means you're willing to find a solution.

I consider it fortunate that something as "simple" as CPAP has helped me with my apnea. I was diagnosed as "moderate" as well. However, I was also sleeping only 4 or so hours per night, and because of apnea, rarely went beyond stage 2 sleep. So, while I was "sleeping" I wasn't really getting the needed rest.

Since CPAP, I'm way more rested, my memory is improving, and I feel much better all around.

As for your prior experience with CPAP, you might want to try to figure out what exactly went wrong, let us know, and maybe we can help.

The masks and equipment have gotten better, even in the last few years, so maybe the problems you had have been solved by improved designs?

I've found, as many here at this site have, that this is a treatment that the patient needs to take charge of, if good results are expected. Unfortunately, neither the doctors nor the DME companies seem to be able to take the needed time to work out the details of successful CPAP use, so it all falls on you.

I would ask you to take another try at CPAP, and see if you can make it work this time. We're happy to help!

.

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Permalink Reply by Judy on February 6, 2010 at 12:04pm

It is sad but true, Corey, but yours was pretty much the typical case and the reason the non-complicance rate is so high. Too DME providers and sleep specialists leave it up to the patient to contect them rather than do the proper follow up and/or provide the education, support and advice new CPAP users need.

I would suggest that this time around you insist on taking part in your health care and your sleep needs and that you, the doctor(s) and DME provider work as a team. Do NOT be bashful about asking for their assistance, don't bother waiting for them to come to you.

Since it has been "quite a few years ago" now that you were first Dx'd and provided w/a CPAP your therapy needs may well have changed and for sure the newer CPAPs are MUCH more advanced, even interesting!

I suggest starting back at square one w/a new sleep study and CPAP titration since it is darn hard to stay compliant and use our CPAP every night all night if the therapy settings are wrong. You might want to start by calling your insurance company and asking what local DME CPAP providers they are contracted with. Hopefully you will have the option of more than one as that gives more bargaining/negotiating room to get the equipment you want (w/in reason, of course). Has you insurance changed since you were Dx'd?

Instead of going back to your original doctor, since he didn't bother to follow up w/you, you might want to dig out the yellow pages and check to see what sleep labs are in your area. And then "shop" them. Ask if they are accredited, do they take your insurance (double check w/your insurance to be sure the ones that interest you are in network - don't just take the sleep lab's word for it). Visit the in-network sleep labs, check out the area the lab is in for safety and quiet (who wants a sleep lab "in the ghetto" or next to a railroad track. Ask to see the rooms, is everything clean and neat, do the bed and pillows look comfortable, maybe they will even throw a cover over the bed so you can lay on it and try it out), are their sleep techs registered polysomnography techs, does a RPSGT do their PSG scoring, is/are their sleep doctor(s) accredited, do/does their sleep doctor consult w/the patients personally or only w/the referring doctor, do you need a referral, etc.

Hey, you shop for a car and a lawnmower, etc. WHY wouldn't you shop for a sleep lab, DME provider and CPAP equipment?? Its YOUR health, YOUR sleep, YOUR therapy, YOU are paying for it, whether thru insurance or out of pocket is immaterial YOU are still the one PAYING for all this.

When you "shop" the DME provider ask what brand and model CPAPs they prefer to provide, will they provide other brands or models, do they have a lenient mask exchange policy, is their RRT (registered respiratory therapist) easily and readily available to you, do you feel comfortable w/their RRT that he/she is easy to talk to, seems to know his/her business, seems helpful and informative, etc. Most of your contact w/be w/the DME provider staff so make sure you are comfortable w/them.

Assuming you go thru another in-lab PSG: be sure to tell them you want a copy of the doctor's dictated results (1-2 pages), the full scored data summary report w/condensed graphs (5+ pages) for each in-lab PSG and if CPAP is to be scripted you will want to have some say in the matter and to come to a meeting of the minds w/the sleep doctor on just what equipment will be ordered plus you will want the script so that you can "shop" your DME provider options before deciding which DME provider you will use.

Make it clear to both sleep doctor and DME provider that you will ONLY accept a fully data capable device, that you will REUSE a compliance data only device. Given the problems you had the first time around you want the data available not only to your sleep doctor but to you as well. And make it clear by full data capability you mean access to your Pressure, Leak, AHI, AI as well as the compliance hours and nights of use. Some providers will try to con you about a device being fully data capable because it has a data card or that compliance data is the data you want or that compliance data is all CPAPs are capable of providing.

At the sleep lab try as many masks as you can, be sure to try at least one of each style, i.e. full face mask, nasal cushion mask, nasal pillows mask and oro/nasal mask (sometime called a "hybrid" style) and be sure to ask and know the name of the mask you end up using for your titration PSG. If you like it and do well w/it you might want to order that one from your DME provider. If you hated it and it was grossly uncomfortable you will know NOT to let them foist that one off on you.

Rome wasn't built in a day. When you have your equipment, don't get too discouraged if you can only use it 3-4 hours a night. Keep using it every night and gradually you will be able to keep it on longer and longer. During the day and early evening when possible just sit down w/your mask and CPAP turned on and read a book or magazine, work a jigsaw or crossword puzzle, watch TV, whatever takes your mind off of "I've gotta get to sleep". That will help you get acclimated to and comfortable w/the mask and CPAP before you go to bed and eventually will help eliminate that taking the mask off at night and not putting it back on.

Be sure to post here describing any problems you have w/your mask or the humidity or even pressure. We can help you get over those problems and advise you when its time to contact your DME provider or sleep doctor that "this just isn't working" so the necessary changes can be made to enable you to be a successful CPAP user.

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Permalink Reply by BeeAsleep on February 6, 2010 at 12:11pm

Hi Corey,
Welcome to the SG forum. I often wonder how anyone succeeds in their therapy without this forum. I was diagnosed with OSA a year ago in April. I had the same experience as you did with all the "help" from the doctor and the DME. They wrote a prescription for my CPAP ( the cheapest, low end machine I could get with no data capability or EPR), showed me how to plug it in and then left me alone with all of my concerns.
After posting my concerns on this forum I learned that:
1. I needed a data capable CPAP machine, I followed up with my doc an got one.
2. I learned I needed a better fitting mask, I followed up with my DME and got one. I am on mask #3 and I love it.
3. If any concern comes up like rainout,sore nose or anything. I come here, ask the question and always get an answer.

This forum and others like this is where you will learn to take charge of your own health and make the OSA treatment work for you.

Being alive and being healthy is the best!


bee

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