Return to the Health Forum | Post a Follow-Up

 o
I need help with cpap machine question.....

Posted by telly2 (My Page) on
Mon, Mar 16, 09 at 23:01

Long story short, I am certain (as is my husband and a surgeon that operated on me recently) that I have sleep apnea. Of course to what degree is uncertain since I haven't had an official sleep study done (I'm unemployed & uninsured at the moment). Anyway, I have an opportunity to buy one from an individual, and I have a friend whose job entails the set-up of these machines for people in their homes, so I think he would certainly adjust mine for me. My biggest question is this: Is there any harm in my doing this without the supervision of a doctor ? I don't mind going for the sleep study, I just can't afford to right now. As soon as I have health insurance again, I plan to pursue this. In the meantime, I'm tired of being tired, and I'm extremely concerned about the risk of serious damage to my health, such as heart attack & stroke that I've heard can be associated with sleep apnea.


Follow-Up Postings:

 o
RE: I need help with cpap machine question.....

Yes there is extreme danger in doing this without the supervision of a doctor.

First of all, whether you have a friend who sets these up in peoples home or doesn't is not relevant.

Your friend has no idea what level of positive air pressure to set the machine at.

If it is set to high for you, the risks can be headaches, hemorrhaging and stroke!!!!!!!

The headaches could be an indication of other problems or an adjustment needs to be made in the apparatus. Only a doctor could determine that.

In the case of more serious risks, it could take just one time with the pressure to high to result in these risks.

The risk in buying a used cpap machine from someone is that you do not know what kind of maintenance has been done on the machine, how well it works and you are using various parts of the machine that have had exposure to another individuals body. These include the mask or nasal inserts used to pass the air through to the body, the tubing that is attached to these parts and to the machine.

Secretions can remain in these parts and in turn enter your body. The risks are health issues that can be passed to you.

These parts can be replaced easily, but they must be done with a doctors order to obtain them. You can not just purchase these on your own.

If you friend offered to get the parts for you, then your friend would be breaking federal laws in doing so, and setting up machine and equipment illegally. Not something I would ask a friend to do and would think a friend would not want to do something like this to you and risk your life as well as breaking laws.

The only way to determine whether you really do have sleep apnea is to have a sleep study done. Even if you and a surgeon that operated on you believe you do, that is not adequate for diagnosis.

During a sleep study, you are hooked up to all kinds of brain and respiratory apparatus to monitor you sleep. You are also hooked up to an in hospital version of a cpap machine.

If you are observed to have periods of apnea in your breathing while you are asleep, it will be recorded by equipment and seen by a tech that is watching you and the monitoring device screens.

After it is determined how many actual periods of apnea occur over a period of an hour or 2, if you have any apnea periods the cpap machine is turned on to a very low setting. You will be continued to be monitored and the CPAP setting increased, if necessary, until you are sleeping for at least an hour or so without any episodes of apnea.
The setting level that the CPAP machine was set at during your sleep study will be recorded and documented and given to the doctor, who is a specialist in sleep disorders.

The setting on the CPAP machine in the hospital is the level of positive air pressure that you require to stop the apnea episodes when you are a sleep and that is what the doctor will order your CPAP machine to be set at.

There is no other way to get the proper pressure settings for any patient.

It is not safe to go ahead with the plan that you have for a CPAP machine, but rather, see a specialist and get a sleep study done.

Until you can get a sleep study done and see a doctor, you might want to try sleeping on your side. Sleep apnea is decreased in number of events by sleeping on your side. It won't stop your sleep apnea, but it may decrease events for you.

Good luck

Fran


 o
RE: I need help with cpap machine question.....

Fran: Thank you for that good information. That's exactly what I needed to know.


 o
RE: I need help with cpap machine question.....

Well Telly, I have a different opinion.
My doctor doesn't help at all. I educated myself and am keeping an eye on myself.
Is your friend a respiratory therapist?
Would your machine be data capable? (meaning you could check the data each morning, to see how you were doing)
You also need a machine that allows you to establish the parameters.
Make sure you get the right accessories and clean them well if they are used.
Will your machine be able to be APAP (auto pap) or CPAP?
I think APAP settings can be trickier than CPAPs.....which you set at one pressure.
You can start your pressures low and see how you feel.
Check out the forum at cpap.com. They are big advocates of people taking care of their own treatment, since so many docs aren't that great at it.
It can be a challenge to get a mask that doesn't leak.
I use a Swift nasal pillow. Leaks are a constant problem for alot of people. If your mask leaks, then you're not getting the benefit you should be.
So......my opinion is quite opposite of Fran's. I've been using one for several years, and its not dangerous if you don't have a doctor. You just need to learn the ins and outs of it and educate yourself.
The only danger there might be is if you have central apneas (in your brain, rather than in your nose/throat), and you set your cpap too high. It can worsen the central apneas. But you should always start very low on your settings, and see how you feel.
I have the feeling that before long, this treatment will be available without a doctor.
Oh.....here's something you could do. Can your friend get access to a finger recording oximeter? You could wear that for a night or 2, and it would show if you are having periods of desaturation. If not.....then you probably don't need a machine.
Check out that forum I mentioned, and you'll learn lots.
Good luck to you.


 o
RE: I need help with cpap machine question.....

Catherinet, thank you for that very good information. I am a big advocate of educating myself & participating in my own health care. As you mentioned, my idea was to start off with a very low setting and determine if I felt better with that. But after reading both answers to my question, it points out to me how little I know about all this, and I think it would be prudent to have a sleep study done. My primary care physician recommended someone, so I think I will see how much the initial study costs, and maybe I can afford to pay for it without insurance coverage. If not, hopefully I will have coverage soon and can have it done then.
I definitely will check out that forum anyway, and I'm not surprised to hear that doctors frequently don't have enough information on this subject.
I certainly do not want to encourage my friend or anyone else to do anything illegal, and of course I don't want to do anything to harm my own health further. As Fran mentioned, I do have concerns about used equipment, although I am assuming the machine components can be thoroughly sanitized. It's very frustrating when I know I need one, and it seems like so many people who have them don't tolerate them well, so they don't use them, and probably just stick them in the closet ! When I placed a "wanted" ad for one, I was bombarded with offers, some of which were for high-end machines.


 o
Catherinet.......

Thank you for that very good information. I am a big advocate of educating myself & participating in my own health care. As you mentioned, my idea was to start off with a very low setting and determine if I felt better with that. But after reading both answers to my question, it points out to me how little I know about all this, and I think it would be prudent to have a sleep study done. My primary care physician recommended someone, so I think I will see how much the initial study costs, and maybe I can afford to pay for it without insurance coverage. If not, hopefully I will have coverage soon and can have it done then.
I definitely will check out that forum anyway, and I'm not surprised to hear that doctors frequently don't have enough information on this subject.
I certainly do not want to encourage my friend or anyone else to do anything illegal, and of course I don't want to do anything to harm my own health further. As Fran mentioned, I do have concerns about used equipment, although I am assuming the machine components can be thoroughly sanitized. It's very frustrating when I know I need one, and it seems like so many people who have them don't tolerate them well, so they don't use them, and probably just stick them in the closet ! When I placed a "wanted" ad for one, I was bombarded with offers, some of which were for high-end machines.


 o
RE: I need help with cpap machine question.....

Hi telly,
They can be hard to get used to, but then again, alot of people find that they give them their lives back. It does take some getting used to, and sometimes you have to try different masks. I've settled for my first nasal mask, but I did have alot of leak problems out of my mouth. With leaks, you're just not getting the right treatment. I ended up taping my mouth closed.....which alot of people do.
I have fibromyalgia and have had alot of fatigue for years. I think the cpap has really helped me to get some of my energy back.
Not all docs are capable of reading sleep studies either.
I had one ordered and read by a supposed expert and he said I was fine, even though I only slept a little over an hour!
Then I had another one several years later that showed I had alot of problems. They aren't the easiest test to have. They put dozens of wires all over you, including ones a little up your nose. Fortunately, they let me have xanax with my last one, so that I could fall asleep.
Sometimes, they want you to come back to figure out the settings on your machine. But I couldn't bring myself to do it again. Fortunately, my doctor let me have a machine without that "titration" test.
I have slowly figured out what my best setting is. I feel like its a must to have a machine that lets you check the data each morning.
Could you possibly get a recording oximeter and use it one night? That's what I did first. It showed I was having periods of apnea. Then I went and had the expensive sleep study.
Good luck to you telly!


 o
RE: I need help with cpap machine question.....

I have sleep apnea and am using a CPAP machine. Most doctors aren't versed in sleep medicine, however, a pulminologist is. A pulminologist is trained to read sleep study data and determine the proper therapeutic levels.

There are a number of variations available. The treatment depends on the specific problems causing obstruction and their location. There are three types of sleep apnea, including obstructive sleep apnea (OSA), central sleep apnea, mixed sleep apnea. Obstructive sleep apnea is a disorder in which complete or partial obstruction of the airway during sleep causes loud snoring, oxyhemoglobin desaturations and frequent arousals. Obstructive sleep apnea is caused by repetitive upper airway obstruction during sleep as a result of narrowing of the respiratory passages. Central sleep apnea is a sleep breathing disorder that occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations. Conditions that can cause central sleep apnea include bulbar poliomyelitis, encephalitis affecting the brainstem, and neurodegenerative illnesses.

A sleep test, called polysomnography is done to diagnose sleep apnea. Confirmation of the diagnosis requires making measurements while the person sleeps.

There are different types of machines - some that have automatically adjustable air pressure or air pressures that are different when you breathe in than when you breathe out. There are also APAP or AutoPAP or AutoCPAP machines. These machines fine tune the amount of pressure delivered to the patient to the minimum required to maintain an unobstructed airway on a breath-by-breath basis by measuring the resistance in the patient's breathing, thereby giving the patient the precise pressure required at a given moment and avoiding the compromise of fixed pressure. There are also bBi-level pressure devices.

You may or may not need humidification whether it be heated or passive. Some people need the ramp feature, others don't. Some people need to use a chin strap, others don't.

There are also a variety of masks - all based on a theraputic determination. There are full face masks, nasal pillows, masks that just cover the nose, etc.

The point of all of this is that there are way too many variables to monkey around and guess at what "might" work. CPAP therapy involves more than just strapping on a mask and experimenting. Different types of sleep apnea require a different course of treatment and the only definitive way to determine what one needs is to have a sleep study. Randomly guessing or experimenting and getting it wrong can be just as deadly as not using CPAP once it has been properly diagnosed.

A diabetic would no sooner experiment with how much insulin they need by "trial & error." CPAP therapy should be viewed the same.


 o
RE: I need help with cpap machine question.....

As a nurse, I think you are foolish to use ARAR/CPAP without supervision!
My concern is the multiple settings- you use certain settings for certain purposes.
Using a 'used' machine is a great way to get a bacterial infection- that could lead to menengitis- an infection of the brain and spinal cord.
Your 'friend', if a RT would be practicing outside of his/her legal means- which means 'illegal'. If a 'friend' would do something like that- he/she should lose license.
You can apply for the hospital/sleep center to have the government pay for a large portion of the study. Any facility that takes government funds has to write off a percentage of patients bills. You can also apply for a 'grant'- an amount of money that has been given by different types of plans, ie a'Lady's Guild' may have given $1,000 towards a patient's bill- there are many ways to have it done. If your income is low, you may qualify for a free study. They will also take monthly payments.
You are foolish to do what you are thinking.


 o
RE: I need help with cpap machine question.....

It's easy to say someone is foolish to try to fix their own severe health problems themselves when maybe YOU don't live in a poverty stricken situation. Sometimes people do desperate things when there doesn't appear to be any other options. I have a friend right now who has severe sleep apnea and narcolepsy and can't afford to get any kind of help so has been sleep deprived for going on two years now. She will be sitting on the sofa with me and fall asleep in the middle of a sentence. She immediately starts snoring like a freight train and in the middle of snoring I have observed her quit breathing multiple times. She earns $8.00 an hour, has no insurance and some weeks eats nothing but rice and beans. I help her out when I can but unfortunately I don't have much extra either. Lately, she has been falling asleep on the job due to these issues and has already got written up for it. Also, at night time she has started walking in her sleep and falling over furniture and hurting herself, sometimes she doesn't even wake up when she is hurt until the next morning. In the last two months she has fallen asleep at the wheel TWICE and plowed down someone's mailbox. It makes me sad that she can't afford a sleep study. I want to find a way to get her some help but I don't have a clue where to start. I think I will start calling all the local sleep centers and see if they have any suggestions. Anyway, my point was that sometimes circumstances in life prevent doing things the best way. If it came down to a choice of doing nothing or buying a cpap machine and seeing if it works that seems better than doing absolutely nothing and ruining your health or killing soemone else on the road because you fell asleep.


 o
RE: I need help with cpap machine question.....

I recently had stomach surgery and I use a cpap machine. my question is can my stomach get bloated from the cpap air?


 o
RE: I need help with cpap machine question.....

my cpap is reading system error.any ideas?


 o Post a Follow-Up

Please Note: Only registered members are able to post messages to this forum.

    If you are a member, please log in.

    If you aren't yet a member, join now!


Return to the Health Forum

Information about Posting

  • You must be logged in to post a message. Once you are logged in, a posting window will appear at the bottom of the messages. If you are not a member, please register for an account.
  • Posting is a two-step process. Once you have composed your message, you will be taken to the preview page. You will then have a chance to review your post, make changes and upload photos.
  • After posting your message, you may need to refresh the forum page in order to see it.
  • Before posting copyrighted material, please read about Copyright and Fair Use.
  • We have a strict no-advertising policy!
  • If you would like to practice posting or uploading photos, please visit our Test forum.
  • If you need assistance, please Contact Us and we will be happy to help.


Learn more about in-text links on this page here