I wrote a post yesterday as a guest using the name 'Waiting for a new life.'  I said they make CPAP machines for home use that have a computer which records all your breathing patterns.  This is very true.  I got mine just a few weeks ago in April 2008.  It also has a built in humidifier that can be adjusted and it's only the size of a large clock radio.  With mine, a Medstar Reflex, I can increase and lower the air pressure to some degree by pressing a button on the top of the machine.  In the first week I used it, I found myself slightly coming into conciousness a couple of times during the night so I increased the air pressure and the problem went away.  This may not be as exact as being titrated but it does allow the person using it to customize the air pressure to their own needs.  This is far superior to not being able to do anything.  I suppose when the technician programed the machine he set up parameters for the air pressure so I could increase or decrease it within a set limit.  For most people that's all they need--a refinement.  Now, as I said the doctor at the facility where I got tested will see me next week to go over the data collected by the machines computer.  From this the doctor will reset the computer according to my needs.  In one year I go back and get re-tested.  This is standard procedure for sleep apnea in New York.  

This may be cutting edge treatment, but I don't think so.  Where ever you live you need to find the best specialist available.  I also wonder about your insurance.  Isn't it more likely your insurance only pays a certain amount for a sleep apnea machine.  If the Refex machines cost a little more (mine was about $650) could you pay the difference?  Believe me its well worth it.  Having a machine that works for you means the difference between living your life and  not having one.  I know because  that's what happened to me after living undiagnosed for five years.  You need to get your doctor to prescribe one of the new machines and then talk to your insurance.  You might even be able to get an insurance board review over this claim.  It also seems to me that even if you can adjust your air pressure a little, you still need to be retested in a year.  My doctor told me that my brain is having to learn how to sleep all over again.  All kinds of electrical and chemical changes are taking place in there.  It's having an effect on mind intellect , my emotions, and my body.  This is normal.  It takes time for your brain to adjust and during that time you probably will have discomfort.  Once your brain settles down, you need to get re-tested.  It makes sense that you will be sleeping differently a year from now.

Well, I've said a lot.  I hope it gives you some ideas.  I've been in and out of the medical care system since I was 12 years old (I'm now 59) and one thing I've learned:  don't just accept the decisions of doctors or insurance companies.  There are all kind of reasons they can be wrong.  Last year, my sister's brother-in-law went to a local doctor about physical problems he was having (compounded by his alcohol consumption) and the doctor told him he was about to die.  There was nothing he could do about it.  My sister's husband would not accept that.  He took his brother to the Mayo Clinic where they ran all their tests on him.  Come to find out, he wasn't going to die, HE HAD SLEEP APNEA!  Take care and good luck.

I can't help it but I have to add this to my reply.  I'm just so amazed that someone could just say the only way to be titrated is to be tested and leave it at that.  It sounds as though there is no solution.  Here's a comment from someone else in answer to a different post.  It explicates what I was trying to say earlier.


It sounds to me like your old machine wasn't doing it's job.  This is yet another reason why everyone should have a data capable machine.  You just don't know if you machine is actually doing what it is supposed to do without some data feedback.

Overtired,

Wow...I am curious as to your machine...Medstar Reflex....Could you give me more information on it and lead me to a website that gives the technical stuff?

Overtired,

I'm single and low income because I'm unable to work right now due to the severity of my sleep apnea. I have to go to a hospital that treats low income people because I can't pay for healthcare right now. Yes....it would be nice to be able to pay for a machine myself but I do not have that kind of money at this time. I have to take what is given to me and to be honest with you I'm grateful for that. I do not have the luxury of going to whatever doctor I want.....I have to go to who is at this particular hospital and again I'm just grateful that I'm able to get healthcare at all. This hospital has a lot of people going to it so there is a long waiting time to get care at times. But at least I'm able to receive care.

I know you were just trying to help and I appreciate that but not everyone is in the same boat.

It is really unfair that any health insurance would not cover the most effective treatment for someone who is suffering.  This is a real problem with the system.  It is a blessing that you are getting treated for the right disorder.  I myself went at least 5 years, maybe longer, being misdiagnosed.  It ruined my life.  I had no energy to do anything outside of going to work and coming home.  I had absolutely no social life, not even talking to people on the phone (I lost touch with any friends I might have had).  I couldn't keep my house clean or keep my plants alive.  I did nothing at home but watch t.v. and read.  I reached a point right before I got tested of actually planning suicide.  I may have been able to go to private doctors and good ones at that, but they misdiagnosed me.  I saw a doctor for depression for 8 years and he never helped me or understood that I really had sleep apnea.  He kept giving me more antidepressants and one of them made me gain over 100 pounds.  It was his death last year that caused me to find a doctor who saw right away that I had sleep apnea.  Now, besides recovering from sleep apnea, I have to bring my body back to normal and rebuild my life!  I guess my point is you are right to be thankful.  I am so glad the doctor you did see knew what was really wrong with you.  I wish you luck.

By the way, someone inquired about the machine I was using.  For anyone interested, it is the REMstar Plus with C-Flex and can be found at http://mseries.respironics.com.  It's part of the www.respironics.com website.

Ds  ...How long have you had your machine?  Did it come from a medical supply company (DME)?  You can still try the route of getting a loaner APAP from the DME that supplied your machine.  Explain your situation.

 As I had stated previously (maybe not this thread)  I was in a situation (no insurance for a few months) where I needed to know if my pressure was right...I talked with the DME and explained the situation...they called the Dr and got him to fax an order for a loaner, they brought one out and determined that yes I needed a pressure change...Once I got the coverage I did the study.  If the APAP were to show that my pressure was within reason then I would know that I have other things causing my problems....therefore eliminating the need of a titration study.

I can't even handle my co-pays on things...I can't even imagine what I would do in your situation!  I feel for ya!

Mrs. Rip Van Winkle,

Thanks for the advice. I'll try it. All I know is that when my Dr had put in the order for a CPAP she had originally asked for a C flex machine but I got a CPAP instead.  they told me due to the fact that I was getting it through this hospital that was for low income patients (I don't technically have insurance; it's basically insurance through the hospital) I could only get what they had left over. That seems kind of crummy but I am grateful that I can at least get one. So I guess I wasn't holding out too much hope of getting the one that you guys describe! (lol) I'll try anyway though!

Thanks again!

Overtired,

I too was not diagnosed for years regarding my sleep apnea. They thought I had chronic fatigue syndrome. Because of that misdiagnosis I lost my job and eventually my home.

I've finally been diagnosed but this has been going on for so many years that I'm at the end of my rope with it. I have no social life, don't do any of my hobbies and cannot stand having to basically be a prisoner of my home. I've become severely depressed and at times thought of ending it all. (I never do because I couldn't do that to my mother) I can't take anti-depressants because they make me even more tired. I'm very, very frustrated.

Well...as you know...I too am in the same boat when it comes down to a lot of they things you had go on.  Don't get frustrated...easier said than done.  To get me through these times I look back at other times of my life that I thought I would never get through...but I did.

I know you are aware of this stuff but doesn't hurt as a reminder...I have to push myself to do them...like tonight, I am real real low...sitting in front of a stack of bills to be paid with no money to pay them, not getting my Advair due to the $$ etc...but I am going to push myself in this muggy humid climate to get out tonight and go for a walk...it builds the seritonin levels which helps lesson the depression.... and if I can get my heart rate up a little walking I know I will feel a little better.  I may even see something that will make me smile....I also still have B12 sublingual tablets that I had stopped taking...due to just being in the "what the F difference does it make mood"...but I am going to start taking them again. The B12 at Walmart is not that bad in price and once in awhile Walgreen's or CVS have a buy 1 get 1 free sale. Later this evening I am going to get my husband to play a card game with me...it is giving me something ot look forward to.
I am going to control what I can in my life so I feel that I DO have control on something.  

Depression is one of the leading causes of fatigue...Do what you can to lift your spirit.  If you want, we can email each other...PM if you want to and I will send you my email....or PM with yours.  I would like to hear about some of your hobbies.  I like to paint!

BTW...I have spent the last 4 years on a run of the mill CPAP like yours...nothing wrong with it...it does the job....but I understand the need you have at this time.  I am lucky that we do have insurance but I still have my co-pay which I can not afford.

ds wrote:

... my Dr had put in the order for a CPAP she had originally asked for a C flex machine but I got a CPAP instead.

C-Flex is a feature that is available on some Respironics CPAP machines that lowers the pressure a bit when you exhale.  Some people love C-Flex; some, including me, hate it.  I have used a standard CPAP machine for over 14 years, even though I own two autoPAPs; one with C-Flex.

C-Flex makes no difference in therapy.

Bearded One,

Yeah...I know there's no difference in therapy when it comes to CPAP and C-Flex....I was just simply trying to state that I can't just get whatever machine I want. That's all.

My doctor has told me he could/would show me how to reduce the pressure on my CPAP machine.   I figured it out myself and did it myself before he offered.

I googled for something like ' you can adjust the pressure on your cpap machine ' and found the answer to how...

sleepy42 wrote:

My doctor has told me he could/would show me how to reduce the pressure on my CPAP machine.   I figured it out myself and did it myself before he offered.

I googled for something like ' you can adjust the pressure on your cpap machine ' and found the answer to how...

You opened a can of worms with this.  Now let's wait for all of the posts stating that patients have no business making their own adjustments.

well... as far as I know, it's not illegal to change your own CPAP pressure setting...  and I know for sure, waiting 3 months to get a new sleep study would be way to long to have sleepless nights... and with a little bit of common sense and knowledge could potentially make those 3 months seem a little shorter...

I know for me... I may very well have given up on CPAP if I hadn't figured out how to change my pressure myself.

I wonder about your doctor. I know it's different over here but I had my second sleep study done about a month ago. The experience was awful. For some reason my legs kept moving, aching & getting needle like pains. The mask leaked all over, wheezing, hissing and making farting noises. The bed was not very comfortable and of course I was wired up like Frankenstein. So, on the basis of this they saw how I sleep?

Anyway they gave me a script for a CPAP set at 14 inch/h20 pressure.  I started reading these wonderful forums, especially where bearded men discussed their issues with XPAP treatment and it became very obvious that mask leakage was a big issue. Then I called around to various suppliers to see what I could get over here. They said that I could get a basic CPAP with the script that I had because that’s all the government insurance would cover.

I decided to go to the sleep Dr. (respirologist) before I got my equipment because I wanted something that would work as good as possible (like an APAP). I got real lucky and got a good one right off. He explained that the government insurance would only allow me to have an APAP (which I thought would be the answer to the leakage issue) if I met certain fairly restrictive conditions. But that, based on the results on my sleep studies he would sign a script allowing for pressures from 11 to 14. He said to try the lower pressures, see how I felt and if necessary get it raised if needed. If this Dr. can do that why can’t others?

By the way, I found a supplier who said that for the amount that the insurance covered I might not be able to get an APAP but that I could get a data capable machine, so that is what I got without having to pay for anything more than the co-pay.


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Machine: ResMed S8 Elite
Humidifier: HumidAire 3i