My dilemma

Hello All!

I haven't used CPAP in about a year. I feel that it's affect without using one has finally caught up with me. For the past few months my Apnea has gotten worse (my opinion). Find it hard to get restful sleep. Every chance I get I want to sleep. Even when I'm working I fight the urge to sleep. It comes in waves most of the day all day. It's become difficult to put in a straight 8 hrs of work per day. I have to break up my schedule and work the remaining hours after a nap. The nap helps if it's more then an hr.

Another thing. I'd like to knock off about 50 lb. I believe that would help my condition. However, I just don't have the time or transportation to get to a gym right now. Feeling tired all of the time how the hell am I going to perform in the gym? Go figure, back to square one.

When I got my sleep study done doc told me a few things. 1. loose the weight. 2. tonsil's and adenoids must come out. After reading that tonsils and adenoids removal doesn't cut it. I'm horrified! Being in the hospital no insurance and having my tonsil's and adenoids removed!!!!!!!! I'm 35 not some kid that can eat some ice cream. That is $15K alone! Ouch for the bank account! Not that I'm a penny pincher. When it comes to my health I'll pay. Medicare sure doesn't help enough. I know that I'll have to pay for what I need out of pocket. That is fine as long as it helps.

PAST EXPERIENCES: I had a cpap before and used it for a few month before I had to move. It helped me out a lot. At that time I was going to school and was able to stay awake. I just didn't like the mask. Kills the mood of you know what I mean. Used to hide it. Didn't like anyone to see it, even worse when I had it on. At night when I got something to drink. I'd drink out of a straw so I don't have to take the mask off. Wake up in the morning with my nose sore.(under my nose) It would be dry. Once I put a humidifier on it helped but still had the same problem.

Questions: If I lost all of the weight how much would that help? If any at all? I hate the way that I'm now. I gotten older and fatter along the way. Not what I expected or wanted.

Bottom line, I have to get some kind of CPAP and get started in doing something. I know that the quality of life for me will change. It's all a matter of time. Once you get the right calibrations set for your particular circumstances I should be ready to go.

Losing weight might not help your apnea but treating your apnea will definitely help you with weight loss. I hope you get back with the treatment.

Elle wrote:Losing weight might not help your apnea but treating your apnea will definitely help you with weight loss. I hope you get back with the treatment.

Never saw it that way before. Interesting, please explain?

admiralross wrote:

Elle wrote:Losing weight might not help your apnea but treating your apnea will definitely help you with weight loss. I hope you get back with the treatment.

Never saw it that way before. Interesting, please explain?

Here's some reading.....

viewtopic.php?t=12359

Follow and read the links in that post.

Den

Sleep doctor told me that if I loost 15 lbs the apnea might go away. Lost 25 lbs and it didn't help.
I foughtusing CPAP for many years, it just sat in the closet. Doctor finally threatened to fire me as a patient and made me realize how serious it was getting. He committed to giving me some relief and I committed to following his instructions.

Doctor told me that many patients NEVER realize the seriousness of apnea and he choses to spend his time working with patients who want better sleep health.

If I live to be 100 yrs old I don't think that I will ever go to bed at night without thinking about the octopus on my face.
My blood pressure is back within normal range, I feel rested most days and have lost some more weight (down to 205 now).

IMHO the machine is secondary, the whole secret is to find the right mask FOR YOU. I have seen people here swear by a particular mask, only to see them change mask's later on. I don't use the same mask every night. Sometimes I wear a mask for a week and do good, then all of a sudden one night I will start fighting it. I always keep another mask ready to go, on the head of the bed to put on in these cases.

My doctor says that most people who stop CPAP, stop because of mask problems. I am now rotating 6 mask's.

A friend of mine had a top of the line CPAP and it didn't do the job for him. He then bought a 200.00 machine off Yahoo and is very happy with it.

IT DOESN'T MATTER WHETHER A MACHINE OR MASK COST A DOLLAR OR 5,000.00, IF IT WORKS FOR YOU!!

My nutritionist told me that sleep loss and osa work together. They feed on each other, sad to say. I'm wasn't sleeping well and woulld snack throughout the day(this was the mindless snacking not the planned meals) to get energy spikes, that in turn, put on weight. I needed the energy spikes to stay awake at work, this was before I was diagnosed.
She said in order to lose the weight. I would need to get exercise and stop the snacking. That I could lose the OSA if I did. Drs. never give a guarantee, but she sounded very promising.

For me it is really simple. I made a decision that this was going to work for me. You have to be willing to go to any lengths to make this work and it will. I've been at it somewhere between 8 and 9 years now and NEVER miss a night with the hose.

Good luck with your decision...


JeffH

Yo, Admiral. Glad to read that you've woke up enough to smell the coffee and get back on xPAP!

It will help if you remember what pressure(s) your previous CPAP was set at as a starting point since you obviously aren't in a position and the frame of mind to undergo a current sleep study. If I were you I would contact the old sleep doctor and request a copy of the full data from your previous sleep evaluation and titration study (about 5-6 pages, including a couple of graphs) as well as the dictated report and the script. He may try to stall on the script and try to insist on a current sleep study - but that script is part of your medical records and you have a legal right to copies of your medical records.

Do you still have the old mask that didn't work for you and left w/a sore under the nose? That would help in selecting a new mask by being able to see and know the size and "model". It sounds like it "might" have been a shade to short for you. But we also might be able to help you get it to work for you until you can get a better fitting mask.

You most likely are NOT going to be able to get an xPAP w/o a script. That old script is good for life with online DME supplier such as our host, cpap.com but a local DME supplier will insist on a current (w/in one year) script and sleep study. There is the chance that someone here in the forum may have a used xPAP for sale or you might be able to find on on craigslist.com.

For the time being dig up as much of your old info as possible as suggested earlier in this post.

Meanwhile keep in mind that if you are feeling rested enough you have the energy to be more active, you have the energy to fix good meals rather than feeding on whatever is easy and handy to eat and all of that is going to help w/the weight issue. Good luck!!

Sounds to me like you are seeing a ENT as your sleep doc, that is probably your first mistake.

Second mistake is actually listening to them and believing it will solve your weight problem.

You've made it 35 years so far with them tonsils, SHOW me 1 single case where their removal reduced OSA any, SHOW me 1 single case where their removal showed airway improvement with actual before and after measurements. While you search for that outcome you've earned some interest on your $15k.

Next, take a small portion of that $15k (about $700) and buy a Remstar Auto with A-Flex and a humidifier from cpap.com, buy a mask. If you don't know your size, I'd get a large Soyala nasal for starters, second choice would be a ComfortGel. You can then play with other mask interfaces until you find one that works the best for you, but at least you'll have a second one to fall back on for a base line.

Get a dog (no stupid cats here), I suggest a Jack Russell Terror, an AKC one will cost you around $400 or so, they have lots of energy, little hyper as a pup up until they are about 18 months old, but after that they are truly mans best friend and smarter than most of your friends. Get a dog crate, a leash take them for a mile long walk every evening.

Before you know it you will be having more energy and losing weight. If after 6 months of that and chasing the dog you don't feel better, you can take the balance of that $15 and go on a cruise or have your head examined

I am not advocating tonsil/adenoid removal for adults, BUT I do have to say that my daughter had her surgery for OSA back when she was in first grade, and the difference was immediate with 100 percent improvement.

We videotaped her while sleeping, because it was so dramatic to show to her Dr.
It was obvious to us, and her Dr. that it was her problem.

However, I will watch her carefully as she grows older, because I have other relatives with OSA, as well as myself.

Would that be a possibility for you, to video yourself, or have someone watch you to kind of see what's going on...since you don't have insurance?

Just a thought.
Anyway, glad to hear you're open to getting back on CPAP!
Best of luck to you!

NeedinZs wrote:I am not advocating tonsil/adenoid removal for adults, BUT I do have to say that my daughter had her surgery for OSA back when she was in first grade, and the difference was immediate with 100 percent improvement.

We videotaped her while sleeping, because it was so dramatic to show to her Dr.
It was obvious to us, and her Dr. that it was her problem.

However, I will watch her carefully as she grows older, because I have other relatives with OSA, as well as myself.

I had mine out around the same age, and it didn't help much at least with the snoring... I'm not sure about apnea events because my parents never kept a pursuit of the Sleep Apnea part, and I only just found out from my mother that that was one of the reasons the Dr. suggested the surgery. They were just happy that it stopped the persistent Strep Throat I had. All I remember about the whole thing is the Dr. giving me a comic book to read about the surgery and the time spent in the hospital. That whole event is what caused my fear of Doctors.

Admiral Russ I do hope you find the right setup for you. Once you get the sleep you should have plenty of energy to spend at the Gym. And you wont be doing as much of this
And dittos on getting your medical records. I would so keep a file of your own, and keep it current.

Today I called my old Dr. office and requested the medical records. I told the secretary that they were for myself. I'm awaiting for the fax to come in. They will need an authorization form. All I have to do is sign it and fax it back.

As for the Gym. I found where it is in relation to my house and I though of going 3x a week in the morning. My wife can drop me off around 8am. Do my workout and take the bus back and walk for 20 mins. Do all of this and get home by 10am to work til 5pm. If I need a nap it's not too late to do so. I want to find a rhythm. Then in January I'm going to start school again. That's if only if I can get this apnea under control.

I really appreciate everyones help. I will NOT go with the tonsil removal til I get a second opinion or third. I have a dog a Mini pin. She loves to walk. As for the CPAP machine. I was thinking of getting the autopap (black unit).

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EENT's need to pay for their Pprsche's too.
My neice is married to an EENT and he says that "everybody in the world needs their tonsil and adenoids taken out, else I won't be able to make the payments on my Porsche".

Anonymous wrote:EENT's need to pay for their Pprsche's too.
My neice is married to an EENT and he says that "everybody in the world needs their tonsil and adenoids taken out, else I won't be able to make the payments on my Porsche".

Admiral Ross,
An Auto is definitely probably your best bet even if you end up turning it to straight cpap mode, because you can use it for a bit in Auto to do your own titration and have an idea where your pressures belong. By the way which black unit? If I had to chose a APAP I'd probably go with M Series Auto CPAP with A-Flex, of course that's because I love my M Series Auto BiPAP with Bi-Flex

Christy