introducing myself

[cuziamthecaptain]

Hey Everyone,
I'd figure I'd introduce myself and explain my situation.

I'm John, I live in L.A. -- just turned 29. I'm a psychologist and from time to time I do stage hypnosis shows!

Everything started about 10 years ago right around college time. I got really tired. I heard about sleep apnea in school and went in for a sleep study.
The findings: mild sleep apnea! And that my tonsils were 3x larger than they should be.

But then, I lost some weight. About 10lbs. I was never very overweight-- about 170 at 5'8". But I was at 180-- once the weight came off, I was better able to sleep.

Then, during grad school, it seemed to come back. Even with 7-8 hours of sleep, I would feel tired. I didn't want to go for the cpap and didn't want surgery. I was interested in provigil-- but for whatever reason it didn't help me at all. But I did try adderal. That really worked.

So for about 4-5 years, I've been taking 10mg of adderall/amphetamine salts a day. I've been rather functional. I've also recently taken a decongestant nightly.

Recently, I've been getting more tired. In fact, I took 20mg today, which I really don't want to do. Perhaps I've gotten used to the meds? Maybe I'm just getting older?

I've thought about getting surgery-- but it's a tad expensive. I also think that by now CPAP machines might have gotten a lot more comfortable. I think I'm ready to try it.

But I'm worried I might not be able to get to sleep with the cpap machine. I mean, it took me a week to get used to a sleep mask, and I spent $50 bucks to get the most comfortable one I could find!

I do know hypnosis, so I might apply that and CBT to help acclimate me. And I've decided to invest in comfort-- willing to pay the extra $$ to get a good, comfortable mask for me.

So soon I'll start searching for one.

Anyone know of the percentage of people who are simply not able to adjust to the CPAP machine? Is there a consensus on which cpap machiens are the most comfortable? And any particular advice for us mild sleep apnea sufferers?

Thanks!

[Brushy Hollow Bill]

Have you gotten a machine, or are you holding off until you find the right mask and then you will get the machine. I am confused.
If you had the sleep test then you can go to sleep with a mask on, that is how it works, so I don't understand your fears?

[DreamStalker]

Have you already been diagnosed with sleep apnea? Did you have a sleep study done? Were you titrated?

[cuziamthecaptain]

I don't have a machine or a mask. They are both on my to do list!

As I remember, I was diagnosied with a mild sleep apnea. I do remember having the cpap titration. but right after the sleep study, the weight loss kicked in. That was about 8 years ago.

but nowadays even with weight management it's still hard to be functional without the stimulants.

I was able to fall asleep with the face mask. But I'm just worried because I'm very sensitive as a sleeper. For example, I can't fall asleep if there's any noise or any light. It took me a few days to adjust to a very comfortable sleep mask!

but I guess if I just refuse to take off the cpap mask, I'll eventually just get so tired I'll fall asleep and eventually get used to it. I might also try autogenics/hypnosis.

[Gerald]

"bCuz" you are a psychologist....and "bCuz" you understand hypnosis, you are well aware of the power that your sub-conscious exerts over you.

You need to convince your sub-conscious early on....that CPAP therapy is vital to your health.

What we're talking about is "suffocation prevention".....that's what CPAP machines are for.

The best way to convince yourself of your need to use a CPAP machine is with quantifiable information....hard data....not opinions of someone else. Get your hands on a recording Oximeter....the kind that you wear on your wrist. Wear it for a couple of weeks while you sleep......and print out the report from each night....that shows what your blood O2 saturation levels are doing.

Once you see that you're not getting enough O2, your sub-conscious will help you quickly adapt to your CPAP machine and your mask.

If you decide that you need a CPAP machine, purchase one that is an "auto" (it can raise or lower pressure according to your needs)....a fully data capable machine that will let you run your own miniature-titration EVERY night if you want to. Purchase software and a card reader to go with it.....get a good mask.....and start learning what works.

Don't worry....you'll be a success.

Gerald

[johnnygoodman]

Howdy Cap'tn,

Welcome to CPAPtalk! Regarding surgery, some report success but others report prolonged pain and scar tissue growing back. Here's an extreme example:

viewtopic/t41306/Coworker-died-from-OSA-operation.html

Here's the wiki to check out:

http://en.wikipedia.org/wiki/UPPP

Personally, I would not wish a UPPP on my worst enemy. Then again, I wouldn't wish Sleep Apnea either, so lets get into that.

1. You are taking a drugs to make you feel awake and they are slowly loosing their potency. Be aware that no matter how alert you feel, your heart is working overtime as it suffers due to lack of O2 during sleep. This is how Sleep Apnea kills and you should be aware of the implications of the choice you are making here.

2. I'd say the percentage failure of people who ask CPAPtalk for help and work on it with us is less than 1%. Liam didn't make it. We're well over 1000 that did. Can anyone else name someone who failed?

3. The stuff your insurance company is giving out isn't going to be the most comfortable. Shop the internet for APAPs and high end makes. Also, the people on CPAPtalk have invented CPAP aromatherapy, cheek pads and all kinds of practical hacks to "make it work". Buy these and use them with your high end equipment AND software.

4. There is no hard and fast consensus on what is the best. Here are some common sources of knowledge:

* CPAP.com category star ratings. You can only rate if you've purchased the product, one rating per person.

https://www.cpap.com/simple-find-cpap-p ... ting-CPAPS (APAPs by User Rating)

https://www.cpap.com/simple-find-cpap-p ... lected=104 (Nasal Masks by User Rating)

https://www.cpap.com/simple-find-cpap-p ... opbybrand= (Nasal Pillow Systems by User Rating)

* CPAPtalk.com Product Challenges. These are head to head shoot outs between two products, as voted on and commented on unfiltered by those who them.

productchallenge/

More will fill in behind me and most anyone here can answer your questions. However, I want to leave you with some key points:

1. You can make CPAP work

2. We can help

3. You will live longer and better if you can pull it off

Failing all that, drive down to Houston, teach me to hypnotize people and I'll give you a deal on CPAP equipment.

Johnny

[mikee]

If it's been 8-10 years since your last sleep study you should have a new one. From what i have read OSA does not go away, weight loss may help but the only way to be sure is another sleep study. I have mild OSA and had severe daytime sleepiness and fatiuge. Now with XPAP my daytime falling asleep at work is gone but still am alittle fatiuged. Good Luck

[RipVW]

Hello & Welcome, John! Glad you found this forum—SO much useful info and everyone here is so willing to help!

Machine choices are largely a matter of personal preference when it comes to manufacturer of choice--I prefer my Respironics M Series APAP with AFLEX over others I've tried. Certainly, get a data capable machine. And, I think an Auto adjusting machine is a good idea since it gives you the option to auto titrate and to run in either auto or straight CPAP mode. Good luck!

"You are getting sleepy . . ."

[mars]

But I'm worried I might not be able to get to sleep with the cpap machine. I mean, it took me a week to get used to a sleep mask, and I spent $50 bucks to get the most comfortable one I could find!

I do know hypnosis, so I might apply that and CBT to help acclimate me. And I've decided to invest in comfort-- willing to pay the extra $$ to get a good, comfortable mask for me.

Hi

Welcome to the forum.

As you know CBT then maybe you can stand back and look at your post with a detached professional interest. Do the words "negative" or "awfulising" come to mind. I think Geralds ideas are excellent, but I also suggest you monitor your self-talk about all this, and start to change what you are saying to yourself.

Unnecessary worrying and CBT (cognitive behaivoural therapy) do not go together. But as you know, you have to practice for it to work, theory just does not do it.

Good Luck

cheers

Mars

[cuziamthecaptain]

Thanks guys!

I have the bare minimum insurance, so I'm probably paying this out of pocket.

Since I was diagnoised with mild OSA before (albeit a few years ago) and everything else seems to match OSA, do I need to do a sleep study again?

Is a sleep study necessary to do the titration, or can I figure out the settings on my own? Could I have a specialist look into it?

I'm pretty sure I could get a doc's note to get a cpap, or I could get one online. I'd rather avoid a sleep study just because from what I remember they took forever to schedule, cost a bundle (I'd rather put the money towards the CPAP), and might just tell me what I already know.

[ozij]

I'm all for cpap - but you should be aware that large tonsils can obstruct you airway, and make cpap therapy more difficult, since pushing large tonsils out of the way may take a lot of pressure.

A tonisllectomy is not a UPPP - and I think you should consider it. It may make your cpap therapy more tolerable.

You could get yourself a good data recording machine, and find out the pressure you need on your own - self titrate it. The majority of people do not need the more complex bi-level machines that supply different pressures for inhale and exhale - but some do, especially if they need higher pressure.

Welcome to the forum, and good luck!

O.

[Brushy Hollow Bill]

Thanks guys!

I have the bare minimum insurance, so I'm probably paying this out of pocket.

Since I was diagnoised with mild OSA before (albeit a few years ago) and everything else seems to match OSA, do I need to do a sleep study again?

Is a sleep study necessary to do the titration, or can I figure out the settings on my own? Could I have a specialist look into it?

I'm pretty sure I could get a doc's note to get a cpap, or I could get one online. I'd rather avoid a sleep study just because from what I remember they took forever to schedule, cost a bundle (I'd rather put the money towards the CPAP), and might just tell me what I already know.

I think you need to hynotize yourself into going to the doctor for help. I personally think you are just playing with peoples minds.

[Jule]

I'm new to the forum but not to CPAP/APAP. I've been using it faithfully for over 5 years. In the past 2 years, I switched to APAP but I have a REMSTAR Auto. Initially, there were no parameters on the settings. They were wide open from 4 to 20. Even though my CPAP titration had me at 10. Recently, I requested a retitration to narrow the range. My sleep doctor said that was the whole point of an APAP, to leave it open, but I've read opinions to the contrary, and was uncomfortable when my pressure rose too high. Presently, I'm at a range from 6 to 12. Just curious on everyone's experiences with APAP and their docs. I have a real hard time sleeping in the lab.

[cuziamthecaptain]

I'm all for cpap - but you should be aware that large tonsils can obstruct you airway, and make cpap therapy more difficult, since pushing large tonsils out of the way may take a lot of pressure.

A tonisllectomy is not a UPPP - and I think you should consider it. It may make your cpap therapy more tolerable.

You could get yourself a good data recording machine, and find out the pressure you need on your own - self titrate it. The majority of people do not need the more complex bi-level machines that supply different pressures for inhale and exhale - but some do, especially if they need higher pressure.

Welcome to the forum, and good luck!

O.

If I don't naturally have a large neck and I am not obese, might it be that the sole problem my tonsils being 3x too big, and so a tonsilectomy might completely resolve the problem, such that I wouldn't need the CPAP?

I was hoping I could have or the other-- hope to hell I don't need both a tonsilectomy and CPAP. Would a sleep study figure this out for me, or perhaps an ENT?

Are there variations of the CPAP that can comp for enlarged tonsils?

Thanks!

[robertmarilyn]

I'm new to the forum but not to CPAP/APAP. I've been using it faithfully for over 5 years. In the past 2 years, I switched to APAP but I have a REMSTAR Auto. Initially, there were no parameters on the settings. They were wide open from 4 to 20. Even though my CPAP titration had me at 10. Recently, I requested a retitration to narrow the range. My sleep doctor said that was the whole point of an APAP, to leave it open, but I've read opinions to the contrary, and was uncomfortable when my pressure rose too high. Presently, I'm at a range from 6 to 12. Just curious on everyone's experiences with APAP and their docs. I have a real hard time sleeping in the lab.

I don't really think "the whole point of an APAP, (is to) to leave it open". I got sent home with my machine set on 4-17...I couldn't even breath well with the pressure set below 8 and I was titrated for 14 anyway...so to have to start out at 8 seems way too low. Sure, it is easy for the doctor to send us home with a wide open range and "let the machine take care of it" but it isn't in the best interest of most patients. We have to live with these machines, they don't. (BTW, I think my titrated pressure of 14 was just a guess since my titration study was a mess of problems).

So it is good that you are interested and learning about your machine and your sleep apnea problem. Although my doctor told me I should not have done it and that I'm not supposed to have done it, I found out how to read and change my machines settings...he did say I did an excellent job of setting up my narrower pressure range and wanted to know how I knew how to do that....he really doesn't seem to grasp the idea that a patient can learn to understand and interpret our machines and the data...esp not as quickly as I learned how to do so...but I just took the time to do it...I knew I wouldn't be feeling better without me taking control of my therapy...it was in my best interests to learn all I could because no one else was going to care that my therapy wasn't as good as it could be.

For the record...I still have a ways to go before things are working well for me. I might need another brand/type of machine...for now I'm using the machine I have and will be having another sleep test in a few weeks...then I may be changed to a bi-pap machine...I seem to have helped my acid reflux problems (brought on by XPAP) with meds, I'm having no leak problems with the mask I use now, I use a chin strap to keep my mouth closed...all these things will make my next sleep test more helpful because my last one was marred by acid reflux events, no REM (so many things were going on that I couldn't get close to sleeping well), very ill fitting masks and more. It should make a world of difference in my comfort level to have so many of the previous problems fixed and that I am now a used to using a machine all night, every night. I'm going into this next test with the thoughts that things will be set up to get meaningful readings this time.

If you decide venture into changing your own settings, before you do, learn all you can because I think it is important to know why we are making the changes we make. In fact, learning as much as I have has helped me to deal with my doctor. Too bad he is so stunned that I can talk about my machine and data and sleep apnea on his level...if he would just accept that patients can be very informed and knowledgeable about the subject, I think therapy would improve for the patients that want to be accountable for their sleep apnea treatment.