new to this and feeling stubborn

Hello,
I just found out from my doctor yesturday that I have sleep apnea. It seems to run in my family, my father had it and his brother and we are all fairly certain grandma had it too, she could raise the roof snorring.
I requested testing as I had a horrible reaction after surgery last year. I was incredibly confused, hallucinated, and had aphasia for a good four days following the surgery. No one could ever figure out why. I recently remembered that my father had a similar problem after surgery and decided I should be checked.
Even though I sort of suspected it I was still shocked when my Dr. said I tested positive for apnea. My blood ox dropped from 96% to 84% multiple times in the night and I had several other things that I do not remember that led to the positive diagnosis. I tried to talk my way out of a cpap machine but when I told him I was still having chest pain and racing heart beats even after corrective heart surgery he said he could not recommend anything but going on cpap.
I have to confess the thought just makes me feel like digging in my heels and saying NO. I have no idea why. It just seems so abnormal having to wear that mask all night. I dont sleep well anyway with that on I feel like I will never sleep at all.
I also hear stories about people not liking their style of mask or wishing they had gotten a different machine. How do you know what to do?
My life partner just returned home from his sleep test and was told by the tech that during REM his breathing pattern changed significantly but not enough that she was required to put a mask on him. I did a at home sleep test. Anyone else ever do that? It seemed to me to be open to a lot of variences. How reliable are they?
It would be ironic if both my life partner and I needed Cpap at the same time. I insisted he go for testing as he would stop breathing at night. He now is amused that after all of my insisting he be tested I am now diagnosed positive.
I had to close a profitable business several years ago as my thinking became very muddled and the work was so detailed I was unable to handle it any longer. I am hoping that sleep apnea is the root of my confusion problem and that cpap is going to make things more manageable.
Any tips or suggestions about equipment would be great. We do travel some, are these machines easily portable?
Thank you for any help you can give. blueheeler

First off, welcome to the forum! A lot of us here were in the exact same situation as you, and just showing up and posting here is a good sign that you're willing to at least try.

I also had a lot of issues sleeping before therapy. What I'm finding (10 months in) is that the "ritual" of putting on the mask, feeling the slight pressure, etc. is a great trigger for my brain that it is time to go to sleep. I find that it's easier to fall asleep and stay asleep now. Staying asleep is easier to explain, as I'm not choking all night long, and therefore sleep soundly. But falling asleep easier was a pleasant surprise for me.

Many folks here did home sleep studies, and they were at least relatively accurate. I, and others here, can tell you that in-lab sleep studies aren't exactly foolproof either. In either case, if you're seeing lots of apnea events, you need to do something. Your machine can often show you how things are going, if you get a data capable machine - do a quick search in the forums and you'll see what I mean.

Hang in there, this DOES get easier and it DOES get better once you're sleeping through the night.

Dig in your heels and decide you are going to use this machine. Not a one of us would choose to have sleep apnea, but we all should get treatment. Good luck, post with problems. Get that spouse tested.

This sounds sooo familiar! I came into this diagnosis kicking and screaming. I was finally able to turn that stubbornness to a determination to succeed. I've been on my machine a week and am working out the kinks because I want to be here a long time with my family. Like you, my partner (husband) is now being tested and will soon be on a machine too. Lots of two machine couples on this forum!! Stick with us and you'll get lots of support and nudges in the right direction.

Teri

Welcome to the club no one really wants to join. You may find that your sleep issues go away after starting cpap. Yes, it can make sleep harder for a bit, as you adapt to dealing with hoses and the mask and all. It can take up to a couple of months, but lots of us sleep much better once we are breathing better

Attitude is everything - well, that and a decent doctor (at least when starting out, then you can sometimes do without the doc). Search through this site and learn about the different cpap machines, so that you can be sure to get one that will allow you access to your data. Go to the med supplier armed with information so that s/he does not stick you with a lesser quality pap (insurance pays them the same for a good one or a cheaper one, so some suppliers will of course tell you that the cheaper ones are the best out there, or the only one in stock - don't fall for it). You'll also have 30 return policy on masks, so feel free to keep going back and trying masks til you find one that works for you.

It's a great thing that you and your partner are starting at the same time, as you can support each other ("who can keep it on all night first?"). After awhile you'll find that you won't even want to go to sleep without the thing, even though that seems unbelievable now.

I'm from a multi-pap family. It took me quite awhile to adapt to using it (partly because I moved from cpap to bipap to asv in quick succession). My daughter took to it immediately, and had great results - her oxygen sats dipped to 76% during her initial study so she definitely felt improvements right away. Hubby hates his, but was only diagnosed a couple of weeks ago so is still in the adjustment stage.

blueheeler wrote:I have to confess the thought just makes me feel like digging in my heels and saying NO. I have no idea why. It just seems so abnormal having to wear that mask all night. I dont sleep well anyway with that on I feel like I will never sleep at all.

Some folks get lucky and start sleeping MUCH better with mask on their nose pretty soon after they start using a CPAP: After all, with the CPAP we're breathing more or less normally at night and no longer desaturating. Of course, some of us do have much longer adjustment periods with lots of problems dealing with sensory overload caused by the machine. But you just have to work at teaching yourself to sleep with it if you wind up being one of the unlucky ones like I was.

I also hear stories about people not liking their style of mask or wishing they had gotten a different machine. How do you know what to do?

For the mask? You guess and you insist on trying a new one if the first mask proves to be too uncomfortable. And a third mask and a fourth mask and a fifth one if necessary. Try as many masks as you need to in order to find one that works for you. As a general rule of thumb, if you are NOT a big time mouth breather, you do NOT need a full face mask that covers both your nose and mouth. Nasal masks and nasal pillows masks are typically more comfortable and easier to seal than full face masks. If you are a mouth breather, you may still want to try a nasal mask or nasal pillows mask and use a chinstrap or tape if need be.

As for getting the right machine: You need to do your homework BEFORE you sign any paperwork and before you accept delivery for the machine. Start by reading and re-reading What you need to know before your meet your DME by JanKnitz. Lots of good info and advice. JanKnitz also has a guide to Data Capable Machines that is up-to-date and reflects what's on the market now. Under no circumstances should you just "accept" an unknown machine from a DME that you've never hear from before they call you saying that your equipment is ready for delivery. Be proactive NOW so that you get a machine you can live with for the next five years or so.

Any tips or suggestions about equipment would be great. We do travel some, are these machines easily portable?

The modern machines are easy to travel with: Most even come with a bag that stores everything you need in a small enough bag that it's not a problem to drag around. And when you travel by air, the CPAP equipment is supposed to be taken on board with you but it does NOT count towards your carry-on bag limit. Airport security sees enough CPAP machines that it should not be a serious problem.

Finally I want to also recommend that you read a few of the posts on my own blog. First, my Advice to the newly diagnosed may be useful in understanding what you need to do next. Next, if you need help in understanding all the acronyms and terms used on the sleep study report, my Understanding the data in your sleep test will be useful. Finally, since you are worried about all the horror stories you hear about CPAP, you might also want to read through Musing on "I have heard terrible things about CPAP ...'.

Best of luck in your new (mis)-adventure.

My thought is:
Why should I let little defects, like the ones that cause rotten night breathing,
doom me to a short, unhealthy life; when I can DO something about it?
I will kick and scream to KEEP my machine.
I refuse to accept what would have been inevitable a generation ago.
I want the best, longest life I can have; I want it all!

Welcome to the group as well. I have found lots of encouragement and advice here.

It would be ironic if both my life partner and I needed Cpap at the same time. I insisted he go for testing as he would stop breathing at night. He now is amused that after all of my insisting he be tested I am now diagnosed positive.

My wife and I both went on CPAP within weeks of each other. I was the one pushing her to get tested and we made a pact with each other that we would both have sleep studies done. We are both adjusting to the treatment well and sleeping better, learning how not to tangle each other up in the hose, and learning how not to let the CPAP affect relationship.

I had to close a profitable business several years ago as my thinking became very muddled and the work was so detailed I was unable to handle it any longer. I am hoping that sleep apnea is the root of my confusion problem and that cpap is going to make things more manageable.

I have found that I am more productive a work, have an easier time keeping my ADHD and depression under control.

Hang in there and try to keep a positive attitude. My wife and I both decided that this was a wake up call of both of us, we are now trying to live healthier so that we can both be around for a long time to come.

My personal goal for the new year is to get off my blood pressure meds, hopefully with the help of CPAP to get my sleep under control I will be able to do this with the other positive changes in my diet and exercise habits.

Dave

Hello and Welcome. I am a newb too! This is the most helpful place, you will get great advice.

I'm 3 months on the hose (CPAP). I occasionally mention sleep apnea to people I know if it happens to come up in conversation. It's amazing how many people then share about their own sleep apnea or that of a close family member. I don't know why so few people talk about sleep apnea, but that lack of knowledge about the condition is probably why a lot of people suffer from a relatively easily correctable condition.

For instance, I was at a business lunch yesterday and someone asked "Do thoughts about business and work keep you awake at night?".

I thought about it and responded "Thinking of work used to keep me awake, ALL the time. I'd wake up multiple times per night and I wasn't dreaming about work, I was THINKING about work, almost like I was awake and at my desk working through issues. But shortly after I was diagnosed with sleep apnea and went on a CPAP machine, that seems to have stopped. I now believe my problem wasn't work so much as the fact that I wasn't really falling into a deep enough sleep to let go of the issues of the day."

Over time you will find that being on CPAP starts to slowly give you your life back, one piece at a time. Stick with the machine.

Reading this website, you will notice that most of the frustration, understandably, comes from newer people who are still trying to figure things out and adjust.

As time goes on, MOST people adjust to the machine and to the new situation and as an extra benefit, start feeling a lot better in many small ways.

If you are wondering "Can I adjust to the machine and hose?", our great, great, great-grandparents lived "rough", frequently slept outside under the stars, a fancy bed may have been stuffed with straw (and bed bugs), even the typical house from a few hundred years ago is something you and I probably wouldn't dream of actually sleeping in now.

My point is, you can adapt to a lot of things if you choose to. No one likes CPAP, but if you get the right mask, figure out how to manage your hose, how to keep your congestion down when you have a cold/allergies, etc, it is all very do-able. Sometimes we underestimate how easily our bodies and brains can adjust to our environment, it just takes time. You can do this and 6 months from now you will be happy you took control of your own health in this way.

CPAP is not an indication of some kind of weakness or failure, it is just a part of life now and a problem to be solved. Now that I am on CPAP, sleep apnea no longer defines or controls my life. I do have to make adjustments, like lugging the machine with me on trips, but that is a small price to pay for the benefits.

Java Time wrote: If you are wondering "Can I adjust to the machine and hose?", our great, great, great-grandparents lived "rough", frequently slept outside under the stars, a fancy bed may have been stuffed with straw (and bed bugs), even the typical house from a few hundred years ago is something you and I probably wouldn't dream of actually sleeping in now.

I often use the analogy that you sleep in pajamas (most of us anyway) and you sleep on a mattress, with sheets, and probably a blanket or comforter most nights. Your brain just edits them out of your sense perception because it has marked them as "normal" and "safe." Within a few weeks, your brain will edit out the mask and hose too. You'll be aware of them in the same was as you are aware of the sheets or the mattress itself - barely, if at all =)

blueheeler wrote:

new to this and feeling stubborn

I have to confess the thought just makes me feel like digging in my heels and saying NO. I have no idea why. It just seems so abnormal having to wear that mask all night.

That is certainly an option. You probably don't even have to dig in your heels - your doctor is unlikely to be calling to pester you.

Someone with the attitude you currently have is very unlikely to take charge of the therapy and be successful with it; and someone with that attitude is very likely to just drop out after going through some frustration and expense.

It is your life, your health, your choice.

blueheeler wrote:I dont sleep well anyway with that on I feel like I will never sleep at all.

Has it occurred to you the reason you don't sleep well is because of the sleep apnea? The CPAP will reduce the apnea to a manageable level, and so the mask and hose most likely will enable you to sleep better, not "never sleep at all." In your mind you have the cart leading the horse, backwards.

NightMonkey wrote:Someone with the attitude you currently have is very unlikely to take charge of the therapy and be successful with it; and someone with that attitude is very likely to just drop out after going through some frustration and expense.

I disagree. You already are feeling hopeful that CPAP can help you (e.g., with the cognitive issues that caused you to close your business) and you're envisioning the equipment in your life (e.g., wondering how to travel with it).

As others said, no one WANTS to use CPAP. We all just want to be healthy and function well.

I was sure my husband wasn't going to be around much longer with all the symptoms he had and a poor quality of life and was sure nothing could be done for him, so we were grateful when he was diagnosed with OSA and told that there was a treatment for it! Now he has his life back and we both feel secure when he goes to sleep knowing he won't be gasping for breath all night.