Hi, I'm new and want to give up

Hi Ozij,

I'm sorry hubby comes across as so unsupportive, it's not quite like that. It's just that I did show him youtubes with some terrible footage and he has not experienced seeing me do anything like that. I have explained some people apparently don't snore, but more commonly it seems, they do. He's seen all the paperwork from the specialist, but if it wasn't for that, even I would have my doubts. Except for the fact I feel half dead most of the time.

I take about 20 vitamin and mineral tablets a day just to try and have some energy. I was very hopeful when first started cpap but two months in, I still feel worse every morning which is why I've stopped using.

Thanks for all your comments,

Deb

Some people take a long time to feel even the smallest improvements. If you post the exact problems you are having we can help you get to where you do feel better. I don't think any of us LIKE the fact that we have OSA, I know I don't. But I do have it and I NEED to use the mask and machine so I do. I was told that I didn't fit the profile at all when I went for my tests. I was lucky and saw results right away and once I got my settings right(with the help of forum members), I felt GREAT! More than 2 years later I still feel great and have plenty of energy.
No matter how many vitamins you take, it won't replace the sleep you need to get. Unless your husband sits up all night timing every breath, he is not able to tell if you have sleep apnea.

Brenda

debtheveg wrote:To try and sleep better, over the last couple of years I've been to a hypnotherapist, a naturapath/herbalist, had several months of acupuncture, learnt Buddhist meditation, bought a new mattress and tried many pillows, etc.


How much money and frustration did all that cost???

I know this is a serious condition but I just feel so annoyed that I have to deal with it.


I was just feeling so annoyed that I was dying a slow death.

I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA. Almost obsessed analyzing their stats every morning and so on


...gee, I'm so enamoued w/living and having energy and having a life,
and I can be in charge of making that possible......I'm obsessed w/my health.....
what a puzzle.

I take about 20 vitamin and mineral tablets a day just to try and have some energy...


been there,
done that,
have the t-shirt.

ozij wrote:Because poeple want a better quality of life now.
We are accepting of the need to have it treated, glad the possibility exists, and aware that there are some far more horrid conditions.

ozij, very well said. I am so thankful everyday that I was diagnosed and
I have that mask to put on evernight.

The psychology of cpap involves personal introspection, which is difficult
in many cases and down right scary to some. CPAP requires one to
step outside their routines and comfort zones, and in some cases
to leave them behind, for good.

I think many that start cpap suffer from a low frustration tolerance.
It may be wise to forcefully bring your LFT to the surface, and realize
that without consciously and deliberately enduring various kinds of discomfort,
you have little chance of changing your situation.
Blame the delaying of your therapy efforts but never blame yourself
for this delay. Blame the mask. Blame the noise of the machine.
I overcame my LFT through my desperation for some relief from the
chronic fatigue and pain I had lived w/for years.
It is pointed out here time and time again, that the discomfort of
the mask is, infact, small compared to the affects of OSA.

debtheveg, maybe your chosen name is telling about how you view yourself.
There may be an important message there, for you.

THANK YOU! for posting your thoughts.
They provide the picture from where I have come,
and that I am indeed, on the correct path.....
that the discomfort, frustration and "annoyance",
has been well worth the effort.

Deb,

There is a very simple reason why the people on this board are so much in favor of CPAP. Because it works. Pre Cpap I was, literally, a walking zombie. I would delay going to bed as long as I could because I knew it would just be a struggle to grab a few hours of broken, fractured sleep. I would actually fall asleep at the wheel of my car, waking up as I hit the shoulder. I'm not talking every once in a while, I mean on a regular basis, at night and during the day. I had to find a hiding place at work where I could catch a few minutes of sleep just to make it through the day. I hated doing it, felt guilty about it, but it was that or drop off in spite of myself. My dreams were fractured and jittery, with a recurring underlying theme of choking or drowning. When I woke up in the morning, I felt no better, often worse than when I went to bed. At times I slept as much as 14 hours, got up, sat in my recliner and dozed for another two, and still felt rotten.

Starting CPAP has been lifechanging for me. Since I started I have never, not once, felt drowsy at the wheel, even after being up for 20+ hours. I no longer wake up with the sheets soaked and wrapped in knots from me tossing and turning. Work is much better, no more naps required. I have a lot more patience than I did. And for the first time in my life I actually look forward to going to bed early and getting up at the crack of dawn. My whole life I thought I was a natural "night owl", but with CPAP I have learned to be a "lark", or at least a semblence of a morning person. Even on the days I didn't feel great, I knew that I was helping myself with this treatment, because even a few hours of sleep with CPAP was a time that my body was not being damaged by lack of oxygen, blood pressure spikes and racing heartbeat that resulted from my breathing stopping. I was giving myself a chance to heal.

You are right about being obssesive about data. Leak rate and AI are, IMHO, the most important and relevant numbers, but the more data you have the clearer your path to recovery. One can just strap on a mask and leave the machine where it was set by the DME and accept the results one gets. But if by accessing data I can tell, for example, that I leaked alot last night which resulted in an increase in the number of apneas I had, which made me feel worse than the night before, then I will know to do something to address the leaks and get back to feeling better, which without data I would not know. Tracking data over time is helpful too. When I first started CPAP I had only the data screen on my Elite, so I kept a sleep diary for the first couple of months. On the days when I was struggling I could almost always find something to be upbeat about, lower leak rate, lower AI, etc.

One other reason I am so accepting of this treatment, and think so highly of it, is the fact that it is very non-invasive. There are no pills to take, no operations, no injections, minimal risks of infections, little danger of complications, the list goes on. The worst things about CPAP therapy are really its inconvienences. It is a PITA to get used to. It can take a lot of tweaking to get just right. It can be spendy, but even without insurance if you are a careful shopper it is doable. It does take a bit of discipline and determination to make it work. But it has improved my life a great deal. Even if I have a bad night, or a bad string of nights, just a couple of nights of with low numbers and 7-8 hours of sleep and I am better again. It is a lifestyle change. You have to practice good sleep hygiene. You have to learn to tweak and adjust and change your equipment and yourself. It sounds like your husband still needs more education and coaxing. If you can take charge of your therapy and improve your life, and he sees that improvement, that should be all he needs to convince him. You could also print out some articles in the "Our Wisdom" under the struggling user section and ask him to read those. I was lucky, my wife has been wonderfully supportive, but I snored like a frieght train pre-Cpap, so it has been a blessing for her as well.

As before, I strongly urge you to unpack your CPAP and keep trying. Register your equipment so people can give you intelligent advice regarding its use. Return to the forum and the chat room often for advice and support, because everyone struggles. After everything you have done and are doing to try to feel better, you should give this method, which is the proven treatment for your diagnosed condition, every chance to work. I hope the best for you and your husband.

Alan

I understand how frustrating it can be - I've thrown my mask across the bedroom in the middle of the night a few times! Coming from the perspective of having multiple chronic conditions, I'm grateful that this is something that can be treated non-invasively and with no pills. It is a pita, especially at first. It took about 6 months for my fatigue to improve. It's been over a year now and here's how much things have changed:

* I used to feel totally exhausted by Wednesday morning at work. Thursdays and Fridays were hopeless and I spent the weekend doing nothing but recuperating. Now I usually still have some energy left over Friday afternoon!

* I still have some occasional leak problems and I do have several masks "ready-to-wear" in my bedside drawer. So if I get too frustrated (I have a very low frustration threshold), I just switch masks. Just recently I've developed enough patience that I can fiddle with the mask for a few minutes and can usually get it fixed.

* It's not a cure-all for everything I've had but I've noticed that my inflammatory markers in my blood tests have gradually been dropping.

I've learned huge amounts from this forum with the many knowledgable folks. Many tips and tricks (the lab rat awards are priceless!) and also inspiration from hearing that others have similar problems but have overcome them or learned to live with them.

Think about it this way: you're worth it! If you make the effort and learn to deal with the frustrations and get this therapy working (with lots of help), you'll be improving not only your energy levels now, but also your future health.

So I really hope you can stick with it!

Mindy

debtheveg wrote:Hi again,

Appreciate all the input but the one thing I don't understand is, it seems you're all so accepting of this horrid condition. I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA. Almost obsessed analyzing their stats every morning and so on.

I don't know why everyone isn't jumping up and down and demanding a cure be found for sleep apnea. Is there much research going on in this field? Surgery seems very dubious at best. The CPAP machine has only been around since the '80s, before that severe cases required a tracheotomy, so I guess the cpap is preferable. However, so many people are making a lot of money from OSA sufferers, with all the sales of machines, masks etc. The doctors, sleep labs and so on. It just worries me that there may not be much incentive for a cure to be found, or an effective surgery.

In case you haven't noticed, I very cross about the whole thing!!!

Deb

I hear you! And, the same could be said for many conditions that pharmaceuticals profit from. Funding has to come from somewhere and as you pointed out those in the business make money from providing therapy equipment. A business such as these, another business, or people would have to get enough money to fund studies for alternative solutions. This takes intent and time. I hope I live long enough on the wonderful therapy I'm getting now to see it : )

As for the dental thingy, I've only tried one, the kind that you put into hot water so that it can be moulded to fit your teeth. I used it only a couple of nights, waking at some point during the night with my front teeth hurting. I have a bit of a recessed jaw, and the dental thingy works by pulling your lower jaw out using the 'pull' of pressure on the front teeth. That pressure hurts the front teeth. My dentist said he knew of another dentist that makes custom ones with magnets to do the pulling. Too expensive for me if it didn't work. Not sure that it would really help my apnea anyway, as it is severe.
I've been on cpap for a little over a month now and this forum has helped me tremendously. I also keep the hose under the covers to aid in keeping the warmed air from condensating and causing water droplets at my nose. Someone here recommended the snuggle fleece cover for the hoses, and even the nosepieces, as well as keeping it under covers, and it has worked wonders for the rainout. For one thing, if the hose is covered in fleece, it feels better that just that plastic hose so I don't notice it as much.
It takes a while to get used to the cpap and masks. I have felt like giving up at times, but prefer to have a better quality of life, and hopefully a longer life, by getting used to it.
Hang in there!

debtheveg wrote: Appreciate all the input but the one thing I don't understand is, it seems you're all so accepting of this horrid condition. I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA. Almost obsessed analyzing their stats every morning and so on.

It's not quick, not for everyone anyway. I am new to the whole thing and am constantly frustrated by not finding answers to my questions. I ask questions of the respiratory therapist, the techs, the nurses, and go to Google and can't find anything. That's why this forum is here, because there are hardly any resources and we have to be our own advocates. That means we have to pay attention to every little thing, which I guess maybe sounds like obsessing.

debtheveg wrote:I don't know why everyone isn't jumping up and down and demanding a cure be found for sleep apnea.

There's never going to be a pill to cure sleep apnea, and probably never a surgery that will work on everyone. The physiology of the condition makes a quick fix impossible.

Keep in mind that sleep apnea wasn't even considered a serious issue until recently. My dad had OSA his whole life and no one ever said it was a condition that needed to be dealt with. No one in the medical field cared, not even my mother who was nurse. Even now people -- including some doctors -- think sleep apnea is something that fat people "give themselves" or it's just for middle-aged men. The other day I heard someone on a talk radio show say that only drunk old men got sleep apnea! It would be nice if the condition was more understood, but sadly we're not there yet.

The medical industry does make a lot of money off of our pain, that's for sure. And I'm positive a lot of changes for the better could be made, so I am in total agreement with you there.

At some point we all have to just accept that this is where we're at and deal with it. With both my parents I saw far too much denial, which caused early deaths for both of them and other issues that continue to haunt me to this day. I decided long ago that I was going to deal with reality head-on, at least as much as I could. Not everyone wants to do this, not everyone needs to do this, and not everyone is a pigheaded stubborn old broad like I am We all have to find our own way.

I do hope you decide to try the CPAP again.

On top of all this, my husband doesn't believe I have OSA as he says I don't snore and he's never heard me stop breathing. We've been married 33 years, so he should be aware if I snore!


I don't usually snore but do occasionally. You don't have to snore to have OSA and maybe your husband is sleeping to soundly to notice if you stop breathing.

It's your health and you need to decide whether quitting and putting yourself at risk for heart attack to stroke is worth it. Just because someone else thinks it may not be necessary doesn't make it so. They just don't have all the facts. There is another possibility. He may be in denial because he doesn't want to believe you stop breathing while sleeping. Maybe this scares him? No ones wants to think someone they love could have anything serious wrong with them.

I would encourage you to continue therapy and take charge of your own health.

Anne

Well I do snore and my husband, who has been using cpap for 6 yrs now, was complaining about it so much that I went to the dr just to get help with the snoring. I would question my husband whether I held my breath or gasped, and he said that I did not...Well, after the sleep study recommended by the dr I found out that I have OSA over 50 times per hour! And that's not counting the central apneas! So spouses are not to be counted on for accurate diagnosis. I was the one who prodded hubby to get the sleep test because it was obvious to me that he had OSA. I never dreamed that I had it, too. Your husband might want to consider having the sleep study on himself. He might be very surprised.

There's another newbie post in this forum about a wife who actually unplugs her husband's cpap during the night because she claims it keeps her awake. Spouses really need to get educated about the OSA as well as the 'victim'.

debtheveg wrote:Hi again,

Appreciate all the input but the one thing I don't understand is, it seems you're all so accepting of this horrid condition. I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA. Almost obsessed analyzing their stats every morning and so on.

I don't know why everyone isn't jumping up and down and demanding a cure be found for sleep apnea. Is there much research going on in this field? Surgery seems very dubious at best. The CPAP machine has only been around since the '80s, before that severe cases required a tracheotomy, so I guess the cpap is preferable. However, so many people are making a lot of money from OSA sufferers, with all the sales of machines, masks etc. The doctors, sleep labs and so on. It just worries me that there may not be much incentive for a cure to be found, or an effective surgery.

In case you haven't noticed, I very cross about the whole thing!!!

Deb

Deb,
If my obsession with the data helps me stay healthy I'll obsess
also if it keeps me mentally alert longer than I would have been without it
also if it allows me to keep employed I'll even obsess a bit more (I love my work)
Not everyone needs to get into the data to excess but for some of us it beats what we might be getting from some in this profession.

Good luck with your own life - for many of us, CPAP therapy helps reduce the luck factor greatly

DSM

debtheveg wrote:Hi again,

Appreciate all the input but the one thing I don't understand is, it seems you're all so accepting of this horrid condition. I'm not being judgmental, just puzzled how everyone seems to quickly get into knowing all the ins and outs of OSA. Almost obsessed analyzing their stats every morning and so on.

I don't know why everyone isn't jumping up and down and demanding a cure be found for sleep apnea. Is there much research going on in this field? Surgery seems very dubious at best. The CPAP machine has only been around since the '80s, before that severe cases required a tracheotomy, so I guess the cpap is preferable. However, so many people are making a lot of money from OSA sufferers, with all the sales of machines, masks etc. The doctors, sleep labs and so on. It just worries me that there may not be much incentive for a cure to be found, or an effective surgery.

In case you haven't noticed, I very cross about the whole thing!!!

Deb

The alternative to not accepting our condition is a poor quality of life and likely premature death ... horrid? ... there are many more conditions that may fit that term but OSA is not one of them.

Some people are just more obsessed with staying alive than others ... I just don't see why more people are not more obsessed about treating their OSA

You guess CPAP is preferable to tracheotomy ... well that would explain your attitude

There is effective surgery but are you willing to ... uhh accept the side effects of say ... a tracheotomy or to have your tongue removed?

What I have noticed is that your post indicates you need an attitude adjustment. Perhaps you need a visit to your local hospital to see how other people cope with their much more horrid conditions?