UPDATE: Two weeks with new pressure -- a few issues

[Lori Dawn]

Hi, All!

I wanted to do an update, as I haven't posted since I received my SHINEY NEW APAP fifteen days ago today! I have been doing well with the new pressure, up from 8 to 14 two weeks ago. I do THINK I feel, MAYBE A BIT, better... but I also think that, since I also have data for the first time, it may be a psychological effect, because my numbers are, HAPPILY, GREAT! Mostly less than 1.0 every night, two or three nights being less than 1.5. And better is better, isn't it? So I'm happy with that for now! Based on that, I have kind of started thinking of my start date this time as being two weeks ago, instead of two and a half months ago, since I'm guessing I was never at the right pressure for optimum therapy. No way to know for sure, except that I felt NO better before the increase in pressure, or during either of my other two attempts on CPAP in seven years.

My mask was sealing just fine and was comfortable. But it's been leaking a little in the the past several nights, not enough to register a leak, but enough to wake me up sometimes. I have not changed the adjustment much since I got this mask two and a half months ago, and it was sealing fine. I'm thinking this is because the headgear may have stretched some? I did tighten the neck strap last night, and it seems to need to be MUCH tighter than it used to need to be to seal, to the point of hurting a little in the morning. And it's also leaking into my eyes, just a soft, little breeze that's driving me a little CRAZY, and that wasn't alleviated at all with the headgear adjustment. I do wash the mask every day. If I loosen it even a little, it starts leaking from the sides, too. I'm not sure what to do about that. Could it be that I need a new liner? It's two and a half months old.

I am getting tired of the FFM... What's bothering me most now is, it seems to be too "up in my eyes." Like it's pulling on the sensitive area under my eyes, from the "baggage" area into the corner of my eyes, making my "bags" appear bigger and more pronounced than ever before, and my eyes water A LOT in the morning. That's a new sensation, that's been happening the last several nights, even before the adjustment last night, and today it's real sore in that area.

I'm thinking I may try a "hybrid" that I've been hearing people talk about. (I am a mouth breather, but I think I could learn/want to learn to breathe through my nose exclusively someday, as it's much better with much less stuffiness now after using saline and Flonase daily.) I want to work towards being able to tape my mouth shut and use nasal pillows or something in the future. Right now, I just can't depend on my nose to stay clear all night, and I'm afraid I will wake up not being able to breathe. I'm hoping to get some suggestions on the "hybrids." Baby steps. Thank you in advance for any input!

I have gotten a whole lot farther this time than I have in the past already. I know I need to be patient and keep working on issues as they come up.

I wanted to ask about comments made by many here, but specifically one on a thread by napstress, a comment made by Mary Z, I think yesterday or today:

I think it's tougher for those who have gotten used to never feeling 100% over a long period of time.

I just was wondering if anyone has a theory on, after suffering for 40+ years of OSA, if there seems to be a correlation to taking a long time to feel better? I have figured out that I have probably been suffering from OSA my ENTIRE LIFE. I was telling my sleep doctor that when I was a teenager, I could sleep 12 or 14 hours and STILL fall asleep in class... LOL! She said that in all likelihood, I have had it my whole life, having grown up with a deviated septum, (rhinoplasty when I was 17 and then got hit in the nose three weeks later.) Also, I have the whole small jaw, orthodontia situation that has been discussed here. Had a huge overbite, 16 permanent teeth pulled (also genetically had TOO MANY teeth), and am left with 22 VERY STRAIGHT teeth, and a VERY SMALL mouth. The sleep doctor said that I have no clue what it's going to feel like to feel better. And I do feel a bit better, but not anything to write home about. I am 48 next week, so I'm thinking I am probably one of those people who is going to have to wait a good while to see a significant difference?

I am pushing myself to exercise, starting out slowly being VERY OUT OF SHAPE physically, after having slept MOST of my life away. I have started walking with a goal of 10 minutes a day, to start with, and some physical therapy exercises given to me after a car wreck in October 2010. I have pushed myself past the point of exhaustion many times before, not knowing I had OSA, or ignoring that fact in recent years, and the crash is NOT PRETTY! I also have begun to eat better, following a pre-diabetic diet. I am not pre-diabetic yet, but I have been told that I am on the upper end of the scale, very close. I am trying to smooth out any blood sugar spikes and drops, which I know can contribute to feeling tired, and to diabetes progressing. I SURE DON'T WANT THAT!

I am a very positive person, or strive to be, but I'm not a very patient person. BUT I AM COMMITTED to making CPAP work this time. I AM SO VERY TIRED OF BEING TIRED! I've been enthusiastic about this new start, but it's beginning to wane a bit. I want to STAY MOTIVATED! Any advice on how to stay motivated in the face of not feeling much better would be MOST APPRECIATED!

I am not, by any means, close to quitting at the moment. But I know myself, and I just don't want to wake up one day, like I have the TWO other tries in the past, and start thinking it's just not worth it. At that point, I know I will need to remind myself that because of X and Y, and other people's experiences, that it will probably take a while. You know what I mean? I plan to copy/cut/past any comments on that subject to something I can print out and put around the house, maybe, to remind me, if/when that time comes. I am just thinking ahead on this, knowing what I know about myself and feeling my enthusiasm go down some.

Sorry for the EXTREMELY LONG POST! It became way longer than I had intended!

Thank you so much for any input you can give. You-all have been SO HELPFUL to me already!

[Breathe Jimbo]

After all those years, you may have a huge sleep debt. That will take a while to pay off.

Costco has a great deal on a two-year membership to 24 Hour Fitness. Much cheaper than anything you can get online or in the gym. You buy a certificate at Costco and then redeem it at a local 24 Hour Fitness location, but minor limitations ("Active" level and below). Before I bought the certificate, I called my local gym and confirmed that I could use the "Costco certificate" at that location (an "Active" gym).

I am now using an iPhone app called LoseIt! to track my caloric intake daily. Frankly, I was stunned to learn that I was probably consuming 4000 calories a day beforehand, and pleasantly surprised to see just how much I can eat (a lot!), before exercise, and still lose a pound a week.

No, I have no financial interest in Costco, 24 Hour Fitness, or LoseIt! Just sharing what I learned recently.

[Lori Dawn]

Thanks, Breathe Jimbo!

I am intrigued by the sleep debt thing. I know there's no way to tell, but I am sure my sleep debt is HUGE! I already have a membership to a fitness club here in our small town. No 24-hour fitness around here, sadly. I am planning to start working out there, but I want to start out slowly and will probably move to the fitness center when it gets to hot to walk. I don't have an iPhone, but I have found a website I like with diet tracking information. It's sparkpeople.com. It is amazing when you start tracking that stuff and see that it's not so hard! I have learned a whole lot from that site about nutrition in general, and I have never had the best diet in the world. But like I said, I am desperate to feel better, and am committed to doing whatever it takes. Thanks so much for your response!

[dtsm]

After all those years, you may have a huge sleep debt. That will take a while to pay off.

As long as you continue to hit your numbers, you will eventually feel better. It may take a few months...be patient. At some point you might want to migrate to a nasal pillow, with a chin strap and/or tape. More for comfort. It isn't unusual to change masks.

Just take it slow....

[Pugsy]

If you are wanting to try a Hybrid, give the Innomed Hybrid a try. It comes with 3 cushion sizes and 3 pillow sizes.
The ResMed Liberty comes with one cushion and you must choose the size either small or large. It does come with 3 pillow sizes though.

Hmmm. Motivation to continue when we don't perceive marked improvements that we desire.....we all have different needs for validation.
Can I share what I used when I saw the "good numbers" but didn't feel like running that marathon?

I knew that I had Oxygen level drops to 73% before cpap. That does a lot of damage to the body that we don't see readily.
So I accepted that effective therapy was at least preventing further damage and hopefully repairing old damage. If for no other reason preventing that heart attack or stroke kept me pretty motivated.

Then I had nocturia prior cpap therapy. This was the very first sign that there was some improvement. No more pee breaks every hour on the hour. So at least my sleep wasn't disrupted for that reason. Plus my heart wasn't working so hard and that stress hormone wasn't causing the kidneys to go into overdrive. Again, I was preventing further stress and damage to my body. I am good with that.

Morning headaches.. Prior to cpap. Every day at least a moderate headache and often some killer headaches. With "good numbers" I saw a significant reduction in those headaches and also severity. Not total elimination but I understand that I have a bad cervical spine and not all my headaches were likely OSA related. Cpap can't fix something that is wrong if it isn't related to OSA. Sure wish it did though..

General fatigue.. That one I am still working on. No overnight miracles for me but then I realized that I am pushing 60 years old and my body is feeling the effects of some serious pain issues. My sleep was still fragmented due to pain. Remembered that ANYTHING that disrupts the normal restorative sleep cycles is going to mess with how I felt even if I didn't have OSA. Cpap can't fix everything, though I do think that it did allow me to cope with the pain better which in turn does limit the pain cycle somewhat.
I just kept plugging away with different solutions to try to decrease pain, decrease the sleep fragmentation and very gradually I began to see some energy level increase. I still need a nap every now and then even when I have a "good night".
Do I wake up and want to run a marathon? Heck no. But then I realized that at my age and body condition even without OSA I wouldn't want to run a marathon. At least when I wake up now I don't feel like I just ran a marathon.

So all this is a long way of saying that you have to take a hard look at yourself. Is fatigue the only symptom of OSA that you have? Are there any other even slight improvements that you can look at? Are there any other factors that could possibly be contributing to the fatigue? There are a ton of them that aren't even related to OSA.

Pick out some positives to go along with those "good numbers" that you don't feel as much as you would like.
Did your oxygen level drop? Hey, at least that further damage is being prevented and likely being repaired.
Any little thing that points to cpap therapy working, even if small.
Don't compare how long it took Joe Schmoe to feel better. He didn't have your body. No one but you has your own particular set of cpap baggage to carry. Use us as a guideline if you wish but don't base your goals on my results or Joe Schmoe's results.

Sometimes those positives are hard to find, small and scarce. Negatives are always easy to find.

One final positive that is always there whether we perceive it or not. The "good numbers" validates my desire to do the best I can to PREVENT that heart attack or stroke that comes up short and leaves my body here and my mind gone. It isn't a pretty image and I sure don't want to think I might endure that end just because I gave up when cpap didn't make me feel like running a marathon.

[msradar65]

Lori,

Glad to hear you are starting to feel better. Have you thought about trying Curves? I have a membership and I love Curves plus...and its a really good workout!

I use my Fitness Pal. I have it on my computer and on my Android phone. The Android phone app was free. I really like it.

Oh, let me know when you get the mask liner? I hope it works well for you.

[Lori Dawn]

Breathe Jimbo wrote:
After all those years, you may have a huge sleep debt. That will take a while to pay off.

dtsm wrote:
As long as you continue to hit your numbers, you will eventually feel better. It may take a few months...be patient.

Yes, I am trying hard to be patient... Hard for me, but I'm trying. I do see these statements over and over on the site, and it does help to know that others experience the same thing, and that it's a well-known thing. I know everyone's different, but I have seen some say it took years. I hope that is not the case for me. Thanks for your response, dtsm!

Pugsy wrote:
If you are wanting to try a Hybrid, give the Innomed Hybrid a try. It comes with 3 cushion sizes and 3 pillow sizes.
The ResMed Liberty comes with one cushion and you must choose the size either small or large. It does come with 3 pillow sizes though.

Thanks, Pugsy! I will start a list of masks to check out.

Pugsy wrote:

I knew that I had Oxygen level drops to 73% before cpap. That does a lot of damage to the body that we don't see readily.
So I accepted that effective therapy was at least preventing further damage and hopefully repairing old damage. If for no other reason preventing that heart attack or stroke kept me pretty motivated.

Yes, I had those too, not quite as bad in the most recent study, 80%, but in the study before that it was 75%. So I can point to that as a plus, even if I can't see it.

Pugsy wrote:
So all this is a long way of saying that you have to take a hard look at yourself. Is fatigue the only symptom of OSA that you have? Are there any other even slight improvements that you can look at? Are there any other factors that could possibly be contributing to the fatigue? There are a ton of them that aren't even related to OSA.

I'll have to look at those questions more closely and think hard about them. I do not believe I have other symptoms, that I can feel, anyway, other than extreme fatigue. I have never had many headaches. Do not wake up at night, usually. Mask problems have increased waking recently. I have no pain that keeps me from sleeping. Nothing usually keeps me from sleeping... I'm REAL good at that! I have been through every medical test there is, some of them three and four times, by three different doctors, including a chronic fatigue doctor, to determine why I'm so tired, and all anyone can come up with is OSA, and my slow approach to diabetes. So I suppose I am pretty healthy, in spite of probably having OSA all my life, so I can look forward to, when I do start to feel better, a better quality of life than I ever had before, I would think, even better than I had when I was young, even though I am getting "older." Maybe I will start to feel young again! LOL!

Pugsy wrote:
One final positive that is always there whether we perceive it or not. The "good numbers" validates my desire to do the best I can to PREVENT that heart attack or stroke that comes up short and leaves my body here and my mind gone. It isn't a pretty image and I sure don't want to think I might endure that end just because I gave up when cpap didn't make me feel like running a marathon.

Yes, that is a strong motivator by itself, along with maybe slowing the onset of Type 2 Diabetes. Thanks, Pugsy, for your thoughtful response!

msradar65 wrote:

Glad to hear you are starting to feel better. Have you thought about trying Curves? I have a membership and I love Curves plus...and its a really good workout!

I use my Fitness Pal. I have it on my computer and on my Android phone. The Android phone app was free. I really like it.

Oh, let me know when you get the mask liner? I hope it works well for you.

Thanks for your response, msradar! I was a member at Curves years ago, but now I have a membership at a small health club in the small town where I live. Not many choices here, but I KNOW I need to exercise. It's just so hard with no energy. I am hoping that exercise will help me start feeling better faster. Certainly can't hurt! And I will let you know when I get the mask liner! Thanks so much for that!

[Pugsy]

Maybe I will start to feel young again! LOL!

I sure hope that you do attain this goal. I can sure understand wanting it. I wonder sometimes just what is the "other" history in those that do have those "aha" mornings or overnight miracles. Are they younger and/or just have less baggage to get rid of? I never had the brain fog that people mention, so I can't go by that. Your main thing is general fatigue. I would probably say that has been my hardest challenge also. Though I did have some of the other classic symptoms that I could use as a mile marker.

I will say that I have had a few of those "miracles". Probably just enough to keep dangling that carrot in front of me. In 2 years of 100 % compliance and "good numbers" I can probably count them on both hands. Had one about the 3 month of tx mark. To be honest it mostly has just been a very gradual and slow improvement. Like the first 6 months I still strongly felt the need to nap daily. I was discouraged till I realized that at least I didn't need to nap at 8 AM anymore. Just small stuff that we don't see because we are looking for that big miracle feeling that others report.

You had no therapy and ineffective therapy in the past. We really have to start counting from this recent change in pressure and your new resolve and that has only been 2 weeks now. I would wager that if we revisit this discussion in 6 months you will have seen some changes happen that you didn't think would happen because you can't see them now. Will they be huge? Who knows. We can always hope though. And if not, I will still be preaching the "preventative" sermon. Heaven knows I know it by heart now.

[Lori Dawn]

Pugsy wrote:
I sure hope that you do attain this goal. I can sure understand wanting it. I wonder sometimes just what is the "other" history in those that do have those "aha" mornings or overnight miracles. Are they younger and/or just have less baggage to get rid of?

I guess that's the $60,000 question, isn't it? I SURE WOULD LIKE TO KNOW THE ANSWER TO THAT!

I never had the brain fog that people mention, so I can't go by that. Your main thing is general fatigue.

I do have terrible brain fog.... so much so that I have had to take temporary disability in the past because of it. But I always thought of that as being the same as being extremely tired, only mentally, what I like to call "brain dead." That's the reason Padacheek nicknamed me -- Lori "Queen of the Fog" Dawn.... LOL! So I guess that would be a SEPARATE SYMPTOM that I can really watch and take note of! Maybe I will feel a difference in that first before the energy thing... who knows?

Pugsy wrote:
I would wager that if we revisit this discussion in 6 months you will have seen some changes happen that you didn't think would happen because you can't see them now. Will they be huge? Who knows. We can always hope though.

Okay, Pugsy, let's do! I am going to put it in my calendar to remind me, six months from today, which will be November 11, 2011! You've got a date! I will dig up this thread in six months and repost my results! I think I will also start making notes of good things to include in that post! GREAT IDEA! Thanks, Pugsy!

[Pugsy]

Okay, Pugsy, let's do! I am going to put it in my calendar to remind me, six months from today, which will be November 11, 2011! You've got a date! I will dig up this thread in six months and repost my results! I think I will also start making notes of good things to include in that post! GREAT IDEA! Thanks, Pugsy!

It's a date. Now you absolutely have to stick it out at least 6 months. I am sneaky...

Do start keeping sort of notes about things. I didn't know about the brain fog. There may be other symptoms related to OSA that you have that I haven't mentioned. Heaven knows there are many of them. I was hoping that my blood pressure issues would disappear, not so, while it improved I am still borderline needing meds. Others have been able to reduce or go off meds. The only thing constant we can say about OSA symptoms is that there are no hard fast rules that encompass everyone.

[Katt]

Awesome Lori .... the fog may yet lift completely ... you are moving in the right direction ....


There is definitely some great info posted here ...



I hope to see more progress in here .... but don't rush it .. .don't push it to happen .....






Katt