so very tired and it isn't getting better

[robertmarilyn]

Mar, if you can tolerate it, I would nudge the 12 up slightly - Resmeds let you do it in 0.2 increments. My reasoning is the your sleep is still interrupted rather frequently, albeit by much shorter events, and possibly just a tiny bit more pressure will shorten - or avoid some of those apneas, which would improve you sleep oxygenation. Banishing more apneas is good, if it can be achieved.
Banishing apneas, like banishing thoughts, needs consistent vigilance and effort.... If 12 is not enough. 12.2 may do it
O.

Aw rats...I replied to this post and hit a wrong button and my wonderful prose went POOF But I'm over it now and ready to press on

I took a nap with my machine today so for tonight I will leave the setting as it. But for tomorrow night I will bump it up to 12.2 and we'll see how things go It is still about 4 weeks until my next sleep test and and if I can continue improving these readings (which are the best I've gotten so far), nudging them better...I'm all for it...I'll let you know what my results are with the new setting after tomorrow night.

-SWS has been a big help to me and sharing the information about that procedure that few folks would probably ever need, helped me process some tough thoughts in the days before my appointment with my new doctor. I went to the doctor, able to discuss some difficult things with her...we didn't discuss trachs...as far as I know such a thing doesn't enter her mind usually...but she did discuss with me that my residual sleep apnea may be so strong that no machine will help me (feel rested) and that there could be damage to my brain that can't be helped by treatment.

I don't think she would have discussed these things so openly and freely with me if she was not able to see that I could handle the talk and that I was willing to listen to "not so pleasant" medical talk that pertained to me. But I've been searching out answers and ideas about what may be going on with me and what may or may not help me...hey, I'd already found articles about the trach subject myself...processing such things and then setting them aside...allowed me to have a great visit with my doctor. At no point do I think she felt she had to hold back anything from me or talk down to me and I think at least reading about some touch choices (hopefully some I will never have to make) helped me to be prepared mentally and emotionally for the things the doctor discussed with me.

BTW, if something like that was the last option for someone (not me because there are a world of options to explore first), it could be a lifesaver. And in that light it would be looked at as a positive thing...a friend helped me to see it that way...and I'm glad he did.

Anyway, I am thankful for all the positive encouragement. I personally like to KNOW my options...I can't help it...I want to KNOW...I'm a research nerd so I'll find things out on my own anyway Of course, I have a pretty positive attitude most of the time and I think that is why I can face some unpleasant ideas...even if we discuss them as pertaining to me, I still reserve the right to plan on the most positive outcome. Then I deal with the reality as best as I can...with as much knowledge about it as I can gather.

Thanks ozij,
mar

[SaltLakeJan]

Is hello the proper greeting at 1:30 a.m., if so, Hello Mar:
I went to bed feeling distraught, I lay there half asleep, but suddendly my "Wisdom Light Bulb" lit - The thought occured that I didn't have to make any decisions - there isn't anything I am tied to. I have posted my notes on my site, but I went back and made the obversations, I am just going to hang loose, and let the ideas simmer and decide what to do. SWS had posted a similiar post to my thinking - there are lots of ways of getting a humidifier - you don't have to lose a data capable machine for it.

I feel much better - sometimes indecision can be a friendly place to pause for a bit.
Jan

[SaltLakeJan]

Hi Mar,
I'm wondering how you are today. You have expended energy preparing for your doctor's appointment. Energy you really did not have - if we are in double digit debt in United States, you are in multiple digit energy debt. Take care, even getting good news, can be tiring.

Jan

[robertmarilyn]

Hi Mar,
I'm wondering how you are today. You have expended energy preparing for your doctor's appointment. Energy you really did not have - if we are in double digit debt in United States, you are in multiple digit energy debt. Take care, even getting good news, can be tiring.
Jan

Hi Jan,
I couldn't get on before now because our (usually) pretty doggone good internet service was on the blink most of the day and when we could get on, my husband needed it for work. I was able to squeeze in for a few minutes earlier.

I'm going to do a little nudging on my machine tonight (CPAP pressure of 12 bumped up to 12.2 and give that a run for a bit). For the last week I'd been trying to understand the directions on my new oximeter, but I think I have a pretty good understanding of them now...with help. I'm pretty sure my real problem is that the USB cable doesn't work, so no matter how much I try to do things right, I'm not going to be able to recharge the battery or download results to my computer...just won't work without a USB cable that works.

Tomorrow I'm planning to get up bright and early and ride one of my horses...I've been mostly working with them from the ground in the last few months and I'm ready to get back on board with plans to do a ride again maybe around mid July. I'll have to get my battery for my machine and a few other things together for XPAPing with portable electricity.

mar

[DoriC]

Mar, I'll be saying prayers that the little nudge up on your pressure might bring better results. Ozij always gives measured and helpful advice. With my husband's therapy on cpap at 12cms, just a nudge up to 12.5 eliminated most of his snores. Our machine only adjusts in 0.5 increments.

[robertmarilyn]

Mar, I'll be saying prayers that the little nudge up on your pressure might bring better results. Ozij always gives measured and helpful advice. With my husband's therapy on cpap at 12cms, just a nudge up to 12.5 eliminated most of his snores. Our machine only adjusts in 0.5 increments.

Oh great, thanks for telling me that and special thanks for the prayers. I'm in good hands with all the helpful and knowledgeable folks around here...we sure are lucky to have found this place! (I'm still not used to you being avatar-less)
mar

[DoriC]

OK Mar, I'll use this one, I'm a cat lover. I'll have to wait for my grandkids to come to help me put a more personal photo up there. You can see I'm not puter savvy at all but I have learned a lot about this cpap therapy so all is not lost.

[SaltLakeJan]

Hi Friend,
I have never responded to your post about your horses. You mentioned a ride in July, and that you would have to get a battery. Does that mean you plan an over nighter -out of doors - without your special mattress? You go Mar, that sounds like someone who actually has a life.

What would it feel like to be normal - and what is normal? Here I am, up too late again. It is after 1 pm in Salt Lake. I hope that a.m. anti reflfux pill doesn't have the same reaction as it did yesterday.

Jan

[SaltLakeJan]

Mornin' Mar,

I didn't say good morning, because I don't have a clue how your medication acted/reacted for you this morning. Good, is my hope for you.

Looks like I will be buying the F&P unit. I am waiting for a reply from CPAP and I just realized, I don't know the specific unit or humidifier on his prescription. I'll be calling my DME this morning.

I can envision you having a good day enjoying your horses, and relaxing. I think it is to your benefit just to tinker with your pressure and find pleasure in the time before your tests. How did 12.2 go for you?
Jan

[robertmarilyn]

Last night was my best night ever. I had nudged my pressure from 12 to 12.2 (suggested by ozij) and kept the epr at 2. I slept 7.15 hours and only remember waking up one time...I fell back to sleep right way. My results were:

AHI 4
HI 3.8
A .2
I didn't do the halving of the HI 3.8 but of course, if we do halve it we'd have HI 1.9 + A .2 = for an AHI of 2.1

I did change something else in addition to the nudge up in pressure of .2 and that was I raised the head of my bed again. When the doc had me start on the acid reflux medicine several weeks ago, he had me lower the head of my bed so that we could see how much different the medicine made without the bed raised. It has been obvious the medicine makes a big difference in reducing my acid reflux problem, so we know it is working for me. But the night before last, even if I didn't consciously wake up thinking I was having a reflux problem, when I got up in the morning I was feeling the ache in my chest area and couldn't keep down my first drink of water. It has felt like a rough night and when I saw my readings they full of hypopneas and apneas.

So I did make two changes last night...the pressure change up of .2 and raising the head of my bed again. I've no plans to lower the head of the bed in the future so that will always stay the same from here on out. Last night probably was my best night since being on XPAP. I'll sit on this for the next 4 or more days and see how things average out.

I really like that the Resmed allows for the small increment increases of .2 of pressure. I know I have aerophagia and reflux problems at 14 and they are still there in a lesser but very uncomfortable degree, at 13. They are mostly gone at 12. So this is where the small increases are nice. I could be very close to my balance of good readings and staying below my aerophagia/reflux problem level. Getting to nudge up in increments will allow me to find the best spot in the best way.

mar

[robertmarilyn]

OK Mar, I'll use this one, I'm a cat lover. I'll have to wait for my grandkids to come to help me put a more personal photo up there. You can see I'm not puter savvy at all but I have learned a lot about this cpap therapy so all is not lost.

Great job with the icon DoriC. Cats are always a good choice!

I could probably write 15 pages of instructions on how you can upload a more personal photo but I'm sure we would all be better off if didn't do that
mar

[DoriC]

Congrats on that very nice report. I think you're doing great!

[SaltLakeJan]

Hi Mar, I have been reading about your exchange with your doctor. At the time of your appointment, SWS, Muffy, Ozji, were giving me suggestions, things to consider. Because of that the busy work, I hadn't read the actual exchange between you and your new doctor. I want to add my prayers to many others, that you will never have to face the negative scenarios that were talked about. I believe you and your doctor will make a good team. You are courageous and she was aware of that. I believe that with your team looking for the solutions that can help you, and the expertise of both new doctors that you could well be in a better place. Perhaps sooner than you realize..

The fact that last night was the best you had experienced since beginning ZPAP, should be really encouraging, if you weren't so tired.
Your plans for a July ride, may carry you forward for a while. You had a good meeting of the minds with your doctor, but once that is over & you are waiting for the next step - then it will be 2 more weeks before you get the results - - -. Do you find there is a let-down in the interim? All excitement in the preparations to meet the doctor - then the wait - that really isn't too long, but seems like it is forever.

You have made such progress finding the bounds of your pressure. Not the dreaded 14 cm, 13 is 'bout as bad, but you had a good nights sleep at 12.2. I like the feature on the ResMed where you can increase by increments of .2 You said it would say at 12.2 for 4 more days. What if you have four very good days - do you still increase? Sounds like you have found one solution to reduce your acid reflux -

to raise the head of your bed. I feel so accomplished when something like that helps, and does not have the potential of side effects.

Know that I am thinking about you, and praying for wonderful health improvements ahead for you. Jan

[robertmarilyn]

Hi Mar, I have been reading about your exchange with your doctor. At the time of your appointment, SWS, Muffy, Ozji, were giving me suggestions, things to consider. Because of that the busy work, I hadn't read the actual exchange between you and your new doctor. I want to add my prayers to many others, that you will never have to face the negative scenarios that were talked about. I believe you and your doctor will make a good team. You are courageous and she was aware of that. I believe that with your team looking for the solutions that can help you, and the expertise of both new doctors that you could well be in a better place. Perhaps sooner than you realize..

I have a feeling things are going to improve for me. Heck, I've had some improvement last night...with patience and practicing good sleep hygiene and with being able to be more active again as I get better sleep, I know I will feel even better in the future.

The fact that last night was the best you had experienced since beginning ZPAP, should be really encouraging, if you weren't so tired.
Your plans for a July ride, may carry you forward for a while. You had a good meeting of the minds with your doctor, but once that is over & you are waiting for the next step - then it will be 2 more weeks before you get the results - - -. Do you find there is a let-down in the interim? All excitement in the preparations to meet the doctor - then the wait - that really isn't too long, but seems like it is forever.

Now that I have this new doctor on my team and I see that I can get nice results from the machine I have (even if my next sleep tests show issues we weren't aware of) that two week wait after my next sleep test before I get to talk to my doctor about it (because she will be out of town) doesn't bother me. I seem to be doing a good job with my reflux situation and haven't had aerophagia for several weeks now and got really great sleep results last night (both data wise and how I felt wise) so I will be able to be patient for that two weeks. Heck, I even like that I have a few weeks before my sleep/day tests to ease my bedtime hour to earlier and to tweak anything that needs tweaking so that when I have the sleep test, I won't have too many problems interfere with the results (like bad fitting masks that made sleeping hard to do with my last sleep test). I just got my Papcap in the mail today (NO...no pictures!!!!! ) and I will get to try that out...the chin strap I've been using slips over my ears and I wake up with them feeling squished...I think I will like this new chin strap better.

You have made such progress finding the bounds of your pressure. Not the dreaded 14 cm, 13 is 'bout as bad, but you had a good nights sleep at 12.2. I like the feature on the ResMed where you can increase by increments of .2 You said it would say at 12.2 for 4 more days. What if you have four very good days - do you still increase?

I'll see how things go at this setting...if they look really good over the next 4 day or week, I may just leave them where they are...I'll be open to input from the pros about whether to change after I've sat on this setting for a while...it sure does look like I've gotten good advice about what to try so far.

Sounds like you have found one solution to reduce your acid reflux -
raise the head of your bed. I feel so accomplished when something like that helps, and does not have the potential of side effects.

I just love cheap and easy solutions like that. And now that I find it makes me feel so much better than when I have reflux problems...I look forward to sleeping on my raised bed

Know that I am thinking about you, and praying for wonderful health improvements ahead for you. Jan

Thanks Jan...I think we are both making progress with our doctors. As I mentioned before, it would be great if you could keep the machine you have, even if you get the one the doctor wants you to have. That would be the best of both worlds...I want to own a spare machine someday, I think it would be a good idea for all of us to have a spare.

I'm going to hit the sack soon...I tried my new Papcap on a big stuffed teddy bear to take a picture of him in it but my Swift LT for Her didn't fit him (his nose was too long and big) You all know what it looks like anyway...I'll let you know how it works for me after a few nights of using it...oh and I got some free samples of various scents...I'm going to try one of those tonight too

Have a great night!

[SaltLakeJan]

Wonderful news.

Jan