Please help GF almost broke up with me due to CPAP

Larry, we still need to know your AHI. If you can get your pressure and leak info off your machine, you should also be able to determine your AHI.

How did your phone calls go today? Did you get any action or appointments?

Hope everything is going at least a little better.

Larry63 wrote... "I want to know why at the moment that my wakefullness and cognition is going to shit
after I started CPAP. Please believe me, I do read this forum and others, searching for answers."

Larry, Perhaps someone has already suggested this idea to you... that your feeling worse and beginning CPAP was just coinsidence. Perhaps you would've felt worse anyway with the poor quality of sleep you may have been getting.

Speaking from personal experienceI took a turn for the worse after my sleep lab. I couldn've blamed it on the totally rotten night there. And again the horrid first week of APAP therapy. Woke up in tears with the Swift FX in my hand many times. But after reading many posts that said "hang in there" I psyched myself up and decided the only way to get me through this was definately a change in attitude. It took three months for the therapy to show me that it worked. And I'm glad I hung in there. I'm in my 7th month of therapy and feeling sooo much better.

It looks like you are standing on that cliff. No one can wave the magic wand for you. You either make up your mind or don't. I hope you are at peace with which ever decision you make.
Cindy

Patience, Larry; I didn't realize you were 'venting' on the GF.
Of course, as much as it may make you feel better for a little bit; not so in the long haul.
Understand, please, that we want you to succeed.
So many of us have been through he!!, we know it gets better; even though sometimes the crap comes back.
With practice, we can make it leave sooner each time.
Anger does bring back the adrenaline rush. It took a long time for me to kick that addiction (not totally sure it's gone)
While your apnea is being mitigated, you will feel a loss of energy--which is really a lower level of that destructive stress hormone.
--"Ride it out, cowboy!"

Breathe Jimbo wrote:Larry, we still need to know your AHI. If you can get your pressure and leak info off your machine, you should also be able to determine your AHI.

How did your phone calls go today? Did you get any action or appointments?

Hope everything is going at least a little better.

AHI as reported by my machine is between 0 and 2 AHI, but I don't don't know if this is this realiable information given the high leakage rate.


Thank you so much for asking.

larry63 wrote:

Breathe Jimbo wrote:Larry, we still need to know your AHI. If you can get your pressure and leak info off your machine, you should also be able to determine your AHI.

How did your phone calls go today? Did you get any action or appointments?

Hope everything is going at least a little better.

AHI as reported by my machine is between 0 and 2 AHI, but I don't don't know if this is this realiable information given the high leakage rate.


Thank you so much for asking.

Oops sorry, I forgot to say that I think I have found a local DME that sepecialises in respiratory theapy hence CPAP complete with a fitting room!
It is only thanks to you guys and ladies that I found this company. I'm so sorry that I have been so antagonistic - Last night I slept without my CPAP
and and it is astonishing how tonight I re-read all of you posts and I only know realize that all you people are only trying to help.


With CPAP I have to admit that I was very grumpy and antagonistic. Now that I took a one night break from CPAP, and feel more awake, I I re-read the thread and and with the sudden
clarity of mind I realize that your guys and ladies are truly trying to help me, and I truly appreicate that.

I am looking forward to the new DME. I'm hopefull that they will help me.

DoriC wrote:

larry63 wrote:

Zeke351 wrote:

larry63 wrote:One of us with the F-P 244 already wrote F-P but obiously because he is not a clinician we aren't expecting answers...

And about the difficulties, yeah, probably the most healthy thing I can do right now is stop posting in this forum! I can't believe the hostility here (not you and not a lot of other peopl, but some).
As they say, tough crowd here Probably this is the kind of forum where it is better to just lurk...
I'll PM you and include my email! And I'll email F/P and send them a similar email.
Thanks, Zeke, it's nice to get a post that isn't an insult once in a while.
Talk to you via PM!

Larry, I hope you'll rethink your opinion of this forum. We may get emotional about someone who is struggling because we care so much. And at times some of us have needed a 2x4 to get our attention. Tough love maybe,but we never mean to be insulting, far from it. This forum gives people their lives back. I thought my husband way dying and thought there was nothing I could do to save him, so I was grateful that there was a diagnosis and treatment for him. The diagnosis part was OK but after that I was on my own with therapy since my husband is somewhat physically and cognitively impaired and we found the medical community "lacking". I found this forum, read everything, asked many questions over and over again, received a few 2x4's when I became too overanxious due to my lack of sleep and was thankful to have many experts here take an interest. With their suggestions,I changed masks, read the data details daily, made pressure adjustments and I now have my companion sharing life with me again. I've written my story many times and I hopefully I've helped. We're all here to pay it forward!

Thank you, doric. I think that part of the problem is that I have been feeliing seriously sleep deprived since I started CPAP. Last night I went without the mask, and today with the better mental clarity and a full night's sleep, I re-read this thread and now have a completely different opinion of it. It's obvious upon reading itin a clear state of mind, that people are really only trying to help.. It's quite shocking actually.I have to say, for me,that is it is so much better to be my old self, pre CPAP, and I apologize.It's so weird and I apolgize (well definitely I do not agree with eveything that people said, like I need to go to the ER ASAP simply for hearing some background sleepy voices! - I mean what's ups whith that?) My task of course is to try to get to the point where I feel as functional with CPAP therapy as I did before. So far it's been a nightmare.

I suppose my plan is now to maybe alternate nights with and without CPAP, to get the point where I'm thinking I'm alert enough to follow though with the new DME and get a sleep doc on board perhaps.

Thanks for your supportive message and I reallize that sometimes "tough love" is needed.

Sorry to message again, but how is this combo working out for you?

Hooking up the Swift FX to the FP 244 for me makes the FP report insane leakage rates!

There's one person on this forum, and one other on the slpeelnana forrum, , that has the same problem.
The problem is that the machine is reporting major leaks - for example, I'm at 10 cm H20 yet my
display says that I have an avererage of about 50 tp 60 LPM, even tough at 10 cm, the total
leakage should be be 34 LPM for that mask ( according to the spec sheet).

Zeke is getting his PF 244 traded out - it will be very interesting to see if his new machine behaves the same way...!


What has been your experience?

Sincerely,

Larry

An AHI between 0 and 2 is good. Don't worry about the leak rate with those AHI numbers. The machine is working.

I encourage you to use your machine whenever you sleep, notwithstanding the paradoxical short-term effects. That is the only way to get past these initial problems. Sleep apnea places horrible stress on your heart and brain. It can't be good for your health to stop using CPAP every second night.

BlackSpinner wrote:

larry63 wrote: And about the difficulties, yeah, probably the most healthy thing I can do right now is stop posting in this forum! I can't believe the hostility here (not you and not a lot of other peopl, but some).
As they say, tough crowd here Probably this is the kind of forum where it is better to just lurk...

Well you know you get the response you ask for. All of your posts were extremely emotional and hostile. You didn't answer with the information people needed in order to help you. You started multiple threads requesting the same thing over and over again in the same hostile demanding way. Funny thing is most people who post here for the first time and respond to requested information, get helped immediately and have a lovely time here, even though we get the same requests over and over again.

Well it's funny what re-reading this thread while relatively clear-headed can read an entirely different interperpreation. Last night I decided to go with out CPAP, and I re-read this thread tonight.
And I don't know what I was thinking before (I guess I was grumpy from doing CPAP), and tonight with a clear head (without CPAP the night before), the difference in perception on reading this
thread again is truly incredibile.

So I'm sorry.

I would be concerned with the leak rate as well... some machines don't register all of the AHI when the leaks get too large. Respironics in particular when you see/get a large leak... doesn't register everything.

larry63 wrote:

BlackSpinner wrote:

larry63 wrote:

.

Well it's funny what re-reading this thread while relatively clear-headed can read an entirely different interperpreation. Last night I decided to go with out CPAP, and I re-read this thread tonight.
And I don't know what I was thinking before (I guess I was grumpy from doing CPAP), and tonight with a clear head (without CPAP the night before), the difference in perception on reading this
thread again is truly incredibile.

So I'm sorry.

Yes we understand the sleep deprived lack of clarity - we have all been there, for us it was mostly before cpap. That is why you got the variety of responses from sweet love to 2X4 in an attempt to break through it. When I came here just before I got my machine nothing on this board made sense, it was just overwhelming. Within a day of getting the machine and having some issues with "burnt" skin I suddenly understood most of the posts - so yes I get it totally.

Breathe Jimbo wrote:An AHI between 0 and 2 is good. Don't worry about the leak rate with those AHI numbers. The machine is working.I encourage you to use your machine whenever you sleep, notwithstanding the paradoxical short-term effects. That is the only way to get past these initial problems. Sleep apnea places horrible stress on your heart and brain. It can't be good for your health to stop using CPAP every second night.

Larry, we knew you were a nice guy, just sleep deprived! I'm really glad you're getting on track and that you've found a new DME. It would be interesting to know if your machine isn't recording your leak rate correctly. I hope you get that answer quickly from the DME and Zeke. It is true that with large leaks the AHI data is not really reliable as it may not be able to catch all the events. I can't remember if you've tried other masks? Keep us posted.

Larry: send your girl friend and bosses my way.... I'll give them all a ticket!!

Hi Larry,

Just checkin in on you and hoping things start to improve.. that two month mile marker is a bitch..


Im glad you took a break, so you could at least get your thinking cap on and get all these issues figured out..

I truly hope when you have everything all lined up, that you will be feeling better than you did before cpap, and NOT worse..

its not supposed to work like that, but believe me, I KNOW sometimes it does....
and I know your girlfriend wants you to be YOU again...

keep us posted!

things have calmed down around here a lot

elena

Larry,

I traded my 244 today at the DME Office...the RT REALLY did not like the fact that I went around her to the manufacturer! I would have liked to listen in on the call when F&P called her and told her she had trade it out and then ship it New Zealand so they could test it.

I will post more tomorrow after I run the new machine tonight.

I have to give credit where credit is due. The folks from Fisher & Paykel, both here in the USA and in New Zealand have been great. I always like to recognize great customer service when I get it.

Zeke351

Good job zeke, glad you are getting taken care of by manufacturer... good customer service is always appreciated. The dme people are looking bad to the manufacturer, oh well, you are getting what you paid for. john