Please help GF almost broke up with me due to CPAP

[Slinky]

There's lots and lots of advice under the icons at the top of this forum page: New Users - CPAP Wiki, etc. Click on them and read them. Proper mask fitting is one area that might help. I replied to three of your posts in the order in which they appeared in the forum at the time I was browsing.

You don't have a monopoly on a tough start w/CPAP therapy. I did it all supposedly right - accredited sleep doctor, accredited sleep lab, excellent accredited RPSGT, lousy local DME provider that I had to dump for a better one .... and the first 30 nights on CPAP therapy were the WORST sleep of my life. And, yeah, it did NOTHING for my disposition. I hated the whole world and everyone in it, including myself.

Back to the sleep doctor at 30 days demanding a pressure change or whatever was necessary. A pressure change, some MILD improvement, barely detectable. Another rough 30 days and I insisted on a loaner APAP to find my necessary pressure. First three weeks w/the APAP were a waste - no humidifier and raw nostrils, loaner passover humidifier and not a heck of a whole lot of relief from the raw, chapped nostrils, FINALLY a fellow PAPper and forum member loaned me his stand alone HC 150 heated humidifier and told me to use some Ayr Saline Nasal Gel to heal the nostrils. Finally some actually noticeable improvement in therapy!!!

But NOT enough. Despite my pointing out and asking about my high leak rate the RRT and the sleep doctor ignored the Leaks. Thanks to this forum and a couple of others and the advice that was shared my sleep FINALLY started improving in a NOTICEABLE manner!!!!

I'm not the greatest success story in this forum - but I have COPD complicating matters. I've had to be switched to a bi-level auto. But I CAN truthfully say that I am sleeping better now and feeling more rested than I have in some 16 years!!!! (And I went thru probably a good dozen masks to find a comfortable, relatively leak-free mask).

You can do it - if you want to. Good luck and God bless.

[Breathe Jimbo]

Mars, in addition to the OSA and attitude problems, let's not forget that Larry said he is hearing voices. He needs to go to the nearest emergency room immediately, before the voices tell him to do things....

Larry, go to the nearest emergency room NOW!

[illinigal]

I remember the frustrations of my OSA therapy not making me feel like a new person for many weeks and the agonies of adjusting to the mask and all of the many other feelings of despair I experienced...I also remember my grandmother , in the middle of one of my complaint bouts, making the remark that if people put as much energy into solving the problem as they did into complaining about the problem, there would be fewer problems ! So this is just a gentle reminder to talk less and do more and take the first steps to find a good doc and dme and get yourself headed in the right direction ! Just do it !!!!!!

[larry63]

I didn't mean you haven't replied.... I meant you haven't given us the information we requested. Among those questions were:

• Pressure setting(s)?
  Did you get the clinician's manual that I sent you the link to?
  Did you check to see if the AHI reading is activated on your machine, and if not, did you change that via the clinician's instruction manual?
  Do you have the software and SmartStick?

10 cm h20.
Yep I already have the manual.
No I didn't change the pressure.
Yes, I have "access" to the software and the machine has the smart-stick.
Reports show even at the beginning of the session()F/P sleepstyl 244), the leakage is typically 45 LPM.This even though
the nasal pillow "feel" sealed and the I felt all around the connections of the machine. So I assume that that the machine
has some kind of weird design where it must be reporting some other leakage (perhaps internal within the machine). Not
just me, but two other people have the exact same problem on these forums. Anyway the manual for the machine says it compensates
for up to 60 LPM so I'm not worried - I only go above that about 10 to 20 % of the time.

This is when I have just fit the mask with a perfect seal, and the chart for the mask (swift FX) says the flow for
10 cm should be around 34 LPM.

But two other people, one on this forum, and one on apneasupport, report the same problem \

Anyway thanks for the questions and I hope I gave you some answers. 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...

[brain_cloud]

First of all - demonising the girl-friend does not help anybody, especially as nobody on this Forum has walked in her shoes.

Right, when you think "woman", the next thing you think is "shoes".

[Zeke351]

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...

Hello Larry63.

As you know I am the other one mentioned above. LOL

I actually received a response from F&P about the reported leak rate. While they did not tell me what is causing it, they called my DME and F&P is arranging for me to trade my machine out for a new one! They want the DME to download the reports and send the entire thing to their offices so they can troubleshoot what is causing it. I was really quite surprised! If you would like the contact information let me know.

I am truly sorry to hear how tough this has been and all the difficulties you are facing. I am no expert, I have only been on the hose for about 2 months more then you, but some of the people I have talked to that really struggle with CPAP did make great strides on APAP. If you need to vent you can always PM me....I listen errr read pretty well.

Zeke351

[larry63]

... I've tried tried taping my mouth shut, with maybe about 5 or 10 lpm lower leakeage rates...

This suggests that you have access to your efficacy data. What are your settings? What is your pressure? What is your AHI? Multiple forum members have requested this information but you have never provided it. Larry, what is going on?

Look at the helpful suggestions in this thread which you started:

viewtopic.php?f=1&t=56451&p=529665#p529473

and in this one, too:

viewtopic.php?f=1&t=56468&p=529686#p529686

and this one also:

viewtopic/t56476/Help--CPAP-is-ruining- ... ml#p529796

10 cm h20, straight CPAP
Lakage typically min 40 max 60 most nights. I am very sorry if never posted this info.
I really think I did. That seems to be what most people are bitching about.
Need more info? I can post a PDF from a questionably obtained software but for legal reasons I would
rather not.

Larry

[kteague]

Missed a couple days posting due to keyboard issues that I didn't have time nor presence of mind to figure out (darn those 'sticky keys'). Couple times wanted to chime in on your threads. May be a bit late, but...

About needing a nap - in view of your sleep difficulties and resultant misery, I am of the opinion that if you are sleepy enough to fall asleep with the machine and mask and your schedule permits, take a nap. This may be the best way for you to get used to using the equipment. If you're so sleepy you can't stay awake, sounds like the perfect time to don the mask. Yes, it could mess you up for the next night, but hey, it's messed up anyway, right? In the beginning I had to sleep when I could get it. And I did lots of it, but it was in snatches. Little by little the snatches lengthened. Once you start feeling better you can work on the sleep hygiene and getting on a better schedule. It just seems that doing everything at once is not working for you, so I think priority is getting you the sleep you need to stay functional.

Unless I missed something, I didn't get that your girlfriend doesn't like your cpap or doesn't want you to use it, but that she doesn't like how you've related to her recently. I think we should cut her some slack. I don't know if she is just needing more attention or if you've dealt with her harshly, but if she has made no lifetime commitment, she's free to walk. That doesn't make her bad. Hopefully she will believe in you enough to endure, and this will all resolve soon and no longer be an issue.

It seems you HAVE been listening and trying some suggestions. We just aren't mind readers. I do hope your efforts get you results soon. Best wishes.

[larry63]

you hear voices in your head like "six seven is the moon" while you're trying to think

The sleep apnea is not your only problem. I would take your machine and mask, etc. and go straight to the nearest emergency room. Tell them that you are hearing voices and it started since you began CPAP. They will take care of you before you leave.

DON'T WAIT; DO IT NOW!

Huh, that is an odd response. These aren't full blown hallucinations. It's just background voices I hear in my head sometimes while I'm deep in concentration. I always thought of it as just a symptom of fatigue.\
It's not any different then the nonesense voices you hear as your falling asleep.

Emergency Room???? For this??? I could see if this happened suddenly one day, but really, I think it is just a sign of being sleep deprived, sort of hypnagogic thing.


I'm sorry if my post was not clear, and I understand your concern, but this has happened in the past during periods of illness and fatigue. I have mentioned it to doctors and they all shrugged it off.
I do understand your concern though - thanks.

[larry63]

It was never a relationship--you deserve (and will find) much better.

Huh??

My GF is forcing me to take some action because of my personality changes.

And somehow that means it was "never a relationship"?

Would it be better if she didn't say anything and never acknowledged that there was a problem?

Please I don't mean this in a hostile way, although that's the only way it will probably come across to you.

I explained to her, and we both agreed, that the CPAP therapy has at least temporarily changed my personality
for the worse, and she is demanding that Monday I make some phone calls to find some different
doctors.

Best regards, and please, any reasonable person would do the same thing in a relationship.

She spoke her mind about what was going on. That's a good thing not a bad thing.

I'm very sorry if I gave the wrong impression.

[larry63]

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...

Hello Larry63.

As you know I am the other one mentioned above. LOL

I actually received a response from F&P about the reported leak rate. While they did not tell me what is causing it, they called my DME and F&P is arranging for me to trade my machine out for a new one! They want the DME to download the reports and send the entire thing to their offices so they can troubleshoot what is causing it. I was really quite surprised! If you would like the contact information let me know.

I am truly sorry to hear how tough this has been and all the difficulties you are facing. I am no expert, I have only been on the hose for about 2 months more then you, but some of the people I have talked to that really struggle with CPAP did make great strides on APAP. If you need to vent you can always PM me....I listen errr read pretty well.

Zeke351

Wow - that is good news. I really didn't even bother emailing them, just assuming that they would only talk to clinicians. So thanks!

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!

[larry63]

Missed a couple days posting due to keyboard issues that I didn't have time nor presence of mind to figure out (darn those 'sticky keys'). Couple times wanted to chime in on your threads. May be a bit late, but...

About needing a nap - in view of your sleep difficulties and resultant misery, I am of the opinion that if you are sleepy enough to fall asleep with the machine and mask and your schedule permits, take a nap. This may be the best way for you to get used to using the equipment. If you're so sleepy you can't stay awake, sounds like the perfect time to don the mask. Yes, it could mess you up for the next night, but hey, it's messed up anyway, right? In the beginning I had to sleep when I could get it. And I did lots of it, but it was in snatches. Little by little the snatches lengthened. Once you start feeling better you can work on the sleep hygiene and getting on a better schedule. It just seems that doing everything at once is not working for you, so I think priority is getting you the sleep you need to stay functional.

Unless I missed something, I didn't get that your girlfriend doesn't like your cpap or doesn't want you to use it, but that she doesn't like how you've related to her recently. I think we should cut her some slack. I don't know if she is just needing more attention or if you've dealt with her harshly, but if she has made no lifetime commitment, she's free to walk. That doesn't make her bad. Hopefully she will believe in you enough to endure, and this will all resolve soon and no longer be an issue.

It seems you HAVE been listening and trying some suggestions. We just aren't mind readers. I do hope your efforts get you results soon. Best wishes.

Hey jtkeage, it seems that I was unclear on the GF situation, and it raised a misplaced round of "dump her" type of replies.

Let me be clear. She is not disturbed that I am wearing CPAP. In fact she is happy that I no longer snore loudly during sleep-overs.
What she is rightfully disturbed about is my personality changes since starting CPAP therapy. I have changed from a happy energetic, funny person, to a tired, grumpy one.
Hopefully this will change in time.
She is understandably upset that I've been being late and sleep through dates.
But she knows that it started with CPAP therapy so at least she knows the reason.
We talked it over and agreed that today (Monday) I will get the ball rolling and try to get
a referral to a sleep doc and a better DME.

[Breathe Jimbo]

Larry,

We dumped on the GF because we did not have all the facts and made erroneous assumptions. It is a good thing that she is forcing you to follow up. That shows she cares about you. I'm sure everyone who dumped on her is feeling a little embarrassed right about now.

Your pressure of 10 is not high. Whether it is too low depends on your AHI. Please post your AHI or -- depending on what your machine and the software show -- any separate numbers for AI, HI, and CI, from which AHI can be calculated. Your AHI is crucial to getting a better idea of what might be going on.

I think I understand better what you mean about hearing voices. It seems to resemble a sense of falling straight into a dream, or having dreamy thoughts as you fall asleep, at precisely the moment you nod off. I have that experience, but I would not call it "hearing voices."

Good luck with your phone calls.

Jim

[DoriC]

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!

[BlackSpinner]

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.