HI ALL. IM NEW HERE AND NEED HELP!

[silverde]

Like so many others i read about i too didnt sleep on my study and was prescribed a pressure of 4-7. Thing is ive been on 3 different machines now for almost 2 yrs and dont feel at all any better! Ive got to get this figured out as it makes me feel like im dying-serious. I think i might be losing my mind as well-cant think straight or focus at all. Ahhh anyway. After months of searching i finally found that funny post by(i cant remember who) about how NOT to fiddle with the clinicians menu on my resmed. Just last night actually. So i set the max pressure up to 9 from 7 and dont really feel any better. I noticed that my throat was sore though-this has happened before. Actually my headache maybe is not quite as bad but... I see that my AHI was 3.0 for the night -that doesnt seem so bad (is it?) Anyway if anyone has the time to read my gibberish and has any ideas.. id appreciate it.

[Wulfman]

First suggestion: Please fill out your profile so we know what kind of equipment you're using.

If you're using a nasal mask.....you could be leaking air out of your mouth.

Welcome to the forum and best wishes.

Den

[kteague]

I don't know whether to be angry or sad when I hear of someone suffering 2 years with a treatment that is not working for them. Glad you found your way here. Post the info Den requested and some knowledgeable folks here will try to help you turn this thing around. You'll get the help with your treatment that everyone SHOULD have received from their doctor. Better late than never, though. Welcome.

Kathy

[silverde]

Yes i feel terrible and thank you so much for your reply-i know im not alone with these crappy feelings now that ive found this board. I didnt give much history before ill give abit now. It was about 2 yrs ago i was first diagnosed with sleep apnea. I went for a sleep study in Calgary. I couldnt get in soon enough at my local sleep lab-they said anywhere from 6 months to 2 years!
Not soon enough for someone whos gonna die! (thats what i thought and still do) anyway i paid out of pocked travelled 1000 miles and booked myself in. I was so exited to think that finally i would have relief! Well we talked to the doctor and i came back that night in high spirits. Well you know where this is going -a fter sitting there for an hour getting all my electrodes and what not hooked up they put me inthis little room with no windows and it had to be 110 degrees in there. Any way long story short i didnt sleep all night-maybe half an hour-maybe. So in the morning i waited for the doctor in a dismal state. After telling him i didnt sleep i could tell immediaely he did not believe me-ohhh i was frustrated and sad. Well he eventually prescribed me cpap from 4-7cm pressure(i think just to keep m from whining) and sent me home. Well needless to say i wore that one(remstar) faithfully with no results at all(exept some acne on my face) for about 3 months. I then called them back and told them i thought the machine was broken because nothing was happening. They sent me another one and same thing. They checked the smart card thing and said everything was normal.This puzzles me. Ive scoured the internet trying to find out what i have if not sleep apnea but keep coming back to it. As my wife can verify I STOP BREATHING DURING THE NIGHT! So if not sleep apnea i have no idea. But the fact that im on my third machine(resmed elite that i purchased!) and still no results leaves me wondering what the heck. Ive convinced myself that the initial pressure may have been too low so after much reasearch ive decided that t probably couldnt make me fee any worse so i changed it. Im going to increase it again tonight to see but..... i could go on and on about how bad i feel and how its stealing my life but i think you already know. I just dont know what else to do and itll be at least 6 monthsnow before i can get another study (unless i go pay for one again..which i might)Also as im new here i have no idea if your allowed to post this long message. I hope no one gets mad. Thanks again for letting me vent. Its very frustrating trying to explain this to people who sleep every night!

[CollegeGirl]

silverde,
From what you describe (the sore throat) it sounds to me like (as Den said) you could be leaking treatment air out of your mouth. Whether we call it mouth breathing or mouth leaking, it's the same thing - if there's air coming out of your mouth while you sleep, you're not keeping your airway pressurized, and it's likely you won't start feeling better until you get that under control. Could this be your issue?

[silverde]

Thanks for the input, yes i think maybe my mouth may be open. Duct tape tonight it is -thanks!

[CollegeGirl]

Hee hee. If you've been reading the forums, you know that people do, indeed tape their mouths. A better choice would be some waterproof medical tape, though. There are some good instructions on how to do it around here somewhere. Hopefully someone has the link and will post it. And remember, it takes more than just one night to start feeling the result of any changes you make - and it's best to only make one change at a time, then stick with it for a week or so before making any more. That's the only way to tell what's actually working for you. Good luck.

[silverde]

Yes i know your right about allowing some time for the changes to take effect. Just so darn frustrated and feel like someway somehow something will work and ill just wake up feeling refreshed and super! (i know this will never happen but i can dream) So yes perhaps ill just tape my mouth tonight and leave the settings for a few days. -thanx again

[ufo13]

silverde:

Sorry you were not treated very well by the very people who should be able to give you some answers! Did they follow up with any useful info for you? When your smartcard was read, did you get any pertinent information such as Ai's, Hi's, Ahi's, pressures, etc or just compliance data? What did they describe as being "normal"? Also as Den (wulfman) said it could be a combination of things, mouth breathing, low pressure etc! You indicated you are trying to raise the pressure-Where do you have it set now? Is your wife still reporting you "stop breathing" at times during the night? It seems if you are not getting any help or feedback from providers, and you do not have an Auto machine to help give some feedback, for now you will have to do as you stated-raise the pressure slowly, and actually go by how you FEEL the next day until you arrive at somewhat of a pressure that gives you relief! If I am reading your posts correctly a pressure setting of 4,5,6,or7 is not enough if your wife is still reporting you are "stopping breathing" during the night! I would suggest you try a setting of 10 for tonight to start with and see how you feel tomorrow! Have you seen a doctor recently to rule out any other health issues? Keep us posted on how well the above works and if the pressure change is helping you, and any other info you can supply, I or someone else on this forum WILL help you! You should not be "left out there" floundering by the very people you paid to help you!

All the best,

Steve,
ufo13

[flygal6]

Silverde,
Welcome to the forum....now you can get the help you need. I also agree with the increased pressure, try for I would say a least 1 week before making more changes. Also see if your wife still observes you not breathing. In regards to your other post about your AHI....usually below 5 is considered normal or acceptable. Also better to be having hypopneas rather than apneas (AI=0, HI=3). Also one last thing, it probably has taken years to slowly develop your OSA and subsequent sleep deprevation and now to correct that deprevation will take time also for you to feel better. First lets get your pressure to a theraputic treatment leval and fix any leaks....with those fixed then you should start to feel better. Best of luck!
Carol

[silverde]

Thank you so much Steve for your input. Yes i guess i forgot to put on my other posts how ive been a human guinea pig lately. Ive seen my original sleep specialist several times now but he only has the origainal study to go by and as i said i didnt sleep! So it shows very little info/events. Ive had CT scans , extensive blood work(i thought maybe thyroid) pulmonary function tests, nerve conduction studies etc. I almost was convinced (as my one doctor) that maybe i dont have sleep apnea! But ive searched and searched and keep coming back to this. Plus none of these other tests showed anything! Also theres not to many other things that make you stop breathing in the night!

[snoregirl]

Make you low end 6 or 7. 4 is not enough for most of us to breath comfortably.

[silverde]

Thanks snoregirl ill try that tonight!

[rested gal]

Make you low end 6 or 7. 4 is not enough for most of us to breath comfortably.

I agree with snoregirl. The lower pressure setting is more important to "get right" (imho) than what you set the higher pressure for (as long as you've got it "high enough") to take care of things, too.

If you actually need, say, "9" or "10" cms of pressure to prevent apneas, sometimes events can sneak through too fast to be prevented when a machine has been dropping down to "4" and then having to run back up repeatedly throughout much of the night. I want the lower end of my autopap's pressure to be already set "up" well enough to prevent apneas in the first place. Just my non-medical opinion.

I also agree with the people who are saying make sure leaks are controlled. You'll get there, silverde...you found the message board and are doing your reading.

[Wulfman]

silverde,

Your profile is showing the "Elite" which is a single pressure CPAP machine, but I see references in the posts to a range of pressures which would be consistent with an APAP machine.....like the "Vantage". Do you, in fact, have the Vantage or the Elite?

Den