I give up ! Venting !

[Spirit]

Hi All,
I'm frustrated to the point of giving up !! I've recieved tremendous support at the forums, bless you all. But I start with Swift LT, works great for a few day's, then I had to start mouth taping, which led to suffocation, when my nasals are plugged beyond belief. So I try the hybrid, first night worked fantastic !! 0.0 leaks, then as the day's progressed data got worse, I was patient worked with the mask, finally got leak down to .12, then today it's .34, I have no idea where the minor leaks are coming from?

I taped off the air vent, no leaks. Sleep solid, wake up, no leaks detected, mask secure. Checked chin flap, etc..... Pillows secure upon waking. But data alway's shows leaks.

I am beginning to have doubts cpap treatment works.

I try sleeping without the cpap one night, and felt no different then when I use the cpap. Lifeless !! It takes hours for me to get moving.

I've read lots of people on the net, gave up on cpap treatment, I may be one of those. Hope I'm not discouraging anyone, but Thursday it will be a month, and I still feel no different then before all this began. Only very, very, very small improvements. At this rate, it could take years to feel normal.

I can only think of one other possibility, severe allergy/sinus. When my nose/throat swells, treatment is being decreased. Air has no where to escape, but out of the mask (air vent), Something, I have to discuss with my sleep doc. It seems more air, release through my air vent, then enter my airway.

I'm just really frustrated & disappointed, and hope someone could shed some light. I know a great attitude, goes a long way, but it's very hard to keep a great attitude, feeling like blah everyday.

Thanks

[Wulfman]

I thought Texans were tougher than that......

I would recommend the ResMed Ultra Mirage Full Face mask (properly sized and adjusted).
If you're using a lot of humidity, try turning it down or off.


Den

[m1aman]

I won't lie and say I feel a big difference from using my CPAP. But the doc told me I spent about 45 minutes a night in the "stroke zone" due to my lack of breathing so that was enough to convince me I need one.

[BlackSpinner]

I taped off the air vent, no leaks.

The air vents are there to get rid of the CO2 never ever tape them off.
Change to a full face mask. Stop hassling with it and just sleep with it.

Only very, very, very small improvements. At this rate, it could take years to feel normal.

One month is not enough - it can take a month or more for you brain to trust the oxygen your getting and sleep deeply.
You didn't get into this shape in one month, did you? Why do you expect to get out of it in under a month?

CPAP treatment is not exactly difficult - clean, add water, put on mask, push button, sleep. Repeat each nite.
Its nothing compared to testing for insulin several times a day and giving your self shots.
Unlike drugs it doesn't turn you into a zombie, cause cancer or other do other strange things to your body.

[Spirit]

I thought Texans were tougher than that...... :

Only when it comes to summer heat, my friend.

I would recommend the ResMed Ultra Mirage Full Face mask (properly sized and adjusted).
If you're using a lot of humidity, try turning it down or off.

Thanks for suggestion Den, I have an appointment with clinic Sept 10 for new mask fitting, only mask I haven't tried is complete FF.

[Wulfman]

I thought Texans were tougher than that...... :

Only when it comes to summer heat, my friend.

I would recommend the ResMed Ultra Mirage Full Face mask (properly sized and adjusted).
If you're using a lot of humidity, try turning it down or off.

Thanks for suggestion Den, I have an appointment with clinic Sept 10 for new mask fitting, only mask I haven't tried is complete FF.

Go to this link, use #5 and do the measurement. If your measurement falls right at the halfway point between two sizes, I'd suggest getting the larger size.

https://www.cpap.com/cpap-mask-sizing.php

You can keep your heat and humidity. Southeast Nebraska was too hot and humid (and cold and humid) for me, so I left 36 years ago.


Den

[Spirit]

The air vents are there to get rid of the CO2 never ever tape them off.
Change to a full face mask. Stop hassling with it and just sleep with it.

Sorry for miscommunication. I only taped off the vent, to see if I had additional air leaks, prior to sleep.

CPAP treatment is not exactly difficult - clean, add water, put on mask, push button, sleep. Repeat each nite.
Its nothing compared to testing for insulin several times a day and giving your self shots.
Unlike drugs it doesn't turn you into a zombie, cause cancer or other do other strange things to your body.

Well it is for some of us. I get bad nasal congestion & throat swelling from allergies/sinus, regardless of what I do, also have an enlarged thyroid, but surgeon shared thyroid is not affecting airway, but it sure feels like it does.

It's 50/50, cause I've read stories on the internet concerning people that had apenea for 20+ years, with immediate results. Also my younger brother has apenea, stopped breathing 65-70 times in hour, and felt lots better, first month of treatment, prior to surgery.

So I don't know, why I still feel like blah !!!! Trying to stay positive.

Thanks

[Babette]

When you are sleep deprived, everything is more frustrating that it normally would be. Your emotions are more raw. You are prone to rage.

Getting to the good spot with cpap therapy is very difficult. Takes many of us months. Getting through this rage filled period is the worst thing many of us will ever go through.

Get the FFM. DO NOT OVER TIGHTEN IT. Play with different humidifier settings. Play with other settings, as necessary. Some folks find they do very well with a FFM and a chinstrap. You just don't know until you've tried everything darned thing and then found something that DOES work. Took me 8 weeks and 6 masks (or was it 6 weeks and 8 masks? I can never remember...) until I could be 100% compliant all night every night. Even then I had to go on Provigil for 3 months, and didn't really experience a positive effect for months.

Keep slogging through it. It's worth getting to the other side. Someone in Texas will miss you sorely if you don't.

Hugs,
Barbara

[twokatmew]

I'm within days of the three-month mark. I don't feel amazingly improved by any means, but I do have other significant health issues including sinus, Eustachian tube issues as well as severe asthma. Seeing high numbers with my ResMed machine hasn't helped. Still, I do feel better than I did before I started therapy. I felt like the walking dead, and now I feel only half dead.

Just the other night I discovered that using EPR 3 has stopped me puffing air out my mouth, which has been a wonderful discovery considering I don't like taping and even the smallest FFMs are too big for me.

I do understand your despair, as I have had and still continue to have on occasion, the same "CPAP is hopeless" feelings.

Please don't give up. Even though you might be able to drag through your days w/o CPAP, OSA is doing tremendous damage to your body. Even Carbonman who seems to have experienced miraculous success is still reporting improvements after a year, and IIRC he did say it wasn't easy in the beginning.

Hang in there, Sprit! If you can handle that Texas heat and humidity, you can master CPAP. I'm still plugging away at it, and Houston heat and humidity drove me away many years ago.

[Spirit]

Thanks everyone for support & encouragement. I just have a strong feeling my allergies/sinuses are in the way, of positive cpap treatment. Allergies/sinuses made me feel blah, even prior to osa. And now with osa, both combinations make me feel miserable. I just need to get one or the other under control.

Thanks

[Babette]

Well, I was on Flonase and Claritin and Advair BEFORE CPAP, and I'm still on them now.

Are you SURE you're taking enough drugs?

Sorry, I just couldn't resist. Allergies SUCK. There are days I feel like I need to put in a freakin' bubble. Then I meet someone who has it worse than I do, and I slink away and whimper in shame.

Hugs,
Barbara

[TXLadybug]

You're right about getting the allergies and congestion under control, along with finding the right mask. Talk to the Dr. again, if not the Sleep Dr., then go to your GP Dr. I now use a nasal spray every night, and take an antihistimine- either claritin or zyrtec, and occasionally, I add Sudafed (the real stuff) if necessary. I also have my humidifier set on 1 1/2 now, and 2 most of the time.

BUT- it took me 4 1/2 months and I got to the point of truly giving up completely- when I went to a local DME in my town and found people who cared enough to try on over 25 masks of various styles and sizes to finally get one that truly fit my face. I just thought it was me, always complaining about my mask fit, leaks, discomfort, etc. It was NOT ME! I had the wrong masks! Once I got one that fit, eliminated leaks, got rid of Ambien- within a couple of weeks, I could tell a huge difference. My difference may have come a lot sooner, if I had persisted on getting fitted properly - but everything is so strange at first, you can't even imagine being comfortable with a mask on.

Don't give up- think of the loss if you do, think of the gain if you persist. I refuse to let a little robot machine with a hose beat me....not now, not ever.

[twokatmew]

Spirit, my pulmonologist prescribed a generic Atrovent nasal spray, and I use two sprays in each nostril before bed. Of course this is in addition to generic Zyrtec, Singulair and sometimes Sudafed (the original from behind the pharmacy counter) at bedtime. I also use Pur-Sleep "Clear" and a Vicks nasal inhaler in each nostril.

All this has really helped being able to breathe with the CPAP. Of course it's not a cure-all, but it does help me to feel a bit better and like I'm getting some benefit from CPAP.

[millich]

Spirit - you've talked alot about your leak rates, but unless I missed it (which is quite possible), you didn't talk about your AHI. Is it under control despite your leak?

[Spirit]

Spirit - you've talked alot about your leak rates, but unless I missed it (which is quite possible), you didn't talk about your AHI. Is it under control despite your leak?

I rarely have AI events, persistently 0.0 for 2+ weeks, it's alway's HI = AHI data. So I'm suspecting, allergies may be the cause.

Such as today:
AHI: 3.3
AI: 0.0
Hi: 3.3