Continued from here.
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Practical experience- During the hieght of the rain/flood storm out here, we lost power in the middle of the night. I hooked up my SLA battery pack (which I bought for under $20) to my Respironics machine using the cable I bought from CPAP.COM for about $25. Slept till later than usual due to the excitement the previous night. machine still running just fine and battery syas it still has power available. (I would wager not enough for a whole ‘nother night).
By personal testimony, you can indeed run a whole night and sleep with your CPAP using a modest priced battery pack.
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Well, I just picked up my CPAP. Over $3400 with my part around $800. I can’t imagine how those without insurance manage it (I have not had a chance to compare prices with cpap.com). I hope to set it up and start using it tonight. Just from the fitting I expect that it will take some getting used to. I expect that I will have questions in a few days on just how to use the darn thing. The manual was not as complete as I would like.
Just a long bump to keep the topic going.
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CAMike- Just bring your questons here. There are a number of us who can tell you just what an improvement you’ll see in your life. it will take getting used to, and you may find yourself taking longer to settle down to go to sleep, and maybe getting up a few times in the middle of the night. These will pass as you get used to living on a CPAP machine.
And if things don’t work staright away, don’t get discouraged. We’re here to cheer you on.
<I won’t say we’re holding our breaths. the machines won’t let us do that!>>
This site shows how one person set up their solar PV system with batteries for their CPAP machine.
Well, my first experience went better then expected. I was able to wear the mask the whole night though I had it on backwards (nasal only - outlet blowing exhaled air towards my mouth not away - duh). I am not sure that I slept any better then normal but I could definitely tell that there were changes in my sleep pattern.
The downside was that my sinuses felt like they had been scrubbed with a wire brush even though the device has a humidifier. I expect that I will get used to this eventuallly. In the meantime, I have found that using a saline nasal spray in the morning helped with that symptom.
I expect that I will be back in a few days once I have had more experience with device.
CAMike,
My brother has extreme apnea (waking more than 300 times a night) and he said the machine utterly changed his life.
Eccles, have you had a chance to look at the site that Will indicated? I am still looking for a means to power the CPAP if the grid does down. The main problem is that I live in an apartment (townhouse actually). I do have a deck that gets some sun and a number of widnows on both the east and west sides of the place that also get sun.
My questions are: Would a setup like this power a CPAP (assuming the humidifier is off)? If so, for how long without recharge? Finally, would it be safe to keep the batteries in the apartment?
I guess the more basic question is would something like this be even feasible for someone in my situation?
Thanks in advance.
Mike
Melanie, thanks for the encouragement. I was measured at 74 “events” an hour for the 4 hours that I actually slept. I have a number of other ailments (typical middle-age stuff) that my doctors have said would improve if I could get a good nights sleep.
The machine is a pain but if it can help it will be worth it. I have high hopes thanks to all the testimonials that I have received here.
Mike
Mike,
That’s pretty serious apnea! My brother had progressed to narcolepsy to the point that my SIL wouldn’t let him drive. He’d been complaining about feeling crummy for years—it was lack of sleep.
Double amen to that melanie. I was running 87 events an hour. The difference was discernable after one night, dramatic after 3 nights and a complete new me after about 5 nights.
Your mileage may vary, but that’s my story and I’m sticking to it.
Melanie,
I have been lucky in that I did not progress to narcolepsy. Now feeling crummy is something I know about. I also have chronic insomnia so I am lucky if I even get to sleep some nights (and the distraction of the CPAP does not help).
2nd night on the CPAP. Got the mask fitted correctly and discovered that I did not have the humidifier turned on the first night. Manual? I don’t need to read no stinking manual.
My latest problem is pain in my back and hips. I think I am sleeping better and perhaps am not moving around so much when I sleep. I know I need a new matress so time to get moving on that.
So far, I am encouraged by the results. My mileage is less then Eccles but it is heading in the right direction.
Mike
CAMike -
One thing I noticed about going on CPAP was that I too used to think I wasn’t really much of a sleeper. It turns out since your REM cycle is the most disrupted part of it, basically you are sleep deprived wheter you get “shut-eye” or not. Sleep, no sleep was all the same to me. Once you get back to regular REM, you may find you return to more normal sleep patterns as well.
Eccles,
My brother had been so many years without decent sleep that he was amazed by the way he felt after the first night. By the end of three days he was literally a new man. And now he’s losing the weight that contributed to the apnea in the first place.
CAMike,
Whether you feel better or not immediately, stick with it. It took me 3 sleep studies and 4 months, but they finally got my pressure setting correct. I went from 11, to 12, to 13 and finally to 16. Also two masks and 3 different chin straps. Until 16, I felt nothing. Now, two week after 16, I feel better than I have in years and it is still getting better.
I hear you on the insomnia. It’s now 3:15 a.m. my time. Like you said, why bother sleeping if it isn’t going to make you feel rested. Hopefully, that will come back into sync for both of us.
Stay after the doctors until they get it right.
CAMike,
Get that new mattress and don’t go cheap! That tempurpedic thing they advert on TV is worth a look see if you have a dealer in your area.
Follow Power Hungry’s advice and stay after the doctors. Even the sleep specialists need to have you pawing at the back of the lab coat to do the best job.
The CPAP was life changing for me. I takes about a month (or more) to get used to the mask but it is worth every minute of it. Modern Science- Between gout medicine, advil, BHRT, CPAP and viagra- I’m good to go.
“Between gout medicine, advil, BHRT, CPAP and viagra- I’m good to go.”
LOL!! Boomers are not going quietly into the latter portion of their lives, me included.
Oh yeah, let’s add Flomax to that list please.
Thanks all for the encouragement.
Melanie, I hope to have a new mattress, next week. I will definitely look into the tempurpedic. You are the third person that has recommended it. In the meantime, it is time to relocate to the couch.
PH, PBQ and Eccles thanks for the testimonials. It is hard to tell if the CPAP is helping (it has only been 3 days) but I think it is making a difference. The major problem I am having, besides being able to fall asleep, is that my nostrils hurt (nasal mask). I am guessing that will abate over time or I will get a new mask. I intend to persist as I can tell there is a difference already and it will be worth it in the long run to get a good nights sleep.
PBQ and HBB, keep them jokes coming. I got quite a kick out of both your replies. We boomers will not go quietly. We may be medicated but quiet is not an option.
Mike
CAMike - It’s not just a good night’s sleep. Obstructive sleep apnea will kill you. You’re better off actually breathing all night instead of suffocating and having your body blow out all of your circulatory system trying to compensate.
Mike,
Remember Rosie Greer, the all-pro linebacker? He died of a heart attack induced by apnea.
not sure if it has been discussed here or not… BiPAP (VPAP) and CPAP are often used with patients with pneumonia. You sleep apnea folks may have a viable means of assisted mechanical ventilation in your bedrooms when the ventilators are all used up.
(definetely, NOT wishing this on anyone!)
Eccles and Melanie, thanks, I did not know that there were other down-sides to sleep-apnea besides the issues that result from a lack of sleep. I have now done some research and it sure has been an eye-opener.
I think I am getting used to the CPAP, at least I am an able to sleep at night. I am still feeling groggy during the day but I will keep going. There may be a problem with my unit as an alarm goes off sometimes indicating that there is a leak. I wake up and it definitely sounds and feels different. Then without me doing a thing everything goes back to normal.
The unit has done this a few times but not enough to make me stop using it. I will call the place where I got the unit on the 5th and see what gives.
MAV in Colorado, I had not thought that. Thanks for bringing it up.
Mike
CAMike - I’d be willing to betcha dollars to donuts that what is happening is that you’re trying to breathe through your mouth in the middle of the night. This opens up a path direct from nose to mouth, bypassing the pressure that should be helpoing you to breathe, which may be why you are still waking up groggy.
one possible cause of this is some amount of nasal and sinus congestion restricting the amount of air you can acquire through your nose to less than your body is happy with.
When they put you on CPAP, they should have given you a prescription for a steroid nasal spray to use to help keep things open. You may find that every few nights (not consecutive nights and not alot) that using some Afrin or Neosynephrin before you retire will open things up wider and assist you in breathing/sleeping better.
No joke, some folks stick a piece of tape across thier mouth to act as a reminder to thier unconscious mind not to open up for mouth breathing. In my case, I haven’t resorted to that, but my DW has complained of a few nights when I was mouth breathing and therefore sounding like a vacuum cleaner in bed next to her.
Another possibility is that when you are asleep your face engages the pillow in such a way as to skew the mask out of its seal to your nose/face (depends on which mask you use). When the leakage alarm wakes you up, you pull your face up off of the pillow and a seal is resumed.
Either way, this or the above would be enough to give you less than optimal support during the night, and you should “tweak” things until you optimize your usage of the CPAP.
Now you know its not just to feel better during the day, it’s to stay alive longer.
Eccles, thanks again. I intended to bring up the issue of clogged nasal passages with the MD but with all the information flying around I forgot (don’t get old, not a desirable condition, so avoid it at all costs). I will mention it at my next appointment, along with the idea of a chin strap.
You may be right about the pillow. I usually sleep on my side and I have been having problems getting the tubes aligned and finding a position where the mask does not get mashed against the pillow. I will try to work on this and see what happens.
It has been only 3 days and I have a lot to learn. Again, thanks for the suggestions and encouragement.
Mike
CAMike - In my own case, I use a kind of triangular mask that fits over the nose. They intend for the hose to go down and away, but as it is on a swivle fitting, and since I find it easier to run it behind the pillow and then down, I have the freedom to sleep on my side and to turn over to face either direction.
Everyone eventually works out his own system. Keep talking to us, so all of us can both help you and also learn from your experiences.
But clogged nasal passages are a definite dhow stopper with CPAP. You have to be able to breathe nose-only, or else the whole mess doesn’t work at all.
Now then, there ARE full face masks, so all is never lost. but I am told they’re less comfortable. But apparently us boomers spend ALOT of money on stuff like this, so better ones are coming out constantly.