My progress on CPAP (or lack thereof)

[amandalee]

A few people suggested I start a new thread (good idea) from what I had been discussing over here:
viewtopic.php?t=22220&start=75

Thanks for all the support. It really helps, especially since so far being on CPAP seems worse than having OSA.

Last night I tried Phil's sinus rinse. I think my sinuses have probably been messed up for quite some time, so it was a little on the painful side. Maybe it gets less painful over time as the sinus problems clear up?

Anyway, I was able to get at my stats on the machine, and they were unimpressive. My average AHI was 10.9. I know it hasn't been very long, but it seems like that number should be lower.
Unfortunately, I couldn't figure out how to adjust the pressure.

Since I sometimes just fall asleep on the couch in front of the TV anyway, I decided to move my machine out to the living room. I turned it on around 10 pm while I just laid on the couch and watched TV. I think I sort of drifted in and out until about 2 am when I turned the TV off. I woke up again at 4 am with the mask loose and feeling like I was choking because of the pressure. I couldn't get the mask adjusted, so I just took it off and went to sleep in my bedroom.

Then it was the same story as usual: woke up after 9 am, late to work, still feel tired and crappy; my lungs, airway, throat, mouth, nose and sinuses feel like they're full of little bits of broken glass. Hooray, I'm in hell.

When I checked the stats this morning, the AHI was down to 8.something, but since I was awake for alot of the time I used the machine last night, that's not surprising.

I'm not sure if a pulmonary function test was done during the sleep study. I'd assume so, but I'd need to look at the study again.

[oceanpearl]

Have you tried adjusting the cflex settings? Are you sleeping on your back?
These are a couple of problems that I had to resolve before getting my AHO down to an average of 2.8.
I kept a close eye on my hourly pressure readings and found the pressure that started my AHI up and I came back down 1 below that, My AHI immediately evened out to 2.8.
Hope you get something that works for you.

[DreamStalker]

A sinus rinse should not be painful ... you may have the wrong ratio amount of ingredients. Also make sure you lean way over (like touching your toes) and tilt your head to one side then the other to get all of the rinse out of your sinuses.

You should not start messing with your pressure after just one day. You are most likely suffering from leaks and/or poor fit of mask interface. In addition, sleeping in the living room in front of TV is very poor sleep hygiene. Research good sleep hygiene.

Keep working at it and you will get there.

Best wishes!

[phil1001]

Hi Amandalee,

My sinuses were actually so messed up in the begining it really was sore, eyes watering etc.. as usual pushing through it for a week or so, relieved the swollen tissues and now its all good. Definately need the right mixture and non-iodised seasalt and cooking soda unless of course you like the burn There is alot on the net under google about recipies !

I know initially you dont want to mess with the settings or to many variables, but 13cm is way too high.
Go with 9cm, you can always crank it up. Set cflex to 4.5 (my setting) or 6 (James) over about 20 mins.

I will now go against what everyone will advise here as there are many ways to skin a cat (no offence cat lovers, and I have one myself)

Get some cushions on your couch, sit half upright, put on the mask at around 10, watch tv and fall asleep.
Get used to the CPAP and mask over a week or so like this, then start training by sleeping on your side in your bed or whatever.

IMHO, while the ultimate result is sleeping in your own bed, feeling rested, not waking a zillion times, not eating candy and learning 4 new languages - you cannot retrain all of these steps in one go, its too frustrating and stressfull. I know its not good healhy sleep hygene, but IMHO it is better to take small positive steps than to keep failing huge leaps.

Phil

[roster]

[quote="phil1001"]...........

Get some cushions on your couch, sit half upright, put on the mask at around 10, watch tv and fall asleep.
Get used to the CPAP and mask over a week or so like this, then start training by sleeping on your side in your bed or whatever.

..................

[amandalee]

Phil- maybe a scan of the manual would be helpful. I could look at my stats, but I couldn't figure out how to lower the pressure.

I did use sea salt in the sinus rinse, but the container I mixed it all in was only 50 mL, so I was guessing on the amounts of salt & soda. More experimentation is obviously necessary. I used a transfer pipette (the advantages of working in a lab ) which basically works the same as an eyedropper, to slowly dispense the stuff into my nose one drop at a time while I was laying down with my head tilted way back. Maybe this method needs work?

I have the C-Flex set at 3, and I changed the ramping so it started at 4.5 last night. Maybe I'll give 6 a try tonight and see how that goes.
I've been using the humidifier set at 3, but last night I was noticing condensation built up in the mask. Maybe I need to turn it down?

Yeah, sleeping in front of the TV is terrible, I know. But laying in bed trying to match my breathing up to the machine, and readjusting the mask all the time because it feels loose seems so counterproductive. At least in the living room I have the TV to distract me, and my couch is pretty comfortable (also, I always end up sleeping on my side when I fall asleep there). I know I'll be spending most of the weekend there. Except now I'll have my CPAP machine with me the whole time to try and get used to it.

Do any of you think it would be worth it at all to call or email my doctor at this point about the pain I'm having during the day when I breathe? Or is it likely that I'd just get a stock response of "give it time," which would mean I've just wasted what little energy I have left.

I'm also considering making an appointment with the employee health clinic here at work to see what they have to say about it, as maybe they'd have a different perspective than my sleep doc; but again I'm wondering if that would just be a waste of time.

[DreamStalker]

...........

Get some cushions on your couch, sit half upright, put on the mask at around 10, watch tv and fall asleep.
Get used to the CPAP and mask over a week or so like this, then start training by sleeping on your side in your bed or whatever.

..................

Not a bad plan. A comfy recliner in front of the tv might work also. As for what to watch on tv, maybe some old black and white movies with slow plot lines.

Lawrence Welk re-runs? ...

[roster]

.......... But laying in bed trying to match my breathing up to the machine, ...........

1)This seems like tying too hard. Forget the machine and breathe naturally. It is the machine's job to track your breathing. From Respironics literature: Digital Auto-Trak helps therapy feel more natural by matching therapy to the patient’s natural breathing pattern.

2)As for adjusting the mask, it helped me to take the machine to a counter in front of a mirror and adjust the mask with the machine running at the prescribed pressure. I would do this well before bedtime so you are not getting frustrated just at bedtime.

3)For a nasal rinse, I like the SinuCleanse neti pot and prepackaged salts http://www.sinucleanse.com/. It is cheap and easy to prepare and use and very effective. There is a video on the website demonstrating how to use the system. Most major drugstores keep them in stock. Print out the $2 coupon from the website.

You have the right attitude and determination and will be successful. Hopefully things turn for you quickly.

[DreamStalker]

I did use sea salt in the sinus rinse, but the container I mixed it all in was only 50 mL, so I was guessing on the amounts of salt & soda. More experimentation is obviously necessary. I used a transfer pipette (the advantages of working in a lab ) which basically works the same as an eyedropper, to slowly dispense the stuff into my nose one drop at a time while I was laying down with my head tilted way back. Maybe this method needs work?

Yes, your method needs lots of work …but more experimentation is not necessary. You basically did some weird type of water torture experiment on yourself. There are some good instructions here -
http://www.nasalineusa.com/prod_inst.htm

I have the C-Flex set at 3, and I changed the ramping so it started at 4.5 last night. Maybe I'll give 6 a try tonight and see how that goes.
I've been using the humidifier set at 3, but last night I was noticing condensation built up in the mask. Maybe I need to turn it down?

Setting your HH and ramp are fine but wait a week or two before you go changing pressures. You have to make sure you have leaks under control before you go changing pressures.

Do any of you think it would be worth it at all to call or email my doctor at this point about the pain I'm having during the day when I breathe? Or is it likely that I'd just get a stock response of "give it time," which would mean I've just wasted what little energy I have left.

Don’t know what kind’a pain you are referring to but if it is serious you do need to consult a doctor.

I'm also considering making an appointment with the employee health clinic here at work to see what they have to say about it, as maybe they'd have a different perspective than my sleep doc; but again I'm wondering if that would just be a waste of time.

I think it is too soon to determine what is a waste of time … you have not even had it a week yet.

[echo]

The pulmonary lung function study I was talking about contains several different tests: in different ways, you have to blow into a tube or snorkel-like device. If you had these tests you would know it, because it's not passive (like while you sleep or something). They test for things like lung function (http://en.wikipedia.org/wiki/Spirometry) and lung volume, resistance, and O2/CO2 diffusion. Also includes an arterial blood test (different than venous blood).

If I were you, I would take the presence of pain seriously. If after changing pressure and lowering the humidifier you still feel pain, CALL YOUR DOCTOR. Before you call, write out what you want to say, including rebuttals to any refusals they might make, and when you call - stand your ground. Your HEALTH is ALWAYS WORTH it. You can do it! (Calling is always better than email)

Also, If I were you, I would stick with your doctor before switching to another clinic until / unless you can't get any response from your doctor.

Good luck, and let us know how it goes.

And the water torture.. hah hah well put by DreamStalker. Normally I just "snort" the water/salt mix from the palm of my hand (but a Nettie pot is better/gentler). And the mix I use is approximately 1 teaspoon salt to 1 glass lukewarm to warm water. Some people also add sodium bicarb. I try to hold it in, and on a few snorts, tilt my head back to let it drain into my sinuses... If I'm blocked up or have a cold, I use the whole cup. The recipe on the website looks pretty good too.

... on another note I'm hoping that on my 4th night I can get a full night's sleep Keeping my fingers crossed for both of us ha ha!

[amandalee]

You basically did some weird type of water torture experiment on yourself.

Maybe it was similar to waterboarding...? No wonder it hurt like hell then. Thanks for those links.

Lawrence Welk re-runs?

Hmm, now that sounds like torture! Or else I'd be laughing too hard at the costumes. Either way, probably not so effective. Nice try though!

I've never had any of those spirometry type tests done. Might be a good idea.
Thanks for all the help.

[phil1001]

Hi amandalee,

A neti pot (read small watering can) is gentle and you will get a good sinus flush.
I have a waterpik attachment called a nasal irrigator which is kind of fun
http://www.amazon.com/WaterPik-WP-NA2-s ... B0001CHQU4
or you can buy the whole package http://www.hydromedonline.com/
You can also use a ear syringe bulb from the drugstore

5ml of Sodium Bicarb
5ml of Sodium Chloride
1 quart of water
mix well... I think its about a 3% solution you are after

With regard to rainout or condensation in the tube, I find the lower pressue, the lower humidity, so on 9cm my humidity of 2 or 1 is fine any higher and I drown

Start breathing normally with the mask on, the cflex will adapt to your breathing rate.

Lung pain should be taken seriously, all pain is the bodies way of warning you. It could be something as simple as inhaled acid reflux, to inflamed lungs from allergies. It could also have been overpressure - but not knowing when the pain started, duration of pain whether the pain is confined to lungs or the windpipe as well - it is hard to say.

If you dont have a healthy working relationship with your doctor, then change him. The rumour is that they work for you

I will scan the docs and email them

Phil

[jskinner]

I couldn't figure out how to lower the pressure.

Hold down both arrow keys when you plug in the machine, then press the options key after the beeps. That will put you in admin mode.

Maybe this method needs work?

Yeah I don't think thats going to work

I use the NeilMed Sinus Rinse kit
http://www.unimedprod.com/products.shtml
Look for something similar. There should be no pain while rinsing...

I've been using the humidifier set at 3, but last night I was noticing condensation built up in the mask. Maybe I need to turn it down?

Your experiencing rainout, try 2 for now maybe.

But laying in bed trying to match my breathing up to the machine

Don't try to match the machine. Try to breath normally and let the machine follow. It will feel weird for awhile but eventually you will not even notice it (I promise)

[amandalee]

If you dont have a healthy working relationship with your doctor, then change him. The rumour is that they work for you.

Yeah, that would be ideal, wouldn't it? Sometimes it seems like they are actually working for the Pharmaceutical companies and HMOs.

I don't think I have acid reflux. I do have allergies, but Allegra and Singulair keep them in pretty well in check. The pain started the day after my first night on CPAP. It's not so bad right after I first wake up, but as the day goes on, it gets worse and worse. It's my lungs, windpipe, throat, mouth, nose...
I'm pretty convinced it's due to the pressure being too high. Maybe it will convince my doctor that I actually need an AutoPAP, which is what I wanted all along...

[Snoredog]

Here is what you are supposed to use, you can use a neti-pot but I think the ear bulb works better, the quantity of the mix is shown below and that is un-iodized salt:


You also don't want to use "tap" water, that contains chlorine and other contaminants added by your water company you probably don't want in your nasal passages like fluoride.

The objective of this process is to flush out those allergens from your nasal passage which contribute to nasal inflammation, swelling and congestion. The "pinch" of baking soda breaks down dried mucous and allows it to be flushed out easier.

The amount of salt you are adding (1/4 teaspoon to 8oz. water) is to mimic the Ph of eye tears.