will the doc know if I changed pressure?

[echo]

Welcome to the forum "officially"

I'm in Belgium and had a hospital prescribed CPAP. Had to fight for my HH too. In the end I bought my own machine from CPAP.com. The P&B 420E is very reasonable priced at around $700 for the APAP, the HH, and the tracking software. It might indeed be difficult on a student budget, so you might want to nag the clinic first.

In the end this is YOUR therapy and YOUR health. Along the lines of what Ozij said, if I were you I *would* engage them in a discussion over the proper pressure settings. *IF* they start stalling you because you've been changing your own pressure, well then it can't be worse than what they are doing now!!! A change of 0.1 is very little, most people on this forum experiment with changes of 0.5cm. But you're still flying blind if you're not able to track your data. Again I'd go with UKMischief's suggestion to nag the clinic.

Just a note, if you do change in increments of 0.5, and why not?, then stick to that change for a week before making any other changes. Make ONE change at a time and stick to it for ONE week. We sleep differently each night, so you might have a good night which just coincided with a change.. and if you start making lots of changes at the same time you won't know what's working and what's not.

To chime in on the mouth taping discussion - I had plenty of mouth leaking but no mouth breathing... also called 'chipmunk cheeks' because the air would puff out my cheeks, and eventually leak out my mouth. The taping stopped that. It's very difficult for a chinstrap to stop that effect.

You're right, it's difficult if you have to fight with your health care providers to get the right treatment especially while sleep deprived... but think if it was a family member in the same situation - wouldn't you tell them to do everything they could to get the right treatment? And of course the people on this forum can give you plenty of moral support and encouragement, so you've come to the right place

[ozij]

Voila! I'm now an offical member

Voila, now here's an official welcome.

I'm very glad you're feeling better - and I certainly understand the need for a clear mind when you're working on your Ph.D.
Good luck
O.

[birdshell]

Firstly, as an official member with a very interesting avatar.

Secondly, it seems to me that that feeling of nighttime paralysis would CERTAINLY be something that should, upon reporting, be a red flag for the technician as well as your other problems. My point is, even if you ARE waiting for a proper sleep clinic PSG, certainly improving your treatment in every other way is indicated.

That said, it can take some time to feel better. Many of us are not the kind who have a titration and then say, "That was the best night's sleep of my life," or, "That was the best night's sleep I've had in YEARS!!" So, in some ways, one should be patient. (Please see "Help for New or Struggling CPAP Users" under the Collective Wisdom yellow light bulb for more on this.)

Experimentation, as our own echo points out, cannot really hurt in the 0.5 increments weekly. (I assume that you will use careful self-evaluation throughout the process.) There are now machines that have a +1 or -1 cm Hg feature. While I wouldn't always support pressure changes without a data capable or auto machine, it seems that you have little choice...other than to NAG for an auto machine (as you wait for your PSG)? Whilst you experiment, it cannot hurt to nag, can it?

Best of treatment to you.

Karen,
Who becomes more grateful for her insurance

[PhiloHypnos]

Ah how nice to be so warmly *officially* welcomed by three lovely ladies!

Many thanks again for those very useful insights all of you,

This forum has given me three much needed and very precious gifts: Knowledge. With that, the Power to free myself from the shackles of the evil apnea monster , and effectively nag my helathcare providers! And importantly, Hope! I was really getting very depressed over the past three weeks at the thought that I would never beat these problems and finish my thesis.

Thanks to your input I think I now have a solid plan of action:

1) I bought some poligrip tape which I'll be using tonight while keeping the pressure at 13. This will tell me if I am suffering from the "chipmunk cheeks" problem.

2) I will seriously consider being up front with my health care providers about my changing the pressure. They are reasonable people and they should understand that I did it out of desperation.

3) I will definitely engage in an all-out frontal "nag" attack to get them to provide me with a full face mask and an APAP at least to determine my proper. The problem with experimenting myself on the S8 is that I am indeed flying blind (speaking of flying, my avatar is a 1950s fighter pilot mask btw), and the APAP should provide a much clearer answer much more quickly.

4) while I wait for the APAP I will experiment in weekly 0.5 increases, carefully self-evaluating.

Re the APAP, this will be my line of argument with my carers:

- 1st reason: It would be much more efficient to just get an APAP straight away to determine my proper pressure settings and whether I have Central Apnea, rather than waiting another 4 months for another, much more expensive PSG.

- 2: It is obvious that my original pressure settings were well off the mark, hence the need to re-appraise it with the APAP.

- 3: going back and forth to the clinic every two weeks to get a small incremental increase in pressure on the CPAP (the increases were of 0.2 by the way, not 0.1, as I said previously, 0.2 being the minimum increment change possible on my machine) will lead only to frustration, marginal increases in relief over a long period of time, and much time wasted in the finishing-my-thesis department, which I just cannot afford anymore. Not to mention being a pain for the carers themselves, who will have to see me so often .

- 4: With an APAP, I am much more likely to get immediate relief and hopefully liberate myself from this thesis by Christmas, at which time I might be able to get an APAP as an Xmas gift from family.

Hourrah for CPaPtalk.com!
Cheers and best wishes to all,
from a much more hopeful arkein

[PhiloHypnos]

Update on day 2 of my experimentation (I've decided to use this thread as my experiment diary, hope thats ok!):

1) I can definitely confirm mouth leaking and mask leaking: I used my chinstrap and sealed my lips with poligrip but left a very small gap in the seal.
- woke up several times feeling air whistling through the gap. Therefore indicating the dreaded "chipmunk cheeks" problem.
- I also woke up several times feeling small leaks coming out through the sides of my mask. I start out the night making sure the mask is well fitted with no leaks. So this seems to indicate that I am moving a lot during sleep, probably because of hypoapnea induced arousals, leading to the mask being displaced.

2) overall my sleep quality was the same as on day 1, after increasing to 13cm:
- still having multiple arousals often after vivid dreams, as before increase. Cannot recall any sleep paralysis as happened on night 1;
- as on day 1, got out of bed naturally after 8:30 hours; which is better than the 9 to 10 hours pre-increase.
- as on day 1, overall sleep quality feels better than before increase, but not optimal; as on day 1, still feeling slightly groggy and headachey but not as bad or drowsy as before increase, definitely feeling more functional cognitively; headache feels like it will get worse in the afternoon, just as it did on day 1;
- on day 1 I did not feel drowsy enough to nap during the day. This definitely helps stabilise my nightly sleep cycle. Today seems like it will be the same. This is in contrast to pre-increase, where I not only felt much more groggy and headachey each day, to the point of being non-functional, but also quite drowsy and needed naps late in the day, leading to constant shifting of sleep cycle.

So. From these results it is fair to conclude that:
a) I need a well fitted full face mask.
b) the pressure still needs to be increased further, perhaps to 13.5 or 14. but I will wait another 5 days to see if there is any change for the better.

At least I feel functional enough again to get on with things. which is great!

[PhiloHypnos]

OK! more updates.

Just called the hospital. Thankfully got the younger RT on the line.

I admitted that I changed the pressure, gave her all the details of the problems and results of my experimentation, and asked for an APAP.

She was extremely cool and understanding about it, and said she wouldn't tell the senior RT. what a relief! She said the hospital doesn't stock APAPs but she very kindly added that she'll try to see if she can get one transferred from another hospital. If succesful she said I might even be able to keep it as my permanent treatment machine. She added that the fact that I am reaching REM phase sleep means that my Apnea has resolved. Though, during a previous discussion she did say that I might still have some hypoapnea, which tends to cause arousals. She explained that a take-home oxymeter study I had, about 9 months ago, showed that my oxygen saturation levels were back to normal, indicating resolved apnea, but that single-night oxygen saturation tests tend to be less reliable for younger patients like me (I'm 31), and that they wouldn't show any other underlying sleep problems like REM disorders.

She said my sleep paralysis might indicate an underlying REM sleep disorder, but would require a full PSG to confirm. My appointment with the Respiratory specialist is set for next Monday, so she recommended that I ask for a PSG at that point. She told me to stay at 13 cm for the meantime, and bring the machine on Monday so that she can bump up the pressure if needed. So things are looking up!

She also told me that they had actually been increasing the pressure by a full cm each time. So my initial suspicions of 0.1 or 0.2 increment increases was not correct. However, that means that my original pressure was probably around 10 or 11 cm. I'll ask the specialist when I see her.

things are looking up!

[echo]

arkein - thanks for clarifying the avatar it is very cool

Congrats on your progress!! I'm very glad you got a responsive RT, so hopefully they can help you along better now.

I would definintely push to get the APAP as your permanent machine. The P&B 420E is the only APAP that will actually detect central apnea's, the others don't specifically mark them as centrals, but there are ways of figuring out if they might be centrals. In any case, having any APAP at all, together with the software (and card reader if necessary), will at least ensure you can track your AHI.

While you're waiting for the next appoitnment, you should read up about data capable machines under "our wisdom". Specifically take a look at : Selecting Your CPAP Equipment.

Enquiring minds want to know, what's your thesis topic?

p.s. it's good to catalogue your progress like you've been doing - gives us a chance to make comments and gives you a chance to feel good about your progress Keep at it!!

[PhiloHypnos]

Thanks for the kind words and encouragement Echo!

The RT did mention that the APAP would likely not directly show any centrals if they are occuring, hence the need for a full PSG.

I've taken a look at the Our Wisdom pages you linked to. Very informative. Will be studying them in more detail. thanks too for that

As for my thesis topic, I'll happily tell you by PM to guard my identity, since this string is websearchable

Arkein

[birdshell]

I think that I speak for most of us on this forum when I say that we would like to read your daily diary here. At least, we would until you get these problems resolved. I'm not suggesting (LOL)that this should be an ongoing autobiographical blog site.

In all sincerity, though, we like to see the resolution of the problem. It can help us to know the outcomes so that the information can be used to help others. Of course, we do hope that you will stick around long enough for the telling of your own tale.

You are already helping someone who is lurking, I am quite sure. Thank you (and all other posters) for sharing your experiences, if not your thesis topic until it is published.

Karen,
Whose hopes to keep contributing

[PhiloHypnos]

Thanks Karen for the encouragements and show of interest,
much appreciated

I'll keep a daily diary of the progress, in the hopes it might help lurkers and other forum users, as well as myself

Keeping the diary is definitely useful to me anyway. And the fact that it is being read and commented on is an additional motivation to keep on being proactive about finding a solution.

I definitely want to repay the HUGE help I've received from this forum, so I've already started contributing to threads where I think I can help.

Cheers!
arkein

[PhiloHypnos]

Day 3 experiment diary update:
13 cm pressure + poligrip sealed lips but no GERD medicine or herbal remedies

- slept late, around 1:30 AM

- sleep was of similar, but somewhat worse quality than previous two nights. Lots of tossing and turning. Frequent waking up from dreams, mask leaks (the mask keeps getting displaced from my movement and the tube pushing against the side of the pillow), street light shining through window, heartburn, discomfort from mask strapped too tight, probable hypoapnea due to leaks, etc. At one point my very thickly plastered poligrip seal tore open and let air whistling out, waking me up. throat slightly dry after that - a sign of mouth leakage.

- one possible episode of sleep paralysis, but no clear recall, so not sure.

- suddenly woke up at 5:30 AM, with some burning sensation in the gullet, racing thoughts. Impossible to go back to sleep despite feeling I needed another 2-3 hours. Waking and difficulty falling asleep again probably due to GERD acting up, which is often accompanied by tachicardia and anxiety. Slightly headachey, probably due to leakage causing hypoapnea and frequent arousals. As I very often wake up at that time, it must also be a point in my circadian cycle where my melatonin and other sleep hormone levels naturally drop. Would be a great time to get up if I went to bed at 11:00, but that is not a likely scenario, knowing myself.

- now feeling somewhat underslept, but relatively functional mentally. Will probably have no problem napping afer lunch. Good thing I can work at home.

Conclusion:
Leakage and GERD seem to be major factors in my arousals, discomfort, and headache.

- Go to bed earlier
- Take Gerd medicine and herbal remedies before bed.
- short of getting full face mask, try using bandage tape to seal mouth instead.
- short of purchasing an adapted pillow, perhaps try "sealing" mask edges with poligrip?
- get thicker window blinds!


--> Edited with this additional note:
As I haven't noticed GERD problems as bad as this with my CPAP for a while before today, I have a hunch that the steps I have taken in sealing my mouth and increasing pressure may have led to increased aerophagia, thus aggravating reflux and causing new discomfort & arousals. Must take GERD medicine! Using an APAP with min pressure set to my original pressure settings (which according to RT was sufficient to resolve the full apneas, but maybe not the hypoapneas) and max set to 14-15, might help resolve occasional hypoapneas while keeping aerophagia and reflux to a minimum.

[ozij]

short of purchasing an adapted pillow, perhaps try "sealing" mask edges with poligrip?

Mack's silicone putty earplugs - used by swimmers.

Keep on reporting - and analysing - you're doing a great job!
Have you tried hanging the hose from a hook in the wall above your head? That made a world of a difference for me in mask and hose management.

O.

[echo]

Are you also using the CPAP during your naps? If you're not, you should be!

[PhiloHypnos]

hmmm.... I went for a nap at noon thinking I'd wake up after an hour or so... woke up at 4:30 PM! There goes a huge chunk of this day down the drain... hope the long nap doesn't keep me from sleeping tonight.

Oh well, you win some you lose some, lets hope the new adjustments will help this time.

@ Ozij: Thanks for the encouragements and suggestions . Will try the silicone putty if the poligrip is too messy. But the latter seems easier to wash off in the morning than oily silicone.

About the hose holder above head: good point. I sleep on the far side of my king sized bed from the machine, generally sleeping on side facing away from it, which causes the tube to become quite taught (too taught to hook it above my head, as the tube is too short for that). That probably causes the mask to get displaced and some discomfort too. I tend to sleep that way, because on the other side, closer to the machine, on the wall at the head of the bed is a large window with street lights leeking in. Can't place the machine closer, on the side where I sleep, because there's a wall there. I'll try sitting the machine on the window sill behind me and do what you suggested in the meantime befor I put thicker blinds on the window.

@ Echo: yes I've been 100% compliant from day 1, including naps . The completely brain-dead zombie feeling after sleeping without the CPAP is just somewhere I never want to go again.

[birdshell]

Please do not use the Mack's Silicone Earplugs on your mouth, but rather rolled into a snake-like shape and used on the edges of your mask to prevent leaks. Here is the posting made by TJKajun:
Link to Sealing Mask with Mack's Silicone Earplugs.

As for mouthtaping, please see:

From our own Rested Gal, Laura:

Links to: Mouth leaks - Air Leaks - Tape - DIY Guard

My favorite mouth taping post by my distant relative (due to screen names) rooster:

Just One Man's Very Successful Mouth Taping Procedure

Here is a posting by Rested Gal--Laura on the issue of using painter's masking tape (blue, I believe):

RG's Masking Tape Mouth Taping Procedure


Karen,
Who collects links
(Laura taught me how to do so)