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Permalink Reply by Mark Wylde on September 19, 2009 at 8:40am

Thanks Jackie. I know the term and as I've not been diagnosed properly yet, I don't know which I have. But I do know I need relief before I'll be able to afford either insurance or a test.

Last night was my 2nd night on CPAP at 8cm flow, and was my 1st night keeping a mask on most of the night (pretty sure I kept the mask on for ~8 out of 9 hours). Also, whereas normally I wake up fully every 60-90 minutes, last night, I only remember waking one time -- about halfway through the night. I went to bed at 11pm, and woke up reasonably promptly at 8am.

However, waking today was not the fully vibrant and lively wake-up that I've daydreamed of experiencing again for years -- and I'm definitely still yawning a little bit. My impression from one night is that CPAP at 8cm was definitely a help, but not a panacea. I'm think I'm going to keep it here at 8cm for a while, though, unless a lot of people reply suggesting my observations below are an indication I should raise it incrementally a little bit. I guess what I'm hoping for -- for maximum personal adjustment purposes -- are some descriptions of what a "slightly too low" setting will feel like or cause.. and what a "slightly too high" setting will feel like or cause.

At 4am, when I awoke, it seemed to me that the machine had to be off. Even though 8cm felt like a solid amount of pressure at 11pm when I first put the mask on, I guess I had sensitized to it, because at 4am I woke up and the mask was on with a good seal, but I felt no pressure. So I gently took off my mask, at which point I suddenly felt what normal air pressure felt like, and realized the mask WAS producing it's normal flow. So after going to the bathroom, I put the mask back on, and found I re-sensitized to the 8cm flow very quickly at 4:00am.

Yet another observation: I normally don't shave everyday, so my first night with CPAP, I was trying the nose mask with long stubble. While there was a reasonable seal, it wasn't strong. Last night, I shaved before going to bed, and there was a Very Strong difference. Much better seal without stubble.

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Permalink Reply by sleepycarol on September 19, 2009 at 11:03am

First of all, I am glad that you are trying to help yourself as you realize the dangers of not treating your apnea.

What machine and mask are you using? If you would give us the full name of the machine it will allow us to tell you if that particular machine collects useful data. Not all machines collect useful data, only the hours used for compliance purposes. Mask fit is also important and each of us is very unique in which mask works best for us.

If your machine does not collect useful data, then you are flying in the dark so to speak. You will need to make very small changes over a period of time to truly know what is going to help. I would stay at the pressure you have started on for a couple weeks at the minimum to see if you truly feel any better. It is hard to judge on just one or two nights, and many of us have had significant sleep deficits that may hinder how you feel right away.

If you don't start seeing a difference after a week or ten days try raising your pressure slightly (not over 1 cm). Keep it there for a time and review how you feel. Using this process should allow you to find a pressure that is adequate to keep your airway open.

Good luck.

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Permalink Reply by Mark Wylde on September 19, 2009 at 11:33am

Hi Sleepycarol! Thanks immensely for your very helpful reply. That's exactly the kind of understanding and advice I need right now. I would never say that doing things the proper professional/medical way isn't the right way -- indeed I think it is; I hope that's obvious. I can't be the only one out here who needs a solution today, but can't afford the proper path. The fact is, I have to balance/weigh the APPARENT RISK of self-treatment now, against what I believe is a FAR GREATER RISK of not treating myself. I hope few or none of you ever have to make such hard choices!

But if any of you DO have to make such choices.. I hope my willingness to speak up and ask these tough questions at the risk of offending the medical establishment -- will help inspire someone else who may be in the same situation.

Regarding data collection... I'm using a Resmed S8 Compact, with heated humidifier h3i. I do not believe it collects much or any data, though I have gone into the "Hidden" therapists Menu and I do see a few settings there. For my mask I'm using a Resmed Ultra Mirage II. Initially I found it a bit obtrusive, but as I fine-tune the positioning, and the seal, and my stubble, already I'm finding it more comfortable than I initially did.

I will say all the discussions about leaks vs. vents initially confused me, because... a vent IS a leak, so to speak!! But I think that was mostly my stubble in the way of drawing the right conclusions! Once I shaved off the stubble, it became obvious that a real stream of air was only coming out of one primary place on my mask (where the vent is).

So if I'm interpreting you correctly, you believe I should stick at 8.0 for a while... and then slowly increase by, perhaps 0.5 to 1.0 cm at a time, INfrequently... as long as I keep seeing/feeling improvement. That sounds like a nice conservative approach.

Can anyone describe any sensations or results that could be characteristic of using too high a setting? Or is there no such obvious set of effects? Again, I'm willing to videotape myself bit by bit if that would help.

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Permalink Reply by RockRpsgt on September 19, 2009 at 4:43pm

Call your your local sleep lab. Explain your situation. Someone will help you.

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Permalink Reply by Mark Wylde on September 19, 2009 at 5:46pm

Rock Hinkle said:

Call your your local sleep lab. Explain your situation. Someone will help you.

Sigh -- I'm tempted to categorize this in the "best-intentions-but-still-stuck-in-giving-the-professional-recommendation" bucket. Please. Save your breath on this sort of reply, because I already agree with you! AND STILL... that's NOT what I'm asking for here. In this thread, respectfully speaking, I'm looking for outside-the-box responses here only.

The fact is, I've done this, multiple times, first ages ago and again about a month ago. With at least 6 or 7 different regional sleep labs. ALL of them, yes, ALL of them... suggested they had a sliding scale that would reduce my potential expenses from $1500-3000 down to perhaps 2/3 of that. And that if I were to be APPROVED (which means filling out endless financial approval forms that test me against some bean counter's near-poverty-level charts), I might be able to handle paying over time with a payment plan.

Unfortunately, both my income AND my living expenses are higher than most of those charts. I tried through one health company that managed a lab -- and failed to meet their minimum requirements for either (a) reduced fees or (b) payment plans!!!

So thanks -- but I'm still exactly where I've explained I'm at.

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Permalink Reply by Mark Wylde on September 19, 2009 at 7:15pm

Hi Jeff,

Fabulous response, MANY thanks for the link and for your personal thoughts.

I do agree I need to get as much data as I can, as soon as I can.

Money is so tight this month I can't even afford to visit my GP/internist without letting the utilities go unpaid. But the first month I can earn a few $hundred cushion, I'll get my doc to prescribe a rental of a full data machine (or try to borrow one) and also ask about an oximeter too. Smart move, whenever I can afford it.

Interesting point about how in the past, many people were automatically given 10cm. I didn't know that. But I'm still not jumping to 10 automatically. :)

The more I read... with the typical full range of 4 to 20... 7-8 seems like it's on the low end... whereas 14-16 and higher seem pretty high. And as I said, with self-titration, failing having any data, I'd just as soon stay on the conservative side. Combining that with the mixed-opinion advice about raising titration level intervals... my guess is that I'll stay at 8 for a few days, then depending on how I feel, potentially go up 1 cm every 4-5 days until I hit 10. Once/If I get to 10cm, if I go another 4/5 days and still think I should raise it, then I'll adjust in only 0.5cm intervals.

With your advice, I'm also going to start videotaping. Thanks.

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Permalink Reply by sleepycarol on September 19, 2009 at 7:47pm

Another options is try your local want ads section online. Many times fully data capapble machines can be had for a mere fraction of the cost of a new one. Also, try craigslist, post an ad on some bulletin boards in your area, etc. If you do get a script, try www.cpapauction.com for a low cost machine. I know you have a machine now that isn't data capable at this point, the idea is to get one that IS data capable.

Do you know anyone that personally uses a cpap? You know there is always the chance that they maybe needing another machine and could accidently leave it at your house for awhile.

I know you are in a tight spot, the economy stinks -- at least in this area of the country.

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Permalink Reply by RockRpsgt on September 19, 2009 at 8:39pm

you probably called during the day though. you need to call at night. talk to a tech. We care and understand way more than people give us credit. When you call during the day you get an administrator. Sometimes you have to bypass the red tape. Getting an actual person to help you is going to better than nameless faces on the internet who know nothing of your medical history. this is thinking outside the box.

Mark Wylde said:

Rock Hinkle said:

Call your your local sleep lab. Explain your situation. Someone will help you.

Sigh -- I'm tempted to categorize this in the "best-intentions-but-still-stuck-in-giving-the-professional-recommendation" bucket. Please. Save your breath on this sort of reply, because I already agree with you! AND STILL... that's NOT what I'm asking for here. In this thread, respectfully speaking, I'm looking for outside-the-box responses here only.

The fact is, I've done this, multiple times, first ages ago and again about a month ago. With at least 6 or 7 different regional sleep labs. ALL of them, yes, ALL of them... suggested they had a sliding scale that would reduce my potential expenses from $1500-3000 down to perhaps 2/3 of that. And that if I were to be APPROVED (which means filling out endless financial approval forms that test me against some bean counter's near-poverty-level charts), I might be able to handle paying over time with a payment plan.

Unfortunately, both my income AND my living expenses are higher than most of those charts. I tried through one health company that managed a lab -- and failed to meet their minimum requirements for either (a) reduced fees or (b) payment plans!!!

So thanks -- but I'm still exactly where I've explained I'm at.

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Permalink Reply by Mark Wylde on September 19, 2009 at 9:59pm

In response to Rock Hinkle:

Aha.. now that IS thinking outside the box. Interesting. It just never occurred to me that a tech could or would do anything that would potentially bypass the red tape. I always ASSUMED... that the process of getting a sleep study done would always have to be managed by the office, through the front door, in the daytime, etc., and that an MD's involvement would have to be involved which in turn would be managed and billed through the front office, etc.

I'm not quite sure how a tech could help me ... in an outside the box way ... i.e., what questions to ask... what might/could they do that is outside the usual 'bounds/rules/system' that could still be helpful. But I'm definitely game to call a sleep center sometime at night and ask. Hopefully I can find the right number where a tech would actually answer. Normally sleep centers only publish their front office numbers, not the # to the labs themselves.

Anyway, thanks for clarifying. Very interesting idea.

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Permalink Reply by RockRpsgt on September 20, 2009 at 5:37am

You may not be able to get an actual study out of it, but having a person that you can contact would be most helpful. They might also be able to help with equipment. you would be surprised the amount of extra stuff a lab gets. It is possible to build a medical team without insurance. more difficult, but possible. Have you tried contacting your local A.W.A.K.E. chapter? Do they have a low income clinic where you live. In Indy it is called an action clinic. There are also organizations like the Reggie White Foundation.

http://www.sleepapnea.org/cgi-bin/databasenew.pl?FL&&State

http://www.reggiewhitesleepdisordersfoundation.org/

Mark Wylde said:

In response to Rock Hinkle:

Aha.. now that IS thinking outside the box. Interesting. It just never occurred to me that a tech could or would do anything that would potentially bypass the red tape. I always ASSUMED... that the process of getting a sleep study done would always have to be managed by the office, through the front door, in the daytime, etc., and that an MD's involvement would have to be involved which in turn would be managed and billed through the front office, etc.

I'm not quite sure how a tech could help me ... in an outside the box way ... i.e., what questions to ask... what might/could they do that is outside the usual 'bounds/rules/system' that could still be helpful. But I'm definitely game to call a sleep center sometime at night and ask. Hopefully I can find the right number where a tech would actually answer. Normally sleep centers only publish their front office numbers, not the # to the labs themselves.

Anyway, thanks for clarifying. Very interesting idea.

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Permalink Reply by sleepycarol on September 20, 2009 at 10:57am

Rock,

If I read his post correctly he is one of those that falls through many of the cracks of our health care system. Makes too much for most aide, but not enough to afford the medical he needs.

My son-in-law is in that category now. He doesn't have health care where he works (it is available but the employer pays none of the cost associated with it) as it is too expensive and still cover their living expenses. He has a medical need and does without his meds as they run $200 a month.

A family plan can run as high as a $1000.00 a month out of pocket for premiums. My oldest son found a catastrophic plan for their new baby at $100 a month that has a high deductible and are praying he doesn't get sick. This son and his wife are covered through insurance at work (different school systems as they both teach) -- but with daycare cost running at $500 a month they didn't feel that they could afford another $500 for the insurance premium (just for the baby).

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Permalink Reply by Mark Wylde on September 20, 2009 at 11:12am

Hi Sleepycarol,
Yes, that's accurate. I don't qualify for much of any aid according to any of the medical programs I've applied at already. My income is typically $10K higher than the top of most "worthy of aid" charts. And my expenses are right up there with it. (Let's not go to the "reduce your expenses" or "downsizing" recommendations, either. I'm not being stubborn; I've already done what I can for the moment). I don't even have a catastrophic plan, either -- but I should. However, I'll postpone that until I've spent whatever little extra money I have on anything connected to getting the data/equipment I'll need for an optimal long-term sleep solution, etc.

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