Your opinion on what I should do?

Sleepless on LI wrote:6 is really low, CG. That is almost bare minimum when it coms to therapy. And your own auto told you that 6 does nothing, so thank goodness for the approach you took.

I know! I kept saying "I can't breathe at this pressure!" but my GP here at school wouldn't listen to me. So I just asked my GP at home for an auto over the summer so I could find out what I needed myself. She's fabulous, knows I'm proactive about my own healthcare and always do lots of research. She would pretty much write me a script for anything I asked her to (well, within reason ).

Why would this doctor tell you to get used to that? It is supposedly the worst position to sleep in if you have OSA. [...] I was a bit surprised over that suggestion. Hope you didn't follow it.

I know, I was surprised, too, Lori. But I think his reasoning is that I'm having all these problems with mask leaks, and that's one way to keep a mask from leaking. Rather than finding the right mask, which doesn't seem likely since the insurance only pays for 2 a year and I'm on a college student budget, I think he thinks this would just be a good way to stop the leaking. He DID tell me "Your autopap pressures will rise a bit when you start sleeping on your back because your throat will close more readily," so he does know what's going on I think. Luckily for me, when I managed to do it one night, I had EXTREME back pain the next morning (to the point I had to take a muscle relaxant), so that "option" seems out for the time being.

...I would probably go with the lower of the two pressures if you want to try the straight CPAP and see how you do.

That was my instinct, too. I was still EXTREMELY tired and groggy today (just left it on 12 last night), so I think I'll try 11 tonight and see if that's any better.

What slightly...and I mean slightly...concerns me is that over the last couple of weeks the auto has twice hit 13 (though only for a few minutes) and once hit 14 (again, only for a few minutes). I think that's likely a fluke, though.

As long as you're not having any trouble with aerophagia or excessive leaks with your mask, or anything else that happens at higher pressures, I can't see CPAP as being a mistake.

Well, since I've tightened my F&P HC431 FFM so tightly that it rubs my face raw and makes my chin bleed, no, I've hardly had any leaks at all. I think I've said this in previous threads, but just in case - I spent the last 6 months trying to find some adjustment that was not too tight but not leaky, and there's no such place on this particular mask, at least not as far as MY face is concerned. And I've never had aerophagia, luckily.


Alright, we'll try her (Yes, my CPAP is a FEMALE love-sick, face-sucking octopus, apparently, since she's so reliable and constant - HAH! ) on 11 tonight and see what happens...or maybe it should be 11.5... darn, I hate this indecisiveness I've had since my apnea really started being problematic.

Okay, since most people on this thread (Thanks to wading, ozij, rock and roll, esther, and another_guest for responding!) think I should stay at 12, here's what I'm going to do -

Because my gut is saying "Go with 11," I'm going to try it for two nights. If that doesn't work, I'll [thoroughly confuse my body and] go back to 12 for two weeks. If I'm still tired by then, it'll be back to 11 for two weeks. Don't ask me where 11.5 is going to come in.

Oh yeah - and I leave for Spain in a little over 9 weeks now - so I'm running out of time to experiment, as I don't want to be "experimenting" abroad!

As one who has fought to get my AHI down from the teens, and who now averages around 5, your observation that 1.8 isn't TOO high is exactly right! Your AHI is very good. Anything under 5 is usually ok. Its great that you are trying to find the optimum pressure, but don't fret on little increases. If you are still feeling sleepy and have been on xpap for awhile then there may be something else going on.Guess i'm just jealous when ppl fret about AHI numbers that are so low.

An AHI under 5 is more than likely not the cause of daytime sleepiness. Do you have restless leg maybe? You need to talk to your doc and have a MSLT, or PVT test, or Maintenance of Wakefulness Test. If you are having daytime sleepiness it is quite possible that you need to be medicated to resolve that (do a search on Provigil) If you want to wait 2 weeks "lab ratting" and put yourself at risk chasing an ever elusive 0 AHI (Risk of falling asleep driving or walking out in front of a bus or something) its your choice, but to get to the bottom of this you should be looking at other factors.

MSLT - Multiple Sleep Latency Test
PVT - Psychomotor Vigilance Task


Here is a good article by a DOCTOR on sleepiness despite CPAP.

Link to article

With a titrated pressure of 6, and your auto spending a lot of time above that, I would be highly suspect of it being a problem with the auto not responding, as much as you have some other unaddressed issue. Its your health and your call, but playing around with pressure settings and not addressing what really is the problem will only delay proper treatment. With a already low AHI, you need to look elsewhere.

Got guested AGAIN!

CG.

Like Christinequilts said to me when I was obsessing over AHI's and tiny changes between auto and cpap, think of them like pennies and the difference between $1.03 and $1.18 is not too much. HOWEVER, if you're not feeling good yet, there may be something else under this whole mask of AHI concerns and pressure that you're overlooking, and Mikesus has a good point.

Another thing I was hearing from your last post was that maybe 11 or 12 is NOT high enough. Maybe the thing would be to use 11 as your LOW number on auto and go just past the 13 you have seen lately on your figures. Maybe 11-14 auto might help. As long as you're not getting gassy in the tummy (thank God for that, believe me) and are able to keep a mask from leaking and causing you new troubles, I would keep monitoring my data and see if it keeps going up to 13 or so and perhaps give that a try.

Just one word of advice. GIVE A SETTING A WEEK AT LEAST BEFORE CHANGING IT. Don't go night to night and then say, "Oh, I don't feel better, so I'll change it and see what happens." I made that mistake, too, and you really aren't being fair to yourself and that setting by hastily making changes. You need to give it enough time so that you have a true and more accurate pattern emerging and you can really tell what is going on.

Also, you didn't mention if you tried moleskin to try to pad those areas that get really sore at night. It is very helpful when a mask rubs you really bad, like in your chin. It is a bit hard to peel off, but if you're sleeping eight hours or so with pain, I'd rather have the pain only once in the morning when I'm NOT sleeping than have it disturb me all night.

Good luck, CG. I really hope you start to feel better soon. Think about what Mikesus said. He may have something there.

CollegeGirl wrote:Okay, since most people on this thread (Thanks to wading, ozij, rock and roll, esther, and another_guest for responding!) think I should stay at 12, here's what I'm going to do -

Because my gut is saying "Go with 11," I'm going to try it for two nights. If that doesn't work, I'll [thoroughly confuse my body and] go back to 12 for two weeks. If I'm still tired by then, it'll be back to 11 for two weeks. Don't ask me where 11.5 is going to come in.

Oh yeah - and I leave for Spain in a little over 9 weeks now - so I'm running out of time to experiment, as I don't want to be "experimenting" abroad!

You haven't been at it for a couple of weeks, you have been at it since July! (at least from one of your earlier posts) If you aren't feeling better by now, twiddling with your pressure isn't going to change things a whole lot. (Look at Loonlovr for a perfect example.) The general public consensus was to keep playing with the pressure settings til he got it right. He never got it right because it wasn't the pressure setting that were the cause of the problem!

You mention that you are going abroad in a short while, if I were you, I would do my best to get tested for daytime drowsiness, have a full blood workup done, and anything else that the docs can think of to find out why you are drowsy. It could be CFS (chronic Fatigue Syndrome), hypothyroidism, hypercalcemia, or hypo/hypernatremia and no amount of CPAP pressure will fix that!

I am sure that the help offered is well meaning, but if you have been on CPAP for more than a few months and you are still experiencing daytime drowsiness, you need some expert guidance to resolve this.

ACK! Guested yet again!

just my observation and my humble opinions

a few weeks ago it was CG's issue with seeing the sleep doc where she now is because she needed a new mask and she was having problems getting her college work done

she got a lot of empathy and advice out of people on how to deal with this

she saw the sleep doc, thought he was great

now the issue is that the mask isn't right or the pressure isn't right or it is that with her asthma she can't humidify (sounds fishy to me but then I am not a doc just a patient with asthma and heated humidifier)

but now that she got her mask and is rejecting it she posted that her doc back home would have scripted whatever she wanted

things don't change overnight and it seems with this all planned out trip (to Spain I think it is has) she has placed her health second at all costs to making this trip and maybe wants to blame people on this forum if it doesn't happen

mikesus wrote:
You haven't been at it for a couple of weeks, you have been at it since July! (at least from one of your earlier posts) If you aren't feeling better by now, twiddling with your pressure isn't going to change things a whole lot. (Look at Loonlovr for a perfect example.) The general public consensus was to keep playing with the pressure settings til he got it right. He never got it right because it wasn't the pressure setting that were the cause of the problem!

Mike, I realise you are busy "frying other fish" these days, but it seems you missed the essence of what CG is trying to do here. She was prescribed a cpap at 6cm and was lucky enough to get an auto-pap that ultimately showed she needs something more in the neighborhood of 12cm. She is currently giving fixed pressure therapy at 12cm(+/-) a try. As far as I know she has done no "twiddling" with her pressure setting. BTW, she has had much difficulty getting in to see her Doc, so I assume that arranging to schedule a battery of tests may be difficult for her to accomplish.

lurker? What in the hell did I do to you? I think you've seriously misunderstood my postings. I think, as mike and lori have suggested, there's somethinge else going on that hasn't been pinpointed yet. That's why I'm experimenting with fixed pressures. I've had the same problem (extreme daytime sleepiness/grogginess/lack of short-term memory) for years, and after months of being on CPAP with no results, I've been trying to find the cause, and have been asking for advice here at every step of the way because I know so little.

I'm glad YOU are able to use a heated humidifier with your asthma. I wish I could - it might make nasal pillows doable for me and things more comfortable in general. However, the first night I used MY heated humidifier, I woke up in the middle of the night having an asthma attack and had to go to the hospital. I hadn't had an asthma attack in the 10 years before that, and there were no other environmental differences that could have brought it on. Just in case it was something else, I tried it again a week later for a SHORT, short time and felt things closing up again and immediately stopped using it. What else could it be? To me, it sort of makes sense, though - I grew up in Virginia where the summer nights are hot and humid - and it was always during those summer nights (in our unairconditioned house) that I would have asthma attacks. Heat + humidity = asthma attack for me. Things are different for you, and that's great, but that's no reason to call someone "suspicious." There are different kinds of asthma, and different triggers for asthma in different people. Just because someone else's asthma is different than yours is no reason to be rude. I suggest that, if you still don't believe me, you google "humidity and asthma." You'll find that humidity is a known trigger.

Since you seem to be "suspicious" of my story, I'll sum it up for you:

I started out CPAP therapy in March titrated at a pressure of 6 with a nasal mask (I don't know which kind - it was a Respironics, though. Probably one of the freebies the DME gets). I felt like I was smothering, but my GP here only raised my pressure to 8. I still felt suffocated and thought that maybe since I breathe through my mouth during the day, I needed to at night also, and asked for a full face mask. I've had this mask since April or May - I can't remember which. Probably May. I could never get the mask adjusted comfortably, and it was constantly leaking. In July, after reading "the other" board, and still thinking it was quite possible my titration was inaccurate (after all, during my titration study, I only slept for 30 minutes), I decided to ask my GP at home for an auto so I could get the software and SEE what pressures the auto used. Lo and behold, it stays around 11 or 12. For a few weeks I felt really, truly, good - then my mask started leaking even worse and waking me up, and I started feeling bad again. That was around the same time I went back to school (end of August/beginning of September). I called my sleep doc IMMEDIATELY upon returning to school, and he couldn't see me til November 18th. As of yet, I wasn't feeling bad enough for it to interfere with my classes. A few weeks later, though, it was - and I called trying to get my appointment moved up. They said they'd call if there were any cancellations, but there never were. Things got worse and worse, and finally (two weeks after my GP faxed something over saying I needed to be seen ASAP) I got to see him. He prescribed nasal pillows and sleeping on my back. I used Ayr gel with the nasal pillows, but twenty minutes into it had a bad nosebleed. So, YES, I rejected those as an option. Geez! Can you blame me?

There. Are we clear now? Do you understand WHY I've been trying so many different things? I'm desperate, damn it! I'm tired and exhausted and possibly about to fail my classes and I'm getting frustrated because nobody knows what's really going on. Meantime, my insurance has a yearly cap of $3000 (meaning they won't pay out more than that per year - it's crappy insurance that I get through the school). So far this year (my insurance goes by the school year) there's been the sleep doc appointment, a GP appointment and the one (soon, two) new masks. It's just a guess, but I'm guessing that puts me up around $1000. I'm concerned that if I get another sleep study, they won't pay for the auto when it's time for them to stop renting and buy it out because they will have exceeded the cap for the year. My family (thank GOD for them) already pay for my asthma/allergy meds while I'm in school because my insurance only pays $1000 per year total for prescriptions. With my meds, I've gone through that in about two and a half months. There's no way my family could help me out any more than that. So I'd be stuck if the insurance company wouldn't pay for the auto. That is, if the insurance company would even pay for the sleep study, since I just had one back in April for my titration.

And yes, there's the matter of timing with my studying abroad in Spain. My school is paying for me to study abroad in Spain for four months. I need to do this in order to become bilingual before I graduate, as, even after six years of Spanish between high school and college, I still speak it badly. They say nothing improves your speaking like actually going abroad - and that's what I need to do. I'm an English major, so I need something to make me more marketable once I graduate (I'm a fat chick, too, if you couldn't tell - so I already have enough problems finding jobs), and being bilingual is it. My future is at stake here. So would I put my treatment on hold for four months for a once-in-a-lifetime opportunity to significantly improve my future? If it would risk my life, no. But I HAVE my CPAP, so it's not life-threatening anymore. If it's just dealing with a little daytime sleepiness, absolutely - you bet I'd wait four months in order to not lose this opportunity. But I'd rather not have to spend my time in Spain SLEEPING, so I want to get this taken care of before I leave.

And as far as "scripting what I wanted," my GP at home DID script what I wanted - she gave me an auto. THAT was what I wanted so that I could determine my correct pressure. What's wrong with that? I'm not blaming ANYONE for my problems, much less people on these boards. The people here are very knowledgeable - I keep in mind that no one here is a doctor, but can only offer advice based on their own experiences - but still, there's a wealth of knowledge to be had here. I would NEVER blame anyone here for anything - it's MY body and MY treatment and MY choice to take the advice or not to take it, so if anyone is to blame for anything, it would be me. However, I don't think ANYONE is to blame (including me) for my lack of success with my treatment. I'm doing the best I can to look at treatment from all angles and not giving up. After more than six months of problems, I'd say I'm stronger and more persistent than most for sticking with it and not giving up. If you'd like to call me "suspicious" for that, then go ahead.

Can state that my asthma is not triggered by my HH, but rather by the lack of use of a HH. People have different triggers for Asthma. Not something to be suspicious of, something to be thankful for.

What makes Asthma Worse - Link to National Jewish Research Center

Hey CG. The bloodworkup shouldn't be that much and you could rule out a number of the major players such as hypothyroidism, hypercalcemia, and hypo/hypernatremia. I would think it would be the cheapest of all the tests but you would have to check with your doc/lab to be sure. If your family has a history of thyroid problems, then if it were me, it would be the first place I would start looking.

Thanks, Mike. And thanks for your previous suggestions as well. I'm supposed to go see my sleep doc again in about 5 more weeks (shortly before I leave school for winter break), and I'm going to talk him then about working to narrow down the cause of my drowsiness. By that time, I should have gotten my new mask and had it for at least a few weeks, so I'll know if the different mask makes a difference in my drowsiness. In the meantime, if things aren't better for me soon, i'm going to take him up on his offer for Provigil. I'm somewhat reluctant to take it only because if I'm "artificially" awake, how will I know if I'm still having sleep issues? I guess I'll know the difference somehow. I just have to do what I have to do to get through the semester and get my work done.

I imagine there are SOME things the doc and I can rule out in the month I'll have between the end of the semester and when I leave for Spain (the bloodwork, I would think, could be done that quickly, and I wouldn't think would be that expensive). We'll have to work "long distance" since I'll be home in VA instead of here in MA, but I think using a lab in VA and having the results sent to him would be doable. I'll talk to him about it, and also express my concern about the insurance cap and buynig out the auto, and see what he suggests.

CG,

I am so sorry you got so upset by the "guest's" post. I was about to answer it and then saw your reply and knew by its length and emotional content how much he/she upset you.

There seems to be a bit of "guest" posting that show insensitivity to others on this site. The best advice you will get from me today is, ignore these unhappy people and feel sorry for them. I've said it a million times before and someone always gives me flack for it, but it always comes from people who will not put their name on their post, hiding behind anonymity from their thoughtless ways of saying what they want. Instead of putting so much energy into answering these types, just say a prayer that whatever is causing them to be so angry or full of venom subsides so they can become happier and nicer people and put the rest of the energy into getting yourself on track. Everyone knows what you wrote and that you would never blame anyone on this site for anything, so don't let it get to you. I used to let guest posts bother me, too. Not anymore. Now I just feel sorry for the angry, lonely people that they come across as and hope that whatever thorn is sticking in their sides goes away and they feel better.

I find it helps if you think of obnoxious guests as fellow apneics who are either untreated or are not being successfully treated and are still suffering all the problems of sleep deprivation, etc.

In other words, pretend they can't help it and pity them.

Maybe it isn't true, but it sure beats the alternative of assuming they are deliberately obnoxious, abrasive and vile!