No Answers Yet For Problems With ASV

[Paper_Nanny]

]What DSM says and what StillAnotherGuess said made sense to me. Sorry BrianInTN, I had trouble following your argument. In support of what I posted and what SAGuess posted and DSM clarified, just look at the wave forms. It seems obvious that pressure intervention was taking place.

The wave form data came from the new machine, the one that has PS min=0 and PS max=4. As you pointed out to me, that is allowing it to act like an ASV, since PS min and PS max are not equal. On the other machine, PS min=4 and PS Max=4, which kept the EPAP settings locked in place, like a BiPAP.

Deborah

[Paper_Nanny]

Can we please just go back to talking about our avatars...

Good idea.

Since that Rapture Thing is like so yesterday, I think I'll go back to my normal avatar.

Normal?? You call that normal?!?

Usual, customary, typically used, perhaps, but normal?? I dunno about that...

[SleepingUgly]

Wow, this thread is really too long for me to catch up on at this point, but I saw this:

At night, when I am going to sleep, the central auditory processing problems are a huge issue. So much trouble getting to sleep because I can't stop hearing all the sounds. Husband breathing, dog sighing, wind blowing, neighbors laughing, cars going by, train whistle, etc. etc. I tried ear plugs, but they just dull the noise, not take it completely away. And, with ear plugs in, there is a tremendous amount of noise from... I'm not really sure what all it is. My pulse, my breathing, my body expanding and contracting as it aligns itself to the magnetic poles...

I have the same problem with ear plugs magnifying my breathing, heart, etc., and I find it very difficult to sleep like that. Have you tried white noise machines? I sleep with literally 3 white noise machines and a loud fan. I think that would work for blocking out all the sounds you mentioned (assuming by "breathing" you don't mean your husband snores!). These are the best white noise machines, in my expert opinion:

http://www.marpac.com/sound_cond.asp

I would get the one with the high and low settings (the 980A). I would NOT get the travel one if that's the only one you're going to use, but if you like the regular one and are going to add one to your arsenal, that one would be OK. It has the advantage that it's louder than the regular white noise machines, but I am not as fond of the sound (it's more annoying), so I keep it farther away where I can't hear the "details" of it.

If you could block those sounds, could you get off the Trazadone? I don't know what the odds are of next day sedation with Trazadone, but if there is an issue with it, perhaps you're playing a bit of a tug of war between the Trazadone at night and the stimulants during the day.

[Paper_Nanny]

there is also the preaforementioned issue of the breathing irregularity of phasic REM. And I think that as the REM-suppressant medication effect wears off in the latter part of the night, you have a pile of it (that might be an interesting thing to look for in your raw NPSG data).

Okay, I am interested in interesting. And actually, I want the data because making unexpected requests of my medical care providers is, in and of itself, interesting. When I call the sleep lab to ask for the raw NPSG data, what exactly do I ask for?

You probably want to leave the variability of phasic REM alone (including centrals that are in there. They are generally considered to be normal phenomenon.)

Okay. So, any irregularities during phasic REM, I can cross off the list of Events About Which I Shall Be Concerned.
Also cross off that list Any Central Apnea Events Occurring After A Sigh.

the coarseness of that pressure channel makes everything look like a PP.

I don't understand what that means.

In this area:

breathing looks a little irregular, but that's about it. Because of its location, it could be REM, and the algorithm has opted to bang on it with some IPAP. Was the first one justified by some FL characteristic? The response Is a breath late, and anyway, it just looks a little noisy to me, and perhaps artifactual.

The waves of my breathing look a little noisy? Artifactual as in maybe I was turning over or something, causing irregular breathing? I have some questions about making sense of the waves, including how to see that the response to the first one was a breath late, but I will save those for a later post, once I have a chance to cut out some of the other areas I had questions about.

The last couple of DLs with AHI 9.0 - 10.1 are certainly a vast improvement over the 19.0 - 36.0.

Yes, those are much better numbers. Still not great, but better.

I think it's very important to keep in mind the priorly preaforementioned points-- that because of at least 3 factors, your underlying sleep architecture is probably fragmented. Not horrifically so, but I think you're drifting over and under the 100 arousals/night threshold that tends to predict the incidence of EDS

Three factors... Medication and... and... Oh, *#@%(!! I can only remember one of them!! (Yes, I will wash my hands off with soap before I eat!)

To somewhat paraphrase NotMuffy--- If, after all the dial wingin', there's still evidence of underlying sleep fragmentation, then the next steps would be to optimize the factors that affect sleep continuity, by addressing medication issues, along with addressing two other priorly and previously preaforementioned issues, which have been forgotten by Paper_Nanny. Is that an accurate paraphrasement? No change in the meaning, only change in the wording?

For instance, sitting down with a sharp pharmacist and looking at drug hygiene may be helpful (if that hasn't already been done). Stuff like looking at nighttime duloxetine dose and seeing if that's the best way to meet goal (does the lowering of arousal threshold create more issues than amelioration of other symptoms). Or if anything can be done with the methylphenidate - modafinil thing.

Who was it who said in an earlier post that the word hygiene reminded him of junior high health class? Was it Mr. Bill? And did I totally mangle the specifics of what was said? I have bad associations with that word, tool. Sixth grade sex education, separate classes for the boys and the girls. The boys got to learn interesting things about human reproduction. The girls got to learn about menstrual hygiene. Because of that, the word hygiene has traces of sexual discrimination attached to it in my mind. Why didn't the girls get to learn both about human reproduction and about menstrual hygiene?? Working in group homes for people with developmental disabilities. Endless hygiene goals for the people living in the homes. One of the staff members I supervised loved the word hygiene. I associate the word with her and feel somewhat nauseated. Hygienics is a slightly more palatable form of the word. Interestingly enough, her second favourite word was menses.

Possibly I can sit down with a sharp pharmacist. I think Holly at my usual pharmacy is sharp, but maybe I have misjudged her. I can ask her if there is a time we can sit down and review my drug list. Specifically, I will be asking her-- Which medications are causing sleep fragmentation? Would it make a difference if I changed the times on those medications? (eg take my second dose of duloxetine earlier in the day) Are there medications that do the same thing without causing sleep fragmentation?

What is the issue with the methylphenidate- modafinil thing? I wonder how much of my need for prescription amphetamines and other Keep Me Awake drugs is a question of which came first, the music or the misery, as Fall Out Boy would put it.

Of course, drug wingin' certainly has it's risks. An abrupt baclofen - duloxetine discontinuance would undoubtedly result in something that looks like the final scene in Total Recall (I know you know that, but I'll bet more than a few others don't).

I will take the restraints off if you promise not to hit me!!

Deborah

[SleepingUgly]

What is the issue with the methylphenidate- modafinil thing? I wonder how much of my need for prescription amphetamines and other Keep Me Awake drugs is a question of which came first, the music or the misery, as Fall Out Boy would put it.

What IS the issue with the methylphenidate-modafinil thing? They are both wake-promoting agents. I don't know why you're on both, although that's not uncommon, and sometimes the medications are used according to their duration of action. For example, you might not want to take modafinil at a particular time of day because it may cause insomnia, but immediate release Ritalin may not cause the same (or vice versa).

I do think that whenever you're on medications that are sedating, such as Neurontin, depending on the dose, and possibly Trazadone, if the sedation lingers the next day, there is the potential for a tug-of-war between those drugs and the stimulants. But if you need them, you need them. The question is, do you need them.

[Paper_Nanny]

Wow, this thread is really too long for me to catch up on at this point

Just jump in wherever you are. You'll probably be able to follow along.

I have the same problem with ear plugs magnifying my breathing, heart, etc., and I find it very difficult to sleep like that.

Oh, good! Well, not that it is good for you, but I appreciate that validation. The PA at the sleep clinic implied I was being silly to say such things and/or that the magnification of internal sounds was a function of my imagination, not something anyone else would experience.

Have you tried white noise machines? I sleep with literally 3 white noise machines and a loud fan. I think that would work for blocking out all the sounds you mentioned (assuming by "breathing" you don't mean your husband snores!). These are the best white noise machines, in my expert opinion:

http://www.marpac.com/sound_cond.asp

I haven't tried white noise machines. The price range is out of what I could afford. But, I am now thinking about music. Last summer, when I had surgery, there were a couple songs that I listened to a lot, because it was music I could get lost in. I would listen to it and become totally focused and absorbed in what was going on in the music and it really helped with pain relief. Sort of a hypnotic effect. Most of Will Ackerman's Sound of Wind Driven Rain Album and Book of Love by the Magnetic Fields. I'll try to figure out the logistics of setting up that music to listen to as I go to sleep. That might help with the other noises. Thanks for the suggestion.

If you could block those sounds, could you get off the Trazadone?

Only way to know is to give it a try.

I don't know what the odds are of next day sedation with Trazadone, but if there is an issue with it, perhaps you're playing a bit of a tug of war between the Trazadone at night and the stimulants during the day.

I have been on some combination of stimulants since shortly after my MS diagnosis, to help combat the incredible level of fatigue I experience. Course, even back then, it could be I was combating not only fatigue, but also the sedating effects of other medications I was taking. It is always a such a difficult balance with multiple medications. Are the benefits of the drug worth the cost I pay in terms of side effects? And given the incompetence of some of the prescribing physicians (past and present), I often feel like I am flying in IFR conditions with all my instruments malfunctioning. When I finally decide to ditch the plane, I jump, but I am not sure if I have a parachute or not. It is scary. Very very scary at times.

And when I went to post this, I saw SleepingUgly's next post and decided to reply to that one in this same post. (Thus the edit)

What IS the issue with the methylphenidate-modafinil thing? They are both wake-promoting agents. I don't know why you're on both,

Because last time I needed to adjust my Stay Awake medications, that was the combination that worked the best with the fewest known adverse effects.

I do think that whenever you're on medications that are sedating, such as Neurontin, depending on the dose, and possibly Trazadone, if the sedation lingers the next day, there is the potential for a tug-of-war between those drugs and the stimulants. But if you need them, you need them. The question is, do you need them.

All's I can say about that is when I was put on each of the medications I am currently on, there was a need for it. None of them were prescribed just for the heck of it. Also, I do periodically go through my medications and try lowering the dose on things, to see what happens. Sometimes this are entirely groovy, such as when I quit taking Darvocet and had no recurrence of dystonia. Sometimes, what happens is not so groovy, like last time I lowered my gabapentin dose and was fairly well crippled by the resulting nerve pain, especially the trigeminal neuralgia.

Deborah

[SleepingUgly]

I have been on some combination of stimulants since shortly after my MS diagnosis, to help combat the incredible level of fatigue I experience. Course, even back then, it could be I was combating not only fatigue, but also the sedating effects of other medications I was taking. It is always a such a difficult balance with multiple medications. Are the benefits of the drug worth the cost I pay in terms of side effects? And given the incompetence of some of the prescribing physicians (past and present), I often feel like I am flying in IFR conditions with all my instruments malfunctioning. When I finally decide to ditch the plane, I jump, but I am not sure if I have a parachute or not. It is scary. Very very scary at times.

I haven't followed your story so I don't know if treating the OSA may alleviate some of your fatigue, although undoubtedly not all of it, due to the MS. I was on 1200mg of Neurontin at night, went down to 800mg at night (not during the day), and now that I'm decreasing it, I am realizing that it was likely contributing to my daytime sleepiness, which I was then combating with provigil and caffeine. Now it wasn't the sole cause of my EDS, but now that I'm treating the OSA, I may be able to back off the Neurontin even more (I hope!). But if you're taking it for pain, you might not have that option. The Trazadone used only to block sounds...that part sounds a little more like something you may be able to work around more easily. But then again, I don't know if the Trazadone poses a daytime problem for you, and apparently neither do you.

It is a tangled web where the more meds you're on, the harder it is to figure out what is a symptom and what is a side effect. I wouldn't recommend making changes except under supervision of one or more of your incompetent doctors.

[Paper_Nanny]

I had this in an earlier reply to SleepingUgly, but decided to pull it out and put in a post of its own. Make it a little less likely to be skipped over, I hope.

I hope my replies to any questions/ suggestions/ remarks/ etc. about my medications don't come across as hostile and/or defensive and/ or downright rude. Not just to you, SleepingUgly, but to anyone with whom this comes up. When it comes to medication issues, I have been jacked around, jerked around, and generally #$*&^ed around from here to there to everywhere in between over the past ten years. Sometimes by well meaning but ignorantly uninformed physicians, sometimes by not so well meaning @$$ @(!&*#ers. More often than not, I feel like it is a battle to get what I need and to not be forced to do what I don't want to do. It is a battle that I resent having to fight, one I shouldn't have to fight, one that has , over the years, taken much energy, along with pieces of my soul.

I'm not saying don't ask anything about my medications or don't comment or suggest. I am not saying that at all. I welcome the insights others may have. I just want to say in advance, I am sorry if I respond in a less than receptive way. Brings to mind the last line of the poem "He Wishes For the Cloths Of Heaven" by William Butler Yeats. Tread softly because you tread on my dreams.

Thank you in advance for your understanding about this and for your willingness to continue gently exploring this area.

Deborah

edit to fix typo in second to last line

[Paper_Nanny]

Can we please just go back to talking about our avatars and mask leaks and stuff? This is hard.

I would like you to talk about your avatar, yes, please. I can't figure it out. I waver between Walnut and Sadly Misshapen Stack of Pancakes.

Deborah

[SleepingUgly]

If you can't afford a Marpac sound machine, perhaps you already have a loud fan or need one anyway. I use a Vortex that I bought at Bed, Bath and Beyond and it is pretty loud. The music is a good idea too.

I understand what you mean about the medications. Even when I was on the most medications ever, I was on many fewer meds than what you're on. I do think that a very savvy pharmacist might be able to speak to things like whether medications interact, whether they might cause side effects that you are then forced to combat with a medication. Sometimes there is no choice, or it's the best option even though it creates side effects. Very tricky stuff. I wish you much luck in sorting through this.

[Dojers]

How long does it take a semi-literate blonde to start to understand waveforms and what all those crazy acronyms mean??

About as long as it would take if the semi-literate blonde died her hair and became a semi-literate brunette. Or, even better, dye it so you become a readhead. That will take care of both the literacy and the blonde problems!!

Just wondering.....oh, yeah, and how did/do you go about figuring out this stuff? Just keep reading the threads and trying to make sense of it all?

Yeah, read a lot. Ask a lot of questions. Read more. And not just read on forums like this one, but also searching for stuff on other sites. But be careful when you read. I don't think anything has warnings about content possibly causing you to snort ice tea out of your nose.

Deborah

I've been looking in other places - and I've noticed that no one has the courtesy to alert to the possibility of snorting fluid out of your nose (I've blown coke - the kind you drink not the nasty powder kind! - out and that bloody hurts lots worse than iced tea!). And dying my hair isn't even an option - you can take the blonde out of the hair but you can't take the blonde out of the head

[Dojers]

Can we please just go back to talking about our avatars and mask leaks and stuff? This is hard.

MAN, do I know where THAT is coming from

[Paper_Nanny]

This will make edit number seven on this post. For some reason, when I posted it before, I was getting a 500 Internal Server Error. It took me multiple posts to narrow down the source of the problem. Problem source was listing all the settings on my machine. I don't know why there was a problem with them, but ha! There you go! For some reason, it was a problem. Thus the writing out of things that would typically be abbreviated. Sheer insanity, in my opinion!!

Last night's data... Machine set like it was back in the good old days--

BPM was Auto;
Maximum Pressure at 25;
Maximum Expiratory Positive Airway Pressure at 15;
Minimum Expiratory Positive Airway PressureEPAP Min at 8;
Maximum Pressure Support at 15;
Minimum Pressure Support at 0.


Why did I revert back to the old settings? Because I wanted to see the waves. And they do look very interesting. I have a better understanding now of what was going on back then, even though my understanding of the waves is by no means complete. So, here they are, for the education and edification of all. And if nothing else, they look kinda cool. Like the embroidery at the bottom of a traditional Ukrainian dress or the meander lines on a pysanky.

Hope ya'll enjoy them!

Deborah



http://dl.dropbox.com/u/34735018/07-15- ... 0Waves.pdf

[ozij]

Oh, good! Well, not that it is good for you, but I appreciate that validation. The PA at the sleep clinic implied I was being silly to say such things and/or that the magnification of internal sounds was a function of my imagination, not something anyone else would experience.

What???
That's not something experienced by everyone?

I haven't tried white noise machines. The price range is out of what I could afford. But, I am now thinking about music. Last summer, when I had surgery, there were a couple songs that I listened to a lot, because it was music I could get lost in. I would listen to it and become totally focused and absorbed in what was going on in the music and it really helped with pain relief.

I had that experience too with music.

Do you think one of those "fall asleep" CD's with water sounds or the like could help?

[agemSweed]

I would be very proud to come forth in social like that, unequivocally nice!

I really delight the look. Quick, spirited, knowing, if a little the craze forwards(nothing wrong with that), something I would wear .