Research ideas...

[oscar98]

I'm in the process of thesis development and I have some general ideas of what I want to do but who better to bounce ideas off of then my fellow sleep apneans?

If you had an opportunity to work with a clinical health psychologist a neuropsychology and a sleep clinic that is open to allowing you to request patients to participate in research what would you want to know? What is the one pressing question you have about sleep apnea that you have not been able to find an answer to?

[Goofproof]

All needed info is posted here, it just takes being willing to read. Jim

[fuzzy96]

lmsao oscar . you want to know the one question and only one and you did not quantify the parameters. so here it is "why is it so hard for so many to get even the hint of good fair treatment from a DME." i realized you wanted probably a medical physiological question so you may want to clarify your post. thanx for putting up with us

[chunkyfrog]

It all depends on who you ask:
Insurance companies want to save money; barring that, they want to document usage (or non-compliance)--
requisite to avoiding further expense.
DMEs' want to MAKE money--maybe a few have some altruistic bent--(where are they?)
They want to save money, too. They employ and train SALESPEOPLE; giving them fancy titles, so we will believe they are health professionals.
Forum members, by and large, are seeking comfortable, effective, AFFORDABLE therapy.
The ultimate wish would be a cure--so we wouldn't have to deal with the expense, discomfort, and inconvenience of therapy.
Even though this is not yet a reality, (except for a very few) many go under the knife in a vain attempt to avoid PAP therapy.
You have chosen a noble, but difficult undertaking. The best of luck to you.

[chunkyfrog]

--How about a database of 3D files of multiple brands and sizes of cpap masks and programming to make virtual home fitting possible?
Forget the local bozos who've never worn a mask trying to 'fit' us as quickly as they can.---Next!

[BlackSpinner]

I'm in the process of thesis development and I have some general ideas of what I want to do but who better to bounce ideas off of then my fellow sleep apneans?

If you had an opportunity to work with a clinical health psychologist a neuropsychology and a sleep clinic that is open to allowing you to request patients to participate in research what would you want to know? What is the one pressing question you have about sleep apnea that you have not been able to find an answer to?

How to make compliance easier and cheaper.
Specifically how to get people's minds to accept it as important.
It would be nice to have guided meditation cds on mask acceptance, on helping people sleep with it.

[tschultz]

... How to make compliance easier and cheaper.
Specifically how to get people's minds to accept it as important.
It would be nice to have guided meditation cds on mask acceptance, on helping people sleep with it.

I hate the term "compliance" as this feeds into the insurance company's policy of wanting to avoid paying where they can. It should be referred to as "treatment" as that is truly what it is.

Oscar, I do think there is a great deal of information with all the good people here. What you must decide is the motivation you have, other than simply doing your thesis, and what limitations the clinic may pose as well. The very sad truth is that we are victims of a profit driven market and this is very evident at all steps along the way.

[Mike6977]

.

--How about a database of 3D files of multiple brands and sizes of cpap masks and programming to make virtual home fitting possible?
Forget the local bozos who've never worn a mask trying to 'fit' us as quickly as they can.---Next!

Hi chunkfrog,

That is a brilliant idea.

But there are some catches to 3D.


1. On the user end, you'll need some kind of very cheap, easy to use 3D scanning software/ hardware set-up. .Such software / hardware does exist, all you need in one example is a simple consumer camera.

2. A 3D scan of your head when you're sitting upright will be different than a 3D scan of your head when you are supine, and a lot more difficult to accomplish. .If you sleep on your side, as is often recommended, getting an accurate scan of your head increases in difficulty.

3. Having such a "perfect" scan doesn't mean you will match up exactly with the current crop of masks, and that's only IF, and it is a big IF, the makers decide to all participate. .My feeling is that if one of the R&R sisters makes a deal, all the rest will soon follow.

Otherwise an outside company contemplating a try at filling that market gap will have to purchase every mask on the market (or, at least, all the R&R ones), in every size it comes in, and scan that into a 3D data bank. .If either of the R&R Sisters (or even the little guys) decides they're not happy with that, a thicket of "cease and desist" letters, will likely follow.

If those letters are ignored, then lawsuits will certainly follow, probably filed in the both US and Australia (and possibly other countries), claiming that such company is infringing on their patented design with out a license. Defending those lawsuits would be a nightmare for a small start-up, and would be end-game for them.

4. So really, now I'm thinking a VC start-up is a non-starter, and the scenario chunkyfrog hopes for could come about if hose-heads gathered together, and put some pressure on the mask makers to take this very reasonable, very cheap step.

Which would be a HUGE step forward for all of us hose-heads.

OK guys, if this interests you, write some letters to Respironics and ResMed, talk to our sleep docs and fellow hose-heads, and conduct a small, focused grass-roots campaign, tea-party style.

FIGHT THE POWER!



.

[robysue]

I What is the one pressing question you have about sleep apnea that you have not been able to find an answer to?

I'd like to know:

• Why do some of us feel so much WORSE after starting CPAP for such a very, very long time even though we are using the machine as directed---i.e. every night, all night long---and with low or nonexistent unintentional leaks?
• And why a few unlucky souls never seem to feel much better in spite of using the machine every minute of every night and for all naps?

In my case, the crash and burn I experienced after starting CPAP was severe and quite disabling. I feel as though I have lost a year (well, 10 months = one academic year) of my life in the effort to make this crazy therapy work for me. And through all my trials and tribulations, none of the sleep docs or PAs has been able to explain why this happens to some people or even how many of their patients have the kind of protracted struggle to get to the point were therapy is a net positive instead of a big negative in their lives. As I approach my first anniversary, xPAP is now working---most of the time---in the sense that I can "sleep" with the mask (could do that right from the start) with good AHI numbers and good leak lines---but I still wake up too many times at night, I still have "bedtime dreads" more than half the time, my sleep remains fragile most of the time, and I am now careening between feeling "really good" (on my best days) and "at least as good as I felt before CPAP" most days and "extremely exhausted and wanting to crawl under a rock" on my worst days. I want all my days to be like my best days are, but have no idea on how to get there from here.

[Mike6977]

robysue , what is your untitrated AHI?

[moresleep]

Two somewhat general questions of interest I can think of are:

1) How could the AHI be improved to incorporate more of the factors that determine whether the therapy is working or not? If you poke around, you'll find a lot on the limits and sometimes "uselessness" of the AHI in measuring the severity of sleep apnea--even at least one article quoting Dr. Sullivan, the inventor of the Cpap. Building on this question, for what percentage (and for what types) of sleep apnea sufferers is the AHI not a dependable measure of severity?

2) How effective is, and what are the limits of, self-titration? We have at least one study finding patients with minimal instruction can do a remarkably good job finding the right pressure for their own treatment--and that was before the days of Apaps and software.

[robysue]

robysue , what is your untitrated AHI?

The lab I went to scores hypops under both the AASM Recommended (as "hypops with desats) and AASM Alternative (as "hypops with arousal") standards. They compute AHI and RDI as follows:

• AHI = (number of apneas + hypops with desat [AASM Recommended standard])/(total sleep time)
  
  RDI = (number of apneas + hypops with desat [AASM Recommended standard] + hypops with arousal [AASM Alternative standard])/(total sleep time)

My AHI was only 3.5 (a total of 14 OAs in 238.5 minutes of sleep and no hypops with desat).
My RDI was 23.1 (a total of 14 OAs and 78 hypops with arousal as scored using the AASM Alternative standard).
And my lowest O2 saturation level was 91%.
(My full sleep study data is posted at Robysue's summary graphs)

My diagnosis of moderate OSA was made based solely on the RDI. I have been told by the new sleep doc that under Medicare standards, I would not have "qualified" immediately for a CPAP but that she would have fought the denial of coverage since she (and the old doc) both believe that the arousals themselves can cause damage---both to sleep architecture and physical damage to the body itself.

As measured by both the S9 AutoSet I used during the first 3 months and the System One BiPAP Auto I've used since then, my treated AHI has averaged around 1.7. (Long term breakdown of events: CAI = 0.3 , OAI = 0.8, HI = 0.6) My overnight AHI is usually below 2.0, often below 1.5. But I have occasional strings of several days in a row with the AHI between 2 and 3 and on about one day every 10 days or so with a machine scored AHI >= 3.0. I've had a handful of days with machine scored AHI's above 4. My all time highest machine scored AHI was about 5.2 on Halloween last year.

Over half of my scored events are OAs on a typical nigh, even though the breakdown doesn't reveal that. On the worst nights (AHI >3.0), the machine can score 10-15 OAs. And in looking at the wave forms on bad nights, many of these events follow a series of big breaths rather than precede them. Which leads me to speculate that many of these events may be "post arousal" events. I posted about this in big breaths, THEN the OA happens-NotMuffy could you comment?

[Jay Aitchsee]

Oscar, I agree with Robysue. It's not so much the OSA - it's pretty straight forward; generally, apply the right pressure at the right time and it's taken care of. It's after the OSA is minimized or controlled and the patient still doesn't feel better or sometimes worse is where the problem lies. Many, if not most, sleep doctors don't have anyplace to go after apnea is controlled. The best many can do is offer a stimulant like Provigil to help if drowsiness remains. I would like to see sleep labs and doctors do a full assessment of sleep architecture. including arousals, REM, SWS, etc., and then offer treatments or therapies to normalize sleep architecture beyond the use of XPAP when required. Now, it simply isn't done. If XPAP alone doesn't provide restorative sleep, then all science goes out the window - it's try this pill and come back in 90 days, didn't work?, then try this pill and come back in another 90 days, and so on for years. I have not heard of a sleep doctor ordering a PSG to determine the efficacy of a drug treatment, yet how else would they know for sure?

Jay

[Mike6977]

...

Robysue, would it be possible for to you list what medications you take, the symptoms you suffered, and their provenance?

For example, when I was both depressed and diagnosed with CHD, I was taking an anti-depressant, an anti-anxiety pill, Ambien, two anti-hypertensives and an anti-lipid. My feet began to swell so a diuretic was added to the mix.

Immediately, for the first time in my life, I started to sufferer heart palpitations, and had no way of knowing if this was related to the constellation of medications I was taking.

It was only when I quit them all, then added each one in for a trial period of a month, that I discovered that my palpitations (50 per hour, measured by a halter monitor), could be stopped or started like a light switch, all I had to do was take the anti-lipid for a week, and they would start. Drop that anti-lipid, and within a couple of days the palpitations stopped.

I'm trying to see your SDB as it might fit into a bigger picture, and I'd ask you to include what your intuition is telling you, if it's saying anything to you at all.

.....

[robysue]

...

Robysue, would it be possible for to you list what medications you take, the symptoms you suffered, and their provenance?

WARNING: This is long, but you did ask about medicines, symptoms, their provenance, and later on my intuition about what's going on in the garden of Robysue.

Pre-CPAP medications
Prior to starting CPAP: No daily meds except a multivitamin, Vitamin D, and a calcium supplement when I remembered to take them. I'd take OTC anti-histamines when my nasal allergies were really bad---as in when the congestion would cause problems with getting to sleep because of a clogged nose or because it would trigger a serious headache. I also took Ibuprofen for "mild artithritis" in my hands and feet as needed. Also too Ibuprofen as needed for TMJ. For my headaches (migraines, tension, sinus, etc.), usually I took nothing unless the pain was quite severe because I had a serious bout with rebound headaches back in 1995. I'd guess I was taking Ibuprofen maybe 2 or 3 times a month unless my hands and feet went through a week of on-going pain issues, which would happen several times a year, mainly associated with a change in weather.

For really bad migraines, I'd take a couple of OTC ibuprofens and lie down and sleep it off. It would usually take 2--3 hours to get the migraine down to a manageable level.

The vertigo had been becoming more of a problem for about a year or so. Most of the bouts were intense, but very brief. So OTC medicine didn't seem appropriate. For the longer spells, my PCP had recommended OTC motion sickness pills to treat the symptom. Did not have to take this very much.

And about 2 weeks before my diagnostic test I had a week of steroids (prednisone I believe) to treat a very nasy case of "poison azalea" that I'd developed pulling weeds at my mother-in-law's place. I react to brushing up against azalea plants the way most people react to poison ivy. The rash had not responded to a week of calamine lotion and was getting worse.

Pre-diagnostic OSA symptoms (or general lack thereof)
As for OSA symptoms: At the time of my sleep test, I could not readily identify any daytime symptoms clearly indicative of OSA. Hubby said I snored softly a lot of the time and he'd begun noticing that I'd stop breathing altogether now and then---as in a couple of times a week. I was tired a lot of the time---mainly due to hand and foot pain and chronic headaches. My chronic headaches were NOT worse in the early AM and did NOT get better during the day time. Many of my headaches had clear migraine type pain. Others were clearly tension or sinus headaches. If there were classic OSA headaches, they were likely well masked by all my other headaches. I had no daytime sleepiness at all. My daytime concentration was OK, but not great. Overall, my sleep was "ok" but not great. I never woke up gasping for air. I didn't have dreams of drowning or suffocating. I did have dreams that I remembered on a regular basis. Some troubling; some not; and most in vivid Technicolor and full Robysue weirdness (as hubby puts it.) As far as standard health things go: Normal to low BP for my entire adult life. No weight problem ever. (I've weighed between 103 and 113 ever since I was in 8th grade except for late in my two pregnancies) No diabetes. No cholesterol problems. No heart problems. No lung problems. In retrospect there are two things that I think may indeed have been OSA symptoms: I would wake up on my most painful mornings feeling as though I'd slept with my hands and feet in tight fists. And particularly during the last year or two before my diagnosis, I was pretty irritable, which was routinely dismissed as being hormonal related since I was going through menopause. Or the irritability could have been related to the unknown gene mutation that was found this year. More on that later.

Pre-CPAP insomnia
As for pre-CPAP insomnia: I've had maybe 6 or 7 significant bouts of insomnia and several more minor bouts of insomnia before starting CPAP. They have been associated with periods of severe stress in my life---stress primarily caused by events beyond my direct control that had deep, profound direct affects on my life. They have lasted from as little as 2-3 weeks to as long as 3-4 months in the past. The last somewhat significant bouts of pre-CPAP insomnia occurred in May-June 2008 and late September- early November 2008, both of which were tied to severe stress at work. (At the end of the fall 2008 semester I wound up resigning my position as chair of the department largely due to the stress issues at the root of these two bouts of insomnia.) My typically insomnia symptoms are severe bedtime problems---what I like to call the "bedtime dreads", some tendancy to have nightmares (which fortunately has NOT been happening with the CPAP induced insomnia), and somewhat frequent wake-ups with major restlessness before being able to get back to sleep. A feeling of an overactive mind with an inability to let go of stressful or sad thoughts was a major part of these previous insomnia bouts. And all of them typically resolved themselves with my paying more careful attention to sleep hygiene. And none required any use of prescription sleep meds.

I've also had intermittent insomnia for my whole life. Or perhaps it's more of a circadian rhythm disorder. When left on my own with no responsibilities to others, I have a tendency to stay up to about 3:30 or even 4:00 and then sleep until about 10:00. This does not feel at all like insomnia to me---when I can afford to sleep in that late. But I have a life that requires functioning in the morning and most of my adult life I've had to get up to start my day by 6:30 or 7:30. And getting to bed by around 12:00 or 12:30 left me functional on most mornings. In my 20s, 30s, and early-to-mid 40s, sleeping from midnight to 6:45 would usually let me wake up more or less refreshed and I'd have little or no problem getting ready to face the day. That did start to change (for the negative) around the time I hit 50. Maybe another subtle symptom of OSA.

I've always had the random nights where for whatever reason I simply stay up doing things instead of going to bed. Sometimes it's because I dread going to bed. Sometimes it's that I'm h too much fun doing what I'm doing. In the past, two of these random nights seldom happened in one week; but I would have 2--4 of them in most months. And I'd random nights with lots of tossing and turning and not being able to get comfortable---often due to nasal congestion. But again, I'd rarely have two of them in one week. And the frequency of these nights had NOT increased in the last couple of years before I was diagnosed.

Post CPAP medications
During the first three months on CPAP I was taking no medicine at all beyond occasional ibuprofen for pain. I simply could not remember to take the vitamins because I was so out of it mentally due to the almost immediate crash&burn that started with CPAP. By the end of October the vertigo was growing substantially worse and I found the strength to follow up with the referal my PCP had made for and ENT. And so the vertigo testing started with the resulting diagnosis of chronic migraines manifesting as migraneous vertigo along with a referral to a neurologist. The decision was made by myself and the neurologist that because the vertigo was interfering with daily life, that the chronic migraines needed to be brought under control even though they involved minor pain.

And so in late-December I started a trial on topiramate. I was on topiramate for about 6 weeks. During this time, my war on the insomnia started and I also reluctantly accepted a prescription for Ambien. And I decided to try to get more serious about remembering the multivitamin, the vitamin D, and the calcium.

The few times I took the ambien, it helped me get to sleep quickly enough. But it left me very groggy. The second time I took it, there was a mysterious 18 minute gap in Encore viewer: The evidence was that the machine decided that I'd taken the mask off without turning it off. And then I apparently put the mask back on in my sleep at the end of that period of time---and very badly given the leak rate. And I had real problems with the fact that I could not try to get sleep without it and then decide at 2:30 or 3:00 am that I needed to take something because I was not succeeding in getting to sleep on my own.

The topiramate caused major side effects including: dark and cloudy urine; problems with dehydration; weight loss; some anxiety issues; a very dry mouth, and mood changes. I never made it up to the full therapeutic dose. But even at the smallest dose there was a very noticeable decrease in both my vertigo AND my daily headaches. It was during the time I was on topiramate that I started having some genuine headache free days every now and then ---for the first time in my adult life.

In late February (month 5 of xPAP therapy) the topiramate was replaced with lamictral. There was about a two week period between the last of the topiramate and the beginning of the lamictral. Lamictral and I do NOT get along well. Within a week of starting the beginning ramp up dose, I was experiencing extremely troubling mood changes including a scary tendency to outbursts of serious RAGE and violent thoughts as well as deeply depressed thoughts. There were also problems with anxiety and some increase in insomnia. But again, the vertigo and headaches, which had increased during the two weeks I was not on any migraine meds, decreased in both intensity and frequency almost immediately. Because of the troubling mood changes, I was taken off the lamictral right at the two week mark. All I can say about this experience is that the lamictral gave me a taste of what it must be to actually face mental illness on a daily basis. A truly scary experience. And my empathy for those dealing with depression or bi-polar disorders has increased dramatically because of this experience.

In mid-March, the Ambien (which I wasn't taking very often) was replaced with Sonata (which I also didn't/don't take very often) and the lamictral was replaced by depakote. The Sonata has the advantage that if I can't get to sleep (and I'm getting MORE anxious or upset) I can make the decision to take it as late as 3:00 or 3:00 with my current "wake up schedule". But I am also capable of lying awake (but both groggy and anxious) for a good hour or two after taking Sonata. Not exactly effective. But once in a great while, better than nothing. Last time I took it was in July during my last major nocturnal meltdown (as in screaming at hubby how I hate everything about OSA and BiPAP).

On the migraine side of things, there was again a week or two of drug-free time between the lamictral and the depakote. I lasted about 6--8 weeks on a pediatric dose of depakote. Side effects included weight gain (all the weight I lost with the topiramate, which was not unwelcome, plus a pound or two more, which was unwelcome); anxiety; major uptick in the insomnia; a very dry mouth, and mood changes yet again. It did take much longer for the mood changes to kick in than it had on the topiramate or lamictral. But the insomnia affects were much more profound. Again it controlled the vertigo and headaches quite well.

Current Meds
In May a genetic test was done and it turns out I have a genetic mutation on one copy of my MTHFR gene---a gene that controls the metabolization of folate among other things. And metabolized folate is critical in the maintaining of serotonin levels among other things. And all three of topiramate, lacmitral, and depokote are metabolized either using folate or in a similar fashion. So the gene mutation explains why I crashed so badly on all those meds. And the gene mutation also indicated an alternate treatment plan for the migraines: There's a prescription vitamin called Deplin that contains the metabolized version of folate. And the neurology practice I go to has had good luck with putting migraine patients with MTHFR mutations on Deplin to prevent migraines. And the PA also suggested a migraine vitamin combination of B-2 and Magnesium

So---I'm now on:
For MIGRAINE prevention:
Deplin 7.5mg daily for migraine prevention
B2 200mg twice daily
Magnesium 200 mg twice daily
(this combo seems to be working very well in spite of the last four "bad" days.)

For ALLERGIES and NASAL CONGESTION
neti pot
flonase 1--2 squirts per nostril nightly at bedtime
zyrtex 10mg tablet cut in half so I'm taking 5mg twice a day. When I take the whole 10mg daily in one dose, I get dry mouth symptoms.

Other VITAMINS taken daily:
multivitamin
vitamin D 2000 IU once a day
Calcium 500 mg once a day

Other MEDS as needed:
Maxalt: As need for severe migraine pain (taken at the beginning of a severe migraine attack)
Ibuprofen: OTC for more routine headaches, TMJ pain, and general pain
Sonata (5 mg)/Ambien (5mg): If I every really want to take it, I still have plenty
Biotene toothpaste/mouthwash as needed for dry mouth (not on a daily basis anymore)

I'm trying to see your SDB as it might fit into a bigger picture, and I'd ask you to include what your intuition is telling you, if it's saying anything to you at all.

I appreciate the interest.

And I do think my SDB fits into a bigger picture. My intuition has been telling me all along that xPAP was only going to be one small piece of the puzzle to making me feel genuinely better than I did in the last two or three years before being diagnosed with SDB. At the PCP appointment where I got the referral for the sleep test, I also walked away with referrals to the ENT about the vertigo, a rheumatologist for the hand/feet pain, a surgeon to remove a benign fat lump from my arm that was beginning to bother me, as well as for a baseline colonoscopy, mammogram,and pap smear, all of which are still on my "to do" list. Between turning 50 and turning 52, how I felt on a day-to-day basis had started a downward trend. Not alarmingly in any one sense. But rather the combination of the headaches slowly getting a bit harder to ignore, the tinnitus getting stronger, the hand and foot pain becoming more noticeable on more days, the tired feeling bordering on exhaustion at times and constantly threatening to teeter into exhaustion, a general sense of feeling "older" than I wanted to feel pointed to a number of conditions needing to be taken care of.

And the BiPAP does its job decently enough. But by itself its just not enough to make me feel better---as in the way I want to feel. Because feeling "better" means getting those nasty headaches I've had my entire life to go a way---for good on a daily basis. And getting rid of the vertigo that first started to develop in 2003 after a cross country flight when I had a head cold is another critical part of the puzzle. And managing the TMD better---getting the TMJ to not dislocate every time I chew my food will both eliminate some pain and stress as well as a very annoying loud popping noise when I eat that drives my kids up the wall. And there's no getting around the fact that as a highly sensitive individual, starting xPAP therapy triggered insomnia that was NOT a symptom of my OSA. The sensory overload and the stress of making this work and the stress of dealing with the as yet untreated migraineous vertigo (in Fall 2010) along with the intolerable side effects of the migraine meds (in Winter/Spring 2011) along with allergies and aerohpagia all combined to feed this insomnia monster until it was very great and very fat and sucking everything back out of my system that the BiPAP could put into it by fixing the SDB.

And during the summer, with the Deplin and time off from work (it is great to be a college professor), the headaches finally became controlled without serious side effects to feed that insomnia monster. And with continued hard work, I'd begun to get it seriously under control until very recently. (There's another thread about that.) And I do think that once the whole set of problems (headaches, TMD, insomnia, allergies, SDB, and stress) is adequately managed, I'll start to feel better on a daily basis instead of on a sometimes basis. And "managed" is more than just medical treatment. The lifestyle changes I've made and continue to make are largely positive in the grand scheme of things event though I've been drug into doing many of them kicking and screaming against my will. Thus far, it has been a remarkable journey---both in terms of the outright difficulty of what I've had to do this year AND in terms of what I've learned and continue to learn about both my body and spirit. It is a journey that I would have much rather NOT have taken. But someday I believe I will understand more fully the why behind this journey.

.....[/quote][/quote]