UARS Questions--Want to Feel Better!

[jskinner]

This audio file includes some interesting discussion on UARS

"Sleep Disordered Breathing: an Interview With Dr. Stephen Brooks"

[sleepyred]

Thanks for the link - very interesting!

I fit neatly into exactly what he said concerning UARS - and my apap has been a life saver for me!

Thanks again!

This audio file includes some interesting discussion on UARS

"Sleep Disordered Breathing: an Interview With Dr. Stephen Brooks"

[ozij]

Thanks for the link!

O.

[WearyOne]

Thanks, James, for the link---and thank everyone for their help.

Pam

[tillymarigold]

Hi WearyOne,

Your numbers look a lot like mine, and I too have UARS. This study found that UARS in women causes short-term symptoms as severe as OSA, although men with UARS usually barely have any symptoms at all.

My doctor explained UARS as your body arousing up before your airway closes far enough to be an apnea or hypopnea. So it does cause the problems that relate to not getting enough stage 3/4 sleep (like daytime sleepiness, waking up a lot, getting up to pee, slow healing, problems with metabolism) but not the ones related to desaturations (like heart problems), because you wake up before the airflow is cut off enough to cause a desat.

Like SleepyRed, APAP has totally turned my life around.

Bethany

PS For the record, I don't snore.
PPS I feel best when my flow limitation index is below 3. And my AHI is still significantly lower with xPAP than it was in my study (usually ebtween 1.5-2.5).

[Snoredog]

And on the other end, don't be doing BLT when you shouldn't:

Turn That Thing Off!

SAG

That is a good link, people should read the RESULTS as it shows melatonin levels are influenced by too much time in front of the display monitor.

The chart in Fig 1 also explains why we have afternoon fatigue, as our melatonin levels climb rapidly at that time.

And i guess it is a good idea for everyone should be checking their rectal temperature

I'm running a bit cool...

[StillAnotherGuest]

I like Mirapex. Some people say it gives people the urge to gamble, but I take it myself, and I'll give you 8 to 5 they're wrong.

I didn't think there was still any debate over the potential for dopamine agonists to in some people cause gambling, shopping, eating or sexual addictions.

While the above comment was another example of SAG's razor-sharp wit ("gambling", "8 to 5", get it?) one must be a little cautious in reviewing the dopamine agonist data.

Is It Dose Related?

These patients were on Parkinson's dosage of dopamine agonist, which are typically 4 to 20 times the dosage of RLS therapy.

And of course, they had Parkinson's.

Pam, I'd caution you a little bit from going down the UARS road too far. The definition of UARS relates to the diagnostic study

Polysomnography reveals AHI < 5, oxygen saturation > 92%, and the presence of respiratory related respiratory arousals (RERAs) and other nonapnea/hypopnea respiratory events.

and your study shows SDB that is substantially more severe than that (and again, we might argue central vs obstructive component).

And in the titration study, the events that were reclassified as RERAs were early in the study at subtherapeutic pressures and everything pretty much cleared at 6 cmH2O, although supine REM was not properly assessed.

Do anything with that sleep log? How much sleep time and where? Is there a big block of middle of the night wake?

A food log might be a good idea too. In addition to caffeine and time (and quantity) of eating, a careful review of the items themselves might be helpful. For instance, even non-caffeinated diet sodas (like with Splenda) can be a real issue.

If all the sleep and nutritional hygiene issues are ironed out and insomnia persists, additional strategies such as Sleep Restriction Therapy (originally designed by Dr. Art Spielman) might be employed.

Or maybe some quiet reading before bed like The Insomnia Answer: A Personalized Program for Identifying and Overcoming the Three Types of Insomnia by Glovinsky and Spielman.
SAG

[kteague]

My Mirapex dosage was 1.5 mg in the evening and 1.5 mg at bedtime for RLS and PLMD. I don't have Parkinson's. I didn't have problems with the side effects until the second dose was added. Compared to Parkinson's patients, my dose was negligible, so I can only imagine how affected a person could be at high doses. I agree that the risk is smaller at doses therapeutic for RLS amd PLMD, but based on personal experience, not absent. The RLS commercials for Requip and Mirapex both contain the warnings. Just never hurts to be aware of any possible side effects of any substance we put in our bodies.

Kathy

P.S. Just out of curiosity I took a look at askapatient.com to see comments on side effects patients experienced while taking Mirapex. Of the 177 respondees, the vast majority were taking it for RLS/PLMD, and some were for Parkinson's. Six Parkinson's patients reported addictive behavior. Nineteen RLS/PLMD patients reported compulsive or addictive. Certainly not scientific, but noteworthy.

[StillAnotherGuest]

Certainly interesting comments. You wonder how many are from Requip sales people.

Equally interesting are the express lines for lawsuits.

Where's My Money?

They surveyed 1,800 Parkinson's patients over a one year period and determined that of the 529 patients in the study who took Mirapex, eight developed gambling addictions. This means that thousands of users may be experiencing these compulsions.

An incidence of 1.5%? Fairly hefty, but Mr. Skeptical must ask the question, "How valid is anything once money enters the picture?"

Or a good excuse, as in, "Gee, Honey, I don't know what I was thinking when I got caught with that other woman. Must have been the Mirapex."

SAG

[artmom]

I am late to this thread, and haven't read more than a few posts, but I am here to say: UARS may not be "real" but I don't ever have an AHI higher than 1, and I had no apneas during my sleep study, but I had an arousal index of 45.

There are two elements to sleep disordered breathing, the oxygen desaturation and the arousal cascade. Oxygen desturation is bad bad bad, no doubt. But the arousal is also bad, and a problem all it's own.

When you have a - lets say - "breathing event," if the mechano-receptors in your throat are of the right kind (no one seems to know what that might be, but perhaps over-reactive is the right term.) Your brain gets the message to wake a little. The body than does a variety of things to make sure you live through whatever is going on: it raises your heart rate and your blood pressure through the mechanism of altering your levels of vaso-active amines. It releases adrenal hormones, it turns off peristalsis, etc. etc. All of these complex reactions have consequences. The release of gluco-corticoids stimulates your liver to release energy stores raising your insulin level, over time leading perhaps to insulin resistance, the vaso-active amines can cause morning headaches or migraine. All of these reactions are poorly understood, but quite real whether the arousal is caused by complete airway collapse, or a flow limitation, or a crying baby.

Researchers are starting to understand how sleep disruption for whatever reason can really mess you up! Up to and including causing psychosis and death. So, maybe UARS as a term is poorly defined, but please don't tell me that just because I don't ever show an AHI my sleep disorder isn't real. My daily migraines and sky high blood pressure and deteriorating mental health and 14 hour a day sleeping habits had real consequences!

In MN my insurance has covered my UARS with a apap and everything I need to get better. And they had better be happy to do it, the amount of money they have saved since I started cpap. My doctors had wanted me to take 8 different medications, blood pressuren meds, anti-depressents, anti-epileptics, etc. Not to mention the regular visits to expensive specialists and MRIs to make sure my constant headaches weren't the result of a brain tumor. The list goes on. Now they just have to pay for a cpap. No meds, healthy again.

Since I started cpap I sleep 7-9 hours a night, not 14+. I don't fall asleep at work and everywhere else, I haven't had more than one headache a month, and my blood pressure was 110/68 on thursday.

Now, to the original posters question, no your machine won't register your UARS caused events. The software is pretty much useless for you. Pay attention to how you feel, make small changes and notice how you feel, repeat until you feel well. There is no promise that cpap works for UARS, and it's not well researched, but my working theory is, if the arousal cascade is initiated by flow limitation/whatever it is that is happening, then if I can keep the airway open enough to limit that, prevent the arousal cascades, and i feel well, then good enough.

[WearyOne]

Thanks for the information, artmom! Very helpful! And that's so great about your blood pressure reduction.

One problem that I have is that that I read so much about "go by how you feel." One can't always do that if there are other health issues in the mix. For example, I have a thyroid condition and I've been in perimenopause for quite a few years. So, when I don't feel as well a day or two, or longer, could be my thyroid meds need to be adjusted, female hormones are playing havoc, or almost anything. And since my thyroid condition was caused by Graves' Disease (an autoimmune disorder), those auto-antibodies, which aren't "cured" by thyroid hormone replacement, can still run havoc in your body, especially when stressed or ill.

And even thought the sleep doc said that these events (UARS/RERAs) can't be tracked by the cpap machine, I was still trying to find some data that showed up with the software that might correspond, even slightly, with these types of events. Titration showed most of these events were taken care of, along with the desats, hypopnesas, and apneas, so I'll have to go with just watching the numbers that the machine can report, and keep those in good order. (Plus take care of my health issues that I can correct, like losing weight and getting proper exercise.!)

Pam

[artmom]

Pam, there is no doubt you are right, those other health issues make it hard. And I am sorry if I came off sounding testy just now, reading through the whole thread it is clear that everyone is on top of the issue. I just get cranky sometimes when people act like OSA is the only diagnosis that matters.

Anyway, good luck! I too have thyroid issues in the mix, but right now everything seems to be balancing out. Wouldn't it be great if there were a home thyroid test like blood glucose? I wouldn't mind a home eeg either, or perhaps a titration study, since I have no idea other than how I feel if my RERAs are under control.

I take magnesium as well, also coQ10 and B2. All per my neurologist for headache control. I started this before cpap, and noticed some changes in my sleep even before cpap. I really wonder if UARS might more properly be considered neurological in origin.

[WearyOne]

Pam, there is no doubt you are right, those other health issues make it hard. And I am sorry if I came off sounding testy just now, reading through the whole thread it is clear that everyone is on top of the issue. I just get cranky sometimes when people act like OSA is the only diagnosis that matters.

Anyway, good luck! I too have thyroid issues in the mix, but right now everything seems to be balancing out. Wouldn't it be great if there were a home thyroid test like blood glucose? I wouldn't mind a home eeg either, or perhaps a titration study, since I have no idea other than how I feel if my RERAs are under control.

I take magnesium as well, also coQ10 and B2. All per my neurologist for headache control. I started this before cpap, and noticed some changes in my sleep even before cpap. I really wonder if UARS might more properly be considered neurological in origin.

I don't think you sounded testy. I agree, some people think it's OSA or nothing, and that's just not the case. The thought just occurred to me. My sleep center uses RDI (Respiratory Distress Index) rather than AHI (Apnea/Hypopneas Index). The RDI includes any sleep disordered breathing event, not just apneas and hypopneas. I've read that many insurance companies won't pay for a cpap unless the index is over 5. If they had been using AHI only, it would have been close to 5, maybe under, but using RDI, it was 19. (Although I did have desats down to 85%, so that might have helped swing it over.) Wonder how many sleep centers use RDI instead of AHI? They should, IMHO!

My original sleep doc (a psychiatrist background), left the sleep center and the new one that came in is a neurologist sleep doc. I saw the new one at my three-month follow-up after I had started cpap. He is much more knowledgeable about UARS/RERA than the other one was.

On the thyroid testing---Yes, wouldn't that be great, to be able to test that at home? I already test cholesterol, triglycerides, and glucose--wish I go do the thyroid hormones, too!

Pam

[johntee]

Forgive me if I'm asking a stupid question, or in the wrong thread...

If your Vibratory Snore numbers are much higher than usual, would you think UARS is somehow involved on that night? (Coincident with a pressure setting change.)

If the VS score is high, would one normally increase or decrease the pressure to try to address?

[Jetsin]

Oh yeah, fualbuos stuff there you!