Back agin with update

I've been very bad and have been ignoring the forum for about a month.

First off, I now wear a size 8, have lost 40 pounds, feel great, but my Sleep Dr. still has me on APAP. But now I'm having blood pressure problems which we think is linked to some medication I'm taking, so I'm off the Xyrem for a week to see what effect that will have since it is very high in sodium.

Needless to say, my sleep quality has deteriorated. Waking up every few hours, back to feeling very drowsy after lunch and throughout the evening. Mornings are pretty good, however.

The good part is since I've lost the weight I can now eat almost anything and not gain weight because my metabolism is where it should be. For breakfast I have bacon, eggs and toast with grape jelly. For lunch, a moderate high protein lunch and for supper usually a cup of yogurt with fruit on the bottom. Sometimes some Wheatsworth crackers and pimento cheese spread.

When he was home for Thanksgiving my son made the comment that he had never seen me eat large portions, always small ones. Amazing what metabolism will do. No telling how long I've had OSA affecting it.

As many of you remember, he too has OSA but could not tolerate the mask so went the weight loss route. He dropped 52 pounds, changed Sleep Drs. got a new sleep study and had only a few apneas for the entire 6 hours, but had down to 90% oxygen desat rate, which the Dr. didn't feel was a problem, but I do. He stopped smoking, joined Weight Watchers, worked out in the gym, etc. He completely stopped smoking just a week before the sleep study, yet his tonsils, previously greatly enlarged, were back to normal size. NOTE: if you smoke, stop, and you might be able to breathe better.

He is now into running marathons, well, only half marathons so far, but he is continuing to work out and feels like a new person.

Now, the bad part, since I no longer need very high pressures, I am set at a low of 4. And I'm here to tell you, that is not enough pressure to inflate the nasal pillows on the Swift, so I can barely use that anymore . Am using mostly the Mirage Activa.

Congratulations on your weight loss. Keep an eye on your apnea as it can come and go on a nightly basis but never really goes away completely. If you can tolerate it, try increasing your minimum pressure to where it is more comfortable, say 5cm or 6cm, it will still record as before but be much easier to breathe with.

Not having any breathing problems with it at 4. We lowered it from 6 because it appeared I was getting pressure induced central apneas. At a straight 4 I was getting maybe 4 apneas for the entire night, a few centrals but no hypopneas or vibrations. Most of the apneas where when I had leaks, but some not.

Too, I don't know what kind of desat rates I would have without the machine at all. And i just feel safter using it.

The initial setting on my APAP was 4-20. That was a disaster. Among other problems, the lower pressure of 4 was not enough to compensate for the added resistance of the hose and and whatever else got in the way of the natural airflow. And also it was not enough to purge the CO2 that inevitably gets blown back up the hose part way. It takes just a little extra air pressure to vent that out the exhaust adequately. I had the panicky feeling that I was suffocating. That's when I got on the internet at 2 am and got advice on setting the pressures using the "clinicians setup mode". That worked. At a pressure of 6 I felt very good, it was enough to expel the CO2 from the hose, and provide adequate ventilation. I have since tweaked the pressure by half a centimeter up and down, but 6 is just right for me as a lower setting.

Can you adjust the pressure? (yes, that's legal) I'd say mess with it until it feels right. Surprisingly, several controlled studies have shown that patients can do a pretty good job of that based on their subjective notions of what "feels right". Not so surprising really, the human body was designed/evolved (pick one) to regulate itself, more or less. And when it doesn't get what it needs, (air, for example), it let's you know. Listen to your doctor, of course. AND your senses and feelings.

Janelle,

It's so good to see your posts again......Welcome back!

That's great news on yours and your son's weight loss.....but sorry to hear your sleep quality has deteriorated. I hope you either have or will find something that works for you (pressure/mask combination).

Take care and best wishes,

Den

Janelle,

Glad to see you are back!

BTW, Have you run into Surly Abond yet? I think he is living in Austin now, correct?

Glad to see you back, Janelle!
I hope your doctor and you work out your problems so you can get good sleep again.
I was kind of surprised to read you can use the Activa with a pressure of 4, and not the Swift. I have read the Activa won't inflate at lower pressures. That, clearly, is not the case with you.

Keep us posted!
O.

Haven't seen Surly. I think he moved to the Dallas area.

Right now I am seldom above a 4/5 pressure all night. The 4 pressure does inflate the nasal pillows on the Swift to an extent, but I don't get nearly as good a seal as I do at say 7, and my Sleep Dr. doesn't want me setting it that high because of pressure induced central apneas.

My trial period off the Xyrem to see if it was causing the high blood pressure will be up on Friday. I only got about 2 hours of sleep last night. Woke up about 11 and never got back to sleep. At least with the Xyrem I can get a good 6-7 hours each night. I may take 1/2 an Ambien tonight to get caught up. Meanwhile my BP continues to climb. While I was sitting and playing computer solitaire last night about 2 a.m. I started feeling very light-headed and cold. Took my BP and it was 190/101! And that was sitting and doing nothing for several hours! I took it again a few minutes later and it was down to 158/90 and then again it was 148/89 a few minutes later.
This is all just too darn weird for me. Calling my GP today, even though I have an appointment tomorrow.

Janelle,

I looked back... I still think Surly is in Austin.

Maybe this is his store...

Mid-East Books
3105 Greenlawn Pkwy
Austin, TX

Hey, Janelle. Welcome back.

One question. When was your last PSG done? If you are on a pressure of 4 and lost all that weight, I'd be curious to know how it has affected your OSA, if it did.

By the way, I had no problem using my Swift on 4. Took some getting used feeling like I wasn't getting enough air at first, but it worked fine after that.

In any event, congratulations on your weight loss and having the ability to enjoy eating without worry. That must feel great.

I haven't had another PSG since losing the weight, but have provided the readouts from my Silverlining software to the Dr. every 6 months. BUT you have to remember that I was put on APAP not because of number of apneas/hypopneas per hour which was like 3, but because I had very low oxygen desat rates (83%) and because I did have URO. So, it doesn't necessarily matter how many apneas/hypopneas you have if you aren't getting enough oxygen into your bloodstream during the night.
It is also known that my blackout episode while driving (not drowsy for a change) is probably due to an irregular electrical reading in part of my brain which might be causing seizures of some kind, so I'm on medication for that. I also suffer from insomnia bigtime, and the inability to get back to sleep if I wake up in the middle of the night, and sometimes only a few hours after going to sleep, so I don't get enough hours and then end up with sleep deficit. And I also have something that causes me not to go into the Delta (deep sleep) Stage to get restorative sleep.

I guess you'd say my case is a bit complicated, not just plain ole OSA or Sleep Apnea. But you have to remember that very few people have just plain OSA or Sleep Apnea, there are often many other factors at work. Like lack of deep sleep, prediabetes or diabetes which cause you not to lose weight even on xPap, restless leg syndrome, narcolepsy, etc.

Ideally, once you are on XPap you should get the deep restorative sleep, and lose that extra weight, get your energy back and feel great. But many people, because their doctors don't do followups on a timely manner or consider all the other possibilities, people don't feel better, don't lose weight and go on pretty much the way they were, except they sleep better at night and are getting more oxygen during the night. For some that is enough, but it wasn't for me. I've been eating like the proverbial bird for years and have not been able to lose weight since I was like 30, so maybe it all started back then or possibly even earlier. I can't even remember the last time I slept all night long and felt great in the morning. Probably before children, because after I hardly ever got a full night's sleep!

Janelle,

Yes, your case is complex, but I agree that most people don't have JUST OSA with no other medical conditions/complications involved. Those would be the "lucky" pappers because that SHOULD mean if they were compliant and had a good study done initially, or were on auto, they would have all the benefits that are supposed to come with being so. But it seems for someone with a lot of extenuating circumstances, you are doing rather well. I'm very happy for you, Janelle. I hope your good health and your well being continue on. And good luck with the insomnia and BP. Oh, why does life have to be so complicated???

Oh, why does life have to be so complicated???

Because if it wasn't it would be so boring that we would just fall asleep....


O.

ozij wrote:

Oh, why does life have to be so complicated???

Because if it wasn't it would be so boring that we would just fall asleep....


O.

Ah, but would we stay asleep or at least get into the restorative sleep stages?