Maliolani's new dawn

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Maliolani's new dawn

Postby maliolani » Mon Apr 16, 2012 7:59 am

(The adopted name, Maliolani, means the first light of dawn.)

I've decided to start the McDougall program today, 4/16/2012, and perhaps journaling here will provide some accountability. I was all set to do the ETL 6 week program, but not only do I believe the McDougall program is more doable and palatable, but also I'm just much more comfortable with the approach encouraged by Dr. McDougall and Jeff Novick than with that encouraged by Dr. Fuhrman. I still think Dr. Fuhrman is making a great contribution to people's health.

I am a 56 year old male weighing 148 pounds with a BMI of 23.9. That sounds statistically "normal", but is not. I'm quite fat. When I was in my 20's I was a ballet dancer and weighed about 123 pounds consistently. Jeff (and many others) has indicated that a healthy BMI is 18.5-22, which for me would be a weight of 115-136. I'd be comfortable with anything in the 120s. That gives me 20 pounds to lose.

I was recently diagnosed with sleep apnea and upper airway resistance syndrome (UARS), although I am not obese and rarely snore. This came as a big shock to me, and I have been put on a CPAP machine, which is like torture. Ordinarily, people with sleep apnea are advised to lose weight to relieve the snoring and apnea, plus not to sleep on their backs to reduce snoring. In my case, I'm not sure that advice means anything. I don't snore, and my apnea happens more than anything when I'm lying on my side. I just lose the urge to breathe until the carbon dioxide builds up to a level where the autonomic nervous system wakes me up gasping. This happens every few minutes on some nights (and not at all on other nights), causing me to be exhausted and hurt all over (oxygen saturation of 76%) while lying in bed. UARS symptoms mimic chronic fatigue and fibromyalgia. The CPAP makes the pain go away. But I'm hoping that by losing weight I can get rid of the CPAP.

I seem to have some kind of mental block about what to eat on the McDougall program, in spite of it being explained in the books. I'm not sure why. For ETL, it is very clear when the book says "the salad IS the meal" and avoid grains. It is not that the McDougall program is complicated. I just find it hard to imagine that I can eat so much starchy food and lose weight. We'll see. A posting Jeff made suggested 2 cups of whole grains and a cup of fruit for breakfast. This morning, I made my 2 cups brown rice into 2 musubi, but it was too much food, nevermind the fruit. But I'm a grazer and I'll pick up the rest as the day goes on.
Last edited by maliolani on Tue Apr 17, 2012 6:42 pm, edited 1 time in total.
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Re: Maliolani's new dawn

Postby maliolani » Tue Apr 17, 2012 6:39 pm

Today is my second day.
Breakfast: brown rice
Snack: cantaloupe
Snack: banana
Lunch: Big salad, veggie chili, grapes
Dinner: Mary McDougall's potato pancakes, grapes

I lost 1.3 pounds, but one day's loss doesn't mean anything.

The hardest thing is in the evening. My whole body feels unsatisfied. I don't mean hungry, not at all. I mean craving something that takes a while to digest, like a peanut butter and jelly sandwich or a big chunk of sourdough baguette or a big handful of pistachios. I know I could have a small amount of peanut butter on whole grain bread or rice cracker, but I prefer to lose the weight and hopefully break the craving.

Tomorrow I go to Kaiser to trade in the loaner CPAP machine, have its recorded data analyzed, and get my "own" CPAP machine. I'm ambivalent about it. I'd rather have my own customized machine than use a loaner that isn't set up well. But I don't really believe that I have obstructive sleep apnea in the first place. There is no evidence at all that my cessation of breathing at night is obstructive. If it were, one would think I would be a fat snorer, but I'm neither, nor is my alleged apnea worse when lying on my back. But I'm still hopeful that it will all go away if I lose 20 pounds.

I'm much, much sleepier and more tired during the day when sleeping with CPAP than when sleeping without it. Breathing with the machine is a struggle.
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Re: Maliolani's new dawn

Postby maliolani » Wed Apr 18, 2012 7:02 pm

It is the 3rd day on McDougall's.

Breakfast: Quinoa flakes cereal (inedibly bland, yuck)
Snack: Potato pancakes
Snack: banana
Lunch: Large salad, grapes
Dinner: Spaghetti squash, brown rice, raw veggies

I got rid of the loaner CPAP machine this afternoon, trading it for my official own machine. Fortunately, I was able to get a very nice nasal pillow mask that should be much more comfortable than Kaiser's initial offering. Now I can at least scratch my nose at night if it itches.

I asked the Kaiser sleep technicians how they would know if the CPAP machine was correcting the low blood O2 saturation that was the whole reason they are putting me on CPAP (since I don't snore and there is no objective evidence that I have sleep apnea), since now that I'm on CPAP they are no longer measuring my O2 saturation. As expected, they just said basically "because we have so much experience and we know that is what CPAP does". In other words, they have absolutely no idea if it is working or not. My condition could be something having nothing to do with apnea, and they would never know it. But the insurance company is saving a few bucks, and that is all that seems to matter.
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Re: Maliolani's new dawn

Postby lmggallagher » Wed Apr 18, 2012 8:27 pm

Welcome Maliolani:

Nice handle that :) I have UARS too, as a matter of fact just last night I was reading up on it as there has been a lot of CPAP twitter going on in these forums this week. From what I have read - our problem is more a structural collapse in the throat and is not typically associated with weight or snoring, but it can be a precursor to sleep apnea (SA). Pretty confusing still - and worse loosing weight may not change a thing - except that you maybe don't progress to SA.

When I was tested I was getting 3 hours of sleep per night because of the sleep interruptions. As I had been diagnosed with fibromyalgia years prior, my current Doctor was aghast that I had not been sleep tested for UARS, as it has the exact same pain symptoms.

Sure enough I had UARS and on the CPAP I lost about 1/4 the pain and fatigue. I still have fibromyalgia, but before the CPAP I was completely homebound and exhausted beyond belief. After the CPAP, I also started loosing weight and being able to start a hot water swimming program.

I tell you this, because I know that they are a pain in the whozzits, but for me the difference has been huge. Still, I am having problems with wearing mine and I also have Kaiser in the San Francisco Bay Area. I am finding that everyone I know that has Kaiser seems to have different CPAPs. I am interested in yours because it seems to be the "latest model"? I guess the differences may be what our plans allow, but please could tell me more specifics about your model ? It does seem to have some features that sound better than mine.

As for food - one must have trust at first - about the carbs and "blandness". Also it takes a couple of weeks sometimes more, to notice that you really are feeling better and tasting food in a whole new way. I craved nuts and oils at first and now I find added fats ruin the taste of foods for me. Seriously, I do!

As for quinoa flakes - I am with you on that one - nothing can make those taste good to me either! I am an oatmeal w/ fruit & cinnamon person. A lot of people also like oatmeal and pumpkin/pumpkin pie spices or banana/maple syrup. It takes time, but favorites are found and easy to make.

Hope your cravings subside soon and that the health effects start showing too. You're doing great on the weight already!

Best wishes - Michelle
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Re: Maliolani's new dawn

Postby maliolani » Fri Apr 20, 2012 7:15 am

Hi, Michelle,
Thanks for your nice post.

My CPAP machine is Philips Respironics System One Remstar Auto with A-flex. As I look on CPAP forums, most everyone seems to have either that same model I have or the Resmed S9 Autoset. The latter is quieter and seems nicer, but costs about $100 more, which is probably why Kaiser won't supply it. ALL CPAP patients from Kaiser where I am get the Remstar Auto A-flex. You have no choice. You can search online to see if it has any differences from the machine you have.

Kaiser never mentioned the existence of humidifiers or the possibility of getting a mask of one's choice to the new CPAP patients. I had done extensive reading so I knew to ask, and they have placed a humidifier on order for me. Till then, I'm not using it any more because it dries me out too much. By specifically asking, I got a Resmed Swift FX nasal pillow mask. Otherwise, I would have been given a mask that covers the nose, which I don't like. The Swift FX is WAY more pleasant to wear because it doesn't cover the nose, allows me to scratch my nose at will without causing a leak, doesn't leak at all in any position, and is easy to take off and put on with no velcro changes. But apparently it takes some getting used to where the nasal pillows go into the nostrils. It made my nose sore after wearing it for a few hours the first night. I'm sure you get used to it.

One bad thing about Kaiser is that I have no opportunity to see a doctor about all of this, only sleep technicians. The technician basically told me that they are not concerned about my UARS, but only about the fact that on the night of the at-home sleep study my ox-sat went down to 76%. So I asked how do they know that that wasn't a fluke, and how do they know that the CPAP machine is improving it. And they have no answer. So yesterday I placed an order online for my own recording oximiter I can wear at night. If I find that my oxygen saturation is not typically below 90%, or that wearing the CPAP does not improve it, I'm not sure if I'll continue.

I'm very sceptical about the CPAP improving UARS. Even while wearing the CPAP at night, I can sense while awake and lying on my side that at times my brain just decides to stop breathing for a while, implying the CPAP didn't change anything. I question my diagnosis. But your statement (and my own experience) that wearing the CPAP makes some of the pain like CFS or fibromyalgia go away is also something I have to consider. Right now, I guess I need some time to adjust psychologically. I don't want to be dependent on any machine (or medication).

Maliolani
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Re: Maliolani's new dawn

Postby lmggallagher » Fri Apr 20, 2012 9:22 am

Thank you Maliolani!

How wonderful to have all this complete information! Becuase of your post I called Kaiser yesterday and spoke to a technician. The result of that is I will get a reservoir, new hose and a nose pillows mask. I have the same CPAP as you, as there are, as you note, limited choices (well I don't think I got a choice actually). I don't know the brands of the items that are coming in the mail. But I really look forward to the pillow mask from your description here.

I also will go to the walk in CPAP clinic at my Santa Clara Kaiser. My phone discussion with the tech was pretty frustrating, you can imagine I am sure! Generally, she wouldn't let me finish my questions before answering and she was doing a real disconnect as to where she thought I was going. Still I did agree with her I probably need to have the thing re-calibrated. I have lost 35 pounds since I first started wearing it and that may make a difference too.

There is a Doctor at the clinic we may speak with - so that is a real plus to going as well. I will ask about my test specifics, as I never did know the results, with exception of the final diagnosis. I guess we can go through that with our primary care physician but I hadn't thought of that.

Still, I know I have UARS for certain - as the fibro pain/fatigue/weight gain increases when I don't use it. All of which is quite convincing. Still, just like you, and probably everyone doing McDougall, none of us want to be on drugs or use any devises - UNLESS absolutely necessary!

If I get to talk to the doctor I'd be glad to ask any questions you may have as well - though if I don't have an ox sat issue I am not sure how I'd logically link that to the inquiries - but I'd try to! I also want to ask about the oral appliances I have seen on the internet. Apparently, they move your jaw forward to open the air passage. It doesn't seem ideal for one's jaw though, so that confuses me too.

Anyway, thanks so much for all the information - it is completely helpful and got me going on resolving this as much as I can!

Hope all is going well with the weight loss for you. BTW, I do the weekly weigh in that Debbie keeps up for us and I got to log two pounds lost this week, which is my weekly goal. So I am pretty happy today. Join us if you want to track your progress that way or just want to see how effective this is McDougalling is for all of us.

Thanks again - Michelle
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Re: Maliolani's new dawn

Postby maliolani » Sat Apr 21, 2012 6:55 pm

I'm glad to hear you are moving forward with your weight loss and CPAP issues, Michelle. I'm at the same Kaiser Santa Clara. Since I just got my equipment, I have not gone to the drop in clinic yet, so I didn't know there was a doctor there. I have found that the sleep clinic employees I've spoken with so far have been less than friendly or helpful. I don't have any questions for the doctor at this time.

By the way, my CPAP humidifier arrived unexpectedly by UPS only 3 days after it was ordered. I will try it tonight, probably.

My own oximeter will arrive Monday and I'll try some overnight readings with and without the CPAP.

I'm not aware of the weigh-ins you mention or who Debbie is. But I'm happy that I lost 3 pounds this week, my first on McDougall.
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Re: Maliolani's new dawn

Postby lmggallagher » Sat Apr 21, 2012 7:25 pm

How funny we are at the same Kaiser. sometimes here you're posting a person in the UK, or and Aussie - but here you are in the same area :lol:

A three pound loss is great - especially as you are not one who needs to loose a huge amount. those folk drop huge weekly weights, I notice.

If you want to join the weekly weigh in it's at this link. You'd have been a big loser there this week. I should have given that to you previously - obviously not enough oxygen or sleep without the CPAP :eek:

viewtopic.php?f=11&t=28627
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