New Doctor - Feeling More Clarity

As I'm sitting here this morning, remember my "truck" comment from yesterday? But thinking about it, I DID more yesterday than I've done in a LONG LONG time. And as I think about what I need to do today, I have the sensation that I CAN make it today and get everything done.

Wouldn't this just be a flipping kick in the head if ALL I needed to really feel better was a consistent, higher IPAP?

Of course, I know I'm jumping the gun and being over excited, too soon.

But yesterday, with a little forethought, planning and time management, I prepared a COMPLETE dinner for my boys without ANY help from them whatsoever. I told my husband when he popped in for a minute that I had dinner going and expected them home, at some point, to eat it. When I told him what I had prepared, he was astounded - "Are you serious? Wow!"

Plus, I did two loads of laundry (completely finished them) and paid some household bills.

It's hard NOT to be a little excited at the POSSIBILITY that we might be on a good track.

Just read your thread Maddie and I just did a happy dance around the living room for you ......YAY!!!!!!!!!!
Cheers and more happy dancing.
Nan

nanwilson wrote:Just read your thread Maddie and I just did a happy dance around the living room for you ......YAY!!!!!!!!!!
Cheers and more happy dancing.
Nan

The last time I felt this surge of energy was the morning after my titration study (Nov 2009). I remember telling my husband that I was tired, but had more energy than I'd had in a very long time.

But that didn't last and began the journey that has become well known here.

I despise getting my hopes up, but this is now a second day where I feel like I have more energy than I've had in YEARS. I am cautiously optimistic that we may be onto something.

But even if we're not, I have thoroughly enjoyed the last day or so of feeling half like a normal person. I will never be totally normal feeling (not with Muscular Dystrophy) but that surge of energy is like winning a million dollars.

Madalot wrote:

nanwilson wrote:Just read your thread Maddie and I just did a happy dance around the living room for you ......YAY!!!!!!!!!!
Cheers and more happy dancing.
Nan

The last time I felt this surge of energy was the morning after my titration study (Nov 2009). I remember telling my husband that I was tired, but had more energy than I'd had in a very long time.

But that didn't last and began the journey that has become well known here.

I despise getting my hopes up, but this is now a second day where I feel like I have more energy than I've had in YEARS. I am cautiously optimistic that we may be onto something.

But even if we're not, I have thoroughly enjoyed the last day or so of feeling half like a normal person. I will never be totally normal feeling (not with Muscular Dystrophy) but that surge of energy is like winning a million dollars.

I'm sure hoping this is a trend and not an anomaly.

Madalot wrote:

nanwilson wrote:Just read your thread Maddie and I just did a happy dance around the living room for you ......YAY!!!!!!!!!!
Cheers and more happy dancing.
Nan

The last time I felt this surge of energy was the morning after my titration study (Nov 2009). I remember telling my husband that I was tired, but had more energy than I'd had in a very long time.

But that didn't last and began the journey that has become well known here.

I despise getting my hopes up, but this is now a second day where I feel like I have more energy than I've had in YEARS. I am cautiously optimistic that we may be onto something.

But even if we're not, I have thoroughly enjoyed the last day or so of feeling half like a normal person. I will never be totally normal feeling (not with Muscular Dystrophy) but that surge of energy is like winning a million dollars.

Now that you triggered the thought in my head, what you are describing sounds a LOT like how I feel when I've been hurting a lot (back problems) and finally it clears up, either from medication or just luck.

I know from research that the body in chronic pain slowly adjusts. Part of that is the use of natural endorphin's the body makes (this is the same thing that causes a runner's high). The body does create more of these when your hurting, and if you stop hurting or hurt less the excess of endorphin's gives us that great feeling.
I'm not saying you should expect to go back to feeling miserable ... but the accompanying natural high, if you're experiencing it, won't necessarily last. But who cares? If you're not exhausted like you were that's what really counts!

I have to be truthful and admit this definitely feels like a "high" so what you're describing might be a consideration. Time will tell.

But you definitely got me saying "hmmmm" --

Nothing bad about that ... like I said, it would still mean that you've made a significant improvement!

khauser wrote:Nothing bad about that ... like I said, it would still mean that you've made a significant improvement!

Well, energy level has definitely spiked, but the daytime sleepiness isn't better. Got in my recliner and was reading and Bam....off I went to lala land. Actually happened twice today, which is a bit unusual.

It's too bad the Trilogy doesn't track SLEEP data especially since he feels the OSA isn't being controlled quite yet. Sleep data would be helpful.

For your edification!
http://www.mcgill.ca/newsroom/channels/ ... ain-225012

The McGill research is the first to link chronic pain to genome-wide epigenetic changes in the brain. "Injury results in long-term changes to the DNA markings in the brain; our work shows it might be possible to reverse the effects of chronic pain by interventions using either behavioral or pharmacological means that interfere with DNA methylation, says Prof. Szyf. ”Our findings have the potential to completely alter the way we treat chronic pain.”

This is great news. Finding a doctor that is willing to work with you and try various changes is wonderful.

Keep your fingers in shape. I don't want to hear of poor oximetry data due to sore fingers...

I can tell by your writing that your attitude toward all of this has improved. Keep in mind that health starts with a good attitude.

I will echo what others have said. Keep at it in a slow progressive pace. You don't have to win the race, just finish in a well rested condition. Give your body a chance to adjust to the changes and keep checking the feedback for results. I am sure you will find the "sweet spot" that works best for you.

Madalot wrote:

khauser wrote:Nothing bad about that ... like I said, it would still mean that you've made a significant improvement!

Well, energy level has definitely spiked, but the daytime sleepiness isn't better. Got in my recliner and was reading and Bam....off I went to lala land. Actually happened twice today, which is a bit unusual.

It's too bad the Trilogy doesn't track SLEEP data especially since he feels the OSA isn't being controlled quite yet. Sleep data would be helpful.

It could be that with increased energy you're moving around and doing more than usual so you might need those naps. Just go with the improvement now and enjoy!

-SWS wrote:Well, if you were in PSG titration for a fixed BiLevel machine, they would address OA clusters by increasing EPAP. That's standard titration protocol since OA is either incipient or frank before inhalation gets started. Therefore IPAP is not used to address OA.

Rather EPAP must be used for OA based on the sheer timing of event onset...

I saw this in another thread and it reminded me that this is the general consensus of our experts here (and I consider -SWS one of THE experts).

Since we can't raise my EPAP because of my inability to exhale against it, doesn't this mean that raising my IPAP isn't going to solve anything if, in fact, I've still got obstructive apneas going on?

Wow! That's wonderful!! Thank you for posting the list of what was in the packet you took to your new doc - VERY helpful for some of us out here, I'm sure. I know it is helpful for me.

That's wonderful that they actually paid attention to your data and to YOU!!

And - there will be no blocking you from me. Thank goodness you are here with us.

I am SO excited for you. What an amazing feeling to have the energy to be doing "normal" things after suffering so long. It sounds like you have found an amazing doctor and that together you will get you feeling so much better. Yes, it may take time and tweaking..but what an improvement! I'm just thrilled for you xoxoxo

Madalot wrote:

-SWS wrote:Well, if you were in PSG titration for a fixed BiLevel machine, they would address OA clusters by increasing EPAP. That's standard titration protocol since OA is either incipient or frank before inhalation gets started. Therefore IPAP is not used to address OA.

Rather EPAP must be used for OA based on the sheer timing of event onset...

I saw this in another thread and it reminded me that this is the general consensus of our experts here (and I consider -SWS one of THE experts).

Since we can't raise my EPAP because of my inability to exhale against it, doesn't this mean that raising my IPAP isn't going to solve anything if, in fact, I've still got obstructive apneas going on?

While increasing EPAP is the normal method of tackling obstructive apneas, increasing IPAP can and does help open the airway and help improve breathing during inhalation. So, while it does not fully eliminate the apneas - it tends to "down grade" the apneas to hyponeas. At least that's my own personal experience.