UPDATE - Appt with Sleep Neuro

Maddie,

On the plus side: This doc has clearly listened and done his homework. After all, he's reached many of the same conclusions you have---particularly about the pressure increases being one likely cause of the wakes. And while the "You must sleep with the vent---as a vent" may not be welcome, it's not a surprise either. It sounds like the real problem at night is the muscle weakness and the OSA is the cherry and whipped cream on top of the sundae of your misery.

I'd say give the Nuvigil an honest trial of a week or so. Maybe your body will start to get used to it and the weird feelings will start to disapate. On the other hand, if they don't, it sounds as if this doc will take any complaints of intolerable side affects quite seriously.

All in all, I'd say you had a pretty decent meeting with the new doc even if it didn't result with a "Hey, here's something else we can try".

And since he thinks the lengths of the naps may be creating some problems at night, maybe you could start napping with an alarm clock so that you don't sleep too long during a nap?

I'd say you lucked out bigtime with this doc. Any doc that would actually talk to your other doctors and read your documentation is a keeper! I'm glad you are going to continue to give the Nuvigil a chance- it can take a few days for the side effects to wear off. I hope it works for you and gives up the fight with your other med. Good luck.
It sounds like there are really no fixes for your problems- I know you've tried about everything. The Nuvigil is a good idea. I take it and it helps me stay awake, but does not give energy.

Usually the first day or first few days of a new med is the worst for me. If it doesn't get better perhaps you could try a reduced dose. Or maybe the answer will be a combination of stimulant and a short nap.

I'll continue to hope that this helps. Thanks for the update.

I agree that this doctor is good. He was well prepared for my appointment, which was nice.

Afternoon naps (the 3-5 hour ones): I never sleep straight through. I almost always wake up after 30-90 minutes. Because it's daytime, I turn the screen saver OFF on the ventilator, thus I can see if the pressure is up when I wake up. It is always up, thus giving some credibility to the theory that the increased pressure, while necessary, is major factor in why I wake up so much. Catch 22.

I don't want to take naps at all (and never used to at all) but the body says unless I keep moving around, we WILL go to sleep and my muscles refuse to keep moving around enough to prevent it. It makes me so angry sometimes because I WANT to do something (like cook something or bake a cake or maybe go somewhere -- ha!) but my muscles just refuse and insist that I sit down and give them a rest. At that point, the rest of me says "SLEEP" and I can't stop it. I HATE it. But fighting it just makes it worse.

I plan on giving the Nuvigil a good chance, as I am doing with the mestinon. I've been on the mestinon over a week and my doctor asked me to try to read a book (something that I have basically stopped doing because of my eye muscles) after a week or so and see if the meds have helped at all. I haven't gotten around to trying yet, but need to before I talk to him next week.

My thanks to all.

While on the surface your appointment looks like it is getting "mixed reviews," I think you should be encouraged. There is some real progress here.

I mean a doctor that listens, and understands... That is great.

It seems that the "only" hurdle left is for them to reach into their magic bag of tricks and find a "pressure desensitizer" that will allow you to get a good nights sleep.

I really thought the leg movements would have been significant, but that would probably require yet another medication, so I am glad they are not.

All in all I think you have made some real progress in all of this. I now believe the problem is well understood by all. That is a good starting point from which to find a solution.

Maddie,
Glad to hear you made some progress with this appnt. Hang in there on the new meds. I have to agree with the other posters...gotta find a way to get you to sleep through the pressure changes!

I was thinking about you all yesterday and hoping things had gone well for you.

Since he couldn't access your last sleep study due to not having the right software I'd be a bit disappointed he wasn't interested in ordering another sleep study w/techs and facility he knows and is familiar w/and has confidence in. But - maybe he has a way of gaining access to viewing the CD that at a later time.

Other than that the entire visit sounds promising if disappointing there was no miracle cure discovered or suggested. It is so hard to be patient in the best of times, Maddie. I can only begin to imagine how hard it is for you at times to maintain any hope. (((hugs)))

Slinky wrote:It is so hard to be patient in the best of times, Maddie. I can only begin to imagine how hard it is for you at times to maintain any hope. (((hugs)))

You are right about this, Slinky. I'm having an incredibly bad day, with serious body fatigue, but awake. I feel the urge to keep doing things, but my body does not like it at all. I'm also having trouble breathing, even when sitting down. It's not serious llike gasping for air or anything, but noticeable.

I don't know if this is the Nuvigil, the Mestinon, combination or neither. But I can tell you for certain that I am one very unhappy camper right now.

Madalot wrote:... I've been on the mestinon over a week and my doctor asked me to try to read a book (something that I have basically stopped doing because of my eye muscles) after a week or so and see if the meds have helped at all. I haven't gotten around to trying yet, but need to before I talk to him next week. ...

Madalot, just a note. Due to problems with eye muscle coordination, I had stopped reading. However, I decided to give a Kindle a try. It's been a godsend! I can now read again. [ Well, except of those REALLY bad days. Some days I am unable to focus on anything. It's a bit disconcerting! ]. With a Kindle I can adjust the font size up and down to meet my needs. As I get tired, I adjust the font size upward to make it easier to read. This might be an option for you as well. I had reached a point where even large type books where too small.

Understand, my vision should be correctable to 20/20. But with the eye muscle coordination issues, I am luck to have 20/50 vision. And it's worse when i am trying to read fine detail. My eyes tire very quickly. So being able to adjust the font size makes a huge difference.

Hope that helps.

P.S. Madalot, just to be certain you know ... by proposing one way help with the reading issue, I was not down playing your struggle with the excessive daytime sleepiness. You have my empathy there. I just thought if I could help share one small victory in my own struggle to maintain "normalcy", it might also help you. Do know that you and your family remain in my prayers.

I have to agree with John on the reader idea. I use one and love it.

Yes, the Kindle has been a godsend for one of my dear friends who is pretty much housebound and has eye problems as well. Her kids got it for her last Xmas. With the meds, is it possible to start with a lower dose(or cut in half) until your body adjusts? You're describing the hyper way it feels for me when I have to go on high doses of prednisone to relieve my asthma flareups. My body is tired and exhausted from the breathing issues but I have the jitters and can't rest. It's a very unpleasant feeling.

JohnBFisher wrote:P.S. Madalot, just to be certain you know ... by proposing one way help with the reading issue, I was not down playing your struggle with the excessive daytime sleepiness. You have my empathy there. I just thought if I could help share one small victory in my own struggle to maintain "normalcy", it might also help you. Do know that you and your family remain in my prayers.

No problem, John. Didn't take it wrong or badly at all. I may consider a Kindle at some point -- see how things go.

I also have to chime in about the kindle. Mine is almost 2 yrs old and I love it. You can change the font size, and the words per line. Because it isn't backlit it is easier on the eyes. I read mostly the free books(there are many to choose from) but will purchase a book on it if I really want to read it. I have over 200 books on mine and all but 6 or 7 were free. The special offers kindle is $114 and is just as good as the regular kindle.
If you like to read, this could be your answer.

Brenda

Thank you for all the input on the Kindles. I've thought about buying one, but never really took that step. I will move the idea up higher on my "think about this list" --

Whether or not I'm reading and how I do it is going to be totally irrelevant if we don't solve some other things and fast. I don't know if I'm having side effects from the Nuvigil or what, but I feel AWFUL and aside from feeling like I WANT to stay awake during the day, everything is worse sleep wise and breathing wise.

I have a call into my sleep neuro's office now to run this by him.

I am sinking fast and if I don't get a life boat quickly.....The weekend is coming and I don't think I will make it through the way I feel right now.

I am very, very, very......