Turning Point - Took a While, But I'm There

Madalot · Post by **Madalot** » Thu Apr 28, 2011 5:46 am

I'm drafting an email to my doctor right now. This is what I've got so far, but I'm not quite ready to send it as I'm getting very tired this morning...

I don't think there's any doubt that I am very disappointed in what the sleep study showed. That was one reason I took so long to agree to it.

This is the way I see the situation:

WITHOUT the ventilator, I struggle to breathe before I go to sleep, but once asleep, I am unaware of any awakenings/arousals. I went without the ventilator last night, barely making it because of the struggle to breathe, BUT I slept straight through from 10:30 - 4:30 without waking up at all. I most likely deal with OSA and resulting desaturations.

WITH the ventilator, my breathing is easier and comfortable, but I wake up a ton during the night. My oxygen levels are usually maintained.

This is becoming a serious quality of life issue now. By lunch time, I am so tired and exhausted that I can barely function in any capacity. I barely leave my home anymore because I am so exhausted it's not worth it to me.

I realize that the neuromuscular disease plays a major part in all this and is a contributing factor.

If I don't keep trying, my husband isn't going to make it. That's my only motivation right now.

Madalot · Post by **Madalot** » Thu Apr 28, 2011 5:47 am

Slinky wrote:Maddie, what are the file extensions on that CD???

"We" may be able to download the necessary software free. One of my sleep studies was usuable w/my 'puter. The other I had to download a free software from the net.

There are TONS of files on this DVD. It was created with Sandman (this is what my sleep lab told me).

HoseCrusher · Post by **HoseCrusher** » Thu Apr 28, 2011 10:21 am

Congratulations on getting a reasonable amount of sleep.

While you are making the transition you may be able to simply add oxygen and minimize the effect of desaturations.

I don't know if this will be effective, but it might be worth discussing with your doctor.

If adding oxygen helps, I can see you sleeping a few nights on oxygen but without your ventilator to get your strength built back up, then you can try different settings to make using the ventilator use more comfortable.

Keep in mind that we are all pulling for you and will help in anyway that we can.

SleepingUgly · Post by **SleepingUgly** » Thu Apr 28, 2011 10:54 am

At the risk of becoming a broken record, there are lots of people who despite effective treatment continue to have daytime sleepiness and/or fatigue, either due to OSA or other disorders, such as MS, Chronic Fatigue Syndrome, etc. Wake-promoting agents can improve the quality of their lives. This doesn't mean you can't continue to search for the reason the ventilator disrupts your sleep so much, it just means that you may have more energy during the day for this as well as other endeavors.

For some unlucky ones the gap between what they wanted in life and what they are capable of is enormous. A wake-promoting agent may make that gap smaller, and allow you to have a more productive day and feel better. (As noted, you'll have to ask your doctor if you're a candidate for this).

My mother, who was extremely compromised physically by her illness and fatigue, unfortunately died long before Provigil was available. I'm sure she would have appreciated the extra energy, and would have particularly appreciated not having to ask me for quite as much help as she had to. No, it wouldn't have cured her, but it would have improved the quality of her life to some degree, and every bit helps.

I'm not going to bring this subject up to you again, as I think 3 times is enough.

DoriC · Post by **DoriC** » Thu Apr 28, 2011 11:27 am

Madalot wrote:I'm drafting an email to my doctor right now. This is what I've got so far, but I'm not quite ready to send it as I'm getting very tired this morning...

Your email is good, telling it like it is except for one of your descriptions,("wake up a ton"). Could you really emphasize how many times you actually are "awakened/aroused" if you have a good idea?. I know anything new now means more consultation with Drs but hope you'll keep SU's suggestion about Provigil and Hose Crusher's idea about oxygen on your plate. Your friends are here for you.

I don't think there's any doubt that I am very disappointed in what the sleep study showed. That was one reason I took so long to agree to it.

This is the way I see the situation:

WITHOUT the ventilator, I struggle to breathe before I go to sleep, but once asleep, I am unaware of any awakenings/arousals. I went without the ventilator last night, barely making it because of the struggle to breathe, BUT I slept straight through from 10:30 - 4:30 without waking up at all. I most likely deal with OSA and resulting desaturations.

WITH the ventilator, my breathing is easier and comfortable, but I wake up a ton during the night. My oxygen levels are usually maintained.

This is becoming a serious quality of life issue now. By lunch time, I am so tired and exhausted that I can barely function in any capacity. I barely leave my home anymore because I am so exhausted it's not worth it to me.

I realize that the neuromuscular disease plays a major part in all this and is a contributing factor.

If I don't keep trying, my husband isn't going to make it. That's my only motivation right now.

Madalot · Post by **Madalot** » Thu Apr 28, 2011 1:15 pm

SleepingUgly wrote:At the risk of becoming a broken record, there are lots of people who despite effective treatment continue to have daytime sleepiness and/or fatigue, either due to OSA or other disorders, such as MS, Chronic Fatigue Syndrome, etc. Wake-promoting agents can improve the quality of their lives. This doesn't mean you can't continue to search for the reason the ventilator disrupts your sleep so much, it just means that you may have more energy during the day for this as well as other endeavors.

For some unlucky ones the gap between what they wanted in life and what they are capable of is enormous. A wake-promoting agent may make that gap smaller, and allow you to have a more productive day and feel better. (As noted, you'll have to ask your doctor if you're a candidate for this).

My mother, who was extremely compromised physically by her illness and fatigue, unfortunately died long before Provigil was available. I'm sure she would have appreciated the extra energy, and would have particularly appreciated not having to ask me for quite as much help as she had to. No, it wouldn't have cured her, but it would have improved the quality of her life to some degree, and every bit helps.

I'm not going to bring this subject up to you again, as I think 3 times is enough.

I'm sorry I didn't respond to this directly. My bad.

I have not discounted asking about this at all. As a matter of fact, I've researched Provigil to check for any obvious contraindications. People with neuromuscular conditions frequently can't take certain medications because of possible side effects that would exacerbate their condition. As a matter of fact, the drug of choice for the stomach problems is completely contraindicated for me. But I didn't see any for Provigil.

I am not eager to start yet ANOTHER prescription medication (I already take 5 and am probably looking at a 6th). And I know so much has happened, but I need to point out again that this level of fatigue was not there until I started therapy in November of 2009 and has only worsened on the ventilator.

However, if we cannot find other settings on the ventilator or another cause for the awakenings and resulting fatigue, and my medical team sees no reason not to, trying something like Provigil might be a very reasonable and viable option.

So, my thanks SleepyUgly for pointing this out. I'm so sorry your mother wasn't able to get help with something like this.

HoseCrusher wrote:While you are making the transition you may be able to simply add oxygen and minimize the effect of desaturations.

I don't know if this will be effective, but it might be worth discussing with your doctor.

If adding oxygen helps, I can see you sleeping a few nights on oxygen but without your ventilator to get your strength built back up, then you can try different settings to make using the ventilator use more comfortable.

Keep in mind that we are all pulling for you and will help in anyway that we can.

I have oxygen piped into the ventilator now (nice, noisy oxygen concentrator). As much as I may wish to just stop using the ventilator (and sleeping straight through for 6 hours is a powerful motivator), I know that I NEED machine support to sleep and not using it is just, well, stupid. Yeah, I can be stupid at times. Maybe not stupid, but emotional in my decision making. Okay...stupid.

I promised my husband I would use it tonight and from now on until we can figure something out about the settings and fatigue.

snuginarug · Post by **snuginarug** » Thu Apr 28, 2011 10:50 pm

I am no expert, so i can't really contribute to the problem solving. But i wanted to let you know I am thinking of you. I'm really glad that you are continuing to try to work on this quality of life issue. You deserve to be heard and you deserve all possible help in resolving this.

Take care ((( mad )))

Madalot · Post by **Madalot** » Fri Apr 29, 2011 5:29 am

snuginarug wrote:I am no expert, so i can't really contribute to the problem solving. But i wanted to let you know I am thinking of you. I'm really glad that you are continuing to try to work on this quality of life issue. You deserve to be heard and you deserve all possible help in resolving this.

Take care ((( mad )))

Thanks, Snug. And my thanks to all that have posted, written and offered support and advice. I know I haven't replied to everyone individually, but please know that I read every response and appreciate every one that takes the time.

I wish someone could figure this out. I really do. This is nuts. Without the machine, I sleep straight through, but wake up a little tired. With the machine, I wake up at least 4-10 times (that I fully wake up) and wake up in the morning EXHAUSTED. It's insane.

I did write to my doctor yesterday and I heard back from her yesterday afternoon. She expressed concern (and a little bit of irritation) at my not using the vent, claimed she understood my frustration and STRONGLY recommended that I use the ventilator and try to be patient while they figure it out.

She said she's spoken to my neurologist and they've agreed that the leg movements could be contributing, but I can't help but wonder why they would be worse WITH the vent as opposed to without it. She said my neurologist is going to call me to discuss the medication and I take it he's going to prescribe it. Once I hear from him, I can feel him out about this and see what he thinks about perhaps finding a SLEEP doctor at his facility. I will also run Provigil past him as a possible option.

One thing I found REALLY interesting is that as of midday on Monday, my doctor was still claiming that I was sleeping supine and that was my entire problem. It was Monday afternoon when I blasted her on the phone and she finally conceded that I had alleviated most supine sleeping months ago.

I got a letter from her yesterday regarding the sleep study where she basically said what we talked about on the phone late Monday -- the letter was dated the PREVIOUS Friday. If I had to guess, I'd say my tirade on the phone and requesting the raw data from the lab probably has her looking a little more carefully and realizing she wasn't paying enough attention to me, my complaints or my situation as a whole.

I also heard from the company that purchased my DME. If my conversation with the Respiratory Manager is any indication, this will be a good change for me. This company has numerous Respiratory Therapists on staff (licensed in my state), with someone on call 24 hours. We went over my entire situation and I made them aware of some things my other DME didn't tell them. My new RT will be calling me early next week and should be coming out by the end of the week to see me, with monthly visits once we get everything situated. They also plan on leaving me on the Trilogy, which is good, but the company has never used it before so there is a learning curve. The Manager seemed happy and borderline grateful about my knowledge on the Trilogy and seemed to appreciate my offer to help them with the settings if need be. He also agreed to make the maintenance on the Trilogy (which was due in February and my DME hasn't done yet) a top priority. According to my source, my ventilator is due for annual maintenance which includes some software and hardware upgrades, some of which may eliminate some of the alarm issues I've had on other settings. This DME is going to get it done as quickly as they can. I'm relieved about that.

So, this is where I am right now.

Robespierre · Post by **Robespierre** » Fri Apr 29, 2011 6:45 am

Maddy, I too am short on useful advice, but I'm thinking about you. Hang in there. I'm inclined to think, as others have expressed, that if your pulmo can't come up with something better than she has so far, you should probably seek out a board certified sleep specialist as an additional resource.

(((hugs)))

Madalot · Post by **Madalot** » Fri Apr 29, 2011 7:05 am

Robespierre wrote:Maddy, I too am short on useful advice, but I'm thinking about you. Hang in there. I'm inclined to think, as others have expressed, that if your pulmo can't come up with something better than she has so far, you should probably seek out a board certified sleep specialist as an additional resource.

(((hugs)))

This is part of my problem I think....she is board certified in both pulmonology and sleep medicine. I think one of the problems we're running into is she isn't very good about sharing her thoughts. If I figure out what to ask, she'll answer it, but doesn't volunteer much.

From my perspective (and I'm theorizing here) is we have two, distinctly different problems we're trying to treat: diaphragm muscle weakness AND OSA. There's no doubt I have both issues going on.

From the pulmonary standpoint, the diaphragm weakness seems to be effectively treated with the ventilator at its current settings. I agree with that because I can FEEL how it's easier for me to breath and I see the pulse ox reports showing things are good on that front.

But something is causing me to wake up anywhere from 4-10 times a night (full awakenings) and I am more tired using the ventilator than not using it. But I get that I NEED to use it because of the muscle weakness -- and I am.

I hope I hear from my neurologist today, but I won't hold my breath on that. I want to run this by him and see how he feels about what's happening and everything I've been through.

robysue · Post by **robysue** » Fri Apr 29, 2011 8:11 am

Madalot wrote:I wish someone could figure this out. I really do. This is nuts. Without the machine, I sleep straight through, but wake up a little tired. With the machine, I wake up at least 4-10 times (that I fully wake up) and wake up in the morning EXHAUSTED. It's insane.

and

But something is causing me to wake up anywhere from 4-10 times a night (full awakenings) and I am more tired using the ventilator than not using it. But I get that I NEED to use it because of the muscle weakness -- and I am.

Maddie,

My heart and empathy goes out to you, even though I have no advice to offer. This fact that some of us wake up (full awakenings) so much more often with xPAP (vent in your case) than without xPAP simply seems to be ignored by the sleep docs. And both your sleep doc and my own seem to be completely incapable of---or perhaps uninterested in---answering the big questions:

Why do some people start to have numerous, full, and often long awakenings only AFTER they start xPAP therapy?

And when do these numerous, full, and often long awakenings become more disruptive of the goal of obtaining quality, restorative sleep than the repeated short OSA arousals that cause no conscious awakenings?

And I can't help but wonder: Do those of us who feel much worse on xPAP therapy than we did before starting xPAP (in terms of daytime sleepiness and daytime exhaustion) have more problems with frequent full awakenings on xPAP?

Unfortunately, the thing that's slowly working for me (in terms of reducing those unwelcome and disrupting frequent full awakenings) is the sleep restricted schedule the PA has me on for fighting the insomnia. But that's not an appropriate thing to be suggesting to someone with your complicated and severe medical conditions.

So hugs and prayers and thoughts and empathy being sent your way are all I can really offer.

Madalot · Post by **Madalot** » Fri Apr 29, 2011 8:53 am

I think one of my biggest problems is the expectations I had after the titration study AND finding this site. Even though my titration study was tough, I did find that the next morning, while tired, I had more energy than I'd had in a LONG time. I really felt that IF doing cpap (bipap/vent - whatever) would help me get a bit more energy every day, it was definitely worth it. And damn...I have been COMPLIANT (aside from a few attitude-induced non-compliant nights). Both my doctor and DME commented that they had never seen a patient that was a compliant as I was and as quickly.

I guess when you can't breathe, compliance is easier when the machine fixes that problem.

I usually have NO trouble going to sleep. I almost always fall into a nice, sound sleep within 5-10 minutes of laying down. Even when I wake up, I usually turn over and go right back to sleep. I'd be okay with that if not for this horrendous daytime fatigue that was not like this (to this degree) before starting the respiratory therapy.

I'm waiting on my neurologist now, which means I'm in "hurry up and wait" mode until I hear from him.

DoriC · Post by **DoriC** » Fri Apr 29, 2011 9:11 am

Madalot wrote:I usually have NO trouble going to sleep. I almost always fall into a nice, sound sleep within 5-10 minutes of laying down. Even when I wake up, I usually turn over and go right back to sleep. I'd be okay with that if not for this horrendous daytime fatigue that was not like this (to this degree) before starting the respiratory therapy.

I'm waiting on my neurologist now, which means I'm in "hurry up and wait" mode until I hear from him.

Optimistically, it seems that maybe you've narrowed it down to daytime fatigue for which there are meds and possible PLMs waking you for which there are meds. If that turns out to be the case and the meds work for you without contraindications, wouldn't that be great!

jnk · Post by **jnk** » Fri Apr 29, 2011 9:33 am

If nothing else pans out, I wonder if your team might consider letting you try a regular ResMed VPAP for a week or so just to see if that allows you to be more comfortable and get better sleep? If you need backup, you could use an S/T. You could use a stand-alone pulse-ox to make sure you were sufficiently ventilated.

There may be good reasons not to do that. I don't know. But if comfort ends up being the issue, sometimes another brand matches a particular patient's breathing, I have heard. And plain bilevel can ventilate.

AVAPS is great, but if another approach from another brand does well enough and does so more comfortably for a patient, it might be worth considering in some circumstances. It may not be a long-term solution, but could provide a short-term one.

Or not.

Just trying to think outside the box. But I'm no pro, so that may be a particularly silly idea for a number of reasons that I would have no way of knowing about.

Madalot · Post by **Madalot** » Fri Apr 29, 2011 9:46 am

DoriC wrote:
Madalot wrote:I usually have NO trouble going to sleep. I almost always fall into a nice, sound sleep within 5-10 minutes of laying down. Even when I wake up, I usually turn over and go right back to sleep. I'd be okay with that if not for this horrendous daytime fatigue that was not like this (to this degree) before starting the respiratory therapy.

I'm waiting on my neurologist now, which means I'm in "hurry up and wait" mode until I hear from him.
Optimistically, it seems that maybe you've narrowed it down to daytime fatigue for which there are meds and possible PLMs waking you for which there are meds. If that turns out to be the case and the meds work for you without contraindications, wouldn't that be great!

I'm not thrilled about another medication, but I'm open to it and willing to try it. I have no idea WHEN I'll hear from the neuro though.

jnk wrote:If nothing else pans out, I wonder if your team might consider letting you try a regular ResMed VPAP for a week or so just to see if that allows you to be more comfortable and get better sleep? If you need backup, you could use an S/T. You could use a stand-alone pulse-ox to make sure you were sufficiently ventilated.

There may be good reasons not to do that. I don't know. But if comfort ends up being the issue, sometimes another brand matches a particular patient's breathing, I have heard. And plain bilevel can ventilate.

AVAPS is great, but if another approach from another brand does well enough and does so more comfortably for a patient, it might be worth considering in some circumstances. It may not be a long-term solution, but could provide a short-term one.

Or not.

Just trying to think outside the box. But I'm no pro, so that may be a particularly silly idea for a number of reasons that I would have no way of knowing about.

I could accomplish this test with the ventilator simply by turning off AVAPS and running it in basic bipap S/T mode. I would be thrilled to get on another machine and NOT have the perpetual rental on this. There was a part of me that was hoping they would have suggested this after the sleep study (a different machine). Plus, I have my own recording pulse ox monitor, so it's not unrealistic for me to make the attempt.

This is NOT a bad idea to ask about. See if we can maintain my breathing enough without the AVAPS. I might ask her about this and see what she thinks about trying this.

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