Tag Archives: Sleep Apnea

In Wait and See Mode

Day by Day with a Movement Disorder Posted on by  

The CPAP machine is getting a little bit easier to stand now, but I still haven’t slept past 3:00AM with it on. That represents as much as 6 hours of sleep on a few nights, which is definitely better than before. I am having trouble keeping the chin strap on, as it is a soft band of stretchy material, with Velcro on the end. I need it because I am a mouth breather. Without it, I wake up with a sore throat and a dry mouth, as the forced air is being forced right down my throat.

So, I called the people that the CPAP machine came from, and we will take all the stuff into their office on Monday, and they’ll see what they can do to help me.

So far, I’m not satisfied with the results of the Bowel Retraining routine the Gastroenterologist has me on, as I still have difficulty getting my muscles to work effectively. I’m to call him this next week to set up the colonoscopy, if I’m not satisfied with the results, so it looks like I may be scheduling that sometime soon.

So for the time being I’m in a state of limbo, just waiting for the right time to take care of things differently.

I have tried to get more exercise the last few days, but it has to be done at the crack of dawn, literally. I was outside walking around in the front, where the street light shines, at 5:30 this morning. It was already hot, but certainly bearable. I worked in the yard a bit, swept the driveway and sidewalks (a good exercise for my shoulder), and worked up a good sweat. DH and I have both noticed that I’m slowing down again. This symptom of Parkinson’s is called Bradykinesia, and it’s my main problem, both with my legs, hands, and my digestive tract.

CPAP Saga Continues

Day by Day with a Movement Disorder Posted on by 2

I recently read that something like 80% of all people with Parkinson’s Disease have some kind of Sleep Disorder, so I’m in good company, eh? There’s even a study in progress to see if using a CPAP machine will improve the cognitive abilities of PWP, particularly memory. That’s something I’d love to see as a side effect of putting up with this thing!

Well, I haven’t given up yet, but I also haven’t gotten through a whole night with the CPAP machine on, either. I’ve been getting to sleep with it pretty well. But then my old insomnia habits take over, and I’m wide awake several hours later. I am finding it easier to get back to sleep the first time, but not when I wake up around 1:30 or 2:00AM. That’s when I’ve been taking it off on most nights.

I’ve also had a vague nausea and a horrible bout of stomach bloating, particularly this weekend. Since this is already a problem related to the elimination difficulties I have, I treated it with that in mind, with no success. Then, just on a lark, I Googled for bloating and Cpap. To my surprise, I found that this is a common problem, as some people get air forced in their stomachs. The suggestion was given to use Gas-X, and after I did that I felt much better! It’s a shame I didn’t think to check that sooner, as I didn’t go to Church this Sunday, as I just felt entirely too yucky.

Another thing I discovered quite on my own yesterday made a considerable comfort difference for me last night. There are Velcro adjustments at the forehead and around the back of the neck and under the ears for the attachment of the mask. I’ve been loosening and pulling on them for days, trying to get comfortable. I happened to notice, while the mask was off, that the harness was all twisted out of shape, with one side pulled tighter than the other. So, I undid them all and started from scratch, carefully tightening them up in a symmetrical way, until I thought I had the right size. Then, I tried it on with the CPAP blowing air at its top volume and carefully adjusted it again. Now it is much more comfortable to wear!

I’ve been up since 1:30AM, so the CPAP hasn’t helped me break the insomnia cycle yet. But I did sleep until something like 5:30AM Sunday morning, although most of that was without the CPAP. It’s just going to take time, I know, but I WANT IT NOW. Patience was never one of my virtues.

Cortisone Shot Again

Day by Day with a Movement Disorder Posted on by 2

I went yesterday and got another cortisone shot in my right knee, and I can already tell that it’s beginning to help. The Orthopedist says he doesn’t like to do them more often than every 3 months, so that gives me some idea of how long I would need to wait until I could have it done again. I was doing OK on this last shot, until I did too much packing of stuff of Daddy’s, which involved squatting down. That’s just something I can’t do anymore, not only for the knee’s sake, but also for other problems I’m having. I’ll just have to do all the other exercises for my knee that the Physical Therapist gave me, and leave that type of exercise out of my routine.

It’s just too hot to walk at the track right now, with 103 yesterday. Even at 5:00AM it’s just too hot and the air quality is too poor to be out there, so we’re exercising in the house to some videos. Well, hubby is following the video, and I’m bouncing very carefully on the mini trampoline at the same time.

I noticed a vague nausea last night after supper again. The same thing happened night before last, but I’m not sure where that’s coming from. The Amitiza I’ve just started on is bad about that, so that may be what’s going on, or it could be the elimination problem I’m having causing it.

The steroids always make me not sleep, even before I had trouble with insomnia, so I managed the C-pap until about 1:00AM and then I just couldn’t get back to sleep with it on. I was pleased I got by with it that long, knowing how the steroids do me. I will get used to this thing … I will get used to it!! Just have to keep telling myself that, and take each day at a time.

First Night at Home with a C-PAP

Day by Day with a Movement Disorder Posted on by 2

My DH got in the expected jibes about how beautiful I looked in my CPAP getup, and warned me not to try to give him a kiss during the night. It does look pretty intimidating and terribly ugly. Our DD who used one for awhile called it Octopus Face.

My face was still sore from the pressure of the mask they had used at the Sleep Study, and nothing I did by way of adjustments made it comfortable. I was very tired, so I did manage to get to sleep with the harness on, but I woke up, as usual, a couple of hours later, wide awake. This is my normal insomnia pattern. Try as I might, I just couldn’t stand the thing. I yanked it off several times, crying again out of sheer frustration. I can’t even count how many times I pulled it off and put it back on. I even took a Lunesta, thinking surely it would help me get to sleep with it on. No such luck, as I lay there fighting the stupid thing, wide awake. I finally gave up and turned it off.

It didn’t take me long then to get back to sleep, but I did wake up at 2:00AM, which is also normal for me when I’m in insomnia mode. I could tell the sleeping pill had me pretty relaxed, so, I thought I’d try it again. This time it worked, or at least it partly worked. I did cheat and leave the chin strap off, so maybe I just breathed through my mouth the rest of the night. I don’t know, and I don’t really care. I slept until 7:00AM, and I can’t remember the last time I slept that late – years probably. And I did sleep all that time with the mask on, properly strapped into position, with the air blasting away.

This equipment wasn’t cheap, even with very good insurance, so I don’t want to waste the money. More importantly, I want to be able to sleep through a night peacefully, something I can barely remember doing.

The problems of getting used to a CPAP machine are twofold in my view of it. One thing is that the stuff on your face is uncomfortable, no matter how soft they pad it. It has to be tight enough to prevent the air from leaking out around it. If it’s not tight enough, you end up with a stream of air blasting your eyes!! Not exactly conducive to sleep, eh?

The other problem is that the air is being forced into your lungs under pressure. Well, that’s the good part, because that’s what stops the Apnea. The bad part comes when you try to breathe OUT. You have to breathe out AGAINST the pressure that is pushing the air IN! It’s a suffocating feeling that I am struggling to handle at all.

The manufacturer of my machine, and I suspect all the other brands, too, realizes this is a problem, and has what they call a RAMP UP button. The idea is to start the machine with less pressure, which gradually builds up to the pressure prescribed by the doctor. You’re supposed to be asleep by the time it gets powerful. That’s why I was able to get to sleep at first, while I was so tired. I was off in la la land before the pressure increased to full amount. But after I had slept a couple of hours and woke up, I didn’t have that luxury, as I was still awake while it was ramping up big time. I pushed the RAMP UP button several times in a row, to no avail.

Will I be able to get used to this contraption? I’d love to say that I will do whatever it takes to adjust, but I’d be lying if I did. I certainly intend to try, and keep trying, but it’s such an unpleasant feeling that I’d be a fool to make promises to myself on this one. It took some fervent prayers to get me to sleep that first night at the Sleep Study, and I think I’m going to be doing a LOT of praying to help me adjust to all this. That’s all I can do – Try my very best and ask for God’s help to get used to this thing.

6 Doctor Visits in 6 Days!!

Day by Day with a Movement Disorder Posted on by 4

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what’s going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don’t like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I’ve been on the antibiotics since Friday, my left knee no longer looks like it’s getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I’m very pleased with how much it is helping with the constipation problems.

I’ve been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn’t dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don’t want to be hobbling around the way I am now, trying to recuperate from major surgery!