#4 Sleep Study

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Betty/WV
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#4 Sleep Study

Postby Betty/WV » Wed Jun 08, 2011 10:11 am

Good Morning: I would like to throw this out to you all and see what you think.

My doctor wants me to have another sleep study (YUKKY) He feels I should be sleeping better with my CPAP. He feels maybe the pressure needs to be changed or I may need oxygen at night. This will be my fourth sleep study and I dread them. I only sleep 2 or 3 hrs at a time. I am so sleep deprived that I was falling a sleep driving. So I haven't driven for a couple months, sometimes just a very short distance. I hate not being able to drive but I don't want to wreck into someone and hurt them or myself. I'm thinking maybe the reason I'm not sleeping is because I have had RLS/EKD for so long and my sleep habits are crazy. For years I have walked the floors at night. Until I started Mirapex, which helps the RLS/EKD but the side effects are insomnia,,,,,,isn't that weird. I'm thinking maybe I should go ahead with the sleep study but I have doubts about it.

Would appreciate what any of you think.

BETTY/WV P.S. Just wanted to say I got the latest Nightwalkers Magazine from the RLS/EKD Foundation. I thought the new name was going to be Ekbom Disease but there is an article that says the new name is Willis-Ekbom Disease.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Laurachrissy
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Postby Laurachrissy » Wed Jun 08, 2011 11:41 pm

Hi Betty,
What kind of sleep apnea do you have? Central or Obstructive?
Do you have a copy of the report showing your values?
RLS sux

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SquirmingSusan
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Postby SquirmingSusan » Thu Jun 09, 2011 2:21 am

Betty, if Mirapex gives you insomnia, how are you sleeping at night? You said that you only sleep 2-3 hours at a time. How much total sleep do you get? To me it seems like if you already are on CPAP, and you're RLS is being effectively treated with Mirapex, that the next thing your doctor might consider is to give you a sleeping pill, like Ambien or Lunesta. Because if you're not sleeping because of the Mirapex, you will be sleepy during the day, whether or not your CPAP is adjusted correctly.

I don't recall what all you've tried that way, but maybe ask for a sleeping pill and see if you can get 6-8 hours of sleep every night. An then, if you're still so sleepy, agree to another sleep study.
Susan

Betty/WV
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Postby Betty/WV » Thu Jun 09, 2011 2:37 am

Hi Susan: What you said makes sense. I have to reschedule the sleep study anyway because I have a bad cold and coughing etc. so I couldn't possibly deal with a sleep study this way.

I agree about the sleeping pill. I tried Ambien one night, I bounced off the walls all night, it was the weirdest thing. I was half awake half asleep. I even got up and ate a large piece of ice cream cake that was in the freezer and didn't know I did it. I thought my husband did. And then I put 2 and 2 together and realized it had to be me. My husband didn't eat it and the only other one in the house was me and the dog. So I have a fear of sleeping pills. But I would try one, only not Ambien.

Sleeping 2 or 3 hrs a night is not good. Sometimes after being up a couple hours I can go back to sleep for an hour or 2. No wonder I have so many health issues.

Thanks for your comments

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Betty/WV
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Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Thu Jun 09, 2011 2:39 am

Laura: I did'nt get a copy of the report, of the last study. I'm going to call and get one. I don't think I have central apnea but I need to find out for sure.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Laurachrissy
Posts: 123
Joined: Thu May 12, 2011 5:11 pm

Postby Laurachrissy » Thu Jun 09, 2011 3:27 am

Are you using the ramp feature? this is a common problem that results in continuous arousal. If you have OSA you may find adding a humidifier to your machine beneficial. With CSA the addition of O2 may be all you need. Definitely get your results and even take them to a company that rents out the machines. They have a wealth of knowledge and can give you suggestions before returning to your doctor.

Talk to your doctor about trying (temp. renting) an auto titration machine if you have the standard fixed-pressure machine. This way you will have the algorithm built into the machine to detect when your breathing is compromised; therefore allowing you to enter REM. Severe OSA can awaken you as much as 20x's + an hour.

With a standard fixed-pressure machine any considerable change in weight will render your machine useless. Apnea, no matter how severe is 100% curable with the right machine/settings ie. ramp feature, masks/nose piece, etc. . Auto-titration takes the guess work out.

What were the reasons for having 3 different sleep studies? You know you can rent the auto-titration machine with a chip and do a 30 day sleep study at home and then take it to your physician for review. This will give him/her the info. needed to prescribe your settings or indicate that an auto-titration should be the way to go. Own your own, if you'd like, go to a home health service and disccuss an option of renting one with a chip for 30 days and have them print out the results to carry to your next doctors visit. We paid $84.00 for the machine plus the report. All the best :wink:
RLS sux

Betty/WV
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Joined: Mon Nov 29, 2004 11:11 pm
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Postby Betty/WV » Thu Jun 09, 2011 7:05 am

Laura: As for the 4 sleep studies. The first one was because I slept so poorly and the doctor suspected sleep apnea. But at that time I didn't. Then much later the doctor was concerned about sleep apnea, since I already have a neurological sleep disorder. This time I had sleep apnea. Then I had to have one more to be fitted with a mask etc and see how I did with the CPAP. Now #4 because the CPAP doesn't seem to help me sleep better. So who knows? I just hope t he doctor knows what he is doing.

My insurance covers the sleep studies and the CPAP machine and equipment.

What is the ramp feature. And what is OSA and CSA? Sorry to sound so dumb.

Anyway, now I have a cold or something. Coughing, runny nose etc. etc. so since my study is scheduled for this Sunday night, I think I better have my study rescheduled. But I guess the wise thing to do is have the study.

Thanks for all your concern and suggestions. I appreciate it.

Betty
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Postby ViewsAskew » Thu Jun 09, 2011 8:33 am

Hi Betty,

All these acronyms can be confusing, can't they? My hubby as OSA and his best friend has CSA, so I know just enough to be dangerous :-).

OSA - obstructive sleep apnea. This is from the architecture of the nose/mouth/throat restricting air from getting to the lungs. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001814/

CSA - central sleep apnea. This is when your brain just doesn't send the right signals to breath. It's sometimes treated differently than OSA, and sometimes the same. It's very rare - one in 100 people with apnea have only CSA. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004404/

Mixed sleep apnea is when you have both.

The vast majority of people have CSA.

When the machines first came out, they had one function - pushing air through the mask. Many people stopped using them because of discomfort, the strong immediate pressure, the difficulty breathing out, etc. Over time, they've created nifty things that resolve those problems.

Ramping is one of those nifty things. Instead of immediately starting out with strong pressure, the machine slowly builds to the pressure you need. This allows people to get to sleep more easily and adjust to the pressure slowly. My hubby says this made a huge difference.

Another nifty feature came when they create bi-pap instead of c-pap. C-pap is continuous air flow; this works fine when the obstruction is mild and you don't need high pressure. But, when you need higher pressure, it becomes difficult to breath out against that pressure. Bi-pap has stronger pressure when breathing in, but lower pressure when breathing out. It makes it much easier to breath. Hubby also things this is a great feature.

Yet another nifty feature was when they developed a machine that could sense how much pressure you needed and automatically adjust it. Many people find that they do not stay at a constant state all night long, but that they need more pressure or less pressure at different times. The auto-titration machine Laura mentioned above does this.

Most machines can record data. Your doctor can review your data and see how well you're doing. But, it really helps to have a machine with all the bells and whistles so you get as much data as possible. That's where Laura's idea to rent a machine comes in.

Doctors get a lot of data from a sleep study, but it's only one night and people often have difficulty sleeping, so the end result can be very little data. Renting a machine at home as Laura suggested can be a great solution - it's less data overall, but usually you get a lot more of it. That can really help them. Some doctors will also send a patient home with a device that detects leg movements.

Maybe you could ask the doctor about your options, particularly because of the RLS/EKD. While the insurance will pay, it doesn't really help the doctor (or you) if you don't sleep much.

Let us know what you decide to do.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Thu Jun 09, 2011 11:36 am

thanks for the help. I really knew most of this but the initials threw me off. My machine has the ramping, I just didn't know the term. And it also keeps track of the data.

I agree, the sleep studies can't provide much data when you can't sleep. I chuckled at the technican when she came in at 4 am and ask me if I couldn't sleep a couple more hours, as if I could push a button and go to sleep. How I wish.

I learn so much from this site. I appreciate you all taking the time to provide all this information.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand


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