Hello: I'm new and here is my story

tekis · Post by **tekis** » Fri Oct 05, 2012 9:41 am

Hello everyone: I underwent a sleep study last summer (2011). They said I had "mild sleep apnea, alpha intrusion, and restless leg syndrome." I went back again and they screened me for a CPAP machine. I got it a month or so later. Tried it. Hated it. It made it impossible to sleep. I was prescribed Ambien at the time, so I continued taking that and gave up on the CPAP. Months later, an ENT said I had a "deviated septum." Got that fixed this March. 90 days later I started sleeping better, go off the Ambien. Now, I'm taking Melatonin, but my sleep's crap. I'm fatigued. I yawn uncontrollably during the day. My extremities ache all the time. I have the symptoms of neuropathy. I never feel rested. I have acid reflux and I operate at about 20% of potential. I can't seem to acclimate to this thing. I've read some of the posts here. I've tried watching TV with it on, but soon after I lay down with it it just seems to keep me awake. On the nights when I've been able to log the most time with it I always feel worse than if I hadn't used it at all. I'm going back to the clinic this Thursday to talk to my doctor, but I'm exasperated. Thanks.

Xney · Post by **Xney** » Fri Oct 05, 2012 1:51 pm

Sorry to hear for your troubles. Do you know the particular #s from your sleep study, and what your machine is set to?

2kittymom · Post by **2kittymom** » Fri Oct 05, 2012 2:21 pm

It's a good thing you're going back to your clinic about this. Perhaps you need another sleep study, since you had surgery since getting the machine. Your pressures may have changed.

If you do get back to using your machine, myself and many others will tell you that in the beginning, often you are wide awake after starting the machine. It takes time for your brain to adjust to the mask and the machine. Once your brain accepts it as "normal," you should be able to fall asleep faster. It took me about 3 weeks. I'd lay awake for hours, but now am usually asleep in about 5 minutes.

Too many "newbies" hate the mask and machine, and many give up. Instead, they should look at it as a blessing that they were diagnosed and that there is treatment that will heal their bodies.

Good luck on your journey.

tekis · Post by **tekis** » Sat Oct 06, 2012 12:24 am

Thanks for the encouragement! 3 weeks? Okay. Does one just put it on and go the whole night? Or do a few hours at a time? Or is everyone different? Should I get back on sleeping pills to help get me thru it? I appreciate the responses thus far. "Good night..."

kteague · Post by **kteague** » Sat Oct 06, 2012 2:17 am

I would just like to suggest that it might not be the CPAP keeping you awake. Your study said your have RLS and alpha intrusions. When you visit the doc, ask if there's any chance these things are affecting your sleep. Also ask if you have Periodic Limb Movement Disorder (PLMD) along with the RLS.

Even though my CPAP was correcting my breathing when asleep, it couldn't take care of the other sleep disorders, one of which was limb movements. If you happen to have a limb movement issue (and that's a big "if" since you haven't said that is your diagnosis) it wouldn't be uncommon for limb movements to worsen after starting CPAP, through no fault of the CPAP. I think the first thing you need to know, based on data, is if your CPAP is therapeutic. If it is, I suggest you try to use it in spite of how you feel. Not sure if it's an option, but I think having a study with you using your prescribed pressure could prove valuable in seeing what else is going on. During titration studies, by they time they get up to a therapeutic pressure there probably isn't much sleep time left to see what else is going on while. Talk to you doctor about it. Tell them you want to make this work but that you're going to need their help.

Don't give up on this. Your case may be problematic for a bit, but persistence and insistence should serve you well.

MidnightOwl · Post by **MidnightOwl** » Sat Oct 06, 2012 3:02 am

kteague wrote: If you happen to have a limb movement issue (and that's a big "if" since you haven't said that is your diagnosis) it wouldn't be uncommon for limb movements to worsen after starting CPAP, through no fault of the CPAP.

Kathy,

Sorry to interrupt your very good advice but I know you've been dealing with this for a long time. Do you think cpap makes the limb movements worse or does it just unmask them?

How are you doing with them now?

Midnightowl

tekis · Post by **tekis** » Sat Oct 06, 2012 10:59 am

kteague wrote:I would just like to suggest that it might not be the CPAP keeping you awake. Your study said your have RLS and alpha intrusions. When you visit the doc, ask if there's any chance these things are affecting your sleep. Also ask if you have Periodic Limb Movement Disorder (PLMD) along with the RLS.

Even though my CPAP was correcting my breathing when asleep, it couldn't take care of the other sleep disorders, one of which was limb movements. If you happen to have a limb movement issue (and that's a big "if" since you haven't said that is your diagnosis) it wouldn't be uncommon for limb movements to worsen after starting CPAP, through no fault of the CPAP. I think the first thing you need to know, based on data, is if your CPAP is therapeutic. If it is, I suggest you try to use it in spite of how you feel. Not sure if it's an option, but I think having a study with you using your prescribed pressure could prove valuable in seeing what else is going on. During titration studies, by they time they get up to a therapeutic pressure there probably isn't much sleep time left to see what else is going on while. Talk to you doctor about it. Tell them you want to make this work but that you're going to need their help.

Don't give up on this. Your case may be problematic for a bit, but persistence and insistence should serve you well.

Thanks for the feedback. I'll mention it on Thursday. I'm going to print out this whole thread and bring it with me. What about sleep meds to get acclimated to the CPAP? I've read about some patients using them.

Duckdog · Post by **Duckdog** » Sat Oct 06, 2012 11:43 am

Boy, does all of this sound familiar. I'm waiting for the "good" to start as well. Hope it does soon for both of us.

kteague · Post by **kteague** » Sat Oct 06, 2012 12:54 pm

MidnightOwl wrote:
kteague wrote: If you happen to have a limb movement issue (and that's a big "if" since you haven't said that is your diagnosis) it wouldn't be uncommon for limb movements to worsen after starting CPAP, through no fault of the CPAP.
Kathy,

Sorry to interrupt your very good advice but I know you've been dealing with this for a long time. Do you think cpap makes the limb movements worse or does it just unmask them?

How are you doing with them now?

Midnightowl

No, CPAP doesn't make them worse. I said that they may worsen after starting CPAP. Thanks for pointing out that some may need clarification on the dynamics there. I was trying to not go into a lot of detail without a diagnosis of PLMD, but I certainly don't want to be misleading. Funny, but I was having misgivings about my post and I should have listened to my gut. For clarification, a person with both OSA and PLMD may find that treating either can allow for better sleep, thus allowing the other to more fully manifest. It is, as you say, an unmasking effect, not a cause. Good to see you Midnightowl! Since I'm not taking prescribed meds for my limb movements, I don't have the augmentation, and the TENS Unit is managing them pretty well. Not perfect, but so much better than in the days of my sleep video. Thanks for asking.

Julie · Post by **Julie** » Sat Oct 06, 2012 4:27 pm

To answer your question, the longer you can keep the mask and machine on - the point being to wear them any and every time you sleep, all the time you're asleep, the better off you'll be. After all, it's only room air, so nothing terribly serious is going on and not wearing it all night is counterproductive.

chunkyfrog · Post by **chunkyfrog** » Sat Oct 06, 2012 5:11 pm

Like a fire fighter, you have to wear the gear all the time you are fighting;
because when you take it off--you are no longer fighting.
It's a good fight; be a warrior!

tekis · Post by **tekis** » Sat Oct 06, 2012 5:12 pm

Duckdog wrote:Boy, does all of this sound familiar. I'm waiting for the "good" to start as well. Hope it does soon for both of us.

Dude, you lit a fire under me! I'm wearing the mask tonight. Period. Please give me some suggestions? (thanks to the others' encouragement too!)

1) I need some basic starting settings. Nobody has ever walked me thru using this thing. I will see my dr. on Thursday, but I want to start using it before then.
2) Should I try to procure a sleeping pill other than the Melatonin I've been taking? I've used Ambien, Lunesta, chloral hydrate, Valium, etc. all to good effect. Will it help with the "break-in" period?
3) I also have methadone for my RLS. I don't take it all the time, but it does help me sleep a bit more soundly. I just don't take it all the time because of it's side effects.
4) Should I wear it while watching TV? I'm willing to.
5) I'm grateful for this forum. I promise to share my experience and try and help the next person that needs it.

Tekis

carbonman · Post by **carbonman** » Sat Oct 06, 2012 6:08 pm

tekis, I have been a hose head for 4+yrs now.
It has given me my life back.
As I listen to your experience, I have the same reaction
I have to all newbies as they face cpap.

I would suggest that you need to change your perspective.

tekis wrote:I'm fatigued. I yawn uncontrollably during the day. My extremities ache all the time. I have the symptoms of neuropathy. I never feel rested. I have acid reflux and I operate at about 20% of potential.

These are your enemies.
This is the darkness that is consuming your life.

Cpap is the release from this darkness.
It is not the enemy.

Ask yourself some questions when you feel frustrated w/your cpap.
What difference will it make if I use this or not?
Why am I doing this?
What will the payoff be for my perseverance to make this work?
Is this more difficult than enduring the pain and fatigue?

How you answer these questions will determine what direction your life will go.

Thoughts become things....
choose the good ones.

We have all been down this road.
I'll see you on the road.

Pugsy · Post by **Pugsy** » Sat Oct 06, 2012 10:34 pm

Hi, Welcome to the forum.

Your profile mentions Remstar Plus machine.
Could you look at this thread and see if you can tell us exactly which machine you are using?
viewtopic.php?f=1&t=72302&p=665165#p665165
and tell us the model number off the bottom of the blower unit. Usually a 3 digit number with DS or REF preceding it.
The "Plus" cpap machines in the Respironics brand don't offer any data beyond hours of use.
No way to evaluate your therapy except "how you feel".
For the machines that offer full data there is software available that is free to help you.
Need to know for sure what machine you have though.

Julie · Post by **Julie** » Sun Oct 07, 2012 4:03 am

Tekis - Have you tried anything else for RLS besides methadone? It probably isn't the best thing if you have OSA and I'd talk to your doctor about it now that you're on Cpap.

Hello: I'm new and here is my story

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