Re: Klonipin - I've been prescribed this med for Restless Legs.  When I read about sleep disorders, tho, I also read about Periodic Limb Movement, which is something else entirely.  I'm thinking from what I read that the RLS is what we experience while we are awake--getting the feeling that we have to move our legs.  The Periodic Limb Movement is what happens without our knowledge when we're asleep.  Hubby tells me that I also move my legs during sleep so I must have both.

Hope that helps a little.

Hi Struggling,

1.  If your husband is using a ResMed or Respironics FF mask, it is my personal experience and those of my supplier, that they may leak at pressures over 9 cmH2O.  A better mask for higer pressures might be a Fisher & Paykel Flexifit 431.  However, the Flexifit 431 comes down below the chin a little, so how well it would work for him would depend on the length of his beard.  If he opens his mouth with a nasal mask, other options are chin straps or taping his mouth.  You'll have to PM Rested Gal for the taping info.  Most of us are too afraid to go there.

2.  You need a definitive diagnosis about his thrashing legs.  I have RLS/PLMD (Periodic Limb Movement Disorder, what they call it when you are asleep) and what works for me is a low dose of Mirapex, an anti-Parkinson's drug.

3.  How much Klonopin is he taking?  I took 0.5 mg for anxiety, not my PLMD and it did not effect my CPAP use.  My sleep doc. confirmed the Mirapex was working during an annual sleep study.

4.  Is your husband using a CPAP or APAP?  It sounds as though he is using a CPAP.  I think Mike was referring to an experiment my doctor performed for me.  I was using an APAP, and during another annual sleep study (I've been at this a while) he did a split study.  The first half was with my APAP and it showed mutiple arousals due to the APAP algorthm erroneously reading a need for a pressure spike.  Then they switched me to a CPAP and the arousals were eliminated.

OK, ding dong, I've chimed in  

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Struggling Wife wrote:

My husband also started off with the nasal pillow type mask, but found he was too stuffy to have it be effective as well as he would not keep his mouth closed even with a chin strap.  He sounded like one of those inflatable bouncer things loosing air when he opened his mouth, which woke me up.

He is now using a full face mask, but has a beard, so he has the straps really tight to hold it in place.  

Also, about the leg spasms--I don't know if he has officially been diagnosed with restless leg syndrome or if it something else.  Until he started using the full face mask, his leg movements never woke me up, so it would seem that the leg movement is actually worse than better.

I think I will be calling the doctors office this week, even though they said they didn't want to hear from him for at least 2 weeks for this new medication to start working.......any other suggestions as to what EXACTLY I should be asking them?

Hi,

Having the straps very tight can (and usually does) create air leaks. This might account for the puffy eyes etc. It would also account for him not getting the full benefits of cpap (possibly). If he has RLS, it can be treated.

As well as contacting the doctor, which is a must do, you should also contact the DME supplier who supplied the equipment. THEY should be able to complete a proper mask fitting to ensure minimal air leaks. YOU will probably have to push them on this one. Your husband will have to help out here.

While on the subject of your husband, it might be time for a one on one talk. He needs to level with you, which I believe he is not. The Doctors appointments without a discussion with you are indicative of this (I have been guilty of this in the past). You will have to insist that you attend any more appointments and are kept informed. He will also have to be reminded that he is not the only one living in your house and that his attitude is having an adverse effect on everyones life.

He may not be fully aware of the ramifications of his condition and his doctor may have to spell these out to him, in your presence.

There are a lot of people here on YOUR side. Don't be afraid to show him some of the posts.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Dear Frustrated Wife and Others,

I'm sorry I didn't join this forum months ago.  I feel better knowing that my husband and I are not alone in this, but I also feel frustrated that so many people are so desparate for a good night's sleep.  The good night's sleep seems as close as a CPAP machine - yet at the same time it seems far, far away.

My husband answered negative to all the questions he was asked about RLM, and all sleep studies indicate his leg movements occur after his oxygen level dips when he stops breathing (both drs. say the leg kicking is part of the arousel when he remembers to breathe again).

I feel like the sleep studies my husband had provided lots of data about his condition, and two drs. agreed that he does not have RLS.  I'm confused why one dr. prescribed Mirapex (which my husband did not take) and another prescribed Ambien (which he seems to now need to sleep).  If the machine will fix the disorder, why don't the drs. help the patient get the right mask, etc.?  Why do they quickly write an RX for symptoms?

And why do the DMEs act like the masks are 'one size fits all.'  The dr. told us there were over 40 masks to choose from, yet the DME brought 'the one most people use.'  (I'm not sure how they define 'most people.')

Thanks for listening.  I needed to vent and really appreciate all the feedback I have read on this site.

My husband is going to call the dr. this week to see how much benadryl he can take (and get off the Ambien).

Anna

The DME provider we have used is an actual c-pap user himself, so at least he understands what is going on.  I think that in our case, and probably for a lot of people, it is easy to assume that when you are given the mask to use it should be the one that works--we are trusting people to know what they are doing.

I think that my husband, like a lot of people, take what the 'professionals' tell us and don't feel qualified to question the things we have been told.  

I believe I will be making a lot of phone calls this week.

Anna:

Quote:

My husband answered negative to all the questions he was asked about RLM, and all sleep studies indicate his leg movements occur after his oxygen level dips when he stops breathing (both drs. say the leg kicking is part of the arousel when he remembers to breathe again).

I feel like the sleep studies my husband had provided lots of data about his condition, and two drs. agreed that he does not have RLS.  I'm confused why one dr. prescribed Mirapex (which my husband did not take) and another prescribed Ambien (which he seems to now need to sleep).  If the machine will fix the disorder, why don't the drs. help the patient get the right mask, etc.?  Why do they quickly write an RX for symptoms?

Restless Leg Syndrome (RLS) is the obnxious feeling you get in your legs, usually in the evening, that nearly forces to get up and walk around to get rid of it.  It is a waking phenomenon.  Mirapex is quite effective in treating RLS.

Periodic Limb Movement Syndrome (PLMS) is the rhythmic movement of the legs, about every 20-40 seconds, at least 4 in a row, but may occur hundreds of times per night.  They have NOTHING to do with sleep apnea.  It is a sleep phenomenon, and Mirapex works well for this, too.  However, PLMS is only treated when it causes arousals.

Limb Movements (LMs) tend to occur as part of an arousal, as in the case of the termination of a respiratory event.  If you fix the respiratory event, you fix the LM.  However, you could eat a bowl of Mirapex, and the LMs would still be there if you don't fix the respiratory events.

Scoring PLMs following respiratory events is incorrect.  If anything, they should be called LMs.  We do not score them, we simply include them as part of the arousal.  This also avoids the confusion that you have noted.

If PLMs disappear after the CPAP titration, then they weren't PLMs to begin with.  PLMs often get worse during CPAP, as continuous sleep allows them to come to full fruition.

Hope this makes things a little clearer.
sleepydave

Dave,

My husband had his limb movements tracked during the sleep studies, and both drs. showed me the graphs that indicated when the titration was at the level that stopped the apnea, limb movement ceased.  Although his disorder seems like what I've read about PLMD, the drs. said it is related to the apnea.  I think these drs. have to fix one thing at a time - and get it right - before they start giving drugs for other disorders.

I agree that having a DME provider who can empathize with the patient is helpful.  Of course, we all have to work within our insurance restrictions and hope for a DME who is understanding.  It amazes me that the insurance co. will pay for drugs, but not a 'new' mask (at least that's what the DMEs keep telling us).  I'm not sure if these nasal pillows are the right thing for my husband or not.  (He started with a nasal mask, went to a full face mask, and now the nasal pillows.)  It seems like the mouth breathers have the bigger problem getting the right mask.

Reading the postings on this forum are much more helpful than the information we have received from the drs. office.  I'm looking forward to my husband getting off Ambien and perhaps using benedryl.  He's going to call the dr. this week.

I know my husband gets tired of me asking 'how did you sleep?', but I keep praying that one night this thing will work, and he'll be feeling great like some of the other folks who have posted on this site.

Anna

Hi Frustrated Wife and Norissa,

Hope things work out well for your respective husbands' treatment.  If you all will register on this forum, you will be able to receive PM's (private messages) that might offer additional suggestions.

Best of luck to you both - and to your husbands.

How do you register?  I did not/am not seeing where to do this.  Thanks

rested gal wrote:

Hi Frustrated Wife and Norissa,

Hope things work out well for your respective husbands' treatment.  If you all will register on this forum, you will be able to receive PM's (private messages) that might offer additional suggestions.

Best of luck to you both - and to your husbands.

You can register via the button at the top of the page.  Unde Apnea Support Forum, there are 5 items:
  ASAA  *  Register  *  Search  *  Help  *  Log in

Just click on Register, and you'll need to create a username and password.

Of course, forgot to log in myself, so will show as guest - oops!

Good luck,
Kikisue

I have now become a registred user of this site--obviously if you read through these posts, I have gone from the struggling wife to the
'frustrated wife'  which is probably what I was actually feeling when I made the initial post, but thought 'struggling' was a nicer way to put it.  I really do appreciate all of the advice and words of wisdom you all have shared---THANK YOU for supporting a complete stranger.