Trying to teach you to be patient, of course...
O.
A couple of questions...AHI and RLS
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
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sir_cumference
- Posts: 240
- Joined: Wed Jun 29, 2005 10:47 am
- Location: UK
Thank you for that input RG - I think that what you said makes perfect sense, the issue is mask comfort not the holy grail of a lower AHI! AHI's are affected by more than our own physical condition and may well not really represent how we are doing. The issue is subjective - how do I feel? - is this working? - And if not, what should I do next?
As for changing pressures, I also agree that to change it because the AHI changes would be fooling. I would only advise looking at the pressure and if you need to change it if you are not feeling any benefits from the level you now have it set at. Once again its subjective - asking yourself, 'Is this working?' The only caveat I would add is that you probably should give the pressure you have been set a reasonably good road test before demanding a change unless it is making your symptoms worse of course (which I have experienced).
And as for kids, I must really need patience very very badly - I have 3 teens!
Talk about needing to get a life!
sir_cumference
As for changing pressures, I also agree that to change it because the AHI changes would be fooling. I would only advise looking at the pressure and if you need to change it if you are not feeling any benefits from the level you now have it set at. Once again its subjective - asking yourself, 'Is this working?' The only caveat I would add is that you probably should give the pressure you have been set a reasonably good road test before demanding a change unless it is making your symptoms worse of course (which I have experienced).
And as for kids, I must really need patience very very badly - I have 3 teens!
Talk about needing to get a life!
sir_cumference
sir_cumference...you say you have 3 that are teens all at once....no wonder you have sleep problems.... I can't imagine having 3 like the one I have now. Like I said I only have the 1 but already went through 1 and still have another one coming up. All I see is 15 years of having at least one teen around. Can I make it... But I do love them dearly.
*** Linda ***
[quote="sir_cumference"] The only caveat I would add is that you probably should give the pressure you have been set a reasonably good road test before demanding a change unless it is making your symptoms worse of course (which I have experienced). [quote]
Sir_C...What do you consider a reasonable amount of time? I think I've finally found a good mask (for me...Activa) and have slept 3 nights with the mask on all night. Unfortunately, I'm still exhausted and very fuzzy headed. I know I can't expect a miracle after just 3 days but I don't like feeling as bad, if not worse, than before I started using the mask. I appreciate your opinion!
thank...Amy
Sir_C...What do you consider a reasonable amount of time? I think I've finally found a good mask (for me...Activa) and have slept 3 nights with the mask on all night. Unfortunately, I'm still exhausted and very fuzzy headed. I know I can't expect a miracle after just 3 days but I don't like feeling as bad, if not worse, than before I started using the mask. I appreciate your opinion!
thank...Amy
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sir_cumference
- Posts: 240
- Joined: Wed Jun 29, 2005 10:47 am
- Location: UK
My opinion ! Oh dear, I hope I don't lead you astray!!! Funny that when my opinion isn't asked for I feel fine about giving it, but now that your asking for it!!! I feel worried! (Don't take me too seriously)
OK, I think my first question would be about your titration. Did you do that with an APAP? And, if so, how did you feel in comparison to how you are feeling on CPAP. The reason I ask is that in my own experience, I found APAP gave me immediate improvement - very noticeable even after one night.
If you did notice a real difference when you titrated on APAP, then it would seem that your OSA is very reactive to treatment and thus I would advise you think about a pressure change soon. However, if you didn't really notice much of a difference during titration, then I would hang on for a couple of weeks and start to make a daily diary with a score-card of 1 - 10 for how tired you feel each day, how exhausted you wake up in the morning, if you need to take extra rests during the day, if you hit extra sleepy stages in conversations etc.. It is a little tedious, but if you keep a diary, with your first day being say 7 and then you can get worse (down to 10) and better (up to 1). This way, you will be able to see for yourself day by day if there are any (even minor) improvements. Then, if there are no improvements after 2 weeks, you can be confident that trying a slight increase in pressure is worth trying.
If you are not very sensitive as I mention above, I would strongly advise you to do the diary I'm talking about, because you must have some real evidence that nothing is changing, or that there is a positive yet slow move forwards. And, if you do have improvement, keep at that level - don't change, but also keep with the diary. It could be that you are just slow at responding to treatment - we are all different.
I have read of some who think nothing is happening until suddenly after 3 months they realise that they are a lot better. The purpose of the diary is to get the evidence of improvement or regression much quicker.
I hope that this is good advice. I am sure that if anyone else thinks it wrong they will tell you.
sir_cumference
OK, I think my first question would be about your titration. Did you do that with an APAP? And, if so, how did you feel in comparison to how you are feeling on CPAP. The reason I ask is that in my own experience, I found APAP gave me immediate improvement - very noticeable even after one night.
If you did notice a real difference when you titrated on APAP, then it would seem that your OSA is very reactive to treatment and thus I would advise you think about a pressure change soon. However, if you didn't really notice much of a difference during titration, then I would hang on for a couple of weeks and start to make a daily diary with a score-card of 1 - 10 for how tired you feel each day, how exhausted you wake up in the morning, if you need to take extra rests during the day, if you hit extra sleepy stages in conversations etc.. It is a little tedious, but if you keep a diary, with your first day being say 7 and then you can get worse (down to 10) and better (up to 1). This way, you will be able to see for yourself day by day if there are any (even minor) improvements. Then, if there are no improvements after 2 weeks, you can be confident that trying a slight increase in pressure is worth trying.
If you are not very sensitive as I mention above, I would strongly advise you to do the diary I'm talking about, because you must have some real evidence that nothing is changing, or that there is a positive yet slow move forwards. And, if you do have improvement, keep at that level - don't change, but also keep with the diary. It could be that you are just slow at responding to treatment - we are all different.
I have read of some who think nothing is happening until suddenly after 3 months they realise that they are a lot better. The purpose of the diary is to get the evidence of improvement or regression much quicker.
I hope that this is good advice. I am sure that if anyone else thinks it wrong they will tell you.
sir_cumference
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sir_cumference
- Posts: 240
- Joined: Wed Jun 29, 2005 10:47 am
- Location: UK
Dear lindas88
I think we thought that having them all close together would avoid what you're going through now - but the downside is that they're all teenagers together (16, 15 and 13 at the moment - all male). Thankfully they all seem to get on OK and we only have another 7 years to go till they're all out the other end!!
But it can be a little ... difficult At times!!
sir_cumference
I think we thought that having them all close together would avoid what you're going through now - but the downside is that they're all teenagers together (16, 15 and 13 at the moment - all male). Thankfully they all seem to get on OK and we only have another 7 years to go till they're all out the other end!!
But it can be a little ... difficult At times!!
sir_cumference
Sir_C: I was titrated during a sleep study with a CPAP. I now have a CPAP at home that I've been using for about 3 weeks. My pressure is set at 9. I've noticed that my airway seems to be staying open, especially if I'm on my back. I tried to make myself snore when using the CPAP and I couldn't do it so I think this is a good setting for me.
One thing that has bothered me, and I wondered if this has happened to anybody else, is that there are times during the day when I am fully awake and my airway gets cut off. I think I must be relaxing my tongue or something because all of a sudden, my airway gets blocked and I sort of make a snore noise. It scares me to have that happen when I'm awake. I'm really hoping that I can get rid of some of my weight and then see if I get better. In the meantime, I'll keep plodding along.
Thanks! Amy
One thing that has bothered me, and I wondered if this has happened to anybody else, is that there are times during the day when I am fully awake and my airway gets cut off. I think I must be relaxing my tongue or something because all of a sudden, my airway gets blocked and I sort of make a snore noise. It scares me to have that happen when I'm awake. I'm really hoping that I can get rid of some of my weight and then see if I get better. In the meantime, I'll keep plodding along.
Thanks! Amy
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sir_cumference
- Posts: 240
- Joined: Wed Jun 29, 2005 10:47 am
- Location: UK
Dear Amy
I have noticed that I am more likely to snort during the day - but I think it is a passing thing - I wouldn't expect that to last to long. However, can I suggest you ask that question as a new thread on this site, I think you might get some interesting answers!
The thing about CPAP vs APAP is that your CPAP will be at 9 regardless. I believe that CPAP is generally set at 95% of your max, which means that only 95% of your problem is being addressed! For me that was not suitable because (as I've said before) I am very sensitive to symptoms. The advantage of APAP being that if you need 9.8 or 10.2, as long as its set properly you will get what you need. And, if you only need 6, you aren't pumped up to 9!
Why not investigate hiring a machine for a while? Or, you could even put a thread on the site asking if someone will lend you one for a while? It may be worth a try as quite a few people have more than one APAP! I live in the UK and only have the one, otherwise I would lend you it to try!
Try the diary I mentioned so that you can have some idea if you're improving or not. And if not, then up the pressure by 1 cm - I guess that in theory that should get you 100%.
However, I noticed that on APAP, there have been times when it has needed to go to 9.6, when my 95% was supposed to only be 7.6!!!! So even if I'd gone to 9, it still wouldn't have met my needs at that time - later it returned to a better figure, but it is up and down on a day by day basis. Having a cold for example can mean you need a higher pressure during that time.
That's why I say APAP RULES in the world of the the CPAP!
sir_cumference
I have noticed that I am more likely to snort during the day - but I think it is a passing thing - I wouldn't expect that to last to long. However, can I suggest you ask that question as a new thread on this site, I think you might get some interesting answers!
The thing about CPAP vs APAP is that your CPAP will be at 9 regardless. I believe that CPAP is generally set at 95% of your max, which means that only 95% of your problem is being addressed! For me that was not suitable because (as I've said before) I am very sensitive to symptoms. The advantage of APAP being that if you need 9.8 or 10.2, as long as its set properly you will get what you need. And, if you only need 6, you aren't pumped up to 9!
Why not investigate hiring a machine for a while? Or, you could even put a thread on the site asking if someone will lend you one for a while? It may be worth a try as quite a few people have more than one APAP! I live in the UK and only have the one, otherwise I would lend you it to try!
Try the diary I mentioned so that you can have some idea if you're improving or not. And if not, then up the pressure by 1 cm - I guess that in theory that should get you 100%.
However, I noticed that on APAP, there have been times when it has needed to go to 9.6, when my 95% was supposed to only be 7.6!!!! So even if I'd gone to 9, it still wouldn't have met my needs at that time - later it returned to a better figure, but it is up and down on a day by day basis. Having a cold for example can mean you need a higher pressure during that time.
That's why I say APAP RULES in the world of the the CPAP!
sir_cumference
Re: A couple of questions...AHI and RLS
Amy, I have restless leg syndrome and periodic limb movements during sleep for which I take .5 mg of Mirapex each night. Mirapex in such low doses -- much lower than has been used to treat Parkinsons -- seems pretty innocuous: I've never noticed any side effects at that dose.I really don't want to take any more medication...I take enough already. So, does anybody else out there move their legs too much. Are you taking medication for it? Also, any opinions out there on whether I should be doing CPAP with an AHI of 5.5.
Twitchy legs can really decrease sleep quality by causing frequent micro-arousals.
As for CPAP treatment despite low AHI: You might have some degree of upper airway resistance syndrome that does not show up in the AHI figure. And that sometimes can be alleviated with CPAP. Very few sleep labs have equipment for definitive UARS diagnosis, so sometimes if it suspected, a person with a relatively low AHI may receive a trial of CPAP treatment.
Started CPAP on 7/1/2005
Mild apnea
Plus upper airway resistance syndrome with severe alpha intrusion
Mild apnea
Plus upper airway resistance syndrome with severe alpha intrusion
AHI and RLS Questions
Hi. First, about the 5.5 - I'm with those advocating a trial on an apap. I was titrated and set at a cpap pressure of 10. After several miserable months, I requested an apap machine. Wasn't eligible thru insurance, but insisted doc do something besides more sleep studies, as I no longer have insurance. He reluctantly agreed to a 2 week trial on an apap. Turns out my pressure almost stays between 11-11.9 so for all these months I was not at a therapeutic level. I am suspect of one nite in a clinic being fully representative of my normal sleep variances from nite to nite. If you are still symptomatic, you need to find out why. Check your study results for things like duration of episodes and O2 levels. A few bad ones can be as problematic as lots of minor episodes.
About the limb movements - your study did use the word periodic, right? There's a difference between LMs and PLMs on a study, and a difference between a diagnosis of RLS and PLMD. I have both, and they were worse on my sleep than the apnea. I too take Mirapex. Doesn't give me a full nite, but helps for a few hours. The reason your doc was basing taking meds on your symptoms is that most can sleep thru mild movements, but your study should have shown all that. If you'll videotape yourself sleeping without medication, you'll have a better idea what you're up against.
Aggressively pursue finding solutions to your daytime sleepiness. Life is passing you by, and maybe worse if your sleepiness is behind the wheel.
Kathy
About the limb movements - your study did use the word periodic, right? There's a difference between LMs and PLMs on a study, and a difference between a diagnosis of RLS and PLMD. I have both, and they were worse on my sleep than the apnea. I too take Mirapex. Doesn't give me a full nite, but helps for a few hours. The reason your doc was basing taking meds on your symptoms is that most can sleep thru mild movements, but your study should have shown all that. If you'll videotape yourself sleeping without medication, you'll have a better idea what you're up against.
Aggressively pursue finding solutions to your daytime sleepiness. Life is passing you by, and maybe worse if your sleepiness is behind the wheel.
Kathy
_________________
| Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions |
Wow, the last 2 posters said alot of what I was going to say! I have an AHI of 17 so that in itself is a problem. But my main issue is PLM. (And I was going to say that it is different than RLS.) They couldn't say for sure if my PLM's of 191 and an index for PLM of 34.9 per hour were because of the apnea but the cpap stopped all of it!! I had 3 apneas, 90 hypopneas, 44 spontaneous arousals, 191 limb movements for a total of arousals of 335 and an arousal index of 61.3 per hour. THAT IS EVERY MINUTE!! That is NOT sleeping! on the cpap I had nothing. My sleep index was bad because I didn't sleep alot...but when i slept I didn't have the arousals, limb movements OR apneas. Interestingly...my resperations were 20-22 without cpap and 10-12 with the cpap.
A doc friend, not my doc, said always to try cpap first, as the drugs for RLS can be bad. But not all UARS or PLM respond to cpap.
I only have a pressure of 5 and have been on cpa for 3 months. It has changed my life TOTALLY. I was so sick physically, and in so much pain, also associated with UARS. And we must remember that apnea , rls, uars and all are just a few of the many sleep disordered breathing issues and this is a relativley new area of medicine.
So my 2 cents is go for the cpap. It is sure worth a try and in my case was a cure!
PS... I have 5 kids..27, 25, 17, 13 and 11. (yes, from my one and only marriage! Some assume 2 marriages because of the age spread!) Also have 4 grandkids, 6, 4, 4, and 2yrs. No matter how you do it they are the best and worst of life! But I couldn't possibly live without anyone of them! You at least have them all in the same phase at once, we had diapers, daycamp, dating and driving all going on at once!! Now that the last are teens, they say we are not up on what teens TODAY are and shouldn't treat them like their older siblings were treated at the teen phase! They always seem to know more!!!
A doc friend, not my doc, said always to try cpap first, as the drugs for RLS can be bad. But not all UARS or PLM respond to cpap.
I only have a pressure of 5 and have been on cpa for 3 months. It has changed my life TOTALLY. I was so sick physically, and in so much pain, also associated with UARS. And we must remember that apnea , rls, uars and all are just a few of the many sleep disordered breathing issues and this is a relativley new area of medicine.
So my 2 cents is go for the cpap. It is sure worth a try and in my case was a cure!
PS... I have 5 kids..27, 25, 17, 13 and 11. (yes, from my one and only marriage! Some assume 2 marriages because of the age spread!) Also have 4 grandkids, 6, 4, 4, and 2yrs. No matter how you do it they are the best and worst of life! But I couldn't possibly live without anyone of them! You at least have them all in the same phase at once, we had diapers, daycamp, dating and driving all going on at once!! Now that the last are teens, they say we are not up on what teens TODAY are and shouldn't treat them like their older siblings were treated at the teen phase! They always seem to know more!!!