Where is the common sense?

[Cannuck 1]

To the OP, ignore the post by Cannuk 1, it is completely wrong.

Your leak rate is fine.

Seeing you are full of wisdom what is the difference?

I suggest you do some reading on the forum, it's been explained hundreds of times.

Don't offer comments on things you don't know the answer to, it wastes everyone's time, yours in posting drek, someone else's time correcting you, and most of all, it wastes the time of the OP who's sent off on stupid wild goose chases.

Here, I'll start you out:
https://www.google.com/search?channel=f ... espironics

Well I see you are as feisty as you were 5 years ago, Well did some digging on the subject and you are as vague as Respironics are.

Philips-Respironics System One: There is no official "line in the sand" for flagging a Large Leak.
(Source: Encore Report Guide) Lots of System One user data posted on the forum indicates the Large Leak line for Total Leak Rate depends on whether the machine is a Series 50 (older) System One or a Series 60 (newer) System One. Lots of user data posted on the forum also indicates that the Large Leak line depends on the pressure used: People using less than 10 cm of pressure see Large Leaks being flagged much earlier than people using pressures greater than 10 cm. Here are some general estimated guidelines for where the undefined Philips Respironics Large Leak line is located:

Series 60 System One users may start to see Large Leaks being flagged when the Total Leak Rate reaches 60-70 L/min; if the prescribed pressure setting is below about 8cm, then Large Leaks may be flagged when the Total Leak Rate reaches 50-60 L/min in some circumstances.
Series 50 System One users may start to see Large Leaks being flagged when the Total Leak Rate reaches 80-90 L/min; if the prescribed pressure setting is below about 8cm, then Large Leaks may be flagged when the Total Leak Rate reaches 60 L/min in some circumstances.

Official Large Leaks for Philips Respironics System One machines are very difficult to determine with great accuracy in versions of SleepyHead prior to 0.9.6. In version 0.9.6, the Encore-defined Large Leaks are flagged by gray bars in the Events table and as a gray background in the Flow Rate curve. The Official Large Leaks for a System One will NOT be flagged directly on the SleepyHead Leak/Total Leak graph.

If you want to add a Redline to your Leak/Total Leak graphs in OSCAR, our advice is to look at your own Large Leak flags and figure out where they seem to start. If you don't seem to have very many Official Large Leak, then use the above guidelines as a decent enough starting guess for where your particular Redline should be drawn.
In order to adversely affect the efficacy of your CPAP therapy and the accuracy of the data recorded by your machine, leaks have to be both large enough and long enough. As we've just seen, "Large enough" is easily quantified by the manufacturers. But what is "long enough"?

ResMed is apparently the only major manufacturer that has a user-friendly tool for determining whether the official Large Leaks last long enough to compromise the CPAP therapy: The dreaded Mr. Red Frowny Face shows up on the short version of the Sleep Quality Report when Official (ResMed) Large Leaks make up at least 30% of the night.

Since the other manufacturers are "vague" when it comes to describing how long Large Leaks must last to adversely affect the CPAP therapy, we'll take that ResMed definition as a "working" definition:

[palerider]

Well I see you are as feisty as you were 5 years ago,

I'm just as sick and tired of people misleading new people as I ever was.

Well did some digging on the subject and you are as vague as Respironics are.

Large leak amounts vary with pressure.
Resmed's capability of calculating and reporting LL across various pressure may be protected by patent, so Respironics has to make do with just flagging it when the machine doesn't like what's going on.

Sorry (not sorry) if that's not "simple enough" for you.

[chunkyfrog]

Resmed vs Respironics---apples vs oranges.
Nothing is standardized--or even could be.
Everything is proprietary; nobody's going to share "intellectual property".
The best we can do is follow the advice of real people, who are on the business end of the mask.
The doctor's expertise stops at the end of our nose--the dealer may know more about rhe machinery,
but will only say what helps the dollars and cents going into his pocket.
Trust us--or not. I trust Palerider--he only shares his knowledge, for free.

[jnk...]

Personally, I would welcome any correction from either Pugsy or Palerider on anything I posted in this forum. And I would suggest everyone else posting here should be just as welcoming of such correction.

Hey. Just me.

[Miss Emerita]

I threw the cpap mask off as soon as I realized my heart was pounding out of my chest.

Your O2 levels throughout the night look just fine. We can certainly see the big increase in your pulse rate, but I don't see any precipitating event or any anomaly in your O2 levels that might be related to the elevated rate. Could you zoom in on the last five minutes before you removed your mask?

Except for the major increase there at the end, your pulse rate for the night looks pretty even, with scattered periods of small increases. Their timing suggests they might be related to REM sleep, though there's no way to know for sure one way or another.

[jnk...]

Dr. K seems to think that some with longstanding anxiety issues do better on ASV. I'm not sure I agree, but he always has interesting ideas.

"We looked at a group of about 50 insomnia patients or anxiety patients who had sleep breathing problems, and these people had failed everything. They couldn't use CPAP; they couldn't use auto-CPAP; they couldn't use BiLevel devices. They could use nothing but this one device that's been on the market a few years. It's called ASV, again - adaptive servo-ventilation - and it just has this incredibly comfortable way of helping a patient to breathe, which is different than the traditional CPAP device. And what we found was that these insomnia patients and these anxiety patients could use the ASV device. They could use it all night long, and they could actually get the benefit."

https://www.jhccc.org/poc/view_doc.php? ... c&id=39747

[1102TC]

I threw the cpap mask off as soon as I realized my heart was pounding out of my chest.

Your O2 levels throughout the night look just fine. We can certainly see the big increase in your pulse rate, but I don't see any precipitating event or any anomaly in your O2 levels that might be related to the elevated rate. Could you zoom in on the last five minutes before you removed your mask?

Except for the major increase there at the end, your pulse rate for the night looks pretty even, with scattered periods of small increases. Their timing suggests they might be related to REM sleep, though there's no way to know for sure one way or another.

Actually I have a med that makes my SPO2 drop to 83 and stay low. I chose not to post it though. I actually sleep very well with low SPO2 and good SPO2 usually indicates I am high anxiety. You will see my SPO2 drop as I recover. I think the Doctors all think I over exaggerate and don't take me serous as often these are random and 24 hr monitoring does not catch them. (lately they are everyday) Anyway I think we are dealing with a massive adrenaline rush of some kind. I don't know if it is CPAP related. I woke up at 17:12 and casually looked at my watch. By 17:13 I was positioning myself as I knew this one was hitting hard and quick as I could feel my heart pounding hard, accelerating and started "relaxation breathing techniques" that don't work. To those that never had one of these you become very week. At the end of this I was finally able to sit up and breath enough to be able to drink some water but still was unable to stand up. I usually can't even speak during one of these, just focus on the next breath and if I am doing it correctly. So this is my last sleep yesterday of about 2 hours and 1 hour of whatever caused the rush. I wish I would have had the mask on longer but it hard to transition off and on of it during these times. Thanks to everybody that helped. Any Ideas would be great although I now realize this is probably out of what this forum is about. I personally suspect that I may have an adrenaline producing tumor but my Doc with think I am just being nut when I say it. My appointment is today and had to wait 2 weeks for it. Don't know if I should try sleep or stay up as what is best so I am calm and able to speak at the appointment. The last snore is actually a burp. Rest easy everybody hopefully I will soon.

[ChicagoGranny]

Actually I have a med that makes my SPO2 drop to 83 and stay low.

Opiod? Cocaine?

[1102TC]

Actually I have a med that makes my SPO2 drop to 83 and stay low.

Opiod? Cocaine?

Long term use of doctor prescribed Klonopin. Only taken as prescribed, not abused. No drugs in my life at all ever. No alcohol or even soda in the past 8 years. I suspect also I could be dependent on it though going in and out of withdraw between dosages and this is what they call Benzo h3ll. I am frustrated at the doctor that recommended it to me and prescribed it at the full therapy dose for what was a very small problem at the time. I don't know other than I am very sleep deprived. They see that and think I am a junkie looking for drugs when I just want help. I had to go to the ER for IV because I am unable to eat or drink much. No offence to people that have recovered intended. When I try to get help they just throw pills at me that make me worse. The last ER visit did actually do a CT scan. It showed a cyst (apparently common) on my kidney. Made me wonder if it could be an adrenaline producing cyst (very uncommon) but they did not even mention it to me. I found out about it by checking my results and records online.

[chunkyfrog]

Actually I have a med that makes my SPO2 drop to 83 and stay low.

Opiod? Cocaine?

Harsh, Granny!

[Miss Emerita]

1102TC, thanks for posting the zoomed view for right before the episode. Unfortunately, all I really see is the change in flow rate that reflects your wake-up -- nothing that Oscar can capture indicating what precipitated it.

I have occasional supraventricular tachycardia, and I know how bad it feels when your heart-rate goes to 150 or (on one memorable occasion) over 200. One thing my doctor had me do was wear a holter-type monitor for 30 days. Has your doctor had you do that? If not, it's a thought.

Other questions to consider asking your doctor: could the cyst on your kidney be interfering with excretion of the products of the Klonopin? Could the Klonopin be causing the tachycardia, either via mini-withdrawals or via a paradoxical side effect? Could it be time to try stopping Klonopin, and if yes, how?

Good luck with this, and please let us know how the visit with the doctor goes.

[khauser]

Long term use of doctor prescribed Klonopin. Only taken as prescribed, not abused. No drugs in my life at all ever. No alcohol or even soda in the past 8 years. I suspect also I could be dependent on it though going in and out of withdraw between dosages and this is what they call Benzo h3ll. I am frustrated at the doctor that recommended it to me and prescribed it at the full therapy dose for what was a very small problem at the time. I don't know other than I am very sleep deprived. They see that and think I am a junkie looking for drugs when I just want help. I had to go to the ER for IV because I am unable to eat or drink much. No offence to people that have recovered intended. When I try to get help they just throw pills at me that make me worse. The last ER visit did actually do a CT scan. It showed a cyst (apparently common) on my kidney. Made me wonder if it could be an adrenaline producing cyst (very uncommon) but they did not even mention it to me. I found out about it by checking my results and records online.

Hi 1102TC ... I'm not positive but it sounds like you wish you were not using Klonopin (clonazepam) any more. I'm also obviously not aware of why it was originally prescribed.

If you want to stop it, and there's no medical necessity that can't be otherwise treated, talk to your doctor about consulting with a "Clinical Pharmacist". These are specially trained professionals that understand about medications, side effects, dependency, etc. They can make recommendations on how to taper off a medication, and recommend temporary drugs to handle the worse of the withdrawal symptoms.

I am a chronic pain sufferer that have been prescribed MS Contin (morphine) and oxycodone. I had 90mg MS Contin twice a day, and up to 20mg Oxycodone for breakthrough pain. The therapy was very useful and allowed me to be more active, but eventually the nature of the chronic pain changed and I realized that the use of narcotics was no longer that beneficial. I spoke with my doctor about it, and he consulted with the clinical pharmacist. My goal is to eventually stop narcotics completely ... I did not make it yet, but from 180mg MS Contin and up to 20mg Oxycodone daily I reduced my dosage to 30mg MS Contin daily (and no Oxycodone). At that point the older chronic pain symptoms began to reappear, so that's where I'm at today. That's a very significant reduction. I could not have done it without the assistance ... because I would definitely have cut back too fast.

My daughter happens to use clonazepam. In her particular case, she only needs it over a period of about a month, occurring every few months. She has a very rare disease called Stiff Person Syndrome. Every so often she has to have an infusion. We know when that is by the return of several symptoms (pain, muscle cramps (the stiff part) and severe anxiety). The clonazepam is for that last part. It barely helps, even after she titrates up to the full dose. After the infusion all 3 symptoms 'magically' vanish and she's able to stop most of her meds, and all of the clonazepam. This is all new (she's only had one infusion and just started symptoms again ... insurance makes it take a long time to get the infusion to happen <sigh>.

Anyway, I don't know the effects of suddenly stopping clonazepam, and I am sure it depends on both dosage and what it is used for. You MUST talk to your doctor first. If you don't think s/he is willing to work with you, you probably should consider another doctor. A quick search does show that clonazepam is often prescribed for a variety of insomnia problems,

This might end up being a "choose the least bothersome" problem. Drugs are often like that.

A lot of drugs have dependency issues. That's nothing to feel bad about. Blood pressure drugs, antidepressants, and many others can have unpleasant and/or dangerous side effects if just stopped after reaching therapeutic dosages. The body can 'fight' the drugs to some degree, and to taper off it has to learn that it isn't necessary to fight any more.

[1102TC]

Miss Emerita, 200 BPM, I can not imagine. When I was dehydrated though last week it was at a constant 150 for about 4 hours. I did not feel it though at all and I had no anxiety related to it. Still I understood that it was not a good thing lol.

Kauser, I want off that drug badly. But I also want to know 100% what the cause of this is. It scares me because if this is caused by dependence how much worse can it get if I withdraw? I self tapered years back to half a dose because my doctors don't know how to remove it properly but I never manged to go lower. They either told me to "just stop" or cut my script so quickly I became nonfunctional. I went in for some minor "seasonal depression" and had a huge bad reaction to the SSRI they gave me about 9 years ago. That was my first true knowledge of shear panic and anxiety, I never had it like that. Anyways hopefully they can find another root cause or find a bearable way to got me off. Whatever, I want to see whats behind being drug free. Every doctor looks at me crazy when I mention the Ashton manual.

[ChicagoGranny]

Long term use of doctor prescribed Klonopin.

How much are you taking and at what times of day? We have experience in my family with Klonopin.

[ChicagoGranny]

Actually I have a med that makes my SPO2 drop to 83 and stay low.

Opiod? Cocaine?

Harsh, Granny!

There's nothing harsh about those questions. If people are trying to help, it could be counterproductive not to know what drugs are being taken.