Titration followup

[jskinner]

I had my CPAP titration study on July 1 and today I had my follow up appointment with the sleep doctor. I had assembled a long list of questions to talk to the doctor. As it turns out the main purpose of the visit was for him to sign off on the paperwork necessary for the government to pick up 75% of the CPAP costs. (And consequently he only had scheduled about 5 minutes for me)

I got to ask him 1 or 2 questions but he seemed largely uninterested. I asked him about what I could to to lower my AHI since I still average between 10-14. His response was that my average was lot better than the 55.2 that I originally had. I asked him if maybe I should try an autoPAP to see if I could improve the numbers he said he didn't think it was worth it but that I could talk to my DME if I wanted to. He was uninterested in the fact that I am still tired most of the time. He then bid me well and told me to rebook a sleep study in about a years time. I was frustrated that he seem so uninterested and that I left with most of my questions unanswered.

So I then headed over to my DME and asked about an AutoPAP. I have been dealing with two different people at the DME which has made a vit confusing at times. When I brought up an AutoPAP the lady said 'oh we could have upgrade you to an Auto when we switched you from the Basic to the Pro' She claimed that she had told me this. I assured her that she had not (and have emails to prove it) but decided to not argue the point since she seemed very instant that she did. I asked about price difference and she said there was no difference for me between the Auto and the Pro. She then claimed that since I was at such a low pressure (currently 8 ) that an Auto would not be useful (she had made the same claim that it would not be helpful about C-Flex which in fact made a big difference for me) Anyway in the end she offered me a week trial on an Auto although its an older model. I won't be able to try it until she gets oe back in a week or so.

Hopefully trialing an Auto will allow me to find the right pressure more easily. After the trial I will attempt convince them to allow me to upgrade. I don't understand why we have to push so hard for these things.

Over the past few weeks I have slowly increased my pressure from 6 up to 8 and then even up to 9 last night. My AHI has dropped from about 12-14 to about 10 on average. One night last week I even had a 5 (and felt the best I had in a long while) and then last night I had a 4.5!

I'm getting a bit tried of monitoring and tweaking. I'm assuming that with an Auto this process is a bit easier since you can set a range and have the machine do some of the work?

I also notice that on strait CPAP that my numbers fluctuate quite a bit from night to night (+/- 5 AHI). While some variation is bound to happen I would think that with an Auto numbers might change less dramatically since the machine can respond to nightly changes?

Anyway I think I have made some improvement regardless of the medical professions lack of help. I am somewhat frustrated that I haven't got more help from drs but very very thank full that I had this forum to guide me along.

[rested gal]

I got to ask him 1 or 2 questions but he seemed largely uninterested.

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He was uninterested in the fact that I am still tired most of the time.

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I was frustrated that he seem so uninterested and that I left with most of my questions unanswered.

Sounds like sleep medicine is just a sideline cash cow to him. Too bad for some of his OSA patients.

Good for you that you made your way to the message board and have taken up the reins of your own treatment!!

[Snoredog]

Look on the bright side,

he could have been your Neurologist and you were there to see him for TIA symptoms.

you are better off taking control of your own disorder anyway. Post the Daily Report of the night that is giving you problem with high AHI and we may be able to point you in the right direction on what to look at.

Generally,

If your OA indice is higher than 2.0 for a night/session I would consider a slight pressure increase (as long as you don't have any CA or MA's noted on your PSG). If you can lower that OA indice the HI indices will also drop. If reports show a lot of FL's (Flow limitations), then that can mean your Min. pressure is too low, mainly with autopaps. But with the Pro you shouldn't have that unless you are maybe using Ramp with a low starting pressure, in which case the FL's would show up during the Ramp time (but not positive if it even records data until after the ramp timer expires).

If you have any CA or MA's noted on your PSG, be careful increasing pressure even by 1cm (PSG report should state at what pressure centrals were seen then you want to stay below that pressure).

High AHI: If your AHI indice is high look at the OA portion of that AHI (AHI is the SUM of both OA and HI). If OA portion is low (2.0 or less) then Hypopnea is the cause, if CA's were seen then a lot of that AHI score can be derived from incorrectly scored events (i.e. machine recorded a central event as obstructive).

I've only gotten 1 nights use from my new M series Auto, the firmware appears to be quite different from the classic Remstar Auto (only 4-5 months old). I believe the M's firmware level 3.06 is what I got in this M auto. What I have noticed already is it appears Respironics may have turned down the sensitivity to snore and improved NR (non-response or central event) logging. As you know, data logging is generated off of function hooks so reports should give you a pretty good idea how the machine is functioning.

I'll try and post an example of what can happen with too much pressure and how it can become a mis-scored event. If you are using a Pro, try loading Derek's MyEnore and pull it up after you have dumped your card data, make sure you set up Derek's panel with correct SQL log-in information so it can access the SQL data. Derek's MyEncore is just another front end to accessing the database. I always have EncorePro running in the background with using Derek's software. You can also write your own front end to the database, there was a web-based front end from Microsoft beginning I believe with SQL 7, should also be there with later versions.

[jskinner]

he could have been your Neurologist and you were there to see him for TIA symptoms.

I guess I shouldn't tell you about how 2 weeks before I got CPAP treatment I woke up with numbness, tingling, and weakness in my right limbs. It was so bad that it affected my walking a week or so. Slowly over the last few months its almost gone. Went to my GP about 6 times since it really freaked me out. He eventually sent me to a Neurologist. Getting in took about 1.5 months and by the time I got there most symptoms where gone. The Neurologist did no tests other than simple movement tests and said maybe it was a pinched nerve. I'm pretty certain it was related to the untreated sleep apnea at the time but my GP seems to dismiss that idea...

Also been experiencing weird heart rhythms for about 6 months but haven't been able to find the root cause of that either... scares me.

Post the Daily Report of the night that is giving you problem with high AHI and we may be able to point you in the right direction on what to look at.

Here is my most recent data: http://james.istop.com/apnea/Oct13.pdf Unfortunatly even though I have data from Sept 7 EncorePro won't give me complience or Tread data back that far. (presumably since my card was changed once by my DME and and other time I deleted it by mistake ) As you can see I had my best night so far last night with the move to 9cm

If you are using a Pro, try loading Derek's MyEnore ... You can also write your own front end to the database, there was a web-based front end from Microsoft beginning I believe with SQL 7, should also be there with later versions.

Yeah I use MyEncore as much as I can. Unfortunately a large number of charts don't show up for me in MyEncore. Its a real same since it looks very useful. See viewtopic.php?t=14075

I've poked around in the database a bit with some SQL tools. Have considered starting to write a tool bit it would be a lot of work

[rested gal]

I'm not a doctor or anything in the health care field. Looking at the link just to the Encore Pro data you posted, it seems to me that you need to be using more pressure and that leaks are interfering quite a bit with your treatment. Just my 2 cents. (Perhaps 2 cm's more pressure...? )

[jskinner]

I'm not a doctor or anything in the health care field. Looking at the link just to the Encore Pro data you posted, it seems to me that you need to be using more pressure and that leaks are interfering quite a bit with your treatment. Just my 2 cents. (Perhaps 2 cm's more pressure...? )

Most nights I get a leak rate of 36-40. My mask is rated at 32 at a pressure of 9. Most nights now I don't have large leak values on the charts (since your recommendation about attaching the tube above headboard) I seem to just have a couple of bad nights in that posted data set. What percentage above mask rate is acceptable/normal?

I definitely will continue to slowly raise the pressure now that I have the mouth leaks under control (again thanks you and some 3M tape )

[Snoredog]

jskinner wrote:

I guess I shouldn't tell you about how 2 weeks before I got CPAP treatment I woke up with numbness, tingling, and weakness in my right limbs. It was so bad that it affected my walking a week or so. Slowly over the last few months its almost gone. Went to my GP about 6 times since it really freaked me out. He eventually sent me to a Neurologist. Getting in took about 1.5 months and by the time I got there most symptoms where gone. The Neurologist did no tests other than simple movement tests and said maybe it was a pinched nerve. I'm pretty certain it was related to the untreated sleep apnea at the time but my GP seems to dismiss that idea...

Also been experiencing weird heart rhythms for about 6 months but haven't been able to find the root cause of that either... scares me.

I tell you what from my own experience; doctors can be wrong especially Neurologists. I was under the care of the Neurologist for more than 6 months, I'd wake up for work take a shower then pull myself down the stairs with only one arm and leg as the other side had no motor control. I later learned that was a TIA, before cpap, I used to have one of those once a week minimum (for 6 months). Neuro didn't put me on Plavix, aspirin or anything. Then one morning I got up took a shower one hit as I was shampooing my hair, it took me right to the bottom of the shower, couldn't talk, couldn't turn off the water, couldn't yell for my kids who were just downstairs (Help! I've fallen and cannot get up was appropriate). After about 15-20 minutes I started regaining motor control where I could turn off the water, then I crawled out of the shower got on some shorts and crawled to the stairs where I was finally able to make a noise where my oldest daughter heard me. She took me to the ER (she was a medical student then) and this was what they seen on the CT scan (this is a MRI but it looks very similar).

this is your brain on untreated OSA:


That is a lacunar infarct (stroke) to my Basal Ganglia, the Basal Ganglia acts as a main communications center to other parts of the brain. My stroke was on the right side of the brain which impacts the left side of the body. Strokes to the Right hemisphere are usually less severe than ones to the Left Hemisphere which impacts the right side of the body (i.e. YOU). The left hemisphere strokes are more severe because that side of the brain controls your speech, breathing and other critical functions. Do NOT ignore those TIA's, do NOT take your doctor's advice at face value, get a 2nd opinion, the only life you have to save is yours.

And don't let them brush off those symptoms as migraines or something else, because they can easily be wrong (looking at your EncorePro reports), I know they are WRONG.

Looking at your picture, you look to be in your early 40's and probably 180lbs. or less, young and in good shape?

When that picture above was taken I was 45, 6'1" and weighed 177lbs (5 yrs ago). I was telling them about the loss of motor control, many doctors responded I didn't fit the mold, every doctor I seen was friggin WRONG. I even went to UCSF Neurology and was seen by the top neuro Professors there. The Student Neuro I had seen has since gone on and written several articles published in the Journal of Medicine (he was sharp).

I'm sorry, but when a patient is seen demonstrating symptoms of TIA/stroke standard procedure is to at least do a CT scan with contrast to rule out any stroke. A TIA can last 10 minutes, a day, a week or a month, it IS nearly always followed by a stroke (usually within 6 weeks). If CT scan becomes suspect then a follow-up MRI is performed.

80% of all strokes take place from the time you wake up and before 12PM noon. No reason why but the theory is your brain is in a hypoxic condition all night long deprived of oxygen, you wake up it says I didn't get oxygen last night so blood vessels expand to increase blood flow to the brain (also can be cause of migraines) when this happens any clot left from thick or sluggish blood rushes to the brain, if it lands in one of your smaller lenticulostriate arteries and blocks it, you end up with a divot like I got above (circled in crayon). That brainfart is about the size of your thumb. Luckily I have no major physical impairment from it.

Check with your doctor, but I'd be taking a daily 325mg aspirin each and every day just like a vitamin. I would also look into a SPO Pulse Oximeter to record your SAO2 levels at night, rent or borrow one.

Do you smoke? If so you have to stop ASAP. the reason is all night long your OSA is depriving your brain of much needed oxygen leading to a hypoxic condition, you get up smoke, drink coffee read paper, perfect conditions for a stroke. The nicotine from the smokes and caffeine from coffee both restrict blood vessel diameters in the brain (making them smaller). Some of the brain's blood vessels are already so tiny (like the lenticulostriate arteries of the Middle Cerebral Artery) that a single red blood cell can have difficulty traversing them. I smoked for 30 years.

[byront]

James - sounds like me, your too kind and polite to these creeps, and if you don't get in their face you will be the one that suffers the consequences. Back when I was young and wild I suffered a compound fracture of my left femur. My bone dr. decided he would save the hospital some money by not ordering in the needed traction equipment. Instead he broke off the end of a broom handle and mounted it across the heel of a full-length cast he applied (toes to hip). He then took surgical tubing and tied it off to the end of the bed. My leg healed together slightly crooked (toe out) as a result, and the offshoot of that being torn cartilages from contantly catching the toe of that foot. They carved that out and I have been bone on bone for the past 30 years, and am now painfully dealing with that also. While my leg was strapped to the end of the bed, healing crookedly, they started weaning me off of the pain shots. I repeatedly told both the nurses and the doctors that I was still very much in pain - but it was no longer in my thigh, it was in my heal. I was COMPLETELY ignored and clearly treated like I didn't know what I was talking about! By not getting in their faces and forcing the issue, I was the one who once again suffered as a result. When they changed the cast they found that the broom handle had worn a gapping hole in my heal about the size of a silver dollar that narrowed down to the size of a 50 cent piece that was bare tendon! Approximately a third of my heel was gone. It took a long, long time for this to heal. I could go on an on about the crap he put me through with the knee problems, that unrealized by me at the time were the result of my misaligned leg - this went on for years. My being a polite young kid, and the other doctors and nurses touting this guy as being the best thing to come along since ice cream, assumed that he knew what he was doing.

Yet another event happened in San Francisco when I went to an ENT to try and find out what was causing my ear infections. After filling out the forms about allergies and medical history the nurse came in and while going over it all with me noted that I was allergic to codeine. As is common practice with me I emphasized the fact that I was VERY allergic to codeine or any derivatives. The doctor then came in and unbeknownst to me proceeded to shove codeine soaked cotton swaps up and through my sinus cavities. The codeine saturated a series of nerves in the sinuses that I am told shoot directly up into the brain. I immediately passed out and went into a massive convulsion, one of the nurses told me that the enyire staff was in there and they thought they might lose me. I completely lost bladder control and saturated my jeans - adding extreme embarrassment to the entire ordeal. He then tried to prescribe some pain pills for me, I said I wasn't in any pain, just very confused, disoriented, and wasn't quite sure where I was at. He kept pushing the pills until I took the prescription and noticed that it was a codeine derivative! He looked at my chart, apparently for the first time, took back the prescription, tore it up and stuck it in his pocket.

The point I'm trying to get to is that when these people ignore you or show a lack of concern, then they are being blatantly rude! My feelings are that they are in fact insulting you. And you have every right, almost a responsibility, to call them on it - and if need be, put them in their place. These people are supposed to be providing you with CARE, not kicking back looking down on us all as they fly by on the gravy train. Unfortunately the status today is that we have to make them earn their pay. Take it from me, it's your life and livelihood that will suffer if they are allowed to continue treating you like this. It sounds to me like you need at least an auto and, considering the remarks from your doctor, to take charge of your own therapy - which it appears you are doing. I'm sorry, I probably went a little overboard here but when I read about the way you were being treated it really struck a nerve, as I'm sure you can tell. I really feel for your situation James and am truly hoping for the best. --- BT

[jskinner]

James - sounds like me, your too kind and polite to these creeps, and if you don't get in their face you will be the one that suffers the consequences.

Yes I believe that you are correct. The fact that I am not a very assertive person has been a problem to me getting treated for this illness right from the beginning. It took me 2 years to even convince a doctor that I had a real sleep problem. At first of course I didn't know what was wrong with me. I was miss diagnosed numerous times. As time when on and I got more and more ill I became convinced it was sleep related. As my list of symptoms grew one doctor even suggested that I was a hypochondriac for thinking I had a sleep disorder! Finally convinced my GP to send me for a sleep test and found out I had an AHI of 55.2

Take it from me, it's your life and livelihood that will suffer if they are allowed to continue treating you like this.

Its already affected my livelihood greatly. I've was unable to work the 16 months proceeding CPAP treatment. I'm still not working since I am struggling so much to get things tweaked and feel fully better. Before having to stop work I had a hard time at work because I was so tired and irritable all the time. After quiting work the drs would not put me on disability because they said that having headaches and being tired was not a good enough reason to go on disability. I have mostly spent my all my saving surviving the last two years and an now, for the first time in my life, I depending on my family for part of my financial support.

I really feel for your situation James and am truly hoping for the best.

Thanks, I appreciate your post. Its been a hard few years thats for sure.

[jskinner]

Looking at your picture, you look to be in your early 40's and probably 180lbs. or less, young and in good shape?

Yep. 38yrs old. 174lbs. Pretty good shape. I jog everyday almost although its been harder the last few years with the terrible exhaustion from sleep apnea. I don't smoke.

And don't let them brush off those symptoms as migraines or something else, because they can easily be wrong (looking at your EncorePro reports), I know they are WRONG.

Thanks for you post. It scared me a bit but I agree with you. The event that happened to me scared me a lot too. I could never understand why my GP was not interested in it (but then he ignored my sleep apnea for 2+ years even though I was so sick that I could not work)

Yesterday I went and talked to him again, still no response. He said "your CPAP treatment must need some adjustment. goodbye"

So I went to see another GP that I had seen a few times at a alternative health care clinic. He took much more interest. He setup referrals for me with an ENT specialist (since I had never been sent to see one after the apnea was diagnosed, a Neurologists since he said it seemed like a TIA, and a pulmonary specialist for the arrhythmias I have been experiencing.

Finally it looks like I might get some answers and attention.

Thanks again for your post