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A Good News Story and an AHI Question?
Just wanted to give everyone an update, I saw my Sleep Dr yesterday for my first 6 monthly review and he was please with my progess. My average AHI was 4.1 a little higher than my first 3 months which was 3.1 but much better than the 30 at my sleep study. He advised that he didn't subscribe to using AHI figures from the machine only a sleep study due to accuracy and I told him it was my way of measuring how I am going. He works on how the patient feels rather than the figures. I was a little disappointed because I look at my results on my machine every morning and see how I am progressing and set myself smell goals. I don't take the data off the machine daily but review it regulary (every couple of months)with my DME.
My question is if Dr's don't use these figures why do machines have them. This maybe an Australian thing or just this specific Dr, he said he is also trying to change the way DME's advise patients and not use the data.
My question is if Dr's don't use these figures why do machines have them. This maybe an Australian thing or just this specific Dr, he said he is also trying to change the way DME's advise patients and not use the data.
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Replies to This Discussion
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Permalink Reply by RockRpsgt on
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AHI alone is not enough.
Hello Mr/Mrs.(Insert name). My name is Rock and I will be taking care you this evening.
Do you have any questions? Yes/No Typically I get "I don't even know where to begin"
or something to that nature. Some do know more than others.Well just so there is no confusion I am going to expalin it in my own words. Tonight I will be attatching 26 different wires to your body at specific locations. Each electrode gives me a different data stream to analyze throughout the night. By watching all of this data TOGETHER I can get a really good idea of what is going on with your sleep.
Basically what I am going to do is watch and look for interruptions in your sleep. I Identify interruptions, or arousals by watching your brain waves. I look for anything that brings you from one stage of sleep to a lesser stage of sleep or completely wakes you up. I have a catagory for everything because it can be anything. Breathing, snoring, moving, talking, teeth grinding, swallowing, and even holding your breath can cause these arousals.
About every hour I total up each catagory and average it with the total amount of sleep that you actually get. The indexes or averages that I come up with not only tell me if you have a sleep problem but in most cases how severe it is, and or how the doctor my treat it. Everything we do in sleep goes by somesort of average. The reason for this is because there is no such thing as perfect sleep. Everyone has some sort of a sleep issue. The way it works is anything that disrupts your sleep more than 5 times an hour we look to correct. Any questions?
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Permalink Reply by Terry Vella on
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Thanks for the reply Rock, that's what I was told during my 2 sleep studies, my point or question is for us amateurs wanting to know on a daily basis how we are performing is it a good enough guide or could it be so far out that we are wasting our time even though it takes a second.
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Now in my next sep I would go on to explain the implications of breathing events, patterns, and the treatment there of. At no point did I indicate that I woould be looking at any ONE specific thing. The reason for this is that looking at one without the other would lead to isignificant findings. AHI without an arousal index is useless. An arousal index without a leg or limb movement index is useless. The reasoning is simple. Without one or the other we don't know the source. Without the source the event does not exist in the terms of significant data. The CPAP machine that you have does not measure enough parameters make any index significant. Your AHI of 4.1 tells me that you are having 4.1 events per hour. What kind of events though? Are you swallowing, yawning, or grinding your teeth? All of these would be counted as events by your machine. Is it an apnea, central apnea, hypopnea, or RERA. We don't know. Neither an obstructive apnea or a central can be accurately counted without measuring your respiratory effort(lung function). A hypnea can not be measured without an oximeter, and counting a RERA without being able to see an arousal is a joke.
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Now that explains your docs and many others reasoning. Is the efficacy data irrelevent in terms of your own use? The answer is no. Both you and your DME should use this data to identify good and bad trends in your sleep patterns. A good DME or healthcare practitioner should know when to report an issue to the doc. They should also know when to alleviate any concerns and not bug that same doc for insignificant findings. Sleep is fickle and will change with changes in the weather, barometric pressures, humidity, and the cycles of the moon. Keep track of your readings on a month to month interval. Look for highs and lows. Then look for common denominators in those trends. what was the weather like? Stage of the moon. Woman should look at where they were in their feminine cycles. Did you have an adult night night out or beverages? All of these things will effect the data. Most importantly if you are going to monitor your own data get the proper software to look at more than AHI. Knowing when you're having events is almost more important than just the knowing by itself. REM events are going to happen. Transitional events from one stage of sleep to the next are going to happen. Swallowing can't be stopped.
I hope all of this helped.
Rock Rpsgt
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Thanks Rock, I knew I would get an accurate answer from you. I assume that 4.1 is good because it could actually be zero or anywhere inbetween and the 4.1 could be as you said from swallowing, yawning, grinding my teeth, also I have noticed that when I have a cold or cough my AHI is a lot higher around 10-15 and like you said I seem to get higher readings in warmer weather versus colder weather. I feel a little better now knowing this, I'll still have a look each morning because I'm curious. Have a good weekend.
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Sorry Terry in the middle of writing my essay I missed your earlier response. I hope I was able to answer all of your questions.
There is another reason that some docs under-scrutinize AHI. Sometimes anxious or very determined persons put way to much emphasis on this number. We find that this small group of patients end up chasing the ever elusive AHI of 0. What ends up happening with these select few is that they blow off the advice of the doc and start making changes on there own. This type of action could cause an exacerbation of arousals, respriatory problems, heart problems, or even cause simple apnea to become complex. This is rare but very possible. The bigger fear for me in changing one's settings on your own is losing some much needed support. Several things happen when you change your PAP parameters without a doc's permission. First you release the doc from liability. Second you release your DME, Insurance, or NHS from financial liability. This could mean for some that you are on your own for treatment and financial compensation.
An AHI of 4.1 is an amazing result! Anything under 5 is great. Honestly I would not begin to question anything unless it stayed over 10 consistently. If you feel good and notice no decline toward the opposite I would not worry.
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Permalink Reply by Tigers Fan on
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Now that, Rock, has to be an all-American reponse!
"Blow off the advice of the doc" - I've been PAPing for three years now and have yet to see the NHS doctor with responsibility for my treatment. The nurses I see don't even know how to set a machine. The Tech Dept send them all up set at 10cm for CPAPs and wide-open for APAPs - and that is how the nurses dispense them. The criterium they use for judging whether treatment is successful or not is if the patient still snores or has ceased.
"First you release the doc from liability". She has no idea at all what I look like, let alone what my treatment is.
"Second you release ...... NHS from financial liability". The alternative is to suffer a life of sleep deprivation for fear of not being able to sue someone.
The CPAP the NHS first gave me was set at 10cm. I need 17.5cm to get AHI below 5. I convinced the NHS I need an APAP so they gave me one set at 4 and 20 cm - I run it at 16.5 and 18.5 to get AHI below 5.
The NHS told me I have OSA and for some reason, I accept this. I have no idea if I also suffer centrals or other complications but on the premise that I simply have OSA why on earth should I not adjust my machine to keep my AHI low? No-one else takes any interest. No-one measures my events. I make do with AHI and a (cheap) pulse oximeter to guide me about adjusting my pressure settings (within the design, safe range of the machine) in order to achieve a night's sleep.
It's a different way over here, Rock - "needs must" is the way. Unfortunately, we are importing or have imported a compensation culture from the US and it diverts NHS funds from medicine to solicitors (lawyers) and a few individuals.
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Permalink Reply by Kath Hope on
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Great news for you Terry - in such a short time it's good to hear how well you're doing and how much better you're feeling. A lot of this though is due to you being pro-active in helping yourself in every way you can - making sure your CPAP treatment is comfortable to be so successful, and also helping yourself in every way you can to ensure you're being sensible in sleep. All credit to you Terry! Just lately someone told me they want to start using an APAP so they can start drinking alcohol again and the machine will compensate and look after them. Some people just do not take sleep issues seriously :(
I'm a firm believer that people should have access to their AHI - either a brief summary on their machine or (like me) a detailed software analysis. If we have Diabetes (which a lot of OSA sufferers do) we would be encouraged to monitor our blood sugar levels daily to see how our bodies are coping with the diet/medication. Likewise, people should be able to see that their CPAP is bringing down their AHI.
I was speaking to someone a few weeks back who ended up in hospital in the middle of the night with a suspected heart attack. To cut a long story short, he was advised to go back to his sleep clinic to check on his OSA, and discovered his CPAP was faulty and hadn't been treating him. He now has a data-capable machine! However, as Rock rightly pointed out, our AHI can fluctuate due to lots of different reasons so we shouldn't get strung up with changes in it unless they're particularly extreme. It should be merely used as a guide, but I, like TF, have tweaked my settings to get the best average satisfactory results.
It's no wonder you've had to take measures to take care of your own treatment TF, with care (or should I say lack of) like that. It would be interesting to know the percentage of compliant CPAP patients at your hospital, as most people need guidance, care and support. If the patients are not being treated properly with CPAP and notice no difference to their health or energy levels, then they are hardly likely to work hard to be CPAP-compliant. Hull has, from time to time (often unfairly), been given bad-press on certain issues, but I for one am glad I live here with such a super sleep clinic!
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Nothing ilicits a debate like a response from a sleep tech on matters such as these. Things are not so different as you think. There are many American PAP users in the same boat as you. This question and my response highlights some big issues in both of our systems. Which by the way the U.S. is on path to duplicate the European model.
I didn't even say that I was against tweaking or changing pressures tiger. I just said that it would be in your best interest to give some sort of notice to whomever you speak about sleep. CYA ya know. That's American for Cover Your Ass. You may be able to afford to buy your own machine if by chance you were to face some sort of repercussion. Others may not.
I was asked a question. I answered said question as many ways as my knowledge allow. I stand by those answers. Sorry if I offended. For the record I listed anxiety ridden folks, and folks determined to get their AHI to 0. Neither of those groups would I have ever labelled you. I reserve a special place at the table for crotchety engineers.;)
Have a good day all
Tigers Fan said:
Now that, Rock, has to be an all-American reponse!
"Blow off the advice of the doc" - I've been PAPing for three years now and have yet to see the NHS doctor with responsibility for my treatment. The nurses I see don't even know how to set a machine. The Tech Dept send them all up set at 10cm for CPAPs and wide-open for APAPs - and that is how the nurses dispense them. The criterium they use for judging whether treatment is successful or not is if the patient still snores or has ceased.
"First you release the doc from liability". She has no idea at all what I look like, let alone what my treatment is.
"Second you release ...... NHS from financial liability". The alternative is to suffer a life of sleep deprivation for fear of not being able to sue someone.
The CPAP the NHS first gave me was set at 10cm. I need 17.5cm to get AHI below 5. I convinced the NHS I need an APAP so they gave me one set at 4 and 20 cm - I run it at 16.5 and 18.5 to get AHI below 5.
The NHS told me I have OSA and for some reason, I accept this. I have no idea if I also suffer centrals or other complications but on the premise that I simply have OSA why on earth should I not adjust my machine to keep my AHI low? No-one else takes any interest. No-one measures my events. I make do with AHI and a (cheap) pulse oximeter to guide me about adjusting my pressure settings (within the design, safe range of the machine) in order to achieve a night's sleep.
It's a different way over here, Rock - "needs must" is the way. Unfortunately, we are importing or have imported a compensation culture from the US and it diverts NHS funds from medicine to solicitors (lawyers) and a few individuals.
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I had to buy my own machine - can a retired, gentle engineer afford to do that? - because funding was not available on the NHS. That has changed in three short years so I now have an NHS machine. When I told my clinic nurses that I set the pressures myself, I was threatened about not being able to sue the NHS if I exploded my lungs - the nurse thought I could still sue for other, non-lethal, eventualities, presumably.
My VSI was zero over the last week so my treatment is good by NHS standards! I'll stick with enjoying life and a low AHI as clues about efficacy.
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Thanks Kath for the encouragement and the continued support from everyone on here and other forums. Without out that I think I would still be where I was 6-9 months ago. Thanks Rock for your answer sorry it created a bit more discussion. Just for both your knowledge in Aus if you have private health insurance you get 25% of the CPAP equipment back so I had to pay roughly $2000 for mine but it is the best $2000 I have ever spent. I don't think or I should say I know I wasn't going to live much longer if I hadn't been diagnosed when I was and started treatment urgently. I said to my Dr the other day, I don't feel a 100% now but I do feel 100% better than I was if that makes sense. I'm not sure if I will ever be 100% again but who knows what that is anyway? I am slowly tapering off the antidepressant that I am on and that is going to be a long journey in itself. After 1 month I am taking 25% less than I was and feel much better for it. I don't even know if I ever had depression or it was sleep debt. Oh well, you live and learn, hopefully by the end of the year I will be off it all together and starting the new phase of my life. To everyone in the UK and US have a good weekend, get a good nights sleep and remember we are all in this together with one thing in common - Sleep Apnea.
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Our pleasure Terry and glad you found us :) Also, thanks for all your help on here encouraging the other members. It truly is appreciated :)
I know exactly where you're coming from when you say you feel 100% better, and I'm sure that will improve with time too. It's such early days still, and you're now adapting to living without sleep deprivation, if that makes sense. Just the very fact that you're now working at coming off the anti-depressants (that you're right in saying you maybe didn't even need) speaks volumes. Thousands of people are put on these types of medications when they go to their GP's without the knowledge that they actually have sleep apnoea which is causing the depression and/or anxiety. This is obviously making the undiagnosed OSA worse! Only the other day I had a man ring in desperation, after having read all the info on our website, because his GP wouldn't hear of the likelihood of sleep apnoea and wanted to give his wife even more sleeping pills :( Anyway, back to you....... due to the fact that you and your GP didn't know you had OSA you did need those anti-depressants at the time, and they no doubt saved you from getting clinically depressed (yes, I know a lot about this as my own undiagnosed mother had a terrible time with depression/anxiety and addiction to these tablets etc.) even though they made the apnoeas worse. The thing is, your body has now got used to them, so you are doing the correct thing in gradually weaning yourself, with your doctor's help, off them, and anyone who's reading this post must not consider coming immediately off any medication, as I know first-hand the repercussions of this.
Good luck on your journey Terry, and you'll no doubt keep us posted. (By the way your AHI is amazingly low considering you're still taking some of these tablets. However, you're doing everything else by the book, so you'll end up as one of those annoying ones who eventually get their AHI down to zero LOL).
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