Anyone NOT been titrated?

Chalkie · Post by **Chalkie** » Sat Apr 07, 2018 9:28 am

To the best of my knowledge, my therapy pressure has not been titrated. I say to the best of my knowledge as I have undergone more than one in-patient sleep study. One for sleep apnoea and two for PLMD. I have also had at least two overnight sleep studies done with use-at-home equipment.

I presume titration is carried out as an inpatient study? Or can you do it at home with takeaway equipment?

No-one ever mentioned titration. Or maybe they did titrate me as part of the study?

I wonder whether NHS patients normally get titrated or not. I have the impression that in my locality at least we do not. They simply start you at a certain pressure and if you don't return complaining you feel no better they don't tweak it.

I can see I am going to have to keep up a nose to the grindstone approach to getting my therapy right and be prepared for it to take months if not years, what with months-long waiting lists for everything (if not longer).

An appointment with the consultant as well as the tech is called for I think.

Julie · Post by **Julie** » Sat Apr 07, 2018 9:34 am

Sometimes it's done as part of the initial study and sometimes as a 2nd one... depending on varous factors or just the particular lab. And of course can be done at home if you have an auto machine and e.g. Sleepyhead software to go by. Or you can just set the min. pressure to a low one starting out - e.g. 6 - and leave the high setting at 20. Do that for a few nights to see how things go and then if necessary, raise the min. by 1-2 cms. The problem though could arise that something else is causing problems and without Sleepyhead, or lab study, you won't know what it is and possibly continue raising your pressure when it might not be the best idea.

Pugsy · Post by **Pugsy** » Sat Apr 07, 2018 9:45 am

Home titration can be successful when given the right machine and someone who understands what they are seeing on the reports....easy peasy for plain ordinary OSA.
Gets a bit more difficult when dealing with complex issues where centrals might be involved...
But it can be done at home even with complex issues providing the right machine is use by someone that knows what they are doing.
If those 2 factors can't be obtained...right machine and right person...then home titration is much more difficult.

Ideally an in lab sleep study hooked up to the machine so that optimal therapy pressures (and type of machine) can be quickly tried and when no success move on quickly to something else....and again involves the right sleep tech who knows their stuff.

You need to see a doctor and not a nurse or a tech...and hopefully a doctor who knows how to deal with your complex issues.

Pugsy · Post by **Pugsy** » Sat Apr 07, 2018 10:23 am

Everyone remember.....Chalkie is in the UK and using NHS and is dealing with a nurse/tech who thinks that we are a bad influence and that she/he walks on water.

Chalkie · Post by **Chalkie** » Sat Apr 07, 2018 10:38 am

Pugsy wrote: ↑
Sat Apr 07, 2018 10:23 am
Everyone remember.....Chalkie is in the UK and using NHS and is dealing with a nurse/tech who thinks that we are a bad influence and that she/he walks on water.

It is a well-meaning, overstretched, paternalistic system that treats you a child at times. However, I have to make the best of it

I don't think I have been titrated. I think the only way I may get it is to push for an appointment with the consultant and then ask for a sleep study. next step is review by the tech in a month and she says she is going to ask for a data download in the meantime to check progress.

Lucyhere · Post by **Lucyhere** » Sat Apr 07, 2018 11:07 am

Pugsy wrote: ↑
Sat Apr 07, 2018 9:45 am
Home titration can be successful when given the right machine and someone who understands what they are seeing on the reports....easy peasy for plain ordinary OSA.

+1

My doctor knew without titration what my settings should be. Sleepyhead confirmed she was right.

prodigyplace · Post by **prodigyplace** » Sat Apr 07, 2018 11:27 am

I was not titrated. Insurance insisted on a home study. The study indicates 19 AHI (if I remember correctly) so a CPAP was prescribed.
The DME set it up initially and, I guess you could say, I have been self-titrating, to some extent.
I think I started at 5-10 I am now at 6-12.

Jas_williams · Post by **Jas_williams** » Sat Apr 07, 2018 11:57 am

I am in the UK I was not titrated. In my area they just guessed a CPAP pressure based on I assume the number of events in my home sleep study and my BMI for my Resmed S9 Escape (a brick that just provides runtime it does not even provide an AHI figure)

I decided to buy my own Autoset machine and used that instead. The only information from the S9 was how long I was using my machine and at the 30day follow up the question was well how do you feel ? does you wife still hear you stop breathing ? Are you snoring?

I decided to take charge of my treatment I discovered I have complex apnea the Autoset was treating the OSA but I was left with a variable AHI of 5-30 all Hypopnea and CA’s so I purchased my own machine and adjust my own settings if I want the NHS to provide an ASV machine I require then a special funding request needs to be made to the Trust. I purchased a used (24hrs) S9 VPAP Adapt from a user on here who shipped it from the States I am now getting 0 or 0.1 AHI nights and feeling great... I am still waiting for the follow up appointment from an overnight study on the 6th Dec despite phoning and chasing to see if I could get issued a BiLevel machine to treat my complex apnea

Jason

Chalkie · Post by **Chalkie** » Sat Apr 07, 2018 1:38 pm

Jas_williams wrote: ↑
Sat Apr 07, 2018 11:57 am
I am in the UK I was not titrated. In my area they just guessed a CPAP pressure based on I assume the number of events in my home sleep study and my BMI for my Resmed S9 Escape (a brick that just provides runtime it does not even provide an AHI figure)

I decided to buy my own Autoset machine and used that instead. The only information from the S9 was how long I was using my machine and at the 30day follow up the question was well how do you feel ? does you wife still hear you stop breathing ? Are you snoring?

I decided to take charge of my treatment I discovered I have complex apnea the Autoset was treating the OSA but I was left with a variable AHI of 5-30 all Hypopnea and CA’s so I purchased my own machine and adjust my own settings if I want the NHS to provide an ASV machine I require then a special funding request needs to be made to the Trust. I purchased a used (24hrs) S9 VPAP Adapt from a user on here who shipped it from the States I am now getting 0 or 0.1 AHI nights and feeling great... I am still waiting for the follow up appointment from an overnight study on the 6th Dec despite phoning and chasing to see if I could get issued a BiLevel machine to treat my complex apnea

Jason

Interesting. Is the NHS happy to treat you now you have bought your own machine? I am starting to think I am going to have to get more hands on to get this concision under control.

Jas_williams · Post by **Jas_williams** » Sat Apr 07, 2018 1:57 pm

To decide I had complex sleep apnea I needed to do an overnight in hospital study that was done on my Purchased Resmed A10 I was then diagnosed with periodic breathing as I said my OSA was treated but I have outstanding CA’s still waiting on that follow up.

RogerSC · Post by **RogerSC** » Sat Apr 07, 2018 2:11 pm

They wanted to do titration at my sleep studies. The first sleep study didn't have enough sleep time to be able to, so the sleep doctor guessed at initial settings. He was pretty close using his experience, I guess...Started at 8 - 10, and after a few years I'm at 10 - 12.

For my recent second sleep study, they wanted to do a titration, but I turned them down. I've already got things tuned, and I don't see much value in being awakened in the middle of the night to get settings that would apply in a sleep lab *smile*. It was bad enough to be awakened to be asked to sleep on my back.

However, I have simple sleep apnea. Mostly obstructive and hypopneas, a few central apneas. Not hard for me to figure out using my own sleep data at home in my usual sleep environment. There are more complex cases, where titration in a lab would be useful, but one's sleep study data should show that.

Julie · Post by **Julie** » Sat Apr 07, 2018 2:27 pm

I think it's important to remember that the severity of your apnea - how many events you have per minute/hour has little to do with what pressure you need to keep your particular airway open... you may have had 70 arousals/night but only need a low pressure of 6-7 to do the job, but need e.g. a min. pressure of 12 even if you're only having 7 events/hr/night if your airway is very narrow.

Ron AKA · Post by **Ron AKA** » Sat Apr 07, 2018 5:10 pm

In Canada I was just given the sleep study results, and then a trial Auto CPAP machine to try. The tech left me in the chair with it on for about 15 minutes while I presume she had a coffee. Then she sent me home with it. The machine reports data back to her office, and she phoned me a couple of times to tell me that it was great that I was using it every night and that the results were good. I didn't have the heart to tell her I switched machines with my wife one night, and she gets about 10 times better results than me. She didn't seem to even notice. After the two week trial I did not buy the machine at $2400, and instead bought a better one for $900 and I am adjusting it myself, with actually quite poor results. Because it ended that way, I don't know what she would have done next, but I presume she may have suggested some improvements.

If your machine is supported by SleepyHead you should be able to adjust it yourself, unless you have a complex form of apnea.

D.H. · Post by **D.H.** » Sat Apr 07, 2018 9:45 pm

Did you use CPAP at any time during your lab test? If the answer is yes, I would suspect that you were indeed titrated.

If not, then you were not titrated in a sleep lab.

Titration in a sleep lab was considered necessary until recently. Nowadays, the better CPAP machines give feedback and can deliver results remotely. They can do something akin to titration based on this feeback.

Chalkie · Post by **Chalkie** » Sun Apr 08, 2018 2:21 am

D.H. wrote: ↑
Sat Apr 07, 2018 9:45 pm
Did you use CPAP at any time during your lab test? If the answer is yes, I would suspect that you were indeed titrated.

If not, then you were not titrated in a sleep lab.

Titration in a sleep lab was considered necessary until recently. Nowadays, the better CPAP machines give feedback and can deliver results remotely. They can do something akin to titration based on this feeback.

I think I did use CPAP, but it was ten years ago so memories are hazy.

Ron AKA I can't use Sleepyhead with my machine, unfortunately.

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