CPAP machine helps sleep apnea but still feeling dopey

[Tassie Devil]

Hey guys, time to leave Palerider alone and stick to the subject of this post.

I've now downloaded ResScan and that does register 7 hours usage. But I really do need leakage data. The loan machine must have been a bit more sophisticated than the S9 Escape as the technician did read off leakage stats from it.

I've made enquiries and the very reasonable (Government assisted) hire scheme I'm on appears to only offer the S9 Escape although the girl I just spoke to is double checking. She reported that the procedure is to lend out a model that does give all leakage etc data so they adjust masks, pressures etc so the S9 Escape can be set up correctly. I've been through that so, unless prepared to fork out thousands of dollars (prices here appear to be double those in the USA) looks like I'm stuck, at least for the first 12 months.

But it might well be the sinus aggravation mentioned in an earlier post is the root cause of my dopiness and the S9 Escape could actually be all I need. We shall see.

[jencat824]

Tassie Devil,

You might try secondwind.com, a site that sells gently used CPAP machines at reasonable prices with a warranty (I think 2 years). Also, we have a forum member, STL Mark who sometimes sells barely used or new units for very reasonable prices.

You could consider buying from a local individual via Craigslist or its equivalent in your area. Be very careful if you go that route, remember the 'buyer beware' principle.

Also, from time to time individuals offer auto machines for sale here, just watch for other forum members to either recommend them, or to ask them validating questions, such as 'who are you & why don't you register if you have nothing to hide & want to sell here' etc.

There are ways to purchase a machine at US prices & have it 'drop-shipped' to another US address & then to you. ResMed & Philips Respironics don't allow the sale of their machines by US companies to be shipped outside the US. Dumb rule if you ask me, but its a fact we have to live with.

In the meantime, you might try to exert some pressure, or nicely beg, your DME or enlist your Dr's help to get a fully data capable auto machine. As you can see, data goes a long way in getting the most from therapy. Let us know how the antihistamine & nasal rinse works for you. I hope it gives you some relief.

Jen

[Guest]

Wasn't it you who brought him into the topic here...

And I should publicly acknowledge that Palerider sent me a private PM and apologized if I had been offended.
John

[zoocrewphoto]

I've now downloaded ResScan and that does register 7 hours usage. But I really do need leakage data. The loan machine must have been a bit more sophisticated than the S9 Escape as the technician did read off leakage stats from it.

The loaner was probably the autoset. The Resmed S9 models all look the same, but have different options. They probably use a full data machine to do the titrations and then give the patient the cheaper model. They know that new people won't recognize the difference or see a reason to ask.

If you can convince the doctor to prescribe a full data machine, that will really help you a lot. If not, craigslist is probably your best bet. You need to find an elite or autoset. The elite is a straight cpap like your escape, but with full data. The Autoset is an auto machine with full data. Ideally, that is the one to get. I have seen them on craigslist frequently. $400 is decent, and I've seen a few in the $200-300 range.

[Tassie Devil]

OK I've now got the picture straight. As discussed the loaner was an auto set. But after the sleep study in hospital a fixed basic machine was put on the menu and the only way it can change is if the lung specialist prescribes differently. I have yet to go back to see him so will raise the issue with him. I Googled to see what was currently available used and new. The prices here are ridiculous and I could import a suitable machine with humidifier for around $1000 from the USA but hope to avoid that.

It could turn out the basic S9 is ok if attention to the sinus reaction solves the dopiness. I guess that will not happen overnight so must be patient but do feel a bit better after the Telfast so that might well be the issue.

I do appreciate the help given here - it has been quite an educative process.

[Wulfman...]

TD,

In lieu of the Autoset model, there is another model which is fully data capable......the "Elite" model. It's a straight pressure machine like the one you've got now, but it would at least give you lots of data. The only thing is doesn't do is change pressures through the night......but, some people are disturbed by those pressure changes anyway.

Well, I just wanted to let you know that the "Elite" would give you data and should be somewhat less expensive at the same time.

Good luck.

Den

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[Tassie Devil]

Thanks Den, I did spot the Elite but was not sure about where it fitted in - you have answered that question.

I have been told I'm actually hiring the CPAP from the hospital so have been given a number to ring tomorrow to discuss with therm if and how the present unit can be changed. However I feel the bottom line decision rests with the lung specialist but I'll find out tomorrow.

But I'm a bit more optimistic now that the cause of the daytime drowsiness might be sinus reaction although strange I have not seen that mentioned anywhere.

John

[archangle]

I don't know all the tricks in Oz but a few possible hints. If you can get the doc to prescribe a pressure range, that may get you a data capable machine. Hopefully, they won't try to give you an S9 Escape Auto or AirCurve 10 "CPAP" model, which have a little data, but significantly less than the fully data capable machines.

I've done well finding good model machines on Craigslist. I don't know how well that works in Oz.

Some people have figured out how to buy online from the US and get it shipped to Oz and saved a lot of money that way. ResMed is an Aussie company, but charges much more there than in the US.

[Tassie Devil]

I have done an extensive search on Craigslist etc for used units and some are available at tempting prices imported from overseas. The freight is a killer but the total cost still ends up half what it is here in Oz. But I will hold off for the moment and not move until after I've revisited the lung specialist.

I appreciate the suggestions from many of you that I need a unit which can better monitor what is going on but I'm afraid I fall into the mystery 10% who appear to react badly to CPAP. Reading extensively about this problem I've come across this statement "In spite of a substantial prevalence, residual sleepiness remains still poorly understood and may be difficult to treat. There remains a need for large prospective studies to better define predictive baseline characteristics and further research on causal mechanisms and pharmacological treatments, including large, long-term clinical trials of wakefulness stimulants, is needed." at http://www.medscape.com/viewarticle/812910

The clinical study reported at http://www.hindawi.com/journals/sd/2013/140725/ is no more encouraging.

The sinus activation reported earlier could be part of the problem here. Nasal sprays and Telfast tablets do give slight relief but sadly it does not appear to be the whole story as I'm still VERY foggy, have difficulty remembering words and feel generally zonked/spaced out. Maybe that is what some poor souls seek from illicit drugs and I'm getting it from CPAP!!! My age of 79 next week does not help but fortunately, being well and truly retired, there are no adverse work related issues. One must feel for those feeling this way who are attempting work related mental activity.

Bottom line on all this is the header for the thread is actually misleading. It should read CPAP machine might be solving sleep apnea issues but I'm waking up feeling dopier and worse than before CPAP. Sadly, with few having this experience there is not much motivation to find answers apart from drugs which I wish to avoid. To use CPAP to sleep better and follow up with drugs to wake up better seems incongruous to me. But there are many many millions of people in the world worse off than me which is some comfort so one should not be full of self pity ! Also, as with many maladies, individuals each have their own set of genetic and environmental heredities so what works for A might not for B.

Thanks again to those who offered helpful suggestions. If ever there is a breakthrough I'll report back.

Regards

John

[Wulfman...]

Hi John.

Thanks for the update.
All of that MAY be true, but the problem still remains that you have no idea how your therapy is working because you have a data-less machine.

Lots of users (new or longer timers) have similar struggles on the road to getting their therapy optimized. But, again, you have no idea of whether it's anywhere near being optimized. So, I think it would be premature to consider yourself in that 10% category at this time.

But, hang in there and keep us in the loop.


Den

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[Tassie Devil]

Fair comment Den.

I have contacted the office of the lung specialist and will put the case to him to approve a unit which gives information to allow monitoring. I guess after most people have been through a close exam in hospital it is expected the optimal settings have been established so a basic machine set to those figures should be OK. I'll challenge that assertion when I see him.

John

[Tassie Devil]

OK, here is another thought. Today someone mentioned how whenever they have a particularly good long sleep they wake up very groggy and it takes ages for their head to clear. So, maybe CPAP is being too effective at the moment and one should be patient and allow time for the brain to adjust to the better sleeping situation. We shall see. At the moment it is taking 10 hours to feel awake!!

The nose mask arrived today from the USA courtesy of FedEx. It is a Philips Respironics Comfort Nasal CPAP mask & It took awhile to adjust for comfort and leaks but hopefully it is now all set for tonight. I must say I find the ResMed H5i ClimateLine tubing gives a more comfortable air flow than the unheated tubing. More expensive for sure but ..... I'll alter the equipment listing to this nasal mask if it is more comfortable.

John

[TristramShandy]

I'm new here. And, having just read this entire thread, I'm amazed at having found somebody on the other end of the earth (John in Tasmania, aka Tassie Devil) who has the exact same "mysterious" problem as me. I'll try to put it succinctly, along with the relevant variables (equipment, etc.).

I'm 46, male. Three in-clinic sleep studies over the past couple of years resulted in a diagnosis of "mixed" or "complex" apnea, meaning I have some obstructive apnea events and some central apnea events. I too was sold the dataless S9 Escape "brick". I too used the Sleepyhead software to confirm that the S9 Escape was not capable of providing any of the data that my doctor claimed to be reading. I now have this equipment:

- ResMed S9 VPAP Adapt (adaptive servo machine)
- ResMed H5i humidifier
- ResMed ClimateLine heated tube
- ResMed Quatro Air mask

I've been on this combination of equipment for at least 6 months, probably longer. But the problem is this: every day I wake up feeling indescribably dopey, foggy headed, sedated, confused, dizzy, disoriented. Regardless of how much coffee I drink or if I take Provigil, or even hardcore stuff like RedBull, it takes me hours to be even awake enough to safely drive a car. And even then I'm not really myself until eight or ten hours later, which is very late in the day for most people.

This situation has gotten steadily and slowly worse. In late June I had to quit working and go on disability. Tassie Devil was kind to hypothesise what a nightmare this would be for a person trying to work. I can confirm that it was, in fact, a total nightmare.

My situation was complicated by the fact that I was on antidepressant medications. After years of going to doctors and getting tested for everything under the sun (thyroid, etc.), I eventually decided to undertake the unpleasant and months long step of tapering off of both the antidepressant meds in order to rule them out as possibly causing fatigue or sedation. I did this with the help and supervision of a psychiatrist and a psychologist. It goes without saying, but I'll say it: don't even think about attempting that on your own! It has been extremely unpleasant, but has gone exactly according to plan. Now that I've been off of the last of those meds for at least three weeks, the outcome is this: As expected, I'm depressed and anxious, but the fatigue, brain fog, or dopiness, whatever you want to call it, is just as bad as it ever was. For this reason I will soon go back to the head shrinkers and get on some other med(s) for depression and anxiety.

Also, in addition to eliminating all prescription meds, I stopped alcohol and even spent time without caffeine. Both deprivations sucked profoundly, but neither improved the situation. I've resumed moderate use of caffeine, just to be able to do things like bathe, shave, dress, or walk the dog some time before the sun goes down. I'm also relying on caffeine to exercise every day as a bulwark against the depression. The exercise is a bizarre experience because I am so mentally inept and so tired that it feels something like a forced march. But this strange exhausted exercising every day for the past couple of months has allowed me to refute yet another hypothesis from my general practitioner doctor and my psychologist: they had been saying that proper diet and exercise would sort everything out. It, and a fairly healthy diet, have not made a bit of difference in this brain fog situation.

As of yesterday I'm once again trying out the prescription drug Provigil (it promotes mental alertness). The Provigil I took this morning is the only thing enabling me to even figure out how to register my account here today, fill out the profile (equipment, etc.), read this long thread, and compose this reply. Even with the Provigil, today has been very difficult. It is relevant to mention here that I am, or was, a professional IT worker. My point is that, underneath this permanent fog there is supposedly a brain that knows several programming languages, etc. The Provigil brings that brain somewhat into the forefront, but the cost is insomnia till 3 or 4 in the morning, along with a general feeling of tension. Because of this, I can only take Provigil a couple days per week.

The last time I saw the sleep doctor he told me that the data coming off of the S9 VPAP Adapt machine was "near perfect" and that my problem must be psychiatric and to come back in 6 months so he could read the data from the machine. Any of you with a history of mental health or emotional problems will recognize this standard reaction by my sleep disorder doctor. I would assert that it is an unwritten codification of the so-called "stigma" against mental/emotional health problems. But this is not the forum for that opinion.

My next move here, now that I'm free of any meds that could be blamed for sedating me, is that I'm going to find another sleep disorder doctor. When I asked this doctor if he would consider bringing in a colleague for a second opinion, he became defensive and told me I should not bother because all other sleep specialists in the city would not be able to fit me in for several months. I live in one of the biggest cities in the world.

I'll re-post here with an update whenever I have any progress to report, whether success, failure, or more ambiguity.

I'd also like to say thanks to everyone who spends so much time replying to all these conversation threads and questions.

[archangle]

I have done an extensive search on Craigslist etc for used units and some are available at tempting prices imported from overseas. The freight is a killer but the total cost still ends up half what it is here in Oz. But I will hold off for the moment and not move until after I've revisited the lung specialist.

I'm afraid of shipping for CL sales. I've always just watched until I found one close enough to drive to pick up. I've often had to wait quite a while, but I was never in a big hurry, either.

Of course, it might be a lot harder to find used units in Oz, especially if you aren't in the big city. Or prices might be worse. Maybe there are some other sites than Craigslist to look at.

[archangle]

I'm new here. And, having just read this entire thread, I'm amazed at having found somebody on the other end of the earth (John in Tasmania, aka Tassie Devil) who has the exact same "mysterious" problem as me. I'll try to put it succinctly, along with the relevant variables (equipment, etc.)....

Sounds like you need to have a serious talk with Dr. Shandy about your treatment. Welcome to self managed medicine club.

Are you using SleepyHead now? What do your results look like?

How long have you been in your current situation in terms of drugs/no drugs and CPAP settings?