If CPAP doesn't work……
Question:
Tal <talie…@i-o.net.au> wrote in message news:37c57c4b@nap-ns1… > Ok – I know this is likely to start another whole controversial thread but I > hope it doesn’t > I’ve been on CPAP for almost four weeks now, I sleep well with it, don’t > wake up or feel uncomfortable. During my titration I only slept for 1.5 hrs > but the technician said during that time I slept well, so I assume that the > CPAP is stopping the apnea episodes.
Tal, Dont assume anything, mate. Ask. If you dont know, demand to find out. See, it is the only way you can keep track of it for yourself. It is really silly to not investigate when it comes to your health. Even the BEST medico will occasionally make mistakes and in the end it is only you who can decide if the doctor is wrong. I dont mean to pull down medicos in general but just to make it known that they arent Gods. > I’m not however feeling any better, will see my sleep specialsist (and yeah, > we do call them that here in Australia) tomorrow and am wondering what other > options he might suggest for me
Depends. Who are you seeing and where in Oz are you? I know of some shonky ones in the "sleep specialist" field and some really good ones. Options could be just about anything related to sleep apnea including surgery or maybe the guy you see is good and really knows what is going on therefore will advise you of other things. IMHO, you havent been on CPAP long enough, yet, to be totally sure. I was on the damned thing 6 months before it was realised it was doing me no good. It wasnt the specialist’s fault. I just wouldnt give up on it until he told me I was whipping a dead horse. IMHO, you have 5 more months of trying it to go. Failing that, the orthodontic device is the next one. > Any ideas? No bare in mind, technically, the CPAP must "work" consider the > apneas weren’t present during my titration, but i still feel terrible when
i Well didnt you say, above, that you didnt really know? Another thing to check out is what your pressure is recommended to be and what the machine is set at. It wouldnt be the first time the company setting the pressure got it wrong. Another thought is that since your sleep study, you DID get worse and now need a higher pressure. may be a little far fetched but still not impossible. It happens over time with every CPAP user but usually not so quick. > wake up so I’m not getting any benefit from it, and I don’t believe it’s > because I ahven’t adjusted to the machine, I sleep great……just wake up > feeling like I haven’t slept at all
You know, you just MAY be not used to it yet no matter WHAT you say. It isnt easy to get used to – I know all about THAT part of it – but you really need to keep on with it much longer than you have to date. — Remove the anti-spammer stuff
Response:
Jan Groenveld <zzjgr…@uq.net.au> wrote in message
news:Pine.OSF.4.10.9908290203590.4413-100000@fox.uq.net.au… > I should add, that I have found it better to use the Adam’s Circuits rather than > the masks ….. much more comfortable in the long term, and no leakage … I > have my titration up at 17 ….so masks tend to blow a bit <G>
Jan, At 17, take up windsurfing and use the CPAP for the motive power!! I can just imagine the mask sitting 2 feet off your face in the air! ;-} Sorry… couldnt resist this. > But to my Oz friend, get another opinion and keep persisting ….. it is worth > the benefits of the great sleep you have once you get used to it
Yeah that is IF you can. Like I said before, some cant for whatever reasons but then even if you definitely cant, there are other options. — Remove the anti-spammer stuff
Response:
gregh wrote: > I have been tested since. They told me that I wake up at … damn I forget > right now but I THINK it was 14 and actually need 17 to stop the apnea > event. Doesnt really help.
There are other technologies than CPAP. BiPAP is one where the machine increases the pressure when you exhale. Resmed has one out now that varies the pressure on every breath depending on the waveform of your breathing. They both are used in cases where people can’t tolerate CPAP. There are also different kinds of masks that will have a different type of "blowing" sensation, or maybe even none at all. One that you might want to consider is the Adam’s circuit. I has "pillows" that fit to your nostrils and directs the air there. I don’t have any experience with these, but they seem like a possible solution to your problem. They are recommended by a lot of the people on this group. OSA not only affects how you feel now, it also has a long-term effect on how long you live. You may want to consider pursuing this further. — randy ra…@null.net
Response:
> Get yourself another sleep specialist. You can try the orthodontic > splint or even a tracheostomy!!
I"m a 27 year old single female…….tracheostomy is NOT the answer for me, I think I’d honestly rather die first….BUT (and this is a big butt - hehe, oops, big but – even though I do have a big butt that’s irrelevant) like I stated before, my case of apnea is really very mild, I only stop breathing for a couple of seconds at a time, I think three seconds was mentioned, this is hardly goign to cause heart probs at the moment. I will continue to have the condition monitored – especially if I put on weight, but at the moment, I don’t think treatment of such a dramatic nature is suitable for me…..besides, technically, CPAP worked, stopped the apnea, just didnt’ help me get on with my life in any way. Doc says that it’s likely the apnea isn’t actually contributing to the way I feel.
Response:
>True, I may need to keep the situation monitored and > make sure it doesn’t get any worse, but I’m young, and female and not severely > overweight so at the moment I dont’ consider it a serious problem for my > future health. I’m aware that can change and if circumsntances change > (eg, > > putting on weight) I’ll be sure to look into the matter again ——– > If you dont consider it a problem for future health, then someone has been > misinforming you or you are purposely not WANTING to see what the truth is. > Dont duck your head in the sand and hope it goes away. Untreated, it wont go > away but it WILL get worse and untreated it WILL kill you eventually.
———- Firstly I can’t see any reason why someone would want to deliberately missinform me. Secondly, my key phrase in the above quote is "at the moment" right now, I just want to feel better! I’m booking in to see a CFS specialist ASAP, CFS people commonly have sleep probs so I have no doubt that he will also consider my apnea when discussing any possible treatment
Response:
Jan Groenveld <zzjgr…@uq.net.au> wrote in message
news:Pine.OSF.4.10.9908290211300.4413-100000@fox.uq.net.au… – Hide quoted text — Show quoted text -> On Sat, 28 Aug 1999, gregh wrote: > > Let me be very clear on this, mate: > > I thought something was wrong in 1993. After going for heart tests of all > > sorts, I was eventually passed on to a sleep specialist who confirmed that > > everything I was saying pointed to sleep apnea. I went for my test in 1994, > > found I had it. At that time I was mild and I came in for a study to test > > with CPAP and I was found to need a pressure of 6. I couldnt get any benefit > > from CPAP after 6 months. I have been untreated since then and am now as > > severe as you can get and still be walking about to talk about it. Unless > > you do something about it, mate, you could very well be like me in 6 years. > > Untreated sleep apnea sufferers NEVER get better and ALWAYS get worse. > Are you sure it was only 6???!!! 6 is what I start at until I fall asleep and > then it goes up to 17 ….. According to my supplier, it is rarely set at less > than 10 for people – even long term ……
Positive. I even told my sleep specialist that I had a case of the runs that night so it was likely that I was awake for OTHER reasons but that is what they recommended and wrote down on the form I had to take to the place that rented CPAPs. > No wonder you didn’t get any benefit …..!!!!!
Wasnt quite that at all. I dont actually have a problem with fat at the back of my throat. I clamp, in a muscular action down the back of the throat so I am actually clenching shut. You cant really imagine enough wind to blow that open that wouldnt scoop me out of bed and throw me away! ;-} Added to that, when I have wind in my face, it takes all my concentration to be able to breathe properly. I have this automatic reaction to a strong enough wind of gulping and choking for some unknown reason. When I was a little kid and used to get on a swing and go as high as I could, I could never breathe on the forward run of the swing for that reason. > How about getting it reset to something more beneficial ….. and trying > again….. it is worth trying that instead of dying slowly!
I have been tested since. They told me that I wake up at … damn I forget right now but I THINK it was 14 and actually need 17 to stop the apnea event. Doesnt really help. — Remove the anti-spammer stuff
Response:
Tal wrote: > I know that a lot of people with CFS/Fibromyalgia (FMS) often find benefit > from low doses of certain antidepresants but this I beleive is more > effective for those that are having trouble getting to sleep or getting > enough sleep, my problem is kind of the opposite - I fall asleep quickly > and sleep for many hours without "waking up" (as in being aware of waking > up – apnea of course means I do wake up regularly)
The medications given to people with CFIDS/FMS aren’t general given because of any form of insomnia. The general sleep disorder inherent in CFIDS/FMS is that the alpha waves continue strongly during delta sleep. This interferes with the deep sleep, but it doesn’t wake the person up. Most of the meds given increase the amount of serotonin produced by the brain during deep sleep; this appears to help the person get better deep sleep. — randy ra…@null.net
Response:
On Sat, 28 Aug 1999, gregh wrote: > Tal <talie…@i-o.net.au> wrote in message news:37c65d5f@nap-ns1… > > Well, I saw the doc, he said there’s nothing can be done……end of > > question, so I’m left with yet another untreatable chronic > > illness……….great just what I need > That’s bullshit unless there is some physical reason that it wont work for > you that you havent mentioned as yet. Maybe CPAP wont work for you – there > are 8% of people worldwide that it doesnt work for – but it isnt the ONLY > answer. Get yourself another sleep specialist. You can try the orthodontic > splint or even a tracheostomy!!
I agree…. that is a load of crap! I am in Brisbane, Australia, and there is no way the sleep specialist that I go to would come out with just garbage this soon after starting the CPAP …. I saw him after one month, only to see how it was going and assess any problems ….. but he will not reassess until after 6 months just as you said … I should add, that I have found it better to use the Adam’s Circuits rather than the masks ….. much more comfortable in the long term, and no leakage … I have my titration up at 17 ….so masks tend to blow a bit <G> But to my Oz friend, get another opinion and keep persisting ….. it is worth the benefits of the great sleep you have once you get used to it JanG
Response:
On Sat, 28 Aug 1999, gregh wrote: > Let me be very clear on this, mate: > I thought something was wrong in 1993. After going for heart tests of all > sorts, I was eventually passed on to a sleep specialist who confirmed that > everything I was saying pointed to sleep apnea. I went for my test in 1994, > found I had it. At that time I was mild and I came in for a study to test > with CPAP and I was found to need a pressure of 6. I couldnt get any benefit > from CPAP after 6 months. I have been untreated since then and am now as > severe as you can get and still be walking about to talk about it. Unless > you do something about it, mate, you could very well be like me in 6 years. > Untreated sleep apnea sufferers NEVER get better and ALWAYS get worse.
Are you sure it was only 6???!!! 6 is what I start at until I fall asleep and then it goes up to 17 ….. According to my supplier, it is rarely set at less than 10 for people – even long term …… No wonder you didn’t get any benefit …..!!!!! How about getting it reset to something more beneficial ….. and trying again….. it is worth trying that instead of dying slowly! JanG
Response:
On Sat, 28 Aug 1999 14:01:41 +1000, "Tal" <talie…@i-o.net.au> wrote: > | > When I started feeling like this I quickly realized that I was > | > breathing through my mouth at night and losing the effect of CPAP > | > almost entirely. May not be your problem, but … > | > | I’d heard about the problems with open mouths and CPAP before I started > | using it, I’ve never been one to sleep with my mouth open (unless I have a > | cold). I’m pretty sure I would have been aware of this problem, I remember > | the first time I opened my mouth while using CPAP (I was awake at the time) > | and I have no doubt that that same sensation would have woken me up! > | > | Thanks for your suggestions 
)
I’m not trying to force a solution on you, but when I first was using CPAP I woke up immediately when my mouth opened and air started rushing out. But within a few days I learned to sleep through it!!! Tom "Call me Adaptable" Miller —————————————————- "Trudy is Beauth, Beauth, Trudy"
