Stubborn family member

[Sparticus]

Yet you have started up a thread asking why you are so tired, and still keep nodding off?
Maybe if you let the experts deal with your OSA, then you may have better results?

I bet you jump when you saw that My Doctors advice after explaining it all to him was that it must be old age or bordem or its just you ????

A great medical diagnoses, he couldnt bring himself round to saying "I dont know" OK, If my results, my machine, my oximeter are all saying that my treatment is spot on, my preasures are good, my AHI, AI and HI are all spot on and my leaks are hardly visible on the machine (0.05) Then obviously it isnt my sleep apnea thats the problem. Ive also had bloods done for Diabeties, thyroid and whole load of other problems that I havent got.

The "EXPERTS" as you call them dont care! My doc didnt tell me to raise my pressure, my doc also didnt tell me to go and buy my readers from Israel or my data cards from Canada. He also didnt tell me what my results were. He told me everything is fine come back in 18 months and thats with an AHI of above 10!!!

My doctors wont even discuss my results after I put a complaint in about them When my appointment comes round, I will smile and say everythings fine thanks. My results are good, thanks to ME and the guys and gals on the forum who made me understand that its up to me to sort myself out cos no one else will.

..But hold the front page, Im not saying that your way is the wrong way, Its just right for me as everyone else is different and if your doc will sit down and discuss whats happening to you then hold on to it cos not all docs have the time or can be bothered

[Barely Awake]

Suffering from OSA, one is tired, one may find it difficult to concentrate and focus, one may not always express and explain oneself (sufficiently well enough to be readily understood) even when benefitting from CPAP. Add to this the lack of information/ knowledge /understanding of someone undiagnosed, or a newbie or novice, or even someone experienced that is unsure and lacks confidence.

What I have benefitted from in each of these states, was an understanding and patient GP, an excellent specialist that on diagnosis took time to explain things to me, and a number of very obliging sleep service nurses.

The problems I have encountered as someone with patient experience as sole knowledge on which to base an opinion, when in each of the aforementioned states, has been a lack of understanding about what is involved. On one occasion this led to a machine not being adjusted to help me in the most user sympathetic way. On another a nurse suggested they were familiar with the kit (in a well that is you sorted sort of way) then looked very surprised when I started to talk about the experience of sleep disturbance through such as mask leaks and rain-out and even power cuts.

I have met more general sympathy and understanding about diabetes from those that don't have it themselves, than about CPAP matters from those that don't suffer OSA (with the above exceptions).

[symmit]

I wouldn't advise that anyone goes down the "DIY" route with CPAP/APAP machines or self diagnosis, there is too much to lose.
Let the experts make a decision, because they can be far more precise. What happens if you set the machine up wrong?

You pretty much can't, as long as there's no contra indications for CPAP (which an online supplier can go through with you) then there's not going to be any harm from using a wide open apap for a few nights and seeing if (a) you feel better (or hate it) and (b) what its data tells you!

[Tigers Fan]

No-one else noticed that Dan Logan - the guy with the stubborn family member - hasn't been around for a week?

[Sparticus]

No-one else noticed that Dan Logan - the guy with the stubborn family member - hasn't been around for a week?

Actually I was going to post something a few days ago but thought I'd give him the benefit or she

Dont see the point in posting something like this as a Joke??? surely its them who have waisted there time and Im sure someone got a benefit from it even if they didnt.

[don logan]

Actually I was going to post something a few days ago but thought I'd give him the benefit or she

Dont see the point in posting something like this as a Joke??? surely its them who have waisted there time and Im sure someone got a benefit from it even if they didnt.

I haven't wasted my time and have been looking at new posts when they come up almost daily. I have been showing the advice to the family member and they have just recieved their rental APAP. I'll post up the model number and how it's going in a few days time.

Showing them this thread has proved to them that people recieving treatment consider it to be life changing and it has also shown them that it will take a while to find the right mask and settings for the machine. They've gone full face mask by the way- Any opinions on this?

It's also shown them that there's a community of people that can offer advice and get them to get the most out of their machine, even if they are going about treatment in the wrong way by going DIY.

Thanks.

[Tigers Fan]

Full face is good in that it covers both mouth and nose breathers.

For us to help for here on in, we need specific information:-

Who did you get the machine from and what support are they giving/you buying.

Make and model of machine. Does it have a humidifier? (if not, consider getting one as a matter of importance).

Have you bought a Hose Lift and a heated hose (see Intus Health for both)?

Make and model of mask.

Machine pressure settings as supplied.

Read the manual of the machine and find out how to access the recorded data. We will want to know the AHI and 90% Pressure - usually averaged over 7 and 30 days. Compliance figure would be helpful - how long per night does s/he use the machine.

Good luck.

TF

[andysnorer]

I bet you jump when you saw that My Doctors advice after explaining it all to him was that it must be old age or bordem or its just you ????

A great medical diagnoses, he couldnt bring himself round to saying "I dont know" OK, If my results, my machine, my oximeter are all saying that my treatment is spot on, my preasures are good, my AHI, AI and HI are all spot on and my leaks are hardly visible on the machine (0.05) Then obviously it isnt my sleep apnea thats the problem. Ive also had bloods done for Diabeties, thyroid and whole load of other problems that I havent got.

The "EXPERTS" as you call them dont care! My doc didnt tell me to raise my pressure, my doc also didnt tell me to go and buy my readers from Israel or my data cards from Canada. He also didnt tell me what my results were. He told me everything is fine come back in 18 months and thats with an AHI of above 10!!!

My doctors wont even discuss my results after I put a complaint in about them When my appointment comes round, I will smile and say everythings fine thanks. My results are good, thanks to ME and the guys and gals on the forum who made me understand that its up to me to sort myself out cos no one else will.

..But hold the front page, Im not saying that your way is the wrong way, Its just right for me as everyone else is different and if your doc will sit down and discuss whats happening to you then hold on to it cos not all docs have the time or can be bothered

I now put the doctors into two categories - GP's (the ones who you would see for general medical matters/ailments/flu), and the "experts" - doctors/consultants at the sleep clinic.
I fully blame the GP's for my condition getting out of hand, and the mess which I now find myself in, because they failed to recognise it despite the all too obvious symptoms.
The doctors/consultants at the sleep clinic, on the other hand, have always been attentive and pro-active IMO, and without them I would probably be dead.
I don't know if you have had an overnight monitoring session (which is far more than just an oximeter), because this would highlight your problem, and possibly a cure.
I stick by what I say about "leave it to the experts", because you or I have no idea what is happening to us at night, we just know that we feel very tired if it all goes wrong.

[Fredxx]

Classing the GP as unhelpful and the experts as helpful obviously comes from your own experience. Mine is somewhat different (although I have to say the sleep clinic are a good helpful one). I acknowledge I an a lucky one.

My GPs are excellent, really helpful and have time to discuss your conditions and ways forwards.

My experience of the "experts" on the other hand means I put them in two categories. There are those who are happy to work with you the manage your condition, and those who take the attitude that they know best and you just have to do what they say. The latter tend to provide much worse service as they treat the condition as a thing in isolation, rather than treat you as a person who has the condition, has to live with it and deal with it along with anything else you have going on. Unfortunately there are still too many of these dinosaurs about. If you are in their camp and can't see a way out, self help is the only way.

[Sparticus]

Classing the GP as unhelpful and the experts as helpful obviously comes from your own experience. Mine is somewhat different (although I have to say the sleep clinic are a good helpful one). I acknowledge I an a lucky one.

My GPs are excellent, really helpful and have time to discuss your conditions and ways forwards.

My experience of the "experts" on the other hand means I put them in two categories. There are those who are happy to work with you the manage your condition, and those who take the attitude that they know best and you just have to do what they say. The latter tend to provide much worse service as they treat the condition as a thing in isolation, rather than treat you as a person who has the condition, has to live with it and deal with it along with anything else you have going on. Unfortunately there are still too many of these dinosaurs about. If you are in their camp and can't see a way out, self help is the only way.

"Self-help is the only way" Amen to that

[andysnorer]

Classing the GP as unhelpful and the experts as helpful obviously comes from your own experience. Mine is somewhat different (although I have to say the sleep clinic are a good helpful one). I acknowledge I an a lucky one.

My GPs are excellent, really helpful and have time to discuss your conditions and ways forwards.

My experience of the "experts" on the other hand means I put them in two categories. There are those who are happy to work with you the manage your condition, and those who take the attitude that they know best and you just have to do what they say. The latter tend to provide much worse service as they treat the condition as a thing in isolation, rather than treat you as a person who has the condition, has to live with it and deal with it along with anything else you have going on. Unfortunately there are still too many of these dinosaurs about. If you are in their camp and can't see a way out, self help is the only way.

I have to agree with everything which you have said here, because we can all only relate to our own experiences.
My GPs were the dinosaurs who made me feel like a time waster. Seven or eight years before I was diagnosed, my wife recorded me snoring and played it back to the doctors. They were not interested, and suggested that I try nasal strips, went to bed earlier or took more exercise (I don't know how I could have taken any more exercise).
I do find that certain consultants at the sleep clinic will not listen to you, but most are OK.
For instance, a couple of years ago I had an overnight monitoring session, because I was waking at regular intervals during the night (not apneas). The results showed that I was indeed waking regularly (and I still am to this day), but no further action has been taken. Because of my work situation (more out of work than in unfortunately), I have been unable to get the matter resolved.
I think that forums such as this one are a great idea, because we do get a chance to relate our own experiences and problems.
Perhaps the sleep clinics and consultants should listen to long time sufferers more, because we could hold the answers to many questions.

[Tigers Fan]

In April, I'm going to make another movie for the Consultant I've never met in four years to watch and listen to. She will also check events against a pulse oximeter read out. (Definite signs there of Southampton's attitude that you are 'cured' of OSA if you no longer snore.)

I wrote this alleged-to-exist consultant that I am tired though I use 20cm CPAP. Her response? Same test as she gives to folk to make a diagnosis - AV recording and pulse oximetry. Talk to the patient? Nah - she watches the movie after a couple of months have passed. Then we are handed over to her nurse lead clinic - staffed by people who cannot set up an APAP (with the wonderfufl exception of Ali, now returned).

You know and I know that I need a polysomnograph investigation. What do I get? Same old same old! Where - oh! where? - are my experts?

I so hope you read this Jane Wilkinson and make me eat an entire Humble Pie.

TF

[ChrisM]

I now put the doctors into two categories - GP's (the ones who you would see for general medical matters/ailments/flu), and the "experts" - doctors/consultants at the sleep clinic.

Like everything, it is a matter of individual knowledge and education. When I first presented myself at my GP, 10 years ago, with a self-diagnosis (based on conversations with a friend with OSA) that I would like to have a sleep study, he pretty much fobbed me off with "you're tired because you are overweight".

A month later, I presented to him a CD of "best moments" (having done an overnight audio recording myself, in leiu of a study). He looked at it, said "you obviously feel strongly about it" and made me an appointment with Peterborough General. Six weeks later, I was at Papworth, having my sleep study. Note that no-one, except me, ever listened to the CD - it was enough that I had gone to the bother to make it, that my GP took it to the next stage.

On the basis of that, you might think my GP is pretty crap. However, since then, he has alway taken an interest in my treatment; when I see him about other ailments, he asks about the OSA; and he and the clinic are definitely now OSA-aware, as I know of two other people they have sent on sleep studies since then.

[needaproperkip]

Stubborn Family Member.

Hello to all from a new hosehead! Actually I am the 'stubborn family member' of this thread! For years I had been waking feeling like I could sleep all day, no energy, falling asleep in front of the computer at work....my husband observed me for years gasping for air at night, going for long stretches without breathing, you all know the stuff. And those morning headaches! But my driving was fine, probably as I could concentrate, don't know, but I knew that if I went to the doc I would end up not being able to drive which would mean loss of job then loss of house. So I ploughed on.

Well, I was shown this forum by my son and read how CPAP was changing peoples' lives. But I was still very reluctant to go for a sleep study. I knew I had OSA (I am a nurse) so why bother? I just wanted to TRY a machine to see if it worked, but I was not going to get a prescription as that would make it all 'official'.

I found a rental outlet through whom I could rent an automatic machine without a prescription. The machine arrived on Friday, pre-set to what I suppose are 'standard' settings. The first night I lasted 5 minutes! I hadn't realised that APAP still had air blowing continuously at you - I thought no air would blow unless you obstructed then it would kick in to open the airway. The second night I lasted one hour, it was so uncomfortable. Then on Sunday we tweaked the settings so that the airflow was less and I could keep the thing on all night. Yesterday morning - up for work at the usual time - no headache, husband reports no struggling for air, feeling awake, went to work and didn't even yawn let alone fall asleep. My work colleagues knew something was different but couldn't say what, and I was still wide awake at gone 11pm last night! This morning - day off but up and doing rather than laying in bed trying to eke out another hour's sleep! What a difference!

Not the most comfortable contraption I must say (the mask is too small really) but it does the job. Even allowing for waking several times during the night to adjust the mask for leaks I still feel much better.

So I'll see the month out, then I'll buy providing I don't need a prescription or if I do I'll just carry on renting.

So all good! The machine is a RESmart Auto and the settings are RAMP 5 minutes starting at 4, treatment setting 6, then Maximum APAP 10. It's a full face mask as I usually mouth-breathe. Funny thing is if I deliberately obstruct, there isn't a sudden rush of air so I don't know how that works.

Anyway, the proof is in the pudding and Mr. Logan wasn't at all wasting his time, he got there eventually and all his hours of research paid off! Well done Mr. L. ! xxx

[don logan]

Did you have any problems with keeping your driving licence Chris?