What would you change?

chrisp · Post by **chrisp** » Sun Jan 23, 2005 4:42 pm

Good for you Dan, I 'd say The docs really don't know that much after the general diagnosis is made. They leave it up to a DME that knows even less. You are on the right road now. Lots of knowledge here. Have you checked out https://www.cpap.com for equipment at low prices. A must if you are going to DIY.

Cheers,

Chris

Clownshow · Post by **Clownshow** » Sun Jan 23, 2005 5:03 pm

I hope D.I.Y folks are getting sleep studies done by trained professionals though right???

RAWTSgirl · Post by **RAWTSgirl** » Sun Jan 23, 2005 5:03 pm

I have to say overall that my gp has been excellent. I have only been seeing her a short time and I suggested to her that I think I have sleep problems as I am tired all the time. Instead of seeing it as a part of my depression (which I have been battling for 10 years now) she saw it as an individual complaint. She referred me to the specialist straight away. I really appreciated that.

The one thing I have found the worst about it is how isolated and lost I feel about getting treated for it. It has been said but if it was another illness there would be more support.

I had to do a lot of research and yet I feel like the professionals have treated me like someone who is not capable of understanding what is said to me. My doctor when he told me the results showed me some numbers and said what they should be without explaining what it actually was. I walked out feeling confident that he would 'fix' me but not really sure what my test results were and why they were so bad. Next time I go back to him I am going to make him go over all of it. It is not that I am not a smart woman, I managed to work 13 hour days, do 2 post graduate subjects and not fall apart in the last 6 months whilst I know the apnea was getting worse but his attitude was "you are very tired so I won't explain this to you now". Hmm I get the cranky pants out when I think of it.

Additionally without this group I would not even know half the things I know about cpap and masks and life with apnea... and I know I don't know very much about it now.

However I am trying to stick to the positive, that my doctor did believe me, that I have a diagnosis and it is not all in my head and I am getting treatment, new and uncomfortable though it is.

rested gal · Post by **rested gal** » Mon Jan 24, 2005 4:18 am

clownshow, you said:

I hope D.I.Y folks are getting sleep studies done by trained professionals though right???

A sleep study by a trained professional is the best way to go about it, yep.

Ummmmm....ok, I'll 'fess up:

Dec 07, 2004 Post subject: need some advice, testimonies on Cpap usage, help

RAWTSgirl, good for you! You're lucky to have a good doctor, and you're right about educating yourself about this sleep disorder and how to treat it. Gotta be your own advocate in so many ways when it comes to sleep apnea.

dankazoo: Dan, you're most definitely on the right track, imho.... research, research - for yourself.

RubyKat · Post by **RubyKat** » Tue Jan 25, 2005 5:29 pm

Oddly enough, the past week has really pointed out to me how fortunate I've been with my sleep apnea. Sure, I could say, hey, I wish I'd been diagnosed ten years ago, but all the things that have come together to help me with this -- my family, my doctor, my having private health insurance (which I didn't have ten years ago), my friends (turns out that one of my close internet friends also has sleep apnea, she was so much help -- and I didn't know her ten years ago) -- and the point that, yes, I'm 39, but, hey, that still gives me the rest of my life, which is going to be longer now that I'm on CPAP. Considering the number of people here who've gone much longer than me in getting diagnosed...

I just have to conclude that God has been looking after me.

raneyday · Post by **raneyday** » Wed Jan 26, 2005 4:45 pm

I wish my respiratory therapist hadn't acted like this was going to the miracle cure to everything--you'll lose weight, she said, your blood pressure will go down, you'll feel more energetic, etc., etc. Now I've started using the machine, but I can't even keep it on all night, I feel like a failure. Reading what everybody here has said makes me feel much better about my progress. Thanks, all.

littlebaddow · Post by **littlebaddow** » Wed Jan 26, 2005 4:53 pm

Raneyday, I also had a doc who promoted the miracle cure. I think he did it unwittingly, perhaps intending it as an encouraging remark, but when you feel terrible you hang on to words like 'I'm sure you'll notice a significant improvement very quickly'
Like you, I found much comfort in the real experience of people in this forum, so readily shared, which provided support during the difficult early days.

sharonokc · Post by **sharonokc** » Thu Jan 27, 2005 10:42 pm

Other than the expense of the sleep study, I would change the equipment selection procedure. Many of the local companies carry what they consider the best choices, 3 or 4 mask, 2 machines.

One's mask is extremely individual, faces and needs are different. It would be lovely to sleep in a mask for several nights before purchasing it.

SleepyGuy · Post by **SleepyGuy** » Fri Jan 28, 2005 1:00 pm

> Now I've started using the machine, but I can't even
> keep it on all night, I feel like a failure.

Not staying on the machine all night is not uncommon. I'm having problems with it too. How long have you been on it?

Machine	Mask

What would you change?

my feelings