Sorry Long Post - Advice Appreciated

herefishy wrote:I would wait till you get the interpretation, and your cpap machine, before switching, as your new doc would probably want another sleep test before treating you. I don't know anything about bipaps, but can you just raise your pressure to 22 on your present machine and see if that helps? Can you get sleepyhead reports?

sleepwiggler wrote:Please forgive me if I ramble.

First off Hello and Good Morning or Day depending on where you are.

Let me start with this, I have been on CPAP for 2.5 years now with a pressure of 15. I have never once in the 2 years woke up refreshed, feeling as I have slept well. Yes I have other conditions and take meds for them. To go back even further I have not felt rested in years. I would say a good 15 to 16 years.

I requested a second sleep study and it was performed two weeks ago. The reason for the request was my body was shutting down, by that I mean I was falling asleep driving, standing up talking to people, trouble concentrating, memory shot all to h*ll. Anyway doctor put me out of work for at least 3 months but did schedule me for a follow up for 3 months. Also increased my provigil from 400 mg a day to 600. I told him it would not work, I had already experimented. He was real snappy and said then there is nothing else I can do for your daytime issues. Needless to say I was not happy. Now I am furious. The sleep study has not even been interpreted and the RT at the sleep clinic told me she was not supposed to tell me but I need a BIPAP with a pressure of 22/18. My doctor is only 3 days a week, I am ready for a change. It has gotten to the point that my son has asked me about my memory issues. I am see a therapist and Psychiatrist as I have been diagnosed with Bipolar II. Currently the therapist is great and it helps to talk to someone neutral.

Back to sleep doctor if the results are not interpreted on Monday someone is getting an earful.

Anyway on to my questions/general comments:

1. Should I wait to get the sleep study interpreted and my new machine before changing doctors?
2. I don't mind being out of work (HA) I have excellent short term benefits. I get full pay from day one for 6 months and I need some time off to get myself straight. I don't want to get fired so better to be on STD.
3. How should I go about picking a new doctor, conduct some sort of interview process?

Janknitz wrote:THIS is a prime example of why we encourage people to review their own data. Your doctor was willing to let your career and life go in the toilet, prescribe useless drugs with significant side effects (because that's all he knows how to do) and you had to argue with him to get another sleep study.

If he looked at your data a few years ago he would have seen that you had an ineffective setting. If you had looked at your own data you would have recognized the problem and that would have given you information to be a better self advocate. Instead you suffered all this time, including the people around you. Imagine if you had fallen asleep at the wheel and hurt someone!

I hope you do find a better doctor. But more importantly, you have now learned the value of self-monitoring and self-advocacy so your health can be supportive even if you don't manage to find a better doctor. Don't wait around for someone else to take care of things for you. Nobody cares more for your health than you.

Jay Aitchsee wrote:Hello,
I suggest you stay with you current doctor until you get your machine. It is difficult to find a doctor that will "fit" well with a person's particular circumstances. I went through 5 sleep doctors before I found a keeper by scheduling appointments and trying too work with each one, but that takes an extraordinary amount of time. You can try to get referrals from other patients as well as your other doctors to help you in your search.

If you set your S9 in the CPAP mode to a pressure of 20 with an EPR of 3, it will approximate a BIPAP of 17/20.

How about updating your last thread where you were going to buy a video camera? Did you? How did it work?

BTW, Feb 2014, HHS "has taken action to give patients or a person designated by the patient a means of direct access to the patient’s completed laboratory test reports."
http://www.hhs.gov/ocr/privacy/hipaa/un ... cial/CLIA/
http://www.aafp.org/news/government-med ... trule.html

Wulfman... wrote:

sleepwiggler wrote:Please forgive me if I ramble.

First off Hello and Good Morning or Day depending on where you are.

Let me start with this, I have been on CPAP for 2.5 years now with a pressure of 15. I have never once in the 2 years woke up refreshed, feeling as I have slept well. Yes I have other conditions and take meds for them. To go back even further I have not felt rested in years. I would say a good 15 to 16 years.

I requested a second sleep study and it was performed two weeks ago. The reason for the request was my body was shutting down, by that I mean I was falling asleep driving, standing up talking to people, trouble concentrating, memory shot all to h*ll. Anyway doctor put me out of work for at least 3 months but did schedule me for a follow up for 3 months. Also increased my provigil from 400 mg a day to 600. I told him it would not work, I had already experimented. He was real snappy and said then there is nothing else I can do for your daytime issues. Needless to say I was not happy. Now I am furious. The sleep study has not even been interpreted and the RT at the sleep clinic told me she was not supposed to tell me but I need a BIPAP with a pressure of 22/18. My doctor is only 3 days a week, I am ready for a change. It has gotten to the point that my son has asked me about my memory issues. I am see a therapist and Psychiatrist as I have been diagnosed with Bipolar II. Currently the therapist is great and it helps to talk to someone neutral.

Back to sleep doctor if the results are not interpreted on Monday someone is getting an earful.

Anyway on to my questions/general comments:

1. Should I wait to get the sleep study interpreted and my new machine before changing doctors?
2. I don't mind being out of work (HA) I have excellent short term benefits. I get full pay from day one for 6 months and I need some time off to get myself straight. I don't want to get fired so better to be on STD.
3. How should I go about picking a new doctor, conduct some sort of interview process?

It sounds to me like you've not been using software to monitor your therapy in all this time....... Is that correct?
If that is true, then the question comes to mind..........."WHY NOT???" ResScan has been available for years and so has Sleepyhead.

You could have been having a "sleep study" EVERY NIGHT by using software and you wouldn't have needed another in-lab sleep study to find out why you haven't been feeling the benefits of your therapy.

I know, I'm kind of repeating what "Janknitz" said, but it's true. It's YOUR machine, YOUR therapy and YOUR health.


Den

For starters I did use res scan nit the beginning but I did not understand it and I was unaware of this forum. I then tried wake up to sleep from resmed and then they took it away. Shortly after that I found this forum started doing a little reading.I could not understand with an AHI of .5 why I was so exhausted. I made a few post and then downloaded sleepyhead head it took a couple days to figure it out and I am still learning. I have posted screen shots and followed recommendations but I had to wait to get into sleep doctor. They just will not write you a script for a machine. The doctor is only working part time because he was out for a medical issue. They tried to cancel my appointment and I said no and told them I was a doctor that I could not go any longer. Anyway saw the doctor and yes I had to request a new study. I had to semi argue with him over the provgil and even asked for an odometer script at the urging of another doctor. I was refused the oximeter script. I finally had enough money to by my own and just got it yesterday. So in short no I have not been using software all along, I am now and as I continue to learn I will be a better advocate for my health. Yes my machine my health and I have started taking it back. I will never again sit back and be silent. Doctors will listen to me or I move on because I am wasting my time or money any longer. I am not other people my family or myself at risk any longer. One other thing I am the sole provider in my house well sort of my wife is disabled and I have a 15 year old son so by the time I get home from work all exhausted etc... i didn't want to look at more data so I saved it for the weekend along with other things. I am not trying to make excuses but trying to explain that even though I have been on CPAP for over two years I am still learning and have not been a member of the forum long I wish I had known about it in the beginning maybe I would have been a better advocate and not be in th shape I am in. Now I promote this forum any chance I get so others like us can be coming aware and get help with questions.

.

JDS74 wrote:Sorry it took so long for you to get to this point but perhaps some good progress will happen now.

What oximeter did you get? Several models will allow loading data into SleepyHead and then give you an integrated report. If you need help with that process, just ask. It might be possible that you need supplemental O2 at night. The oximeter readings will show that. Do you have a headache in the morning when you first get up. That is sometimes a symptom of a need for O2.

Now that you are tracking with SleepyHead, can you post an image of a recent report? There might be something there that will help.

Did you mention the use of the ResMed sleep monitor or was that someone else?
If so, does it show frequent awakenings or restless sleep?

Any progress in getting a copy of the sleep study report? That would help a lot.