Sleep Dr. wants more CO2 (?), continue sedatives

I saw my sleep specialist today for a follow up visit to my December visit, when he prescribed low-dose lithium to address my recurrent insomnia. I've been 100% compliant with my CPAP for years, but had been taking ambien some nights, clonipin others, and just not sleeping on the nights I took nothing. It was pretty bad. He wanted me to continue ambien while I took a low dose of lithium. I've done as he suggested, and as some will know from another thread, the change has been amazing--I've been doing really well--I go to bed, I fall asleep, and I sleep all night. (Article reference for my treatment, for those who might be interested, thanks to jnk...: https://academic.oup.com/sleep/article- ... 09/3781527)

I saw the doctor again today, and asked about whether I should be trying to wean off the ambien, now that the lithium is working so well. He said that I could, if it was important to me, but he felt there were trade offs. He didn't discount studies showing that such meds increased risk of alzheimer's, but he also said that, in his experience, sedatives helped regulate breathing, and he felt that, for me, the benefits might outweigh the risks.

He looked at my detailed sleep data, and his opinion is that my breathing was more spiky than he'd like--less steady, when you compare inhalation and exhalation. (Not sure I'm recounting all of this correctly, but I'm trying...) He said that most doctors would be totally fine with my respiratory graphs, but that he likes to work to make things as good as they can be. He's a perfectionist. But he said I totally didn't have to change anything unless I wanted to. I said I wouldn't just now, as things are SO much better tan they were already. But he talked about doing another sleep study and something about trying to have more CO2? I found the following study (from my doctor) that might address this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3998090/

Does anyone have any experience with all of this? My numbers are good--AHI under 3 always, usually under 1.5.

I confess I'm having trouble with sleepyhead, whichI used to use just fine, but which I can't seem (now) to get to show detailed data. That' said, my sleep doctor used it (sleepyhead) with my data card and saw all of the detailed data, so I am clearly doing something wrong.

svh wrote:I've done as he suggested, and as some will know from another thread, the change has been amazing--I've been doing really well

That's the main thing. It's hard to argue with success.

svh wrote:sedatives helped regulate breathing, and he felt that, for me, the benefits might outweigh the risks.

He is giving customized recommendations based on the unique particulars of your challenges.

svh wrote:Does anyone have any experience with all of this? My numbers are good--AHI under 3 always, usually under 1.5.

I believe that few of us have had experiences with such individualized care from such a cutting-edge doc. He is looking beyond AHI.

svh wrote:I confess I'm having trouble with sleepyhead,

If your research doesn't pan out on that, you may want to consider starting a thread with that statement in order to catch the eyes of the SH experts.

I think you are in exceptional hands. It warms my heart to hear it. Normally I'm anti-drug and especially anti-sedative for sleep issues. But in your case the healing you are getting with the fixed sleep may make the drug risks a lower-priority factor for now.

That said, trust your gut instinct. No one knows your body like you do, so give your medical team the benefit of your intuition so that they can trust you in much the way you trust them. Ideally it's a team effort.

Try creating a new profile in SleepyHead and downloading and see if the detailed data is available in the new profile.
If the doctor could see the data in his SH ...it's gotta be there.
If no joy with the new profile start a new thread devoted to the SH problem...be sure to include which version of SH...what computer operating system you are using and exactly what you have tried along with a screen shot of what you are seeing.

svh wrote: He looked at my detailed sleep data, and his opinion is that my breathing was more spiky than he'd like--less steady, when you compare inhalation and exhalation. (Not sure I'm recounting all of this correctly, but I'm trying...) He said that most doctors would be totally fine with my respiratory graphs...
I confess I'm having trouble with sleepyhead, whichI used to use just fine, but which I can't seem (now) to get to show detailed data. That' said, my sleep doctor used it (sleepyhead) with my data card and saw all of the detailed data, so I am clearly doing something wrong.

Could you share with us any portion of the interaction that might illustrate any objections and solutions to them that led him to using SH in your treatment? Was he aware of it before? Did he offer any input that might help in understanding the various charts and how they interact? What, if any, questions did he ask about it?

Re. my doctor's use of Sleepyhead software:

I visited this doctor for the first time in December. He normally prefers patients to use Respironics machines, because he says he can get the full data over the air, by wifi. He said that the data ResMed sends doctors via wifi is less detailed. That said, I came to him using a ResMed S9, and as I've mentioned in another thread, when I tried the DreamStation, I found it uncomfortable, so am using an Autoset 10 instead.

I brought my data chip with me to my two visits. Both times, he popped it into his laptop, and fired up Sleepyhead to read it. He seemed entirely familiar with the SH software and navigated it deftly, pointing out various things to me.

I'm at work all day today, so may not be able to tinker with my own SH downloading until tomorrow.

Again, I really appreciate how you are all so willing to engage and help. If there's anything else I can explain, please don't hesitate to ask.

I re-installed SH on a different computer, and now everything is working perfectly. I can see all of my data. Yay! Thanks to everyone.

Jnk--I agree, I am getting amazing care. I feel extremely fortunate.

I am also thankful for this board--since I joined in 2006, you guys have always been there for me (and everyone else)--ready to answer any question and to offer encouragement. You are a wonderful resource.

jnk... wrote: ↑

Wed Jan 31, 2018 11:05 pm

svh wrote:I've done as he suggested, and as some will know from another thread, the change has been amazing--I've been doing really well

That's the main thing. It's hard to argue with success.

I think you are in exceptional hands. It warms my heart to hear it. Normally I'm anti-drug and especially anti-sedative for sleep issues. But in your case the healing you are getting with the fixed sleep may make the drug risks a lower-priority factor for now.

That said, trust your gut instinct. No one knows your body like you do, so give your medical team the benefit of your intuition so that they can trust you in much the way you trust them. Ideally it's a team effort.

I must have missed this thread.. Thanks for the info and Refs.

As to the gut instinct, here my two sent.

The gut instinct, also referred to as the 2nd brain, is connected with a large network of nerve cells to the main brain. The transfer of neuronal information between the 2 brains is amazing and so far we only see the iceberg sticking out of the water. Sad is that we no longer listen to our 2nd brain. We not only have lost our instincts but have learned to cut out the perception of our 2nd brain.

Try this ! Brain 1: I need a coffee. And while you make the coffee, smell the coffee... The gut brain is screaming out NOOOOooooo sending out pain, stomach burns, toxines... But Brain 1 just cuts him off ! We have learned to no longer feel that pain... You need to relax you need to listen, just listen... and soon you will be able to feel it.

More amazing is you can do it with any fruit. The gut brain will tell you NO not this one or I will make you throw up. Or, if you listen carefully he will tell you what you need, what you need right now. It is the fruit right next to it. You may have no idea what, why, you don’t even know the fruit. Never tried it ! You look for the name and you still have no clue what it could taste like. Your GutBrain knows ! He recognizes the color, and so, the vitamines, the mineral he is craving for. If you can let go and listen, you may try it and the GutBrain will send out the reward, the great feeling. It is like the sun is shining inside your self... Be leave and listen