Cheyne Stokes questions and my graph

Ok, I do like what you're saying, and I'm going to honestly consider it. I might also, or instead, get an O2 sensor that I can leave on all night that will record my levels. I have heard I can buy one like this online, but haven't looked into it yet really. Let me add a few things to the equation as to why I might do this instead... however, I really will honestly consider going ahead with the full in lab study sooner than later. Believe me, I feel the exact same way about a stroke, and I'm scared of either one.. though probably being a vegetable more than dying, same as you.

It's hard to remember to pass on every piece of information. It sometimes just becomes too much to write all at once, and I also just forget things with all the reading and theorizing I've done, so forgive me if something seems huge to you and I'm just telling you now. I didn't mean to leave it out.

I picked up the summary of my home sleep study from my doctors office the day that I went to see the specialist. I actually only spent less than 1 minute at 80% O2 level. I believe "less than 1 minute" was how it was phrased. The rest of the time I was above 93%.

The klonopin is BAD stuff. I knew there were some pretty bad things about it already, but after looking into it more recently, I actually do think it might be a big factor here. The higher the dose, the worse the side effects, and I am on a higher dose than I realized compared to most people on it. I take 2mg right before bed, sometimes 3. The max dose per day is 4mg. I spent hours combing through anxiety forums, and even recreational drug forums, and this is a pretty high dose for either use... there were only a few people up to this dose, and very few above it. So ironically, the specialist was half right that this is technically a high dose. She was wrong in the sense that she wasn't trying to be helpful at that point and was just trying to mock me(trust me, you'd agree if you were there) and she was wrong about this being the reason I "feel drugged" in the morning because it never did that to me for the first few years and also because I know my body and I know my "highs" and this feeling is not from klonopin. Not in the sense she means anyway.

So moving on, it's side effects also get worse the longer you use it and I've been on it for 10 yrs or so. I haven't found much more explanation than "the longer it's used chronically, the worse the side effects become", but it does say at least this in some reliable sources. It does all kinds of weird things to your breathing, nervous system, REM sleep, breathing patterns, timing of your sleep cycles and stages. A lot of this I didn't know. And most of what I read really is from legit sources or I find a legit source to back it up before I fully buy into it. I'm not the typical internet "blog" researcher. I actually just found an abstract just tonight as I was writing you back that directly says "Although the benzodiazepines may reduce sleep fragmentation, their long-term use may also cause health problems, such as complete obstructive sleep apnea in heavy snorers ..." Here's the link if you're interested. http://www.ncbi.nlm.nih.gov/pubmed/1968716

I've repeatedly gone over all the variables of the first night and what could have been different. I had a large amount of caffeine right up until I went to sleep, and caffeine can be a bronchodilator, but I've had probably close to that amount on other days I've used the machine and still no good readings. so I'm mostly ruling that one out. I may have smoked a bit less that day because I was out and about more, but again something I've recreated and had bad readings still. There's lots of other little possibly variables I've considered, but I've either ruled them out or they are very unlikely. The single one that seems the most obvious and likely is that I think there is a good chance I forgot to take both my medications that night because of how tired I was and because of how excited and preoccupied I was after fighting back and forth all day to get the machine that day. Then spending a couple hours reading about it and getting it all setup and then going straight to bed. I haven't been able to recreate that one. I mostly don't need the pain meds or the anxiety meds anymore for their intended purposes, but they are both very hard to get off, so I haven't tried in years. So a very few times, if I'm sleepy enough to literally not think about it AT ALL and something about my normal routine is off so that I do forget, I can forget and not even notice. But if I try to plan it, and think about it in the slightest, I can't get my brain to stop thinking I need them. and then I can't go without them.

So I'm not set on that being for sure, but I think it's a good possibility... and I do think there's at least a chance that the meds, particularly the klonopin, could be a big part of the obstructive apnea, the central apneas, and the strange breathing patterns. So money IS still a partial concern here, my deductible resets at the end of the year, and I think it's going to take a good while for me to taper off the klonopin. So if klonopin might be the problem and I do an in lab study now, I will get a lot of incorrect results that may very well change later when I'm off it and I'll need another one... which means probably over a grand right now, and then the same cost again in 6 months or whenever I can get off of everything. So I wonder if an overnight, recording, O2 sensor is a better first step. I really don't know though.

zeropoint101 wrote:Ok, I do like what you're saying, and I'm going to honestly consider it. I might also, or instead, get an O2 sensor that I can leave on all night that will record my levels. I have heard I can buy one like this online, but haven't looked into it yet really. .

CMS50I, aliexpress, under 100$

Here's where I got my overnight pulse ox
http://www.pulseoxstore.com/Downloadable-Pulse-Ox.html
I chose them because Kevin is there and ....is great for software support for these things and I had a feeling I might need it...and I was right.
I got the cheap CMS 50 D Plus because I knew that I wouldn't be using it often and I was right there....if I planned to use it more I would have stepped up a little.
You can find them a little cheaper elsewhere if you look around. Just make sure you know what you are getting and that you get the correct software.

If you didn't spend much time below 90% ....that's a plus....My O2 went to 73%.

Yes, I know klonopin is nasty stuff. I just don't know if it is to blame for the central Cheyne Stokes like response that you appear to have had....you need to get off that crap anyway...so good luck with that one.
Tramadol isn't nearly so nasty and just recently got bumped into the Class IV drugs. If it caused centrals....I would be in a world of hurt.

Try really hard to get that in lab sleep study done before the end of the year. I have a feeling if you wait for the deductible to get met next year that you will keep putting it off. I just don't want you to go up the DeNile River...that's why I am harping.

Good luck

Thank you. I will definitely need the luck getting off both these meds. The ultram, for me personally anyway, is pretty addictive stuff too when I start trying to go without it. But the klonopin is definitely the one I'm more anxious to get off of after the recent reading I've done. Blech. I wish I had never taken it to begin with, but my original doctor just said "oh, your friend told you about benzos? sure, have some! they're great! NEXT PATIENT!!"

I don't mind the "harping" at all. It does make me rethink things. What I'm really hoping with all this is that I can find a doctor that I can at least have a teeny tiny amount of trust in so I don't feel like I have to make every decision about this on my own without any professional input. That would make things a lot easier, but it's probably not likely though. Thanks as always and I'll let you know what happens.