[Diagnosis] Ridiculously-high AHI - I Comply or I Die an Untimely Death

[Angstromicus]

Greetings everyone, I'm fairly new to therapy, this time being my third attempt at compliance. I've had silly problems with, this, that, or the other that get in the way of compliance, but now things are very serious. I'm 29 years old btw.

So, first off, when I was first dx'd with Sleep Apnea I think 3 years ago, I had an AHI of about 20 - central mostly - treatable by CPAP. I weighed about 250 lbs and took Olanzapine (an abomination of a medicine to be on, I used to be so thin and healthy). Having compliance issues, the machine went back and I just lived with sleep apnea.

Fast forward to about two months or so ago I guess, and I weigh about 285 lbs and am on vraylar now with 2-4mg clonazepam as needed (about once every 2-4 days) to help with sleep. I went through not one, not two, but THREE sleep studies. I just saw my pulmonologist yesterday and he informed me that I now have basically purely obstructive sleep apnea (the machine reports central though with airway-open events, but I've read this can be inaccurate), with a profound AHI of 107.

Ok, I want to pause a minute and reflect on this. Severe sleep apnea is an AHI of 30 and above, right? Just 3 years ago and maybe about 40 pounds less on meds that, if I'm right, are more likely to cause sleep apnea, I had moderate sleep apnea. Just what in the world is going on to cause such a progression? Even the pulmonologist isn't sure! If it was central sleep apnea then we could say its some kind of neuro-degenerative disease or progressive brain abnormality and would be reason to do further tests, but OSA? I know being obese and weighing more now than I did then contributes to OSA, but I'm utterly bewildered because the human body is capable of supporting upwards of even 600 lbs without AHI as deadly serious as mine I'm sure (somebody correct me I'm assuming here). Edit: And I'd think central sleep apnea or other respiratory conditions would be present with such a bad AHI, but both seem to be ruled out.

I wish I had more data from my machine to post here (I'm not sleeping tonight because of a head cold), but I will do my best to comply. Currently, I have three problems with compliance - panic, aerophagia, and an annoyingly under-evolved 30,000-year-old cave-man subconscious with no reasoning ability that takes over in my sleep and says, effectively, "*Grunt* thingy on face, must take off," and, to my extreme frustration, I - it - takes the mask off my face WITHIN AN HOUR OR SO OF MY SLEEP with it lying by my bedside blowing air (whenever I manage to fall asleep before panic / bloating). It's been this way even with the first machine with much lower pressure. So, now, I've Jerry-rigged a crane as a pivot-point for an easily-tripped magnetic alarm > 100db right behind my head (had to invent this contraption myself). Now, once I try it out to effect, I dare my subconscious to interfere with my therapy .

Anyways, sorry for the long post and thanks for reading, I look forward to any replies  .

Edit: I'm using the machine as prescribed in "S" mode.

[Walla Walla]

You've got a lot of things going on at the same time. First thing I's suggest is downloading sleepyhead software and posting some charts on here. It would help everyone here be able to help you better. The Clear Airway events may be caused by the medication your taking. No matter what the cause it can cause you problems with sleep. Also the weight can and does make a big difference in sleep apnea. Losing weight doesn't usually make it go away but it can help improve the condition.

Keep at it and post those charts we can help you get through it.

[Angstromicus]

Thanks and will do Walla Walla . No sleep this morning but tonight I plan to get some good data, the chin strap should reduce aerophagia and 4mg klonopin should do the job of staving off any panic . BTW, here's the rig I have going now. The alarm in the background is a SkiL-Care I picked up at a local med supply store, but its probably on amazon too. The main shaft is a hose management system (actually pretty durable, made of iron) available on online cpap stores, and I duct-taped a couple of wooden road-side stakes to it for length.

   

[Gideon]

Ok. We do need the charts but watch tv or read something you like to do to help get used to the mask. I do not mean for just 5 minutes. Use it all night if you are not falling asleep.

Get a copy of your sleep studies and post them. Why, well I don't trust the lack of Central's without seeing it.

[Sleeprider]

I agree with Fred, and would bet your problem is improperly diagnosed central or complex apnea which is not helped by your Vauto at high pressure. Sleepyhead may tell us what we need to know, but a sleep study detailed results should have some valuable clues. Be sure to obtain and keep complete copies ( not just summary recommendations) of all diagnostic and titration sleep studies. They have a habit of disappearing from doctor's files over the years and have continuing value to you to avoid future sleep studies.

[SarcasticDave94]

Welcome to the Apnea Board. Not wishing to beat a dead horse, but yes get Sleepyhead and get us the data.

What's going on? Issues can be the increased weight, the meds, central apnea, other things not mentioned.

My focus would key in on the probability of centrals being a bigger than expected issue. If true, you may be on the wrong machine.

For now though, we're only guessing until charts show up. IMO guessing is dangerous in situations just like this. Personally, I feel some Ducks (quack doc) do just that, guess at what they're doing involving treating apneas. Not acceptable to me, and I'd assume it wouldn't be acceptable to you either.

[Angstromicus]

Very well guys, most excellent. I'll definitely see about getting copies of my medical records once I get my sleep straight again and will do my best to get some some sleepy-head data after at least around 4 hours of sleep as the Dr. recommends. I practiced just earlier now and got 2 hours on the machine before fully waking up (yay ).

Thanks very much in advance .

[Angstromicus]

Looks like I did get some data after all from the little bit of sleep I got this morning. My AHI was shocking even with therapy. I did take 4mg clonazepam but have done the same at all the the sleep studies and apparently they were able to lower my AHI to below 5 with the same settings. Could the clonazepam be causing such big problems?

   

[SarcasticDave94]

Very well guys, most excellent. I'll definitely see about getting copies of my medical records once I get my sleep straight again and will do my best to get some some sleepy-head data after at least around 4 hours of sleep as the Dr. recommends. I practiced just earlier now and got 2 hours on the machine before fully waking up (yay ).

Thanks very much in advance .

Good, keep up the progress. Keep practicing.

[zzzlessinMS]

My AHI went from 25 to 75 over a period of 10 years WHILE being 100% compliant on CPAP. My weight was up and down a bit but really not much differemce. I have been on clonazepam for 6 years. It has not caused any central apnea problems for me. You are quite a bit younger so you don't have as much problem with muscles of throat losing tone like those of us in the senior age group. There are exercises you can do to firm up those muscles (find online). With weight gain, some add more fatty tissue in palate and back of throat which can close airway even more. Then with weight loss this extra fat becomes loose and vibrates causing snoring and more airway problems. You will likely need xPAP the rest of your life.

But please do take OSA very serious. My sister died at age of 50 from diagnosed but untreated OSA and on pain meds that weaken breathing effort. Carrie Fisher (Star Wars) also died from combination of sleep apnea and meds.