Discouraged....brain damage?

So I saw my doctor today. First of all, he was annoyed that I didn't get tested on a bipap at my last study. (On auto-adjusting CPAP, my pressure keeps hitting the max and he wants to see if the BiPap will work better). He said he's not sure why I wasn't tested with the bipap. But, at least for the time being we are trying to avoid another sleep study and he upped the lower level of the the CPAP pressure so at least it won't drop too low. I don't know how that will help but whatever, I'll try it tonight.

THEN he told me that sometimes if a patient is compliant and at the correct levels and still having issues with sleepiness, there is a chance it is due to permanent damage (maybe he said "changes") in the sleep centers of the brain. In which case there is a medication they can prescribe to help with alertness during the day. But it would lower the efficacy of my birth control pills and I don't want to go there. Actually, I really don't want to get on another medication, to be honest. Keeping the prescriptions filled is such a pain.

So I think we will try this new pressure, then try the BiPap, then talk about the medication again. Something like that. But I am so bummed out. The treatment was working when I first started! I didn't feel not-sleepy, but I definitely felt much better than before treatment. But ever since I got really really sick in January and recovered, I have just not gotten as much of an effect from the treatment.

I'm really done with being exhausted all the time. Have any other "hopeless cases" tried the medication route? Did it help?

Starpilot wrote:So I saw my doctor today. First of all, he was annoyed that I didn't get tested on a bipap at my last study. (On auto-adjusting CPAP, my pressure keeps hitting the max and he wants to see if the BiPap will work better). He said he's not sure why I wasn't tested with the bipap. But, at least for the time being we are trying to avoid another sleep study and he upped the lower level of the the CPAP pressure so at least it won't drop too low. I don't know how that will help but whatever, I'll try it tonight.

THEN he told me that sometimes if a patient is compliant and at the correct levels and still having issues with sleepiness, there is a chance it is due to permanent damage (maybe he said "changes") in the sleep centers of the brain. In which case there is a medication they can prescribe to help with alertness during the day. But it would lower the efficacy of my birth control pills and I don't want to go there. Actually, I really don't want to get on another medication, to be honest. Keeping the prescriptions filled is such a pain.

So I think we will try this new pressure, then try the BiPap, then talk about the medication again. Something like that. But I am so bummed out. The treatment was working when I first started! I didn't feel not-sleepy, but I definitely felt much better than before treatment. But ever since I got really really sick in January and recovered, I have just not gotten as much of an effect from the treatment.

I'm really done with being exhausted all the time. Have any other "hopeless cases" tried the medication route? Did it help?

If I were you I think I would spend some quality time in the medical literature looking carefully at how effective (or not) any drug or therapy proscribed to me is in fact found to be. Honestly, it is your body, they will not give you another one, so you really do need to know!!!

Also, when you combine drugs you compound the possibility that they will interact in a negative way. I think it is best to "just say no to drugs" whenever you can.

I think moving the other direction is to use a dietitian and a personal trainer and other methods that are known to work.

Starpilot,

In my humble opinion, it seems like in your case your continuing sleepiness is probably not due to brain damage and more likely due to suboptimal CPAP treatment. If it was due to brain damage, there wouldn't have been a point where you felt a lot better from the treatment.

You're probably still having arousals even though your AHI is low. During sleep studies the doctors only look at reducing the AHI and often don't look at the EEG results for arousals (really doc?!? talk about poor medical practice) so they don't get the CPAP pressure titrated properly.

Thanks folks. Is it the case that sometimes people starting therapy have great results at first and then the effectiveness tapers off? I can imagine this scenario if you (me) have had sleep apnea for a long long time and then it is much LESS so you notice the change but it is still a problem so gradually it is less helpful?

I would love to solve this without turning to medication...

You're using a nasal mask, but what are the chances that you, like so many of us, end up with your mouth open most of the night once asleep, losing all the therapy air to the breeze? Have you ever tried a full face mask, or at least a chin strap or taping? You won't feel good at all if you're not being treated and losing air all night will do that.

Good point Julie. I was taping for a few nights there but falling asleep with the tape is really uncomfortable. I don't know if its how I breathe or what, but when I'm first falling asleep, its like air starts building up in my stomach but I can release it by doing a long exhale out of my mouth. I have to do this a couple times before I am comfortable enough to sleep. When I wake up at night though, I don't have this issue so maybe its something about my body getting in sync with the machine before I can sleep?

The other thing is that I was clenching my jaw a lot so I started using my night guard again and the combination of night guard + tape was really uncomfortable. But maybe I'll give it another shot.

With a FF mask, you can exhale all you want, but won't lose therapy air... some people find that lowering their bottom pressure just a bit (.5) can help aerophagia, as can other things (if you do a forum search for it, there's a lot of info).

Last night I tried taping. It was pretty uncomfortable trying to breathe while falling asleep (I kept peeling the corner back to breathe out when the air started building up in my stomach). Sometimes I felt like I was struggling to get enough air OUT. But anyway I did fall asleep with the tape on, and with my adjusted settings.

I feel a _little_ better this morning. Not full of vim and vigor, but at least not seriously dragging.

I wake up SO MANY times in the night. I don't know why. I didn't count last night but at least four or five times when I was cognizant of the fact I was awake. I don't know if I wake up when I'm having an event, or because my body is stiff from sleeping in one position (usually I wake up and have to shift positions before I can go back to sleep).

I'm hoping this afternoon I'll have a chance to post some graphs and get some feedback on them. I still can't really read the graphs. Thanks all!

Taping may be uncomfortable, but you should at least try some FF masks.

Starpilot wrote:Thanks folks. Is it the case that sometimes people starting therapy have great results at first and then the effectiveness tapers off?

Yes indeed. I hear this often here.

Starpilot wrote:I can imagine this scenario if you (me) have had sleep apnea for a long long time and then it is much LESS so you notice the change but it is still a problem so gradually it is less helpful?

I would love to solve this without turning to medication...

They seem to think that Sleep Apnea is somehow static. I have never ever known it to be so. Differant data every night.

Through the long term use of a dietitian, personal trainer, well managed CPAP treatment, reflexology, acupressure, acupuncture, and several modes of meditation I now run with a pressure about 50% of the highest it was set to (about three years ago now above ten years into CPAP use). I do sleep much better.

There are other things I have not the time to mention.

Simply you can get better but CPAP is only one little thing in the mix.

Starpilot wrote:So I saw my doctor today. First of all, he was annoyed that I didn't get tested on a bipap at my last study. (On auto-adjusting CPAP, my pressure keeps hitting the max and he wants to see if the BiPap will work better). He said he's not sure why I wasn't tested with the bipap...

Why? Either he neglected to specify it or the lab neglected to follow orders. Either way, you should not have to suffer the consequences of someone else's mistake. If he thought you were getting tested on a bipap, someone screwed up. Mistakes happen, but I think you should be retested at no expense to you and forget this mess with an auto that is topping out and clearly not fully working well for you. Except... what does your data look like? Are you absolutely certain your maxing out the pressure isn't due to excessive leaks? I think you should look at your machine data and if your high pressure need is not due to leaks, press him to go forward NOW. Time is too precious to waste it futzing around and continuing in an error.

In general, I'd just like to encourage you that until you know your treatment is optimized and any other contributors are addressed, there is still room and reason to be hopeful about how much better things can be. I think you are far from at the end of the road on this journey towards feeling better.

That brain damage can happen:


Sleep. 2007 Mar;30(3):305-11.

Proton magnetic resonance spectroscopy study of brain metabolism in obstructive sleep apnoea syndrome before and after continuous positive airway pressure treatment.

Tonon C1, Vetrugno R, Lodi R, Gallassi R, Provini F, Iotti S, Plazzi G, Montagna P, Lugaresi E, Barbiroli B.


Abstract

STUDY OBJECTIVES:

Obstructive sleep apnoea syndrome (OSAS) causes sleep related oxygen desaturation, excessive daytime sleepiness (EDS), and cognitive impairment. The role of hypoxic brain damage, sleep fragmentation, and the associated comorbidities (hypertension, vascular disorders) in the pathogenesis of cognitive deficits remains controversial. The aim of this study was to evaluate the cerebral metabolism of OSAS patients in vivo before and after CPAP treatment.

DESIGN AND PATIENTS:

Fourteen OSAS patients without cardiovascular or cerebrovascular impairment underwent the same protocol before and after 6 months of CPAP including: overnight videopolysomnography (VPSG), Multiple Sleep Latency Test (MSLT), and within the next 2 days neuropsychological and 1H-MRS evaluations. Single voxel 1H-MRS was performed in the parietal-occipital cortex, and absolute concentrations of N-acetyl-aspartate (NAA), creatine, and choline were measured, acquiring spectra at multiple echo-times and using water as internal standard. Ten matched controls were also studied.

RESULTS:

OSAS patients had a mean RDI of 58/hr, a mean arousal index of 57/hr, and a mean nadir SpO2 of 71%. Before CPAP, all patients showed a normal global cognitive functioning, with only a small number of pathological tasks in working memory and attention tests in a minority of patients. CPAP therapy was effective in resolving sleep apnoea and normalizing sleep structure, and improving EDS and neuropsychological alterations. Before CPAP treatment cortical [NAA] in OSAS (11.86 mM +/- 0.80, mean +/- SD) was significantly lower than in controls (12.85 +/- 0.93; P = 0.01) and positively correlated with minimum SpO2 during sleep (r = 0.69; P = 0.006) and MSLT scores (r = 0.62; P = 0.01). Cortical [NAA] reduction persisted after therapy (11.94 +/- 1.33; P = 0.87 versus pre-CPAP).

CONCLUSIONS:

OSAS patients have cortical metabolic changes consistent with neuronal loss even in the absence of vascular comorbidities. Metabolic changes persisted after CPAP in the absence of EDS, nocturnal arousals, and major cognitive deficits, likely related to hypoxic damage prior to CPAP treatment.

avi123 wrote:That brain damage can happen...

I believe that. I personally have residual cognitive issues, even though I've seen marked improvement. I just feel like the burden of proof should be very heavy before that is accepted as an inevitability. No stone should be left unturned before giving up and resigning to this being the best it can get. If I had listened to a couple doctors I had, that's exactly where I would be. Instead I am living out the degree of restoration that was available to me rather than have it languish and die untapped. I have no issue with accepting reality when it smacks me in the face, but you can believe I'm gonna push back and see if that line can be moved. In the OP's situation, I think accepting her current status as the best it's gonna get is grossly premature. That day may come, but not yet - if ever.

I also believe that brain damage can occur - there were some signs on my brain scan before I had the sleep study that showed I had severe sleep apnea. However, there have been some amazing improvements over the last (almost) 5 years in how I feel. So I don't feel like the damage is permanent - no way, no how. I have found that a slight increase in pressure has cut my apneas (both OA and CA, in particular) so that I am getting better sleep and waking more refreshed. So, don't give up - ever!

Figuring out the extent to which the brain has been affected (or "damaged") by a chronic health problem is an exercise in futility whenever knowing the extent would not change the overall treatment approach. The brain, as an organ, is designed to adapt to changes. So are we as human beings as a whole. Finding ways to optimize the effectiveness of your treatment--such as by trying suggestions offered in this thread about trying other masks, preventing unintentional leak, etc.--is a positive form of adaptation to circumstances.

It may be that your insurance requires that you "fail" CPAP in order to try bilevel. If that is the case, you and your doctor may need to work together to gather the needed evidence to meet the criteria your insurance requires.