Picking up my BiPAP tomorrow. Wahoo... hopefully!

[jamiswolf]

Hi xm41907,
I'm no expert but with classic CS breathing pattern, there is a more clear cut waxing and waning of respiratory depth. Perhaps those are what's called periodic breathing which is sort-of a precursor to CS.

xm41907 wrote: Neither my sleep nor gp doctor has been willing to investigate the underlying cause of the centrals. I'd think that finding the root cause and trying to fix that should be the primary treatment. I guess doctors feel differently. Ugg!

You've commented about this several times. Find the cause and treat it. But the bad news is...the cause is rarely found and the treatment is even rarer. So your Docs aren't jumping on that bandwagon because it's mostly a waste of time. Not saying a Neurology consult is a bad idea...but if central apneas are your only symptoms, I wouldn't expect much useful info to come out of the consult.

You REALLY need to get a recording oximeter to evaluate the significance of the centrals. If the desats are minimal or non-existant, then you can probably stop worrying so much.

I didn't have a very aggressive sleep Doc. I was having an average of 25% periodic breathing and fairly low desats...into the 70s. And of course I had the central apneas that come along with periodic breathing. Using an apap, I was averaging over 20 AHI with half being CAs.

Using the theory that hypoxic events alone can trigger PB/CS breathing and central apneas (did have a reference for that)...I added night-time oxygen. My situation is unique in that I have a compromised respiratory capacity and tend to run low O2 and I also live at 6000asl.

The addition of O2 for me keeps my O2 above 90% at night and almost completely shut down the PB episodes. But I also use a bipap st which kicks in and triggers breaths if I forget to breath. This use of supplementary O2 and an ST was the best treatment available pre-ASV...and for some, it works good. I'm not suggesting this to you...just offering my case as an example.

Anyway, good luck to you.
Jamis

[xm41907]

Thanks Jamis, that helped settle my mind some. As for the desat, During the initial sleep study, my O2 concentration only fell below 90% once, and that was down to 89%. During my three titrations, it never fell below 90%, and during the last one for the BiPAP, the lowest it got was 94%.

If my O2 doesn't go below 90%, then I shouldn't be too worried right? I wonder of the sleep doctor has an oximeter I can use for a few days. Doubtful, but it doesn't hurt to ask.

[jamiswolf]

xm41907,
Check with either your sleep Doc or your DME. I'm sure one or the other has a recording pulse Oximeter that you can use for a few nights.

Technically a desaturation is defined as a 3% drop in O2 over baseline. There are different standards...I think I've seen 4% used as well. So you may be having desaturations, but if they never get any lower then 89% or 90%...then you probably don't have too much to worry about there. (as far as O2 levels go)

But whether the desat is caused by an obstructive or a central event is important. If it's obstructive, then your body is trying to breath and the respiratory effort can cause an arousal (different then awakening) which can cause you to shift into a different (less deep) level of sleep. Sleep apnea causes two main problems. Loss of oxygen to the body (apparently not an issue with you now with therapy) and disruption to sleep architecture causing a loss of restorative sleep. Both are important.

So one thing I'd say is that you need to take a deep breath (pun intended), relax and recognize that results don't happen overnight. It takes awhile to adapt to this therapy.
Jamis

[xm41907]

Thanks Jamis!

[xm41907]

I think I may have found the answer to my centrals. I can't be for certain as it's only one night, but last night marked the first time since going on a xPAP that my AHI was actually "controlled". What is this mysterious thing that worked some sort of voodoo magic to keep the centrals away?? It's melatonin, 9mg to be exact. Now I'm not one to be convinced after one night of success (especially considering I took 6mg the night before and it didn't change anything), so I'll hold of on making that decision. Irregardless, something was different last night. Just take a look at my event log....



"How do you like them apples?"

I sure am hoping this trend continues. If I can get "controlled" numbers for the next 4-5 days, then my plan is to stop the melatonin for a few days and see if the centrals return. I want to use myself as a controlled experiment to see if the melatonin is the true reason, or if there is something else that just so happened to fall on the same day.

[xm41907]

Night two of my trial wasn't quite as good. I continued with the 9mg dosage and went to bed much earlier than the previous night (I was up fixing my computer the night before, that's why I only got 5 hours). For most of the night, everything went great. But about an hour before waking, I started a round of centrals. In looking at my data, the aPAP increased my pressure (ipap went up to 15) right before the centrals started. I didn't see anything that warranted the increase either. Probably about 20 minutes into the round, I woke completely up, and stayed in that twilight zone of half asleep yet conscious until my alarm went off. The entire round of centrals lasted maybe 1.25 hours, and probably an hour of that, I was partially awake. The pressure did seem too high and the entire time, I was thinking I must have had a horrible night for it to get that high.

So for the most part, it was another successful night. It does make me wonder though, how long does ingested melatonin actually last in your system? Could it be that the effect wore off when the centrals started back up? Or could the centrals be because my pressure jumped up so high? I think I'll need more testing to flesh this one out.

For tonight, I'll be lowering my max Ipap and continuing the 9mg dosage. I'll report back tomorrow.

[jamiswolf]

xm41907 wrote: It does make me wonder though, how long does ingested melatonin actually last in your system? Could it be that the effect wore off when the centrals started back up? Or could the centrals be because my pressure jumped up so high?

XM,
On this issue, I'd think that pressure induced centrals would be the most logical explanation. I've never heard that melatonin can have an effect to reduce central apneas. But anything is possible. Some medications (narcotics) can definitely induce centrals.

Perhaps the pressure increase was related to a position change...from side to back. Some people have more centrals in certain positions too. Anyway, keep up the good work...
Jamis

PS: I looked up Melatonin duration of action...3 to 6 hours.

[avi123]

Thanks Teknomom. My AHi continues to run between 25-40. Withe the following rough breakdown, however, it does vary quite a bit.

Hypopnea - Usually 2-10 with a few spikes around 20
Obstructive - Usually 0-3 with a few spikes around 5-6
Clear Airway - Usually 12-25 with several spikes in the 40s and a few lows in the 8-10s.

For the most part, I'm healthy. I've had acid reflux, hypertension, and gout. Other than that, I'm good. At the same time I started on the CPAP, I changed my diet significantly. I did a 7 day juice cleanse, and have been eating about 85% vegetarian. I've eliminated coffee/caffeinated teas, and most junk foods. During that first week (CPAP+ Juice Cleanse), I lost nearly 10 lbs, my blood pressure dropped to normal, and my acid reflux diminished to where I went from a daily pill, to only as needed.

As for the neurological connection to centrals, I'm going to discuss the possibility of seeing a neurologist, pulmonologist, cardiologist, to see if they can find any underlying issues that might be causing the centrals. If they can't and I'm designated as idiopathic, then at least I can rule out the possibility of something else.

I've been wondering about the use of supplemental oxygen for my centrals, and also if environmental conditions might be to blame. I sleep in a basement, and I've wondered if there might be a higher concentration of carbon dioxide down here compared to higher levels. Just theorizing, but if I could sleep higher up, then there might be a difference in air quality that could be having an effect.

Lastly, for the most part, I've been feeling great since going on the machine. my blood pressure is better, but that could be a combination of dietary changes and the machine. Who knows if it will drop more if the centrals are under control. My centrals appear to be of the Cheyne-Stokes variety with the pause in breathing being around 10-20 seconds. I'm wondering if things don't work to correct it, if this it's doable to just stay where I am and continue tracking my sleep, hoping whatever is causing the centrals might go away, and then the rest would be controlled.... is that just wishful thinking?

Comment,

IMO, your best bet is to follow your idea about:

As for the neurological connection to centrals, I'm going to discuss the possibility of seeing a neurologist, pulmonologist, cardiologist, to see if they can find any underlying issues that might be causing the centrals. If they can't and I'm designated as idiopathic, then at least I can rule out the possibility of something else.

From your writing it's clear that your GP and Sleep Study were mishandled, b/c you should have been checked by those specialist physicians already. There are dozens of underlying medical conditions issues that could cause Central Apnea Syndromes. Just check the poster's Ben Fisher posts to realize how dangerous they are. Why do you assume that any spicialist would render your case as IDIOPATHIC? Isn't it a negative approach?

[xm41907]

Avi,

I'm working to get my GP to refer me to some specialist, but in the mean time, I would like to do what I can to decrease the centrals. It took nearly 2 months after I was diagnosed with sleep apnea before I even could get a machine. I'm not assuming a specialist would say it was idiopathic, but that seems to be the consensus on here that for many patients with central sleep apnea, they can't determine the underlying reason. I think that with any disease, the fundamental approach for treatment should be to address the reason for the symptoms, and not simply treat the symptoms themselves. It seems the medical community disagrees. I can't really blame them though. Most doctors don't have the time to truly investigate things. Everything is an in-and-out rush these days. I try to not be negative about things, but when it comes to medical issues, It's been nothing but a fight with every doctor I've dealt with, outside of emergency room issues.

[avi123]

Avi,

I'm working to get my GP to refer me to some specialist, but in the mean time, I would like to do what I can to decrease the centrals. It took nearly 2 months after I was diagnosed with sleep apnea before I even could get a machine. I'm not assuming a specialist would say it was idiopathic, but that seems to be the consensus on here that for many patients with central sleep apnea, they can't determine the underlying reason. I think that with any disease, the fundamental approach for treatment should be to address the reason for the symptoms, and not simply treat the symptoms themselves. It seems the medical community disagrees. I can't really blame them though. Most doctors don't have the time to truly investigate things. Everything is an in-and-out rush these days. I try to not be negative about things, but when it comes to medical issues, It's been nothing but a fight with every doctor I've dealt with, outside of emergency room issues.

Reply:

You don't specify your age or gender or locality. Many of us could have suggested physicians that would diagnose your sleep disorder, within a week or two.

If it would be me I would be looking for a Doc who has MD designation in each of the following disciplines:

Board certified: Internal Medicine, and Sleep Medicine, and Pulmonary Diseases OR Internal Medicine, and Sleep Medicine, and Neurology.


Check these reports on causes of Central and Obstructive Sleep Disorders:


http://emedicine.medscape.com/article/304967-overview

http://emedicine.medscape.com/article/295807-overview

[xm41907]

Oops, I updated the info. Male, 34 years old. I live outside of Baltimore, MD. Let me clarify about that time frame. In late October, I developed severe fatigue, increased blood pressure (I've been stable on meds for a couple of years), and decreased basal body temperature. The fatigue issue was not gradual either. As an example, In September I ran a half marathon. In early October, I ran the Army 10 Miler just fine. Two weeks later, I could barely run 3 miles without feeling like I was going to die. Needless to say, it hit me like a ton of bricks. I went to my GP, who's specialty is internal medicine, and he immediately said that it was all due to the increased blood pressure, and subsequently changed it. He did order some basic blood work too. The blood work came back with slightly elevated thyroid levels (TSH), but he said everything looked good. With my symptoms, I felt that hypothyroidism was a logical thing to test for but I had to fight with him to have the additional thyroid tests. Finally, he agreed and they were done. Everything came back in the normal ranges. It was at this appointment that he brought up sleep.

I was impressed with the sleep center at first. When I called for an appointment, I had one set for two days out. That is when I was diagnosed with "moderate central sleep apnea". Of course, then I had to get a titration. The first one didn't go well, so I had to have a second. This one one said that my apnea was controlled well with a cpap and a prescription was sent to a DME. This happened to be right before Christmas, and I was going home for the holidays, so I had to wait until early January. That is when I finally got the machine. That's why it took so long to get one. Once the doctor suggested it might be sleep related, I was diagnosed with CSA about a week later.

I've felt my GP has been completely ignoring the situation. He has been unwilling to investigate other options, and does not want to refer me to a specialist. Unfortunately, I need a referral from him first. I'm in the process of finding a new GP, but everyone I've been referred to either isn't currently taking new patients, or I can't get a new patient appointment until March-April. So I'm kinda stuck with this guy at the moment.

If you happen to know of a good doctor in the Baltimore area, please share!

I'm pretty familiar with the literature on what's known to cause centrals, so I'm doing my homework, but not having a doctor I can rely on has been difficult. I appreciate the advise everyone has given. I'm determined to figure it all out. The good thing is that my original fatigue has been gone since before I went on the cpap. I don't know if the cause has been corrected or not, or if it's even related to sleep apneas.

[avi123]

Overthere in Baltimore you got:

http://www.hopkinsmedicine.org/pulmonar ... linic.html


Ask your doc to fill this form:


http://www.hopkinsmedicine.org/pulmonar ... ferral.pdf

[xm41907]

Ok, so I had an apt with my GP yesterday and much to my surprise (sarcasm), he wouldn't fill out the Hopkins referral. He stated that since I was already under the care of a sleep center, I would need to go through them for anything sleep related. I said that I wanted it for a second opinion, but he still wouldn't budge. It's the last straw with this guy. I've felt like he's been jacking me around for awhile. Now comes the problem of finding a new GP that I think would be a good doctor for me, then see how long it takes to get a "new patient" appointment. Then (hopefully) get the new doctor to fill out the referral. Then comes setting up the appointment with Hopkins, which I know will take awhile. I'm hedging on around May before I'll get in. Ugg! It's a good thing I'm feeling great and having some improvement with my sleep.

To update on my melatonin trial, I've quit taking it. I had dramatic improvements in my AHI (from the 25-45 to 5-10) for roughly a week then it started creeping back up to around 12-15 AHI. I stopped taking it at that point and my numbers have been hovering between 10-15 for the last week or so. It's only anecdotal evidence, but my assumption is that it worked to adjust my sleep stages then my body got used to it and the effect wore off. I'm still happy with the lowered numbers though. 12-15 has been much better than the 20s to 40s. Although it's not technically "controlled" at my current level, it's an acceptable range until I can go through the hoops for a second opinion. Last night I lowered my epap level from 8 to 4 and my AHI last night was 8.2. I'll probably keep it at this lower setting for a few days and see how things progress.

[xm41907]

I'm happy to report my numbers have been around 6-15 for the last several weeks. Yeah, not fully "in control" but far better than when I started this journey. I see no point in going through the hassle and money to try for an ASV at this point. Things are going well and I'm seeing a slow but steady downward trend in my centrals. If this keeps up, then maybe they'll go away completely in the next year. I'm hopeful at least.

[wolewyck]

If you are happy, then that's great. Personally, I was not satisfied with my initial CPAP results even though, *on average*, I had an AHI in the 3-4 range. This was because I could detect clearly cyclical patterns in my AHI, and while most days were below 5, every month there were a few predictable days or even a week of 5-10 values, and boy could I feel the difference, even at this "mild" apnea level. I was not willing to feel crappy for even one day a month if I could avoid it. I was able to get an ASV titration, and its success was dramatic-- in the sleep study they switched me back and forth between BiPap mode and ASV mode... BiPap - Bing! There are the centrals! ASV mode - Hey presto, they're gone! It's also been extremely effective at home. Anyway, I am sure everyone's body reacts differently. If yours is good with your range, fantastic. But if not, then don't hesitate to pursue better treatment.