Not so newbie, story and help request.

[snnnark]

***********************
Warning! Anyone trying to experiment based on what is described here will probably die, get scabies and/or change political affiliation. You have been warned!
***********************

Hi all, looking for help and advice as to where to go next in my therapy.
First, let me reiterate that without this forum, I wouldn't have progressed as far as I have. You guys and gals are stellar!

I am 47, male, 202 lbs, 5'10". I like long walks on the beach.... oops wrong website!

History.
I have been a snorer since preteen and constantly fatigued. Would get home from school and go nap etc.
Gf had witnessed apneas and in 2000 I went for a sleep test in Richmond VA. They made me sleep on my back which I cannot do (can't breathe for some reason!) so they diagnosed Insomnia. Really helpful.
Fast forward to 2009. Back in South Africa I'm unemployed and not insured so I go to academic public hospital worried about Bradycardia (resting pulse in the high 30s). Various heart tests came back normal so they consider pacemaker implant. I showed the doc this study
http://www.ncbi.nlm.nih.gov/pubmed/8774 ... dinalpos=2
and he orders a PSG, results as follows:
__________
The exam started at 12:54 PM and ended at 03:03 PM, with a sleep latency of 3.0 minutes and a REM latency of N/A minutes.
Total sleep time was 119.5 minutes with a sleep efficiency of 95.22%.
The sleep stage percentages were 53.8% stage 1, 41.4% stage 2, 0.0% stage 3/4, and 0.0% REM.
The total amount of time awake was 6.0 minutes and there were 21 arousals during the exam.
There were 0.00 periodic leg movements per hour.
The apnea hypopnea index was 30.63
There were 61 respiratory events consisting of 61 obstructive, 0 mixed, and 0 central.
The average event duration was 26 seconds, and the maximum duration was 62 seconds.
The body position that was most common during respiratory events was back.
The average baseline for oxygen desaturations was 98% and the minimum Sa02 during a desaturation event was 94%.

Conclusion: Abnormal polysomnogram with an apnea/hypopnea index of 30 events per hour of sleep. Events were not associated with significant desaturation but arousals were prominent and snoring was evident throughout the polysomnogram recording. The findings would support a diagnosis of obstructive sleep apnea.
__________
Note the 2 hour test! Only possible when doped up on Zolpidem. The hospital has a lot of patients to get through and they don't do overnight studies!!
Anyhoo it was enough for me to get a script sent to cpap.com. My sister kindly paid for the equipment ( Thanks dear sis!). No titration study is offered by the hospital so I decided to self titrate with an APAP. A titration done at a local sleep lab would have cost R4500 (+- $570.)

So now I'm thinking that I can get a life, become full of energy etc.... Hmmm.

Based on the info available on this forum (and the amount of information is staggering!) I set the machine up for 6 - 12 cm.

1st night was a mare! 2nd was better, 3rd sucked etc. As I aclimatised to therapy I saw that I was getting very few Apneas but tons of Hypopneas and NRI's (Non responding events). At first I thought the pressure was causing Centrals then I saw that sometimes the NRIs occurred before the pressure increase. Because my snoring was controlled by very little pressure (no snores at 6cm) I went CPAP at 8.5 cm. I still had NRI's and high AHI but at least the pressure changes weren't waking me and the areophaigia quit.

After more reading I realised that I might have Complex Sleep Apnea. To deal with the centrals this study
http://ajrccm.atsjournals.org/cgi/conte ... /158/3/691 gave me some ideas.
I tried theophylline, no impact and made me feel crap the following days.
Couldn't get Diamox (Acetazolamide) and was even considering Nicorettes when I found this study.
http://chestjournal.chestpubs.org/conte ... .full.html
I thought that I could make a dead space container of 500ml and experiment with that. Then, after some calculations, I realise that the standard cpap hose is 500ml! So I make a vent to fit on the machine out of washing machine outlet hose and irrigation fittings.

I checked the leak rate by timing how long it took to take a breath through the vent in the mask, then drilled holes in the pipe connector till I got the same time.

The mask vent was initially blocked with duct tape but I found that a product similar to Blue Tack was better.

At this point common sense kicked in and I decided to get an oximeter before trying out the rebreather! 2 days baseline oximeter data were recorded with normal setup. AHI was 23.3 and 14.6 with Basal spo2 95.5% and 95%.
I did some tests with the blocked mask and tube. I sat with the oximeter on and the tube draped over my shoulders breathing for an hour. No desaturations or ill effects so I slept with the setup for 3 days.
Results:
AHI 2.8, 4.6 and 5.5
Basal spo2 95.4, 95.1 and 95.5 !!

It seems to work, I'm getting better sleep but not feeling great the next day. I notice that my vT (tidal volume) has increased from +- 450ml to +- 800ml. I follow with interest Phorts thread on rebreathing.
viewtopic.php?f=1&t=48554&st=0&sk=t&sd=a&hilit=Phorts
I also see there that my 500 ml dead space is waaay too much, according to a study found by DSM.
http://www.medscape.com/viewarticle/515202_8
I am also feeling some ill effects like a need to cough and voice going. So I go back to normal setup... and 15+ AHI.

I had a follow up at the cardiology clinic at the acedemic hospital. Unfortunately I don't get to see the doc who prescribed the PSG and the doc that saw me said she has no experience of sleep apnea and therefore cannot help me. Duh, gimme a pacemaker and I won't have centrals!! (Theoretically).

On the way home we stop in at the local Cpap supplier. Nice lady, only stocks Resmed(Great products, Lousy company) and she helped me out with a short length of tube and swivel that I can use for rebreathing tube.

The short tube gives me slightly better than normal results. Hmm, bit disappointing till I work out that the tube is only 75ml! I add a bit more dishwasher hose and bingo! Very similar results to 500ml without side effects.


Now, average AHI down from 14 to 6.7 and NRI's down from 2 to under .1, more dreaming but still very fragmented sleep. And the rainout!!! I have covers for both sections of hose. Standard hose is fine, but the short section and mask... I need a snorkel!


So where next? Any solution cannot involve money cos I don't have any.

1. Get a pacemaker - solves the centrals problem and the Intellipap works fine for OSA. Problem is, that's not my decision.
2. ASV machine - at R50 000 (+- $6500) .... not gonna happen. (unless I find a fairy Godmother... hell, I'll even take a straight one!)
3. Explore the chemical route more - I haven't tried Acetazolamide, any other suggestions?
4. I know I need to work on sleep hygiene! Going to bed 2-3 am and waking at 12 is not good!

All ideas and suggestions gladly accepted and questions welcome!

Thanks all

Deon

Edit: updated my equipment list!

[JohnBFisher]

Greetings snnnark (aka Deon)!

I see this post has not received any replies. Frankly, I suspect no one feels qualified enough to answer. I sure do not! And I suspect those who are qualified to answer simply know the one axiom of diagnosis. No data, no diagnosis! (That is true regardless of whether you talk about cars, computers, animals, or people!) And that's the point. We certainly do not have enough information.

You went much farther than I would have attempted. And you did that (and while making every attempt to do so in a valid manner ... but without any tools to monitor your vital signs during sleep).

So, what I offer, I do so with the CLEAR statement that I am NOT a medical professional, and that all I offer is what I might do in your situation. Also know that I do realize that funds are very limited for you. I really wish I could wave a magic wand for you and everyone else. Affordable healthcare should be something we as societies offer to everyone.

You don't have a method to monitor your blood oxygen level. What you did was pretty dangerous without it. I would seriously consider getting a pulse oximeter to monitor your blood oxygen levels.

Now onto your questions.

... Any solution cannot involve money 'cause I don't have any. ...

Well, perhaps not money, but you might be able to borrow equipment ... or the like.

... Get a pacemaker - solves the centrals problem and the Intellipap works fine for OSA. Problem is, that's not my decision. ...

Would not help if your problem is not due to cardiac issues. It is not always due to heart problems.

... ASV machine - at R50 000 (+- $6500) .... not gonna happen. (unless I find a fairy Godmother... hell, I'll even take a straight one!) ...

Instead of an ASV unit, a BiLevel PAP S/T (BiPAP S/T or VPAP S/T) unit might be an alternative. You can probably find one for MUCH less than an ASV unit. Though not as effective, the S/T unit tends to help with central apneas by switching to inhalation pressre. It is not an ASV unit, but it might help.

... Explore the chemical route more - I haven't tried Acetazolamide, any other suggestions? ...

It does not hurt. You can use Google Scholar to search for various studies on this. I tried several different medications over the years. None of them helped. But your situation might be quite different.

... I know I need to work on sleep hygiene! Going to bed 2-3 am and waking at 12 is not good! ...

Well, it's not bad if you are getting good sleep. And that's what we want to move you torward. Going to bed late can be a sign of trying to avoid something that "hurts" - sleep. But you are right. Moving back to a normal schedule can help.

... All ideas and suggestions gladly accepted and questions welcome! ...

I don't know if this helps. I sure hope so. The most important thing I can note is that you really need to use a pulse oximeter while you are trying to figure out how you are sleeping. And we all hope you are able to get better sleep soon.

[snnnark]

Hi John, thanks for the reply!

When I didn't get any replies I figured that my post was probably too long and confusing! I mean, even you missed the oximeter data and your posts are pretty thorough! I apologise
I have a CMS 50d+ oximeter and used it to perform baseline tests before I started with the rebreathing tube and monitoring whilst on the setup. The one study I found shows that oxygenation actually increases on a rebreathing setup. It appears your tidal volume increases till you get the same oxygen that you did without the tube.

Respiratory Effects: DS breathing resulted in a consistent reduction in the apnea index from 29 . 7
to 1 . 1 events per hour (p . 0.01). The AHI also was significantly reduced (43 . 7vs9 . 4 events per
hour, respectively; p . 0.01) [Fig 1, 5]. The Petco2 showed only a slight increase of 1.8 mm Hg during
DS breathing compared to non-DS breathing (40.7 . 2.7 vs 38.9 . 2.6 mm Hg, respectively; p . 0.05).
The minimum Sao2 (93.1 . 1.0% vs 89.6 . 1.3%, respectively; p . 0.01) and mean Sao2 (94.4 . 1.0% vs 93.5 . 1.1%, respectively; p . 0. 01)
improved significantly with DS breathing, with no change in the maximum Sao2 (95.0 . 0.9% vs
94.9 . 1.1%, respectively; p . 0.47). The magnitude of oscillation in the Sao2 was reduced with the
DS breathing as well (Sao2 from maximum to minimum, 5.5 . 0.9% vs 1.8 . 0.4%, respectively;
p . 0.01) [Fig 1, 6].
Cardiovascular Effects: DS breathing did not change the heart rate (65 . 6vs66 . 6 beats/min,
respectively) or the number of ectopic beats (1.5 . 0.7 vs 1.9 . 0.8 events per hour) during
sleep.

http://chestjournal.chestpubs.org/conte ... .full.html

Where I made my mistake was not finding the other study that DSM found which shows that on CPAP, only 100 to 150 ml of dead space is needed !! But even with the full 500ml tube I experienced no desats! (If it is of interest I can post the oximetry reports.)

snnnark wrote:... Get a pacemaker - solves the centrals problem and the Intellipap works fine for OSA. Problem is, that's not my decision. ...


Would not help if your problem is not due to cardiac issues. It is not always due to heart problems.

My intuition says that the bradycardia should be the cause of the centrals. During my 24hr holter ECG my heart rate got down to 24bpm! And the oximeter stops recording at 32bpm so I have gray lines on my reports every now and then. With beats that slow it's sure going to take blood a long time to get to my brain!

Anyway thanks a lot for the reply. I realise that my situation is out of the norm and probably not for this forum.

But I'm still open to questions or suggestions

Deon

[kteague]

I don't have a clue on the rebreathing subject, just wondering why the pulse rates you've noted don't merit a pacemaker? Have you been able to correlate slow pulse with low oxygen? Does not getting a pacemaker have anything to do with no insurance? Has the doctor seen your oximeter reports? I'm hoping you do find a fairy godmother (or godfather) so you can go directly to resolutions. I may not understand everything related to your situation, but I've followed it because it's interesting to read what others do to try to make this treatment work for them. Best wishes.

[Sleeprider]

As long as everyone else is tackling the hard stuff, I'll give you something for the easy one. Rain-out can be solved by heating the hose, and the least expensive way to do this is with a "repti-heater" Just another amazing innovation at this forum viewtopic.php?t=27579

good luck with it all.

[akousw]

I would wonder if you even have a choice but to work on your sleep hygeine. I sure need to work on mine. It sounds like most of what you are looking to get require money and/or prescriptions, and at least in in the states, we use our fancy insurance (not anymore )and prescriptions in order to get most of that stuff. I doubt sleep hygeine will help much, but I don't know if that's all you can do. Might I suggest a nice, big, trip to the doctor?

[DreamDiver]

snmark,

This is something I've been considering for myself. I already own a fairly incredible machine capable of at least detecting centrals. Since all I have is centrals, I figured a couple days ago it might be considerably less expensive to make a rebreather apparatus myself than to buy a servo ventillator. The only thing I worry about is if the machine turns off during a power outage, and I don't notice. I worry that the rebreather apparatus could fairly soon become a death trap. In which case an oximeter might have to be a standard part of your nightly management. Do you have an UPS?

I'm a little chicken to experiment with myself because my centrals/complex breathing are not currently as bad as yours obviously are, and my insurance may help. In your situation, I imagine it's a case of experiment-or-keep-getting-worse. I admire your courage, research and safety controls, but wish there were a way you could afford a servo ventillator. I hope you had someone who was watching you during the rebreather oximetry trials.

I may revisit this with you via PM if I find I can't afford sv myself.

Sleep well.

[JohnBFisher]

... The only thing I worry about is if the machine turns off during a power outage, and I don't notice. I worry that the rebreather apparatus could fairly soon become a death trap. ...

First, both you and snnnark will almost certainly awaken when the power stops. I have each and every time. Most people do.

Second, even if you do NOT wake up your mask has an anit-asphyxial valve built into them. Even with the with snnnark covering the exhaust holes in the mask, it will still work. It won't work as well, I will grant you, but it will work.

Snnnark, when I get the chance later today I will revisit this thread.

[unadog]

Even a normal BiPap/VPAP is going to help more than CPAP!

I am waiting for a test to get an ASV. I was on CPAP for almost 3 months and made some progress during that time with fatigue, memory, cognition, and pain.

I moved to a Bipap Auto about 12 days ago and am doing **much** better in just 12 days than I was previously! Not quite "enough", but better.

I don't know how much your CPAP cost, or what you can scrape together by selling it, but I have seen a number of Bipaps available used here for $120 to $200. They seem to cost **less** than used CPAPs. Everyone seems to "know" that they need a CPAP, and don't really know what bilevels are.

Of course a Bipap S/T, like John mentioned, would be the best of the non-ASV units (still waiting for my S/T to arrive to see how much incremental help that is.) But anything to get going and get some improvement is what I figured when I bought the Bipap, which is what I could find at the time ...

This is an older study on Centrals. But the numbers are similar to those I have seen on more recent studies on Complex Apnea. Statistically good results!




Figure 2. Box plots of effect of treatment on central apnea index. Horizontal bar: median; thick vertical line: interquartile range; circles: outliers; thin bar: range excluding outliers.
Also shown are statistical significance of comparisons between control and each of the four treatments, and between ASV and the other four conditions.



Good luck!
Michael

[snnnark]

I don't have a clue on the rebreathing subject, just wondering why the pulse rates you've noted don't merit a pacemaker? Have you been able to correlate slow pulse with low oxygen? Does not getting a pacemaker have anything to do with no insurance? Has the doctor seen your oximeter reports? I'm hoping you do find a fairy godmother (or godfather) so you can go directly to resolutions. I may not understand everything related to your situation, but I've followed it because it's interesting to read what others do to try to make this treatment work for them. Best wishes.

Sorry it's taken so long to reply. I had answers for everyone then... you guessed it the computer froze and of course I hadn't saved I don't need this.

Anyway to answer your questions, I have a situation where there is nothing physically wrong with my heart. It responds normally to exercise and so my daily functioning is ok (apart from sleep deprivation of course!) So I'm way down the list of government sponsored pacemakers. If I had severe desats or fainting due to low BP then I'd be more of a candidate.

As long as everyone else is tackling the hard stuff, I'll give you something for the easy one. Rain-out can be solved by heating the hose, and the least expensive way to do this is with a "repti-heater" Just another amazing innovation at this forum viewtopic.php?t=27579

good luck with it all.

Yes I'll have to do something! Because of the vent position the small tube mainly has hot breath and little fresh air going through it so it gets pretty humid. I'm working on a mask hose connector that will allow me to make a hose cover all the way up to the mouth piece.

I would wonder if you even have a choice but to work on your sleep hygeine. I sure need to work on mine. It sounds like most of what you are looking to get require money and/or prescriptions, and at least in in the states, we use our fancy insurance (not anymore )and prescriptions in order to get most of that stuff. I doubt sleep hygeine will help much, but I don't know if that's all you can do. Might I suggest a nice, big, trip to the doctor?

Unfortunately the Clinic doctor has to see 50 patients a day. Not too concerned with somebody that "can't sleep"!

snip.
The only thing I worry about is if the machine turns off during a power outage, and I don't notice. I worry that the rebreather apparatus could fairly soon become a death trap. In which case an oximeter might have to be a standard part of your nightly management. Do you have an UPS?

There are several reasons why I'm not too concerned (and being suicidally depressed ain't one of them )
1. As long as your lungs are healthy it seems that you breathe deeper in order to compensate for the additional co2. When I was on the 500ml tube my vT went from 450ml to 800ml, 300ml more than the tube. On the current 125ml setup my average vT is 592 ml.
2. I'm on a nasal mask and will most likely wake or mouth breath if the power went off.
3. It is actually difficult to maintain the co2 level. Any tiny leak will flush it out very quickly. I did the math!
4. You can breath through the vent! It takes more effort but as long as there is some openness in the system (even dragging a breath through the switched off machine) you will get enough o2.

Of course you having the CMS50E will add a degree of security!

... The only thing I worry about is if the machine turns off during a power outage, and I don't notice. I worry that the rebreather apparatus could fairly soon become a death trap. ...

First, both you and snnnark will almost certainly awaken when the power stops. I have each and every time. Most people do.

Second, even if you do NOT wake up your mask has an anit-asphyxial valve built into them. Even with the with snnnark covering the exhaust holes in the mask, it will still work. It won't work as well, I will grant you, but it will work.

Snnnark, when I get the chance later today I will revisit this thread.

Thanks John

[DreamDiver]

Doh! I forgot about the anti-asphyxia valve because my mind was focused on taping the mask vent holes. You're right. Even if you fall asleep with your particular setup, it's about as safe with the power off as no mask at all. Still brain fogged, but now I got it. Thanks, snmark, John. That makes me think maybe this is not a bad way for me to go to... Hmm...

I'm curious - how loud are the vent holes on your CO2 column vent?

[snnnark]

Doh! I forgot about the anti-asphyxia valve because my mind was focused on taping the mask vent holes. You're right. Even if you fall asleep with your particular setup, it's about as safe with the power off as no mask at all. Still brain fogged, but now I got it. Thanks, snmark, John. That makes me think maybe this is not a bad way for me to go to... Hmm...

I'm curious - how loud are the vent holes on your CO2 column vent?

Actually they are remarkably quiet! I discovered as a kid when you blow into a bic pen lid from the top (i.e. from small hole out the big hole) it makes a hissing noise. But if you blow the other way, the air comes out faster, but quietly! So after drilling the holes I pushed the little ridge left by the drill over the holes. The air comes out quite hard but quieter than the normal vent!

[snnnark]

Even a normal BiPap/VPAP is going to help more than CPAP!

I moved to a Bipap Auto about 12 days ago and am doing **much** better in just 12 days than I was previously! Not quite "enough", but better.

I don't know how much your CPAP cost, or what you can scrape together by selling it, but I have seen a number of Bipaps available used here for $120 to $200. They seem to cost **less** than used CPAPs. Everyone seems to "know" that they need a CPAP, and don't really know what bilevels are.
snip.

That's a good thought. I must contact the various cpap supplier around here and see if we can make a deal. Thanks.