Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Undiagnosed newbie
#1
Hi all

I have breathing issues at night because of a weak diaphragm, related to neuropathy. Seems to have worsened lately, I have had some morning headaches. Looking back, I have likely had poor breathing all my life, but it was particularly bad when I was taking Lipitor, during which time I would become short of breath when lying on my back.

I can only sleep on my side now.

So I am going to buy a CPAP machine. I was hoping I could have some crash course advice from the forum, eg how not to hurt myself on CPAP, cheap machines to avoid etc.

Do most people get by with fixed pressure machines? Or is auto or bilevel far better?

Thanks in advance. I'll do a sleep study one day but time and money are short right now. I want to get a machine asap. 

I'll keep reading here, ty in advance.
Post Reply Post Reply
#2
Welcome to Apnea Board Supercramp!  

I don't have any experience with weakened diaphragm, but I can give you a little direction with regards to your latter questions.  

Can a CPAP harm you?  
It's pretty tough to do any serious damage using an XPAP, if not impossible, but it can cause skin irritation, dryness, and aerophagia, all of which are treatable.  I would venture to guess every one of us has experienced one or most of these over the course of therapy.  

Fixed or Auto?
I'm a huge fan of Auto-titrating machines, particularly in your case as you won't be having a formal PSG and titration study.  Trying to optimize therapy using a straight CPAP will be significantly more frustrating and time-consuming than using an Auto machine.  

Another consideration regarding fixed vs Auto is that all Auto machines will also run in fixed mode.  There are a few reasons why it may be better to run in fixed (if you have predominantly central apneas) but most of the time if that's the case you need a different machine.

One important thing is that some straight CPAP devices are not fully data-capable.  When we refer to data capable machines, we mean machines that provide detailed waveform graphs over the course of each night and specific data as to type of apnea, RERAs (respiratory effort related arousal).  Machines that are not data-capable usually provide compliance data only (AHI, Time used) and will only work with proprietary software from the manufacturer (myAir, DreamMapper) and while they are good for at a glance info, they don't provide the depth of info necessary to really take control of your therapy as Sleepyhead will.   Since you are not having a PSG or titration-study buying a machine not fully capable would be ill-advised and set you up for failure.  Don't let my last comment discourage you though - I am of the opinion that self-titration on an Auto machine in the comfort of your home is far better than a sleep lab titration.  

Which Machine?
There is an excellent guide at this link.  This will help inform on which machines to avoid.  Personally I am a Resmed fan with regards to Auto-CPAP and Auto-Bilevel machines because I find their algorithm more effective than PR, and my breathing syncs perfectly, but YMMV.  When it comes to ASV machines, my opinion is less clear, but there is no reason to seek an ASV machine unless you appear to have complex or central apnea.  Once you have a data-capable machine and start posting some data, this forum can help you dial in your therapy, or if the machine isn't correct, point you to the right machine.  

It's hard to advise you on Auto-CPAP vs Auto-Bilevel, because since you are buying outright it's a function of cost vs need vs comfort.  I find an auto-bilevel to be much more comfortable than auto-cpap, because you can control expiratory pressure (EPAP) and it makes higher pressures more tolerable.   Since we have no idea right now what your therapy pressures might be it's hard to say "go Auto Bilevel" other than for comfort or future proofing reasons.  

If you check out Amazon you can get a Dreamstation Auto (CPAP) or Auto Bipap for a great price.  

Again - welcome to the board and the world of CPAP!
Post Reply Post Reply
#3
Statin drugs are known to lower levels of Coenzyme Q-10. In some, it may result in muscle aches and pain. It may or may not have contributed to your difficulty breathing with the neuropathy. Something to discuss with your medical provider.

from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096178/

"Coenzyme Q10 is an important factor in mitochondrial respiration. Primary and secondary deficiencies of coenzyme Q10 result in a number of neurologic and myopathic syndromes. Hydroxyl-methylglutaryl coenzyme A reductase inhibitors or statins interfere with the production of mevalonic acid, which is a precursor in the synthesis of coenzyme Q10. The statin medications routinely result in lower coenzyme Q10 levels in the serum. Some studies have also shown reduction of coenzyme Q10 in muscle tissue. Such coenzyme Q10 deficiency may be one mechanism for statin-induced myopathies. However, coenzyme Q10 supplements have not been shown to routinely improve muscle function. Additional research in this area is warranted and discussed in this review."
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
Post Reply Post Reply


#4
Beej: good info on statins and Co-Q10. (You reminded me to get some!)

I wonder if, in Supercramp's case, the neuropathy is all from statins; or some other underlying condition not mentioned.
Systemic neuropathy can be seen in long term diabetes. Before the polio vaccine, polio resulted in inability to breathe that put young people in ventilators -- if you're old enough to remember the "iron lung". Any further info Supercramp?

There is some risk in buying a machine without a study. A weak diaphragm may require a bilevel auto to get the Tidal Volume up.
Whereas an Autoset might do the job. Yes, I'm a ResMed fan too. However there are deals to be had on PR machines. The PR auto bilevel handles Pressure Support (PS) a little differently than ResMed.

I would definitely get a fully data capable auto machine -- the question is an auto PAP or an auto bilevel.

Admin Note:
JustMongo passed away in August 2017
Click HERE to read his Memorial Thread

~ Rest in Peace ~
Post Reply Post Reply
#5
SuperCramp, with neuropathy, you want bilevel for the pressure support. For your condition an increase of 5 to 8 cm between exhale and inhale pressures can get you a lot of relief. As long as you don't need a backup rate, a bilevel can offer a lot of relief.

Just throwing it out there, but a new Philips Dreamstation Auto BiPAP DSX700T11 can be had on Amazon for $870, and appears to be avalable fir $855 new from Total Health CPAP Supplies (amazon vendor). Since you are self-finaincing the Dreamstation BiPAP Auto DSX700T11 is the way to go. Note the listing I just references uses the wrong stock photo. As long as the model number is DSX700T11 that is the newest Dreamstation version with heated humidifier and heated hose.
Post Reply Post Reply
#6
G'day SuperCramp.

>> Disclaimer: I am not any kind of medical professional, so take my advice for what it's worth <<

I think it's important to identify exactly what you're seeking treatment for. Fixed pressure and autoset CPAP machines are for the treatment of obstructive sleep apnea, which occurs when your tongue and soft palate collapse during sleep, blocking (obstructing) your airway. I can't see how either of these machine types will help if you have a diaphragm problem which is not related to obstructive sleep apnea.

A bilevel or even ASV machine might be the way to go, but until you've been properly evaluated by a medical professional do not get any kind of machine. There is a high chance you'll get one which doesn't treat your condition and you'll be even further out of pocket.

Many clinics will bulk bill the sleep test, but your night in the facility will have to be claimed against your private insurance. I have MBP top hospital cover so my sleep test cost zero out of pocket.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply


#7
(04-18-2017, 08:46 PM)justMongo Wrote: ...

I wonder if, in Supercramp's case, the neuropathy is all from statins; or some other underlying condition not mentioned.
Systemic neuropathy can be seen in long term diabetes.  ...

Since the breathing was worse on the statin, I thought that it might have added to the overall neuropathy problem. Unless it was a mitochondrial issue contributing to /causing the neuropathy, I don't know if the CoQ-10 would help with that. It could be something to test. 

Some of the B vitamins also aid in neuropathy issues - for example Vitamin B-12 as methylcobalamin, not cyanocobalamin, is helpful for cats with diabetic neuropathy. I got to reading abstracts and articles in http://www.pubmed.gov relating to mitochondrial dysfunction, as that may be a factor in some forms of rheumatologic disorders.
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
Post Reply Post Reply
#8
I would think that you really do need doctor supervision and a proper sleep test. It's all free at a public hospital in australia. I would get your GP to write a referral to outpatients.
you can also do a home sleep study for a cost of $50 and medicare picks up the rest. I only had to wait a week for this

At the least, I would hire a machine with full readout for a month and work with the forum members to work out how you are going. With neuropathy, the messages to the nerves can be blocked as well. You may have needs for back-up breathing support.
Post Reply Post Reply
#9
So many helpful replies, thank you.

I might have some obstructive apnea, but my main issue is my diaphragm. I noticed, while coming out of an op, in recovery, that I had to consciously breathe to stay at 98% O2, while everyone else was steady at 98%. I have had shortness of breath when lying down.

The neuropathy is something I have had all my life, it was pretty much symptomless until I took Lipitor, which gave me muscle and nerve damage.

I have tried CoQ10, it seems to help.

I also got nerve damage from taking excessive Vitamin B6, and suspect I have something in my genes that makes my nerves susceptible to toxic damage. Perhaps a mild form of CMT.

Anyway, from what you have said, the bilevel machine sounds like the go. I have looked at the cheap units on Amazon, under $1000, they might be the go. I'll keep reading.
Post Reply Post Reply


#10
G'day again SuperCramp.

Much as this forum is all about patient empowerment, we are not medical professionals. We know a fair bit about sleep apnea from personal experience, but we are not doctors.

As I said above, I would strongly advise you to take proper medical advice before committing to any particular machine. You should also be aware that there are a number of different types (not just brands) of bilevel machines, some of which may be quite unsuitable for your condition.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  Rank Newbie Doza 98 3,275 8 hours ago
Last Post: HalfAsleep
  Well Rested Newbie sansnap 50 7,606 12-07-2017, 01:33 PM
Last Post: willow lee
  What's with this newbie data? HalfAsleep 87 2,847 11-21-2017, 01:22 AM
Last Post: HalfAsleep
  Newbie and Lost ScottyV1956 10 309 11-11-2017, 07:18 AM
Last Post: ajack
  [Treatment] Newbie / Intro 77346 17 540 11-10-2017, 07:51 AM
Last Post: ajack
  Another long over due newbie dsmith14469 6 199 11-09-2017, 09:54 PM
Last Post: dracus
  Extreme Newbie kent1969 9 232 11-06-2017, 09:35 PM
Last Post: trish6hundred

Forum Jump:

New Posts   Today's Posts




About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.

For any more information, please use our contact form.