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Hello everyone - possible ALS diagnosis with CSA/OSA
#1
Hello everyone - possible ALS diagnosis with CSA/OSA
Hello everyone!  

In a nutshell, I'm in a world of hurt here.  I've been recently diagnosed with OSA/CSA possibly secondary to ALS (neuro appointment coming up shortly).  I've just completed a sleep study which showed mixed apneas and hypoventilation.  Im waiting on the official results, but im getting on board with a device asap to delay my time to invasive ventilation as well as to help my sleep.

I'm posting because I have a bad feeling that im going to be a particularly difficult case to solve.  Looked like there were several desat events per hour at least, maybe a few dozen.  I only went below 93% twice, once to 89% and once to 85%, but that scared me so damn bad im on this CPAP foe life now.

Anyway, I'd really just like some reassurance from people that even difficult cases of apnea like mine can be solved.  I apologize for not having my sleep study yet - the damn sleep doctor is dragging her feet on this so bad.  I was forced to use a hospital cpap and the experience was just beyond awful.  I used the auto sense mode and that worked for me until I went into light sleep and my apneas started going off.  I constantly was waking up trying to breathe against the machine and getting nothing but dead air.  Horrifying feeling.

I'd like to end with a couple of questions:

1.)  does medicine that stimulates breathing help with severe sleep apnea central style?

2.). How do you avoid the problem of waking up during CSA events by the machine trying to breathe for you?

3.). My co2 is just a tick below normal in my bloodwork.  I understand that messes with / triggers central sleep apneas - do I need to try a mask with less co2 removal?

4.). Has anyone else with central apneas experienced problems with slow heart electrical conduction, bradycardia, etc?  My heart still shows normal function but the electrical / conduction system is all screwed up.  

5.). Like I said before I'm looking at a possible diagnosis of ALS breathing onset subtype, so one of these machines is an absolute must to delay the time when I have to get on an actual ventilator.  Failure of adapting to BIPAP therapy is simply not an option.  I will do whatever I have to in order to succeed because my wife and children are counting on me.  So I'm hoping I can meet kindred souls on here who may have neuromuscular disorders.  Anyone out there in the same boat?

6.). What are the best modes/machines for CSA in general, with hypoventilation?  From my brief experience with the awful hospital BIPAP, I felt the best mode for me was the APAP mode with an eight second "make you breathe" feature.  But that was waking me up out of sound sleep and really messing with my heart rhythm.  How in the heck do people get used to that?  How fo you ever figure out how to get in synch with the machine?  Really wish there was a "turn your lungs off and turn your BIPAP on" option to frigging smooth things out.  Plus it would give my weakening breathing muscles a break.  

7.). Does anyone start falling asleep and get insane feelings of electricity in their chest when they start drifting into apnea land?  Like I usually feel these immediately before I go into light sleep.  

Sorry about the rambling.  I hardly knew anything about these products a year ago and now they are literally going to extend my life, save my heart, and save my sanity.  God bless these machines!
 
Thank you all good people!

Daniel aka Morgannon

P.S.  has anyone thought about buying a "breathing cuirass" instead of a BIPAP for their apnea?  These things are basically iron lungs that can be worn and are negative pressure devices rather than positive pressure devices.  They seem to do a lot less damage to the lungs than the BiPAPs do, and if I'm going to be on a vent for years I need to have the healthiest lungs ever once my breathing muscles conk out.
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#2
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Sorry about the wall of text everyone...just really overwhelmed by the dual diagnosis of apnea and possible ALS. Hoping I can start sleeping again soon. My CSAs are just overwhelmingly bad. Would like some reassurance that sleep docs can fix even bad cases of apneas.
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#3
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Hello Morgannon.  I was diagnosed with hypoventilation by failing a couple of capnography (capnometry) tests.  They test the amount of CO2 exhaled during sleep and seem to be the ticket to getting a ventilator.  

I was initially prescribed the ST (A) machine after my sleep study.  Sleep study showed 2:1 ratio of central apnea to obstructive.  It did not work, and I tried the Astral ventilator, but kept setting off the alarms on it.  

When switched to the EVO ventilator, things have gone pretty well.  The EVO has an "auto" (breath) rate option that the Astral does not.  

VAPS therapy (IVAPS - Resmed and AVAPS - Philips) - volume assured therapy can work well with hypoventilation by assuring a certain amount of pre-set volume to increase minute ventilation and tidal volume in a person whose minute vent and tidal volume get too low.  

The ASV can work also; provided the person's minute vent stays high enough.  

I have not been diagnosed with any neuromuscular disease.  Only with hypothyroidism.  I have not had any symptoms to even warrant testing for it.  

Please read my very first post.  I identify with the electric current feeling in your chest when you are about to doze off. I called it, "buzzing".  Vibrating would be a better term.  It is more rare now that I am on the Evo, but has occurred a few times since then.  

I fought getting on a ventilator early on, but have no problem with it now.  Ventilators (IVAPS and AVAPS) have many advanced options to help hypoventilation, etc.  

There are a few others here on the forum who use IVAPS and/or have neuromuscular diseases.  They may want to comment here also.
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#4
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Oh my God thank you so much for responding - I was going through the exact same thing where I was setting the alarms off all the time.  I am in a world of hurt.  I wish I could just switch my damn lungs off and let the machine breathe for me.  But I keep waking up when those damn apneas hit.

Any idea what that buzzing means?  It is so bad. It sounds like yours have gone away for the most part?

Is your hypoventilation caused by your hypothyroid state?  I've read that thyroid does diminish breathing effort.

I'm getting a BIPAP with all kinds of bells and whistles.  It's even got ASV mode.  Do you think it could work as good as the ventilator?  

Last question for now my new friend - I loved the ASV feature on the hospital BIPAP I tried.  But when I went to sleep the apneas hit with a vengeance and I kept getting yanked out of sleep by waking up to the alarm and the horrible feeling of breathing dead space. What can help that, anything?  I'm so desperate for a quick solution because I'm so sleep deprived I'm hallucinating. Is take some of those medicines that stimulate the respiratory system effective?  

Thank you for answering - can we message in the future?  Just so desperate for answers and sleep...
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#5
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Hello again, Daniel. 

As far as my "buzzing" goes, the Cardiologist put a 24 hour monitor on me for a week.  I pushed the button and recorded each time at night I felt the "buzzing".  Monitor showed that I was in perfect heart rhythm while the buzzing occurred.  Cardiologist interpreted the results.  None of my PCP, Cardiologist, Pulmonologist, or Respiratory Therapist seems to think it is a big deal.  I have done some research and a lot of it seems to point to a faulty exchange in the brain from voluntary breathing to unconscious sleep breathing (sleep wake junk).  I read where people feel vibrations, see flashes of light, or even hear sounds when both drifting off to sleep or when waking in the morning.  The most common was feeling a large "jolt" just before falling asleep.  A Cardiologist and/or 24 hour heart monitor from PCP could rule out any major heart conditions you have if you want to go that route.  

I am not 100% sure if hypothyroidism is the sole cause of my hypoventilation.  Many things could possibly cause hypoventilation.  Hypothyroidism slows down metabolism and body functions (pulse, BP, etc.).  I take Levothyroxin to elevate my thyroid levels to normal though.  More testing would probably be needed in your case to diagnose.  

ASV - if this is the 1st machine you get, it might work for you and it may not.  If/when you get the ASV (or whatever machine you are 1st prescribed), you can download OSCAR here and experts can take a look at it and help to try to determine what is going on with your nighttime breathing.  I was 1st prescribed ST (A).  Then went directly to the Astral ventilator.  Then a side step to another ventilator (Evo). Machines with back up rates can help central sleep apnea.  Back up rate means the machine breathes for you when you stop breathing.  Rate is like 12, 15, etc. (breaths per minute).  ASV has no set rate, but uses a rolling average second by second and minute by minute to determine what rate to provide.  IVAPS/AVAPS have usually a set rate and/or set volume to provide a person at night to ensure that they keep breathing no matter how erratic their breathing gets.

Some medications could possibly help I have read, but I am not familiar with them.  Someone else (or PCP or Sleep Doc) would probably know more about these.  

Relax.  Take a deep breath. The RT who did my sleep study warned me that it would take alot of effort and time to get used to my therapy.  I did not realize how right she was.  I have been at this for almost 2 years now.  There are people here who have been at this for many, many, many years.  It may take some time to get to the end goal.  

Feel free to ask more questions.  There are many members here with a variety of experiences and skills that could possibly help you.
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#6
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Thank you so much for your thoughtful reply! I tried a CPAP, a BIPAP, and auto servo ventilation. Really liked the ASV the most, felt the most natural. Don't know how well I did on it or any of the others but felt good anyway.

Sadly if my diagnosis is confirmed I will have very little time to implement a strategy. Good news there - if you can call it good news - I'll eventually lose all lung function and my central apneas will never be an issue again lol. Quite a radical cure no?

But grim humor aside, I read your post and man I am sorry you had to go through all those hardships and machines before you found something that worked. But the fact that you got help gives me hope!

After going through your posts I was wondering - were you ever offered drug therapy to stimulate breathing? I can't get my BIPAP quick enough so I figured medicine might be an alternative.

Thanks again!
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#7
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Daniel, I am so sorry to hear of your complicated breathing problems, and of possible ALS.  I'm praying that God will guide you and heal you.

I had to do a search to learn what ALS is, and I can offer no advice except to encourage you to ask for advice freely on this board. Others may have knowledge that will help you.  Folks here love to help others, so don't feel bad about asking for help.

By the way  Welcome
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#8
RE: Hello everyone - possible ALS diagnosis with CSA/OSA
Daniel, thank you for the kind words.  The experts here could possibly provide some help when they look at your sleep study if you upload it here (I know you are still waiting on Sleep Doc, etc.).  Just redact (remove) all personal info and upload if/when you can. 

I am guessing leaks were the reason any alarm went off for you (to the best of my knowledge all the machines you have used would only have a basic high leak alarm and not more sophisticated alarms like the ventilators).  So solving the mask leak problem could stop the alarms and help your sleep somewhat.  

Lastly, your PCP could possibly prescribe you some type of medication while you are waiting (or even get you a Pulmonologist consult - they have meds to better stimulate breathing also).  A call and/or trip to PCP could get the ball rolling here.  Totally your decision here Daniel.
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