central sleep apnea

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alex scared

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hi all . . I was wondering if anyone has any experience of central sleep apnea? . . . For the people that might not know my story a few months ago i started having some difficulty and discomfort breathin during the day . . This got progressively worse and started to affect me at night. All kinds of tests were ordered one of which was a sleep study . . Turns out that amongst other things i have the rare form of sleep apnea . . now bearing in mind that i show no other symptoms of weakness anywhere in limb or bulbar areas . . I only have breathin muscle weakness , bodily twitchin and now central sleep apnea. . Does this new diagnoses point in either direction? Totally confused . . (easily done when your as dumb as me !)if any one has any idea of what this could mean i would appreciate the input . . God bless . . Alex
 

Tokahfang

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Unfortunately, what exactly is causing your respiratory weakness is probably only going to be discovered by a wait and see period. Have they even determined whether you have a muscle-born weakness or neurological weakness? Progression, if there is any, will be the main metric to see if this is an isolated problem or part of a greater disease picture. It's going to take a lot of patience.

I hope they have hooked you up with a machine to breathe at night, and that you are followed by a good pulmonologist!
 

alex scared

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hi beky thanks for taking the time to respond. . Cause of breathin muscle weakness is neurological accord to my neuro and its definatl getting worse. -But he has admitted that its strange that no other parts of my body are affected at all (twitchin aside . . 8 years of it! ) now this rare form of sleep apnea has shown up i have since been told today that this is common with neurologic disorder . . Apparently the breathin control centre gets affected and the signals to breathin muscles from the brain do not get sent . . To answer your question i have been given a c pap . . Not helped much but better than nothin. I was just wondering if anybody if it pointed in either direction . . As you said beky time will tell . . Thanks again because i respect your opinion . . God bless alex
 

rose

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I've read about central sleep apnea. You're right that it is central nervous system related. Most of the time, with MND, the problem is obstructive apnea.

I am adding a link to an article, and wanted to draw your attention toward the bottom, where it states: Certain neuromuscular diseases, such as mitochondrial cytopathy, are further complicated by disordered central ventilatory drive contributing to their sleep related breathing disorder... Have you asked specifically to have mitochondrial disorders investigated?

qjmed.oxfordjournals.org/content/81/3/961.full.pdf

(I could not get this to hyperlink. You should be able to copy and paste into your browser)
 

alex scared

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hi rose thank you for your input. . I have not asked them to investigate anything yet cos forgive my ignorance but i still totally bemused by it all . . I thought apnea was all obstructive . . Didn realise that there was any other variation. . Apparently its rare . not too sure how they can differenciate a diagnoses of obstructive or central . Thank you for posting that link i will have a look with interest .i have not heard of mitochondrial disease ( you must think i am totally dumb) but again will ask my neuro if this is likely . Thanks again rose hope all is well with you . . god bless . . Alex
 

rose

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Alex,

I don't know how they go about distinguishing between the two types of apnea, but, after I did my first sleep lab, and was discussing the findings with the sleep lab doc, I specifically asked if I showed any c.s. apnea. (During a sleep lab, the patient is hooked up to all kinds of electrodes which measure brain activity, etc. so they do know if this occurs) The reason I was interested was because sometimes I would draw in this sharp intake of air at night, like I was forgetting to breathe. Others here have talked about doing this, and after reflection, I think its just due to breathing too shallowly, and our body compensating, as breathing is an autonomic function rather than voluntary. (and no, I showed no episodes of central sleep apnea, only obstructive.)

There are a few folks on here who have learned about mitochondrial disease. Maybe one of them will post, or, better yet, you can try to contact via pm. I remember that Planningguy (Robert) learned a lot about it, and was tested for it. I'm sure he'd be more than happy to share, just send him a message, and tell him I said "hi" 8)
 

limegreenphysicist

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Hi Alex I have sleep apnea but it is inherited from my mother of which I have only been suffering from in for the last 6 years but that is when my mother started having issues with it and it is not obstructive. I simply just stop breathing due to my CNS. I have been told to get the oxygen at night just to be on the safe side but I declined until it gets really bad. My mom has awaken everyday for 63 years so i can too. I'm a little stubborn if ya cant tell. Apnea is so interesting. I have never felt inclined to investigate it further and enjoyed the links and the thread.
 

alex scared

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hi limegreen . . Thanks for your response . Your totally right about sleep apnea being interesting . . I never had a problem sleeping until all this started and then all of a sudden i seemed to be waking up every 5 minutes at night . According to my sleep study i woke 32 times .! With most of my symptoms being respiratory it makes for uncomfortable nights. . I have been issued a c pap but it not really helping . .sorry to hear that you have this too . . Is this common amongst people with neuromuscular issues? . . God bless . . Alex
 

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I also had the sleep study done.. However it was my cardiologist that referred me to them.
The Neurologist told me sleep apnea normally does not show up until later stages of ALS.
In my case I find that if I sleep on my back I will wake up choking/wheezing really bad , so I have learned to always sleep on side or stomach.
I also find myself briefly waking up every half hour or so , but the sleep study said it was not sleep apnea.
 

alex scared

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hi polar . . Thank you for your response. I think the thing that gets me is i still struggling to get to grips with the various changes that appear to be going on . .some seem to point to serious neuro issue i e . . Breathin weakness . . Twitchin . .now this neurological based apnea . . . Yet all my limbs are fine . . I still look like the ugly great big lump that i always been. . Confused . . I think the message that beky sent about wait and see will ring true . . Thank you rose beky limegreen and polar . . You guys are awesome . . God bless . . Alex
 

limegreenphysicist

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My apnea has always been a problem so I'm not sure on how common it is among ALS patients but I know it is non-diagnostic. I have arrythmia which some docs think attributes to apnea. Its wierd to wake up at night after you just quit breathing but so far I have been able to live with it even though my docs have tried to put me on oxygen at night for many years just in case.
 

alex scared

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limegreen . . Your totally right . . Just waking up and realising that your breathin had just stopped is scary and a strange feelin . . How you have put up with thisfor 6 years without trying to treat it is beyond me . . Cos in effect it stops you ever getting to good deep sleep it has the effect of sleep deprivation . .i had it 4 months and its made me look like crap ! I look like uncle fester from the adam family! Left untreated it apparently can have detrimental effect on heart . . So please dont be too stubborn . . Alex
 

limegreenphysicist

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Its just never really bothered me. But to be honest not much does since I joined the military years ago. Everything is trivial to me including health. Idk..I'm too much like my dad just dont give a rip lol. Even this disease is not so bad, I just think, it could be worse and I pick myself up spin around 4 times and then kick myself in the ass :) Thats my cure for everything haha
 

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Hi,

There is a variant of ALS that starts with respiratory weakness. My husband's diaphragm has became mostly paralyzed - so much so that he cannot breathe while lying down without assistance from his AVAPS. The shallow breaths he took did not clear out the CO2 and he began having narcoleptic episodes as well as hallucinations. As your body gets overloaded with CO2, your brain gets out of whack so that when you do get some oxygen, your brain says - great! oxygen! don't have to breathe now! - and you stop breathing. After his sleep study, he found out that he was not getting any REM sleep. His body simply quit breathing during that time. He would wake up and start breathing again. It's not fun, that's for sure. He also told me that he sat up one night making sure that he breathed in and out all night long.

Besides all that, he only had minimal limb impairment at first. So minimal that he attributed it to old age (62!) Finally, it all started coming together. So, hang in there. Hopefully they will figure out what to do with you.
 

alex scared

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hi lynn thank you for that . . Some of that sounds just like my current situation . . The minute i cross over into sleep i just simply stop breathing . . And no chance of lying flat . . I have no limb weakness whatsoever and am only 34 . I think the worry comes in c0 2 build up .
 
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