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#1
Hi all! Just like my username says, I am Carleen. Tonight was the first of four nights of my CPAP Titration Study which, I suppose, will ultimately determine the settings that go on the CPAP I will receive soon. Now that I've outed myself as a total newbie to this whole process, I hope to learn lots from the pros.

Because I never like to do things the easy way, in addition to OSA, I have what is classified as a rare brain disorder called Arnold Chiari Malformation I. In a nutshell, if someone asks me whether I've lost my mind/brain, I can honestly say yes -- well, at least part of it. The tonsils of my brain have been vacationing south of my skull for quite some time and the bad thing is that they can't come home. Once the brain tears out of the three layers of membrane that cover it and ooze down into the spinal canal as mine has, the leaked portion can never be put back where it came from. Considering that the spinal canal is a fairly narrow space designed to hold only that oh, so important shoestring that we call a spinal cord, having a chunk of brain competing for space there causes all kinds of problems, the worst of which are headaches (I never knew how many different kinds of headaches existed until I started to get them all, LOL!) and seizures. Surgery has safely lifted my leaked brain slightly up and away from the spinal cord so that it doesn't get squished and kill me, and the removal of a piece of skull and three neck bones should ensure that the peace treaty between brain and spine lasts for a while.

Although the brain and spine are currently at peace with one another, that doesn't mean that all is well in the hood. A hole in the head, missing bones, three different types of headaches, and seizure activity are not exactly conducive to sleeping well. Add OSA (AHI is 46.4 and SpO2 is 57% for more than 2 seconds) to the mix, and you can begin to see why I haven't slept longer than 2 consecutive hours in years.

I hope that I don't pester you all too much as I begin this new adventure with the CPAP, but I can't make any promises! Bigwink
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#2
Hi Carleen, welcome to the forum.

I confess I have never heard of that condition - it sounds awful. But it also sounds like you've got the right attitude! Good luck with your sleep study. CPAP can be a bit of a struggle at first, and a good support network is essential. That's what we're here for, so don't worry about pestering us. We thrive on pestering.

Welcome
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.
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#3
Welcome to the forum!!! We are glad you joined us!!! Welcome
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.
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#4
Hi carleen,
WELCOME! to the forum.!
You have a GREAT attitude and that will go a long way as you start CPAP therapy.
Hang in there for more responses to your post and best of luck.
trish6hundred
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#5
Thanks for the warm and friendly welcome! I tried to post a link to a page with info on ACM that I wrote a while back but was unsuccessful. At any rate, the ACM is the primary cause of my sleep apnea, so I come by it honestly, LOL! Here's a snippet that explains the connection:

"Of the myriad symptoms associated with ACM, sleep deprivation is the one that bothers me the most. In addition to developing the habit of snoring, I struggle with heart palpitations and seizures during the night -- none of which is conducive to sleep. I'm not alone in my misery, though.

A study published in the December 2003 issue of the Journal of Neurosurgery indicates that sleep apnea is a common cause of ACM patients' persistent tiredness. Since the respiratory control centers are located in the portions of the brain under assault by ACM, it would make sense that Chiari patients would have a higher incidence of sleep disruption than the control group. In fact, we beat the control group by a significant margin: 64% of the patients in the Chiari group had, on average, 18 episodes of sleep disruption in a single night as compared to 12% of the control group whose sleep was disrupted an average of 3 times in the same time frame.

It's no wonder I sleep like a cat and can count chronic sleep deprivation among the numerous diagnoses that accompany Chiari!"

If a CPAP will help me deal with this symptom more easily, I will be one happy camper for sure.
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#6
Chiari! Lovely condition with loads of fun with headaches. Do you have the tethered spine as well?

CPAP doesn't help anyone sleep better unless there are apnea events. Snoring would indicate hypopneas at the least and CPAP can help that. Do they suspect you have Central apnea as well?
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.




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#7
(11-23-2013, 11:38 AM)PaulaO2 Wrote: Chiari! Lovely condition with loads of fun with headaches. Do you have the tethered spine as well?

CPAP doesn't help anyone sleep better unless there are apnea events. Snoring would indicate hypopneas at the least and CPAP can help that. Do they suspect you have Central apnea as well?

Thankfully, I do not have a tethered cord to deal with along with the half dozen or so other symptoms that make my life so interesting. (BTW, it was really nice to find someone who knew what ACM is!)

As for the apnea events, is that what is reflected in the AHI score? I'm not sure. According to the results of my sleep study test, my AHI score is 46.4 and the SpO2 came in at 57% for longer than 2 seconds. The original diagnosis is "very severe obstructive sleep apnea."
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#8
AHI is the apnea events (both central and obstructive) plus the hypopnea (narrowed airway) divided by number of hours slept.
http://www.apneaboard.com/wiki/index.php?title=AHI

And wow, a drop to 57? I think you win an award for that one. Congrats?

Have you seen Archangle's machine choice page? With all of your other fun things going on health wise, you will definitely want a data capable machine.
http://www.apneaboard.com/wiki/index.php...ne_Choices

That way you can keep track of the data and know at a glance how the treatment is going. I would also think an autoPAP would work out best, too, since you probably take medications so things are in constant flux. an APAP can adjust to all that.

As for knowing about ACM, I have Ehlers-Danlos Syndrome, Hypermobility Type. Chiari is something a lot of us have. Malformations or subluxations of C1 as well as the base of the skull is not common but happens. When I have the chronic headaches, pulling up on my head will make them go away. Traction won't work at home because the wrong angle causes intense pain. I have a neck brace I wear and now trying some various medications that seem to be working. The problem with mentioning Chiari in this area is about 10 years ago, a knife happy doc came through here and started doing the surgery for it. But some of his patients didn't need it and some of them came out worse. There were malpractice suits all over the place. He was disbarred. So you can't even mention Chiari to a doc without them turning pale. The MRIs of that area show some narrowing but they're not of the right something layer or something. My C1 and C2 are only slightly out of place, depending on the mood of whoever is looking at the imaging. Rolleyes There's no debate about C4,5,6, nor T2 and 3. No one wants to see what L and S looks like. Laugh-a-lot
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.




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#9
Welcome carleen, feel free to ask any questions you have, this is a long journey and hope it all goes well.
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#10
(11-23-2013, 11:58 AM)iamcarleen Wrote: As for the apnea events, is that what is reflected in the AHI score? I'm not sure. According to the results of my sleep study test, my AHI score is 46.4 and the SpO2 came in at 57% for longer than 2 seconds. The original diagnosis is "very severe obstructive sleep apnea."

Carleen, as Paula said, the AHI is the apnea - hypopnea indix, which is the total number of apneas plus the total number of hypopneas divided by the hours asleep.

From what you've said, I suspect you will have a high percentage of central apneas. Apneas come in two flavours:

1. Obstructive, where the airway narrows or collapses, so that you're trying to breathe, but the air can't get past the obstruction (usually associated with loud snoring but not always); and

2. Central, where the message from the brain stem isn't getting through to the nerves that control the diaphragm. In this case you just quietly stop breathing until low oxygen or some other signal "reminds" the brain stem to get you breathing again.

If centrals are a large component of your apnea, then you probably need a more advanced ASV (auto servo ventilation) machine such as the Resmed VPAP Adapt ASV or the Philips equivalent. Make sure you discuss this aspect with your doctors. The ASV machines are more expensive and have more parameters to adjust (particularly the Philips) but they are the only way to treat intractable central apneas.
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.
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