Connective Tissue Disorder and Hyperinflation

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Bracerlacer
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Connective Tissue Disorder and Hyperinflation

Post by Bracerlacer » Tue Feb 09, 2016 3:44 pm

I was excited to start CPAP for moderate sleep apnea. VPAP S10
I used several different masks. After 3 days I had chest pain, blurred vision, numbness in the extremities. My provider did not respond to my concerns. I continue to try to get used to CPAP. My pressure settings were considered too low to be dangerous. I have Ehlers-Danlos Syndrome. A pulmonary function test and arterial blood gas test confirmed that CPAP did damage my lung tissue. Since there is deficient elastin in my alveoli reversal is at best UNCERTAIN! Ehlers-Danlos Syndrome is a rare connective tissue disorder with a high prevalence of fatigue and sleep apnea. What other treatments are available? Dental appliances or surgical interventions are not an option due to joint laxity in the temporo-mandibular joint and poor wound healing. Is supplemental oxygen an option?

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chunkyfrog
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Re: Connective Tissue Disorder and Hyperinflation

Post by chunkyfrog » Tue Feb 09, 2016 3:55 pm

Talk to your doctor, or better yet, a SPECIALIST.
Any alternatives must be discussed with your condition in mind.

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MrGrumpy
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Re: Connective Tissue Disorder and Hyperinflation

Post by MrGrumpy » Tue Feb 09, 2016 10:50 pm

Its good you got that confirmed. I admire you on that. Honestly though, Im surprised you got a doctor to admit CPAP treatment did ANY damage to you, as that is opening them up to being involved with potential litigation. Where I am, its rare a doctor will incriminate themselves if there is the slightest chance it might drag them into even being a witness in a litigation case.

Either way, kudos to you on getting some results when things go bad.
Id be dead by now if I didn't use my CPAP gear every night.

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chunkyfrog
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Re: Connective Tissue Disorder and Hyperinflation

Post by chunkyfrog » Wed Feb 10, 2016 6:21 am

Was your disorder diagnosed before or after the cpap Rx?
(If so, a hell of a way to find it)
Your particular condition is uncommon, but an established contraindication to cpap.

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Last edited by chunkyfrog on Wed Feb 10, 2016 6:30 am, edited 1 time in total.

JDS74
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Re: Connective Tissue Disorder and Hyperinflation

Post by JDS74 » Wed Feb 10, 2016 6:22 am

Here are articles on Pulmonary complications:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC460052/

in this one, scroll down to the Pulmonary Accident section.
Ehlers-Danlos Type IV

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napasun
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Re: Connective Tissue Disorder and Hyperinflation

Post by napasun » Wed Feb 10, 2016 12:36 pm

I'm sorry you've had such a bad experience. I'm curious, are you type IV EDS? I have a probable type IV friend considering CPAP. I will share the info. We are on such a spectrum it's hard to foresee and balance the risk/reward in some cases. There are a lot of posts in the EDS forums at Inspire if you search 'cpap' or 'apnea'. This one in particular might provide a lead to a doctor very knowledgable in apnea and EDS. Topic title: 'EDS and being sleepy...help from a tech' https://www.inspire.com/groups/ehlers-d ... om-a-tech/ Good luck and let us know what you learn and how things go.
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Janknitz
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Re: Connective Tissue Disorder and Hyperinflation

Post by Janknitz » Wed Feb 10, 2016 2:33 pm

EDS is actually not that uncommon (at least among people I know--many people with Noonan's Syndrome also have some degree of EDS), but this severity is. I know of one Noonan's individual with severe EDS who is on supplemental oxygen for sleep. It seems to help. I was wondering why she was not prescribed CPAP, and this may explain it.

Hope you find a way to safely treat your apneas.
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