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MoyaMoya and Sleep Apnea (Read 745 times)
cheri
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I Am the Captain of my
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Rock, USA, usa, 365, 69, MI, Michigan
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MoyaMoya and Sleep Apnea
Jul 2nd, 2010 at 5:23pm
 
Sorry if someone posted about this topic before.  My Verizon has been giving me trouble and I have just about gave up on the internet with them.  However i am on a very slow dial-up right now and need some info.  Has anyone with moyamoya been diagnosed with sleep apnea.  I understand 90 percent of sleep apnea is obstructive...and 10 percent is central sleep apnea.  Central is caused from a lack of signal from the brain to the diaphram..it does not tell it to breathe after the apnea.  It can be caused from neurological diseases.  If anyone else has sleep apnea I'd appreciate some input.  Is it coman with moyamoya and what can be done?  Thanks for any comments and answers!
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When the world says "Give Up",   HOPE whispers....."Try One More Time"!
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charl
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potsdam, USA, usa, 473, 66, NY, New_York
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Re: MoyaMoya and Sleep Apnea
Reply #1 - Aug 12th, 2010 at 7:51am
 
My daughter molly is going next week for a 72 hour eeg test for narcolepsi or sleep epilepsi. she is unable to go to sleep even with meds and does not feel rested when she does get up.if it is not siezure activity we will be going to the sleep lab for other sleep disorders including apnea. when we find any info i will post it. any info you have should be posted as well so we can all have this information.
thanks for posting, Amiee mollys mom
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my now almost 19 year old daughter/sister have moyamoya
 
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Corinne
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Lindsey

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Breaux Bridge, LA
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Re: MoyaMoya and Sleep Apnea
Reply #2 - Aug 13th, 2010 at 9:20am
 
My Daughter Lindsey who has Moyamoya and Down Syndrome (surgery March 2010) was diagnosed with Sleep Apnea 9 years ago and uses a CPAP machine. She does not go anywhere without her machine. It has made a world of difference for her. She did the sleep study and used the machine the 2nd night and she was sold. She asked for a machine the very next day and has not stopped using it since. She was diagnosed with obstructive sleep apnea. Her airway is very small. She also had to remove her tonsils and adenoids as well.

I don't know how it ties to Moyamoya or if it does at all. My son who has Down Syndrome also was also diagnosed with sleep apnea and can't us the CPAP. It puts air in his stomach and is very painful. He does not sleep hardly at all. We are in the process of testing him for Moyamoya because recently he is having episode very similar to his sister. Cry

Good luck with your situation.

Corinne
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Mom of Lindsey who has Down Syndrome diagnosed with MMD at 22 Years Old in 2010
 
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yassin3
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Re: MoyaMoya and Sleep Apnea
Reply #3 - Jan 11th, 2020 at 6:30am
 
I am 35 and also have severe sleep apnea (59 apneatic episodes per hour). I am recently diagnosed and just wanted to share my story so that people can understand how severe of a situation sleep apnea can be.

I am not overweight. I am currently 5'9" and 175 lbs (BMI has that as overweight, but I'm an athlete with a decent amount of muscle), and a lifetime competitive swimmer who has swam at a high enough level to qualify for Olympic Trials. I have always been nutritionally conscious and have exercised my entire life. I have always slept well, and have never felt tired during the day. My wife has said that I snore from time to time, but never really complained. In short, I did not present any symptoms of sleep apnea and certainly didn't fit the profile of the typical sleep apnea patient.

In May of this year I went in to the Doctor for a check up and found my blood pressure to be 240/135. I was immediately referred to a BP specialist (who was also a kidney specialist), and he sent me in for a sleep study. As a result of the high blood pressure (caused by years of undiagnosed sleep apnea), I had lost 75% of my kidney function and was told to prepare for dialysis and kidney transplant. I started CPAP therapy in July, and now love it. It's kind of a pain in the ass to have the hose and mask sitting by my bed, but I have zero complaints about the quality of sleep. My BP has improved with the help of medicine, but I hope that over time the CPAP will allow me to come off some if not all of the medication. I have had to drastically change my diet to try and improve kidney function, and will probably have to continue a low sodium diet (less than 1500 mg/day) for the rest of my life. I have regained some kidney function and am no longer looking at dialysis/transplant in the near future, but it is something that is still a very real possibility in the next few decades.

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« Last Edit: Jan 11th, 2020 at 7:16am by yassin3 »  
 
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