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Postby SatninGal » Sat Jan 18, 2014 4:02 pm

This is the first time I have posted on here in a long time. My name is Kaycee, I am 33 and I was diagnosed with Syringomyelia and Arnold Chiari 1 Malformation in November of 2001 and have a craniotomy for trapped fourth ventricle and syrinx in January 2002. I have had it since birth, but only found out about the condition after a CT scan for my severe headaches showed an old bruise at the base of the skull and the doctor ordered MRIs to check further down. I had a CPAP machine in high school, but it seemed to keep me up more than helping me sleep, so I stopped using it. Over the past couple of years I had another sleep study done and got a new machine. I was really hoping it would help this time with my fatigue throughout the day because I was trying to go to college for graphic design, but if it was a lecture class I would usually end up falling asleep without any warning, which usually ended with the professor pointing out that I was asleep in front of the whole class which made me very embarrassed and worried about it happening again.

Anyway, I have tried a couple of different masks, but if they don't wake me up from air leaking out from somewhere, I wake up with my mouth hanging open. If I do seem to sleep through the night I still am exhausted all day and find it difficult or impossible to get any motivation to get anything done.

My question is, does cpap actually work for us or am I just wasting my time?

Sorry for the lengthy post, but I wanted to tell a little about me, I hope to make a lot of friends on here, and I can't wait to get to know more people suffering with the same conditions who may have the same issues as I do.
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Postby pmaxwell » Tue Jan 21, 2014 3:45 pm

Since sleep apnea is a symptom of Chiari I have talked to a number of people who have used them successfully. However I do know the mask can be an issue. It may not be working properly so let you doctor know.

Together We Can...
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Postby SatninGal » Sat Jan 25, 2014 6:23 pm

Thank you Patricia for your help.
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Joined: Sun Oct 28, 2007 4:18 pm


Postby tennesseewalker » Sat Feb 08, 2014 11:29 pm

I've been using CPAP therapy since 2010. It really is a hassle getting used to, but you have to just bite the bullet and force yourself to be diligent about using it every time you go to sleep. The longer you use it, the better you'll feel. Just trust me on that. I was really rebellious about it for a time, but stuck with it. I use the nasal pillows along with a chin strap I made from elastic and velcro. If I don't use the chin strap, the headgear comes right off as soon as I turn over. It still leaks sometimes, but I re-seat the mask and go right back to sleep.

You'll be amazed at how much better you'll feel. Keep using it and keep a journal on how you're feeling each day. Then, after a while, re-read what you wrote in the beginning and compare.

Good luck dear.
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Location: Orlando, FL


Postby texassyrinx2 » Sun May 18, 2014 9:41 pm

I use a Cpap that has the bite plate. It consist of a bite plate and then just nasal cannula. It has no face mask to worry with. I got it online. You have to melt the wax and do your own bite plate but it was easy to do.

You might try this. My cpap did help my feelings of exhaustion.

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Joined: Sat Nov 08, 2008 12:02 am


Postby SatninGal » Sun May 18, 2014 10:54 pm

Thanks everybody for your replies! I usually sleep all night, once I finally get to bed, and I can stay in bed until I wake up naturally or have to get up with an alarm. Unfortunately I have had this for quite a while hoping it would start to make a difference, but other than not having a sore throat from mouth-breathing, nothing else seems to be improved. I'm still tired all the time and find it really hard to have the energy to get stuff done EVER!

I need to start eating better and find some kind of exercise that I can do without hurting my neck too much. Hopefully both of those things will help!
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Joined: Sun Oct 28, 2007 4:18 pm

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