Sleep Apnea and Chiari Malformation

[LG0526]

I have recently been diagnosed with Sleep Apnea.  I was wondering if anyone else had both Chiari Malformation and sleep apnea.  I am also on oxygen at night because my oxygen was dropping really low, into the 70s, at night while asleep.  Just wondering.  Thanks

LG

[selmaS]

  Oh I agree with u completely.....it is so hard to find the right Dr, but it is key that we have the right one. As u mentioned they tend to not listen or care to hear our concerns with meds.

BTW- yes I would as I feel the same with meds.....

Have u tried antihistamines....they help with reflux and help us with sleep as well....my Drs put me on them and I do not need the reflux meds as much as b4....

And I know what u mean about things on or around ur head....as I could not stand nething either...wearing my glasses at times felt like a vice on my head....and even a necklace  could make me feel as if I was being strangled....most of our senses are on overload so we are over sensitive to things that others just do not understand.

[ITRUSTINHIM]

Thanks for that I am not worried about this my readings were false positive I slept 4 hours this was a very weird set up that she had me on, I had to sleep with this thing at my mouth which in terms made me feel like I had to mouth breath, which is totally unnatural for me. I just wasn't happy with that doctor you can't look at no one and diagnosis them plus I was more so sent there for both but she never did the breathing test, I had wake up one morning weezing and she paid that no attention but after my doctor increase my acid reflux pills that has not occured she said that's what it was more so. This lady was trying to convince me that a Cpac will help my headaches when I can't stand anything that feelis like it restrains or puts pressure around or near my head. But if I was your patient and I had a concern with taking sleeping pills for my own safety wouldn't you honor that

[selmaS]

  Hi and welcome to the Chiari forum,

Not all of us with Chiari have sleep apnea, but we should rule it out as it is more common for those with Chiari....and it is worth ruling it out....

Bcuz of the issues going to a sleep clinic u can do a sleep study right in ur home, they do the oxygenation of the blood testing first...and if a sleep study is warranted then u do that over 3 nights in the comfort of ur own home.Research NOVASOM.....ur family Dr can set this up and most INS will cover the costs.....

With pain, we will have fatigue.....and most of us do sleep but do not feel refreshed.

[ITRUSTINHIM]

I have Chiari 1 but I am going to walk into my healing and trust God more, yes I have headaches I get them more so certain times but I watch what I eat and stuff, I did a sleep study I really think they confuse all these symptoms together because I had fatigue before I ever was diagnosis with the Chiari but I don't snore just a normal like most of us if it was up to 99% of these doctors we all would have sleep apena. Now don't get me wrong some people truly have some issues but as I was reading my test results I am mild in all areas and then I read one line that said my lowest O2 level recorded was 83% but what about the other number now if it stayed that low all night that would be different but there is no way, I would have woke up tried and the place I went to was uncomfortable, I didn't feel safe , I was afraid to go to sleep, had a next door room mate that coughed all night so I was suddenly awaken by that so guess what it was unfair and I got no sleep and yes I expressed this all then she wanted to do part two and give me sleeping pills I said, I don't think so I will not take them. Now I know alot of you complain about sleep going to sleep is not a problem for me and this is one of our symptom but if you give me a sleeping pill and put me in a deep sleep then of course you will get every result you want from the test because it will be consider an un natural sleep. be careful and do your research, I will be expressing my concern with my family doctor also and the fact that she was suppose to do a breathing test on me and never did she looked at me and diagnosed me with sleep apena and oh my sister sees her so she thinks it is hereditiy and that doesn't work for me.    

[selmaS]

  Hi and welcome to the Chiari forum.

This is an older thread and the member may not be active on the site, u may want to send them a PM this will generate a e-mail so she knows someone is trying to contact her.

U can also post in the forum here by starting a new thread and asking current members for help.

[Theodesta]

My son is having the same problem...Had the Decompression surgery, but headaches have returned....whatever happened to you?

[selmaS]

I pray the C-pap works for u too!...Many times it is the lack of sleep  that causes the HA's....and lack  of oxygen.....

Shane has had positive results with his machine.....

Please keep us posted Tina : )
"selma"

[TinaM37]

I had my decompresion operation in June of 2009. I went for my sleep study Friday night and today was told that I also have Sleep Apnea. They told me that the machine could also help with my headaches, I hope so cause even after my operation my headaches are coming back just as bad as before the operation.

[WarriorMomma]

amazing stuff this board can tell you.

[tysgmother]

I also have Sleep Apnea from what I have heard it is something that is very common with Chiari people.  I also found out there are 2 kinds so be sure that you know what kind you have.  One the air way is blocked and the other the brain forgets how to breath.  There are different treatments of them.  The second is the worse.  so don't put treatment off if you have it.  I have had my cpap machine for about 4 months now.  I went from sleeping and hour here and and hour there may be getting 2 to 3 hours of sleep a night.  Right from the start of using my cpap I got better sleep.  I didn't move around as much and starting sleeping longer.  I have worked my self up to about 5 to 6 hours of sleep a night now.  After year of only 2 or 3 broken hours that is great.  My monthly average this month is 5 1/2 hours a night.  

[scottwifey]

I see this post is a little old, but I wanted to say yes, I have both. And Brain stem  compression (caused by the pressure of the herniated tonsils) causes Sleep Apnea. Brain stem symptoms are serious when it comes to CM, your brain stem controls your heart too, usually with CM and sleep apnea also are history of SVT's or other arrhythmias. Good luck and hope you're doing well.

[muffioso]

I have also been diagnosed with Sleep Apnea and use a CPAP with the Mask.

[Shane99]

That's the weird part. As far as I know (and my wife agrees) I don't have problems when I'm asleep. I have a lot of trouble getting to sleep, but once I'm asleep, I sleep fairly well.

I've always been a light-sleeper, but I don't snore badly, I don't jerk myself awake during the night, or any of the other symptoms most people talk about with Sleep Apnea.

I suppose I'm somewhat more tired during the day than I used to be, but nothing more than I would assume someone with a sedentary lifestyle, like I've developed since my decompression surgery, has. I don't nod off during the day or feel particularly tired or anything like that.

[jcitro12]

I have both Sleep Apnea and Chiari Malformation.  I started a post a few months back I believe.  I sounds like they are relarted but I am still waiting on the doctors to get me more factual information.  I have been doing my own research but I am no doctor nor would I ever claim to be.  So I need to get the real for the professionals who I have to trust.

As for the masks, i have tried a few different type, and i recently switched to a full face mask that covers my mouth and nose.  The mask is much more comfortable that any others i have tried.  My wife likes it too because it hides alot of the noise associated with the machine.

[LG0526]

I have severe sleep apnea and have to wear the mask as well as have oxygen at night.  I completely understand about the mask... it is AWFUL.  You kind of get used to it, but it is really uncomfortable at first.  They say it takes a month to get used to it and for it to work.  I was falling asleep sitting up, and when I did sleep I would snore so loudly I woke myself up, wake up gasping for air, and I was so tired all the time.  Try a bunch of different masks, thats what I had to do.  I like the micro/ultra because it is so small.  Good luck with everything.  There is a surgery they can do, but if you have bad sleep apnea like I do its not recommended.  I would love to hear what your doctor says, if you don't mind.  I would really appreciate it.  I hope it all works out for you.  

Best,

LG  

[selmaS]

I am glad to hear u finished the testing, but sorry that the device they used did not help u sleep better.

Good luck
"selma"

[Shane99]

I took the second sleep test last night.

I do have sleep apnea, but the mask they had me wear was very uncomfortable and even after taking a sleeping pill, I was awake in 3 hours and couldn't go back to sleep.

I'm waiting to hear from the doctors as to what comes next.

[selmaS]

Hi...I believe we did a thread on sleep apnea...I know Shane was going to get tested...I am not sure if that was completed as of yet.

I was sent to a sleep clinic as well, but the dr never did the testing...only gave me meds and wanted me to go to a behaviorist (sp)

I can do another poll if it is warrented....

How has being on the oxygen been as far as sleeping...are u sleeping better....is it diff to get used to?

I guess these would be good questions for the poll....

"selma"