This is gross I know but I have to ask!

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Permalink Reply by Michael Salasky on February 11, 2012 at 2:44am

I don't get all of these but my oldest daughter does, usually lasts about 15-20 minutes.  She recently had a MRI of the brain but of course it didn't show anything.  They didn't use contrast with it though so I wonder if that has something to do with it not showing.  If something turns up on her I will let you know, it might help.

Take care

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Permalink Reply by Bill Zern on February 11, 2012 at 9:11am

Every problem you may have is chiari-related... The nervous system is being stressed and your body chemistry is all off, I mean it's amazing that we can actually live with this. Symptoms can peak at night after a full day of being awake and active so my big question is - What did you do the day before this all happened?

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Permalink Reply by Diane John Jr Oliver on February 11, 2012 at 10:23am

Well I actually had a good day and when ever I have a good day I try to get as much done as possible even tho ppl tell me not to but it's hard cuz I had like 4 hard days in a row. It's insanity on my part cus I always pay for it but never like this! Thank u for ur replies!

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Permalink Reply by mommy.of.two.5483 on February 11, 2012 at 12:04pm

I have had this happen, but it happend to me after spinal taps. I thought I was gonna die, it was so horrible!

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ModeratorPermalink Reply by Twitch (Adam) on February 11, 2012 at 12:50pm

I've had some similar issues.  I have never had a problem with "acid reflux" until this last November.  Now, I'm regularly vomiting in my mouth while I sleep.  The only thing that seems to help is taking a Prilosec twice a day.  I also have regular jaw pain.  Gets so bad at times that I just refuse to eat.

I'm with Bill.  There is nothing these days that I don't suspect to be Chiari related.  

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Permalink Reply by Cholmee on February 11, 2012 at 3:25pm

I am absolutely having similar issues. I get constant jaw pain, no appetite for fear of feeling sick, but then feel sick anyway. My PCM gave me Reglan and I've had to take it 3 days in a row at this point. I haven't gotten to the point of actually getting sick, but it wouldn't surprise me if it progresses to that eventually. I'm also on Prilosec daily. It seemed to help at first, now I'm not so sure. 

Hope you're feeling better today!

Kellie

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Permalink Reply by Diane John Jr Oliver on February 11, 2012 at 7:51pm

Well thanks guys, I don't feel totally insane now! Tell me something...y does everyone else try to find something else wrong with us lol? Ppl tell me o no tht can't b Chiari even my ns, the specialist, said idk what ur symptoms r from but they're not from Chiari and my mom is trying to dx me with the same thing those girls in new York I think have...drives me crazy! I would appreciate it much more if she would just read bout Chiari n understand it! Everything I have relates to Chiari n if I don't know I ask u all and so far it all still relates. U guys always help with any info, I'm still learning so much bout this so thank u!

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Permalink Reply by razzle51 on February 12, 2012 at 9:16am

if this still is going on for the next few days get to the dr. could be something entirely different

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Permalink Reply by Bill Zern on February 12, 2012 at 3:26pm

hahaha yessss!! I mean it's not funny but it's comforting to hear that somebody else is surrounded with people like that. It's like my entire family doesn't even believe Chiari exists even though I have several very convincing MRI pictures that say otherwise. Oh and the radiologist reports, doctors reports, surgery approval, and the fact that every single one of my symptoms just happens to be a symptom of Chiari. The worst thing I've been dealing with lately is that when somebody suggests something stupid, I politely say "I'm sorry but you don't know what your talking about and I would love to explain it to you whenever you'd like."  Everybody I've said this to lately has gotten really defensive and ended the conversation right then and there. Like why can't we just calmly sit down and talk, maybe look at the wealth of material online, and just separate the facts from whatever cooky brainwashed ideas they have of health. No, eating bananas will not help the ringing in my ears, I do not have a potassium deficiency, I have backed up fluid pressing on my nerves! arggggg. What is your mom dx you with?? 

Diane John Jr Oliver said:

Well thanks guys, I don't feel totally insane now! Tell me something...y does everyone else try to find something else wrong with us lol? Ppl tell me o no tht can't b Chiari even my ns, the specialist, said idk what ur symptoms r from but they're not from Chiari and my mom is trying to dx me with the same thing those girls in new York I think have...drives me crazy! I would appreciate it much more if she would just read bout Chiari n understand it! Everything I have relates to Chiari n if I don't know I ask u all and so far it all still relates. U guys always help with any info, I'm still learning so much bout this so thank u!

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ModeratorPermalink Reply by Twitch (Adam) on February 12, 2012 at 4:56pm

LOL.  Bill, you're quickly becoming my favorite person on this website.  Eating bananas....LMFAO.  I have people all the time that say, have you tried Excedrin for your headaches?  Or, have you checked your blood sugar lately?  It's all I can do to keep from hurting someone.

I realized the day before yesterday that I was Q-Tipping my ears 8 or 9 times a day.  It felt like they were full of wax.  It took me a couple of days to realize that I didn't have wax in my ears.  It's the goddamned Chiari.  Now, it feels like I have my fingers in my ears 24/7.  The pressure is so great, it's making my throat tickle.

Is there anything that this condition DOESN'T cause?

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Permalink Reply by Diane John Jr Oliver on February 12, 2012 at 6:43pm

That's what I'd like to know! I have tht prob...always feeling like I have water in my ears, some days r really bad and others aren't so bad but it's annoying. I have heard all those things lol blood sugar for dizziness, excedrin for h/a and even the bananas lol that's too funny. Personally I would rather have one issue to deal with than have fifty different things causing fifty different symptoms! I don't understand y they can't accept the Chiari or y they'd rather waste their time looking into everything else! I think for my mom anyway, it's bc my ns said my flow was fine by my MRI so I surgery would do me no good n she wants to find some way to fix me now. a good education in this would be great.
Bill have u seen tht story on those girls in New York tht r all having Tourette symptoms? Some call it mass hysteria, some believe it's some kind of chemical reaction bc 12 girls came down with it at the same time but they've tested the air in the school. My moms believes its chemical so now she's sayin I got this demolitioning these rms last summer, even tho my ha were way b4 tht! So I said how do we know n how do we fix it? Give her something to do since she doesn't wanna read on Chiari lol I mean I know this sounds weird but I was kinda relieved all my symptoms were from the same thing...it explained a lot but now tht I know I can't fix it...not so happy but I'm done figuring out what it is...I KNOW what it is, I know my body! Sorry I look fine but I'm not lol
Have a good evening everyone, stay strong, u r all in my prayers

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Permalink Reply by Bill Zern on February 13, 2012 at 7:54pm

Thanks Twitch, likewise :) I feel ya about the ears thing. I have a lot of wax going on everyday. Many times a day I will just stick my finger in my ear while kind-of pinching my ear-lobe and just kind of move my finger inside in a circular motion while slightly tilting my head to that side. Feels like it relieves some head pressure when I need it.

Btw I was checking out your MRI's and I highly recommend you check out what Dr.Bolognese has to say about umm... everything haha. VIDEOS LINK --- on the bottom right, click on patient education, and I know there's a video about syringomyelia you might be interested in. Actually you should watch as many of those as you can because they're awesome. Basically I think what you are seeing in your MRI's is the tiny canal that actually runs down through your spinal cord. This is the canal that fills with fluid and leads to the development of a syrinx. I think where you and I both are right now is what some doctors call a pre-syrinx stage as this canal fills with a little fluid and becomes visible where normally the canal is barely even visible.    I'm obviously not a doctor, but from seeing a lot of MRI's of CM, it also looks like you have a smaller than average foramen magnum and definitely a retroflexed odontoid.  Sorry, I ramble... hope this helps in some way<3

Twitch said:

LOL.  Bill, you're quickly becoming my favorite person on this website.  Eating bananas....LMFAO.  I have people all the time that say, have you tried Excedrin for your headaches?  Or, have you checked your blood sugar lately?  It's all I can do to keep from hurting someone.

I realized the day before yesterday that I was Q-Tipping my ears 8 or 9 times a day.  It felt like they were full of wax.  It took me a couple of days to realize that I didn't have wax in my ears.  It's the goddamned Chiari.  Now, it feels like I have my fingers in my ears 24/7.  The pressure is so great, it's making my throat tickle.

Is there anything that this condition DOESN'T cause?

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