You know u have chiari when~~~~~~~

[selmaS]

finish the statement.

This is a fun thread we have done b4...seems the right time to do it again......

[selmaS]

  Hi and welcome to the Chiari forum,

The poster u r replying to is not an active member but has popped on a few times recently so to inform her u r trying to make contact, send a PM (private message) that will generate an e-mail so she will know someone would like to communicate.

Since u have POTS, do u know if u also have EDS or Chiari?

[HazyHazel]

I have no idea if you will get this but I just read your, "you know you have Chiari if ...." post and I could relate to so much. I have POTS(dysautonomia) and but I have some odd neurological problems as we'll.  I  have been trying to explain the experience that sensation of waking suddenly from sleep with severe vertigo. You explained it so well! I was just hoping you knew more about the reason.

[chiari4234]

omg thats me

[randomlycurious23]

WOW.. I can't believe it. I have found someone who completely understand what this stupid thing can do. Thanks for writing this. I am SO glad I saw this!

[selmaS]

  So sorry Molly....I am sending prayers ur way.

[soccero]

you feel like crap way more thank you dont ;(

[selmaS]

  Hi and welcome to the Chiari forum.

U may want to start a new thread with ur questions and concerns as it may get lost in this thread.....

Many of us have been accused of either not being truthful about our symptoms such as overstating them or being drug seekers....it is difficult as not many Drs r well informed or experienced with Chiari.

And yes to ur questions about choking...as for the sleep issue, if u r gasping for air, that may be sleep apnea and it is considered a related issue  and u should be tested for it.

Just know u r not alone.

[frankie_rush]

When your eyes fell like someone is trying to make Wine, using them.  Squeeshy, Squeeshy

[ChipegO2289]

I know what you mean! I have all kinds of whole-body symptoms that have increasingly gotten worse over the past couple of years, until I got an MRI done. The first one apparently did not show Chiari because no one said anything about it, but this past January (2-3 years later), I got such scary symptoms that I knew I had to find an answer, and he said I did have Chiari, but he blew me off and said it wasn't causing my symptoms. However, I researched the disorder, and the symptoms it lists are EXACTLY what I'm having!

[ChipegO2289]

Let me tell you...I started having scary symptoms this time last year (thought I was having a stroke or a heart attack), and I called an ambulance and was taken to the ER....where they treated me like scum because they thought I must be drunk. Every test they did turned out normal, and I was discharged. The doctor thought maybe I had MS or an enlarged heart (based on palpating it), and I had to have all kinds of tests done. MRI showed Chiari Malformation....I shouldn't complain because at least mine isn't bad enough to require surgery, but truth is, I am miserable, and I feel like no one gets it...until I read these posts! They hit the nail right on the head, but everyone else thinks I'm flitty, paranoid, emo (which I have been since a couple of years before the "big" symptoms started), weird, hypochondriac, just "stressed," and I get so fed up! I love this page because y'all actually get it. Question: does anyone choke, feel faint/fluttery, see colored spots, and basically get the sensation that they're deprived of oxygen and dying when they wake up from deep sleep?

[Pjg1066]

Loved that!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

I am so happy to hear u were able to get info from reading and I am even happier that u decided to join us by posting.

Please feel free to start a new thread and ask questions....one at a time, how ever is best for u....just know u r not alone <3

[JMC1963]

I recently got diagnosed with Chiari and Syringomelia. I want to thank you all for this forum, I have read alot of the posts in the last few weeks. Honestly, I can not digest too much at once because it is overwhelming. But, I have found out thur your posts and the " you know you have chiari" thread, that all these years I knew something was wrong. From the throbbing in my head like Fred Flintstone, to the random muscle cramps to the numbness in my back that they said "shouldn't be there",NOW I know I am not crazy! lol. Thanks and I will continue to read and absorb info from you fine people!

[jiggle93]

I have it also Tanya, I am currently on no meds and have not had surgery yet. I have had it as long as I can remember, but thought everyones ears did that...much like my other symptoms!  

[ChiariWolf]

Absolutely, Tayna, I do have constant ringing in my ears. Better at times worse others. It seems when things are off kilter in my head the ringing gets louder. When I'm feeling good it gets rather faint. It never completely goes away though.

Now as for 'You know you have Chiari when...." your shoulder feels as though it's been doing way more than it should have been yet you've yet to get off the couch.

CW

[selmaS]

Hi and welcome to the Chiari forum.

Glad u were able to laugh at the comments...I hope that it didn't hurt too much...lol....

I hope we r able to offer ne answers to questions u may have.

[Roxxanne]

Hello. I have just been diagnosed with Chiari's this week. After looking at these you know you have Chiari, I find myself very able to relate to many of them and laughed at many of them. Thank you for the humor.

[selmaS]

  Hi and welcome to the Chiari forum.

Thank u for sharing the name of a NS that is experienced with Chiari....please add the name to the list of Drs thread so all the names are in one place.

May I ask how long ago u had ur surgery?

The tinnitus can be from meds, but I have had it all along, it went away post op, and slowly returned.....

[tayna2008]

Does anyone have the ringing in the ears all the time too because of chiari?

[tayna2008]

Look up Dr. Paul Matz head of surgery in St. Paul Minnesota.  He ain't no joke.  If he cannot help you there is not help for you.  Or the head of Neuro-surgery at UAB in Birmingham Alabama.  Baby!  They are goooooood!!!!!  I had the worse kind, even had to have two spinal bones removed along with a large chunk of my skull and I am FINE!  No more pain when I cough, sneeze or laugh really hard.  Had the flu and no pain what so ever.  Paralysis is gone and these doctor held out little hope for me.  

[AnnieDear]

You know you have Chiari when. . . . wait. . . what was the question again?

;)

Darn memory!

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask when u got ur DX and if u had surgery? Do u have ne other related conditions?

[heribertoguerrero91919]

My name is Eddie  and I feel like Im diving in the bottom of a 12 feet deep pool     the preasure on my forehead  is crazy  my sinus are not stuffy and I don't have a cold  

[classiechic]

Wow! I can relate completely. I hate that you have to live this way, yet I must admit.....you just described me completely. I'm praying for you, all of us who have to live this way.