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I’m looking for anybody with Syringo(hydro)myelia and/or Chiari Malformation (ACM) to talk or whatever. Send me a message or whatever.

,I’m just looking for talk to anybody else who shares these disorders with me or knows somebody who does. #ChiariMalformation #Syringomyelia #Syringohydromyelia #ArnoldChiariMalformation #ChiariMalformationVSFibromyalgia #Chiari #Chiarilife


Misdiagnosis #ChiariMalformation #ChiariHeadachesVSMigraineHeadaches #ChiariMalformationVSFibromyalgia

I see sooo many posts of people who have been diagnosed with Migraine headaches & Fibromyalgia. Two VERY DEBILITATING disorders!
I’m wondering that what you really have?
I see the commercial for Lyrica on TV. The comment that “Fibromyalgia is THOUGHT to be”, REALLY angers me! So...we THINK, we don’t KNOW, this is what is & take this medication & you’ll feel better. Hopefully you won’t suffer any of the side effects that they go on to say! Key words here folks are THINK, NOT KNOW!!
What do I think?
As a person who was almost labeled with & Migraine headaches, please don’t accept this diagnosis until you’ve ruled out everything else!
It turned out that I have Arnold Chiari Malformation Type1, aka ACM1 & I suffer EVERYDAY with debilitating Chiari headaches! They are just as debilitating as headaches, but are different in presentation. Chiari headaches usually begin at the back of the head, in the occipital area & radiate forward. From what I’ve researched, there are no auras or any warning signs of Chiari headaches. I see floaters a lot on a really bad day though. I feel like I got hit in the back of my head with a baseball bat, EVERYDAY!
Chiari affects women more than men & it’s a genetic disorder that you are born with. I’m seeing more & more people being misdiagnosed ever