Chiari and seizure?

[beachgirl58]

Hello to all of my new-found friends!
I had a neurological workup because I had 3 seizures in 3 years, and was diagnosed Friday with CM1.  The first 2 seizures came after I passed out and hit my head.  The last thing I did before I passed out was ....  I looked up!  I hit the ground, hit my head, then had seizure each time.  I always believed the seizure was related to the looking up, but thought it was a cardio issue, and I resisted seizure meds.  In Oct of this year, I had a brain fog/sea sick kind of feeling that I now believe was due to CSF build up; but I laid down, then had seizure.

Neurologist at Mayo Clinic in JAX found the CM1 on the MRI and has referred me to NS at Mayo.  But the doc still wants me on seizure meds.  

Has anyone else had seizures related to CM1?  Or is it really possible I have separate seizure disorder, too?  Many questions have been answered once I started reading about CM1, but more will be revealed after additional tests in Jan., I am sure.    

Thanks to all who participate in this forum.  Information has helped diminish the fear factor alot.

[beachgirl58]

Thank you for all of that information!  
I read up on the doc I've been referred to at Mayo and he for sure is not a CM specialist.  I also found Eric Trumble in Orlando, who is, though he mostly treats kids.  I contacted his office but haven't heard back yet.

I don't understand fully the ways CM affects my body, but I am coming to understand it affects all of me.  

Again, thanks for the info.

[selmaS]

  Hi and welcome to the Chiari forum.

Yes, we have had both in a few members...some had seizures that post op no longer had and a few that developed the seizures post op....

Chiari affects everything in how our bodies function....

Although not all with Chiari experience seizures at all....in my late teens I had a few episodes, but did not see a Dr for it...as I was not sure what was going on...but it was short lived.

With the looking up, it is possible u r restricting CSF flow and y u r passing out, and it may be the return of CSF flow that causes the seizure...over stimulated nerve endings...so urs may be Chiari related to be relieved by restoring CSF flow with surgery...who knows....IMHO u need a true Chiari specialist....Mayo has a great name for many medical issues but Chiari is not one of them they are known for...see a Dr known for treating and researching Chiari .