Seizure like activity

[SZimmerman]

I am a 35 yr old female that 2 yrs ago starting having seizure like activity I have had several EEG's and did a 5 day EEG video monitoring. Apparently I was physically having seizures but EEG did not show one. I still physically have seizures or something that looks like a seizure. Mostly I do not loose contiousness however I am not always able to communicate depending on what part of my body is seizing. I have lost contiousness one time and went to ER doctor said it was a seizure but EEG's come back normal.....What could this be? With in the last week I have had 2 seizures and really would like some answers. I was also diagnosised with Chiari Malformation in 2001 and I had an MRI done last March of 10 and the radiologist said no signs of Chiari? Really not sure how that is possible I never had decompresion surgery..

[selmaS]

  Hi and welcome to the Chiari forum,

It is possible u r having drop attacks and not passing out, and that may be due to a CSF obstruction....Have u had a CINE MRI?

Most Drs will advise no contact sports to avoid the head getting hit as the injury could cause more issues for those with Chiari.

[littlegrayfeather]

Same as all of you...my body is having seizures..sometimes I can talk..sometimes not...mostly at night (laying down seems to effect something). Nothing shows up on EEG.... Lots of weird symptoms. if anyone knows of a good reference of symptoms could you post the URL please? I am only now looking into the symptoms.. it has quickly gotten much worse this year. Having a difficult time understanding all that can be affected by this disease.I have it due to Psuedotumor Cerebri.
Thanks!
  Also wondered if having Chiari makes you at greater risk for injury if you hit your head. I have been fainting a lot lately and am worried about that.

[selmaS]

  HI and welcome to the Chiari forum.

Wow congratulations for going so long symptom free !! And I am sorry u r having this issue now, there r a few things that can be going on...1- scar tissue may have developed and now u have a new CSF obstruction...when was ur last MRI?

Next, some have developed seizures  and even epilepsy,. that is not to say that is what is going on with u, but u will need to see a NS or NL and get some testing to figure it out.

When u had ur surgery do u know if it was a full decompression with laminectomy and duraplasty?

There are a few good Drs in the Maryland and NC area see our list of Drs and use it to research Drs...in the mean time see if ur PCP can RX the MRI to see what may be going on.,

[jessbrennan]

i was also diagnosed with chiari in 2000 i had brain decompression surgery in 2001, since then i have not had any problems when it comes to balance control loss of vision severe lack of energy, up until the past year or so. I sleep10-12 hours a day and even then im still tired, in the past 8 months i have experienced a few times what i think to be seizures, im not sure what different types of seizures you can have but mine typically last a few minutes, sometimes i get a feeling on the back of my neck like a shock right before they come, i havent had more than 4 or 5 but i want to find more info on what eactly is happening to me, some of them only certain parts of my body were affected some of them my whole body was taken over like ever muscle in my body tightened and loosened back up 100 miles a minute, im not sure if this forum will help me but i am in need of someone with a little more experience and information for me, ive tried to research but im not completly sure what eactly im looking for. any suggestions on where i should start?

[jacmurphy]

My son has Chiari and Epilepsy and I work with a lot of people with Epilepsy. Before we found out about my son's Chiari he had the weirdest seizure that was not Epilepsy. And looking back over the diary i keep I know now that's when all the other symptoms started. Playing football someone jumped on his back. He fell down and started shaking. His whole body was shaking but he was still able to talk and answer questions (with difficulty) It lasted a long time.. almost an hour. That was 13 months ago.. It's happened a couple of times since then and always when he's overtired and had a few long days. (long days for him being anything over 8 hours without a nap)

[NicoleEspinoza]

I too have these seizures EEG shows nothing one dr told my husband that I was faking them. I have no control of them and by no means would I fake a seizure as my son has epilepsy!!! I like you do not lose consicousness although I have 1 time.

[selmaS]

  Hi and welcome to the Chiari forum.

There r several members that have had seizures with chiari some were children and a few adults did develop epilepsy post op.Since this does not record on the EEG testing it could be that it is just from the blocked signals due to a CSF obstruction.....

Do u have a Dr that is a true chiari specialist?...Once u meet with one u will get more answers than u can imagine.We have a list of Drs for u to use to research Drs....it is not meant as a referral....I hope u can find a dr that is right for u-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  "selma"