Seizures??

[ChloeN]

Hi I am Chloe. I found out I have an eight mm herniation earlier this year. For a little over a year I have had something really weird happening. Sometimes, while I am sleeping I shake.  In the beginning I hear this weird sound in my ear and then I feel like I am shaking.  I cannot move and I can't scream for help while it is happening. When I wake up I usually have a bad headache and I am really off balance.  My regular daily symptoms are headaches  and some neck pain.  Is this a seizure or something else?  

[Shane99]

95 - 110 isn't especially high for a 16 year old. The norm for your age is around 100.

As for your symptoms; have you considered the possibility that you're an Alien Abductee!?! :D

[ChloeN]

Thank you both.  I am going to tell my pediatrician when i see her in a month because i have not seen her since before i was diagnosed.  The neurologist i was going to was not to mine and my mom's liking so my pediatrician is going to give us a referral to a neurologist at CCMC (connecticut children's medical center).  My mom is actually friends with a nurse that worked at a chiari specialist place so she is going to talk to her.  And ThePeachy1 I do not think that we experience the same thing because mine is only when I sleep.  Thanks anyways though it was really interesting. :).  Also a general question.  I volunteer at a hospital so when i am there i play with the different machined and my heart rate is really high for a 16 yr old girl, it is normally like 95-110.  Is this associated with Chiari?

[ThePeachy1]

Hi there, a few years ago before I found out I had Chiari or even that such a thing existed, I had these horrible headaches and what my family called episodes, we described them to the dr sort of like 'seizures" where I kind of curled up a bit and shook and couldn't talk, had bad headaches and my memory was really bad after words, so I went thru a bunch of seizure test, they are easy and painless and quick, they said I didn't' have seizures but instead had migraines, then the next year for 5 days straight I heard this noise in my left ear that sounded like the Caterpillar from alice in wonderland eating a leaf, it was absolutely  mind blowing, loud as can be and he never stopped eating. after day 2 I made my husband take me to the ER where they thought I was a loon ! they said there was no bug in my ear.  excuse the following but this is how I figured it out, while I was going to the bathroom I noticed the caterpillar changed his chewing pace. That was when I figured out it was my own pulse I was hearing, I called my dr and he said that was physically impossible I said ok, a few days later it went away. I hope you don't have my caterpillar.  Excuse the long story but in hindsight it's pretty funny.  Point is, since you have Chiari you do need to see a Chiari Specialist, they are the all inclusive doctors that know what falls into the chiari fold. There are quick test easy and painless for seizure activity, and I am sure you Chiari Dr can order anything you would need. hope this helps in some way,

[selmaS]

Hi and welcome to the chiari forum.

I can not say if what ur experiencing is a seziure, nut I can say u need to see a chiari specialist.

I just had my surgery  and I went for yrs not knowing what was going on......I know just how much getting to the right drs is important for us with chiari as it is for our family members.

We do have a thread that lists diff drs the members here have used.....but if u need help please let us know,

This is a great group of supportive friends and we also have learned quite a bit too on chiari and chiari related conditions.

"selma"