I’m newly diagnosed with the chiari malformation. I’ve been diagnosed with epilepsy since I was 4 years old. Doctors found the chiari in my most recent MRI in january. Backstory, I’m the worst epilepsy patient and spent a huge portion of my life unmedicated and not receiving medical care for my epilepsy. I pretty much just had my seizures and moved on with my life. But since my last one very publicly happened at work, it was time to get some real treatment.
So in my MRI they found my chiari, told me its been there my whole life. I didn’t ask a lot of questions and I didn’t know what to ask at the time since I never heard of it before. They just told me I probably won’t even notice it.
But I’m sort of confused if I am noticing it or not. I know my seizures. I know when im going to have one and the time line to expect them. I’ve had the same auras since i was a kid and I have never had a seizure since I can remember that I didn’t have my tell that it was going to happen.
Now chiari is a different story. I’ve always had this neck pain for as long as i can remember. And only minor headaches until 2 years ago when I started having migraines. I thought the migraines were just connected to the epilepsy. But the migraines radiate from the base of my skull. Then there’s these random dizzy spells that is just a woosh. And sometimes I get these episodes that I swear feels like a seizure, but there is no seizure. There’s no aura, there’s no seizing, no unconsciousness, nothing. What is that? Is that the chiari? Is this a new thing that is suddenly happening with my epilepsy? Are my seizures changing bc I have to say in 25 years, my seizures have been exactly the same with no change. The auras are the same, the seizure itself is the same. The only change is as I get older, I’ve been more combative coming out of it.
I have a dear friend with Chiari, she was misdiagnosed with intractable migraine for the majority of her adult life. As you describe, it’s now understood that Chiari headaches radiate from the base of the skull whereas migraines are more to the top or side of the head.
In patients with Chiari malformation type 1 (CMI), epileptic seizures are occasionally reported as well. I’m not a doctor but it seems with the newer info about Chiari and it’s symptoms (the seizure connection seems to have been firmly established in 2008) it could be your seizures are from Chiari, not epilepsy.
You may want to go back to square one and rethink your original diagnosis from 25 years ago, much more is known about Chiari now! And the info on the internet is fantastic, more and more info is at your fingertips.
azurelle
Dear Jerogers,
Your experiences with epilepsy remind me of another individual I have met. She was a 6-year old kindergarten girl who had seizures since she was born, and had been diagnosed with epilepsy - until she was diagnosed with Chiari’s Malformation. She went to Duke pediatric hospital and had the decompression surgery - and has never had a seizure ever again. She’s now a normal 6-year old girl. From her story, I’ve come to learn that some diagnosis of ‘epilepsy’ are actually symptoms of Chiaris.
Chiaris has such a myriad of symptoms - because it’s squishing the brain stem and spinal cord - reeking havoc with the entire Central Nervous System. I think that’s why many of us get misdiagnosed. (I was misdiagnosed for 10-years.) And, my first Chiari symptoms didn’t manifest themselves until I was 40 years old! For some reason, age seems to trigger Chiari symptoms for some of us. (I am guessing because as we age, our whole body begins to sag - and that sagging provokes the pinch on the CNS that wasn’t there before. Like I said - it’s a guess. Lotsa Doctors are STILL guessing what’s going on with Chiari’s - so am I not in good company throwing in a few guesses myself? 
)
I have a follow up appointment to get my driving clearance back in may. I’m debating accepting the referral to the neurosurgeon. I have a benign growth in my brain no where near the chiari that is associated with the epilepsy and they tell me I have a genetic predisposition for epilepsy based on my family history. My neurologist says i have the double whammy make up for epilepsy. Quite honestly, if I had to chose I’d pick the epilepsy any day over the chiari. I can avoid my triggers and self care to the point that i was able to manage without medication. And when I finally couldn’t and had a seizure, I was okay with it. I only have to be on medication because of my job.
But I can’t tell when I’m going to have a bad day with the chiari. And my anxiety has gone through the roof. People ask if I feel okay…no I feel terrible everyday, but some days are just tolerable terrible whereas others are excruciating.
hi! I was diagnosed “Absense epilepsy’’ and medicated for 11 years of my life.And then stopped taking medication for about 5 years then suddenly chiari in at age 23 we thought it was epilepsy nope! after mris, eegs (sleep deprivation tests) my chiari was found.I strongly believe my epilepsy was a misdiagnosis and was chiari all along but doctors didn’t know about it back in the day so called it ''epilepsy”