Autistics with epilepsy. question- am I having seizures?

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JimSpark
Snowy Owl
Snowy Owl

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Joined: 1 Feb 2016
Gender: Male
Posts: 160
Location: Denver, Colorado, USA

18 May 2017, 8:15 pm

I was officially diagnosed ASD in 2016 at age 46, but I was diagnosed with epilepsy at age 2. Over my lifetime, I've probably had about 5 or 6 EEGs, and several different neurologists have diagnosed me as having either myoclonic epilepsy or generalized idiopathic epilepsy. Medications -- when I remember to take them -- have always worked well in controlling my seizures, although every different medication has its own annoying side effects.

My epilepsy was diagnosed when I was about 2 years old, when my parents noticed that I was having petit mal seizures. They said I would suddenly nod my head down, then become aware again a second or two later. As I got older, I'd notice that I'd slur my speech and lose my train of thought, and my head would nod down as my upper body simultaneously tensed. A neurologist once explained to me that these are called "myoclonic jerks." When it happens, I'll mentally black out for a split-second, but then I'm fully aware of things right away. If it happens once, then I know it's likely to happen a 2nd or 3rd time within the next 10 or 15 minutes. So, I am aware when these sorts of seizures occur, as I'll remember my speech slowing down, and then I'll remember being aware again, with a split-second missing in between.

I take 200 mg Lamotrigine daily, in two 100 mg doses, and my seizures are well-controlled. However, I've learned that I will often have these petit mal seizures if I've done one or more of the following three things: #1 - I missed a dose of medication; #2 - I got too little sleep the night before; or #3 - I drank too much alcohol the night before. If I manage all three of these in one day, I will have the petit mals, and then might also suffer a grand mal (tonic-clonic) seizure. I have had 8 grand mal seizures during my life, and all 8 occurred as a result of all three of those things happening in the prior 24 hours. I am not conscious during the grand mals, and when the seizure ends, I'm pretty woozy for the next few hours before returning to normal.

It seems that there's similarities between what you've described and what I've felt, with the important exception that what I experience is only a second or two, while you say that yours can go on for minutes. I think an EEG would certainly be helpful in better diagnosing what's happening to you. I wish you the best of luck as you continue your search for answers. :D


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DSM-5 Diagnosis: Autism Spectrum Disorder, Without accompanying intellectual or language impairment, Level 1.