Reflex epilepsy

[@jelenajankovic3799]

Braaavoo! Concise, short, correct, and exactly exactly what should be for "take off"

[@herbsmoked]

I can't read, think, talk without having my jaw jerk. Started when I was 17. Ill just feel terrible and I persist through the jaw jerks I go tense and I can't breath. My mind races crazy thoughts and I go out. People have told me I have a complete seizure with loss of consciousness. The doctors won't even listen to me when I tell them what happens. I take Klonopin for the anxiety this has caused me. Well surprised I was that Klonopin fixed me. I was broken for 10 years. I feel fixed.

[@danekelly6661]

I have this too, started when I was 13. They get worse the more invested I am in the literature too. If I don't stop reading when they happen, eventually none of the words make any sense anymore. They may as well be chicken scratches. I had a full tonic seizure in my 20's after reading for too long and pushing through the jaw jerks. It led to to a full tonic -clonic, frothing at the mouth, hospitalised, seizure. Can only advise that you Stop reading if they jerks increase in frequency. Have a break, look outside or something. When it comes to doctors, even after my tonic, clonic seizure they didn't take me seriously. I wasn't until finding a video on here that I even knew anything about it. Now , 10 years after the seizure if just been really forthright with my doctors - I've told me that I have primary reading epilepsy, I've referred them to the literature, there's a bunch of meddical journals online, free, that you can refer them to, show them this video. Be insistant, nobody knows more about your body than you do. Take care, hope this helps.

[@daviddellariva]

35 year old with adult onset reflex epilepsy. Focal cramping to left hand. Triggered by auditory startle. Hx of 2 non-triggered tonic clonic seizures since diagnosis. Would you recommend anyone that would have expertise with a situation like this? Right now I’m a patient at UCSF and they can’t figure it out.

[@danekelly6661]

I most definitely have reading epilepsy, I am currently undiagnosed but have a neurology assessment in March. What does the diagnosis process look like? How is epilepsy diagnosed? Thanks.

[@DrSimonFreilich]

Hi Dane, your neurologist will ask you a series of questions, do a neurology examination, look at any video footage of your events (if available. Mobile phones have been a game changer in this regard). And they'll arrange for an EEG to record your brain waves. I have a separate video on what to expect, elsewhere on the channel. Bw Simon

[@danekelly6661]

@@DrSimonFreilich thanks for the advice. I will get my partner to film me ahead of the appointment. It always happens when I read aloud so it should be pretty easy to catch. Thanks again.

[@humanrealperson1575]

I have all of these 😩

[@M.Studios.]

Can you talk about reflex epilepsy regarding movement because I may have experienced that

[@DrSimonFreilich]

Hi, they are already referenced within this one, and they certainly do exist. Often much more complex to identify than simple stimuli (as much less obvious to an observer). Keeping a diary of when and how they occur is very helpful when discussing with local neurologists and can be subsequently tested in an EEG lab too. Bw Simon

[@M.Studios.]

@@DrSimonFreilich can I dm you for some quick questions?