The one thing in my life I would like to cure.
I have seizures almost every day. Sometimes I have more than one seizure a day. Every seizure is bad but some seizures are worse than others.
If they are too intense, it can take days for me to recover. And because I will probably have other less intense seizures, the recovery can take more than a week.
But you will never know how intense a seizure is because you don’t feel the pain. And my face does not always show how I feel.
I wrote that a seizure is like falling in a deep dark hole. I don’t see it coming, I only know I am about to have one when the assault on my brain is imminent. For a few seconds, it is only pain and a scary feeling. Than I lose control of everything. I come back and I don’t know where I am, how long I have been there, if I am lying down or not. My body is completely separated from my confused mind.
There is also the possibility that I will fall as the seizure starts. I can hit my head, I can have a concussion.
Even when the seizure is only a staring few seconds, or a strange laughter, my brain still hurts and I still need time to take hold of my body. I always need to retreat inside my own head for a short, sometimes long, time. I need to do this because the world becomes too much to bear. I can see, hear everything but it is all filtered, like a series of pictures, and I move as if I am pre-programed. I can type and communicate but I prefer not to. I will do it if I think it is really important, but I need my time to recover. If I don’t do that, I think I would disconnect completely from the world. Then the seizure would win.
Seizures make me feel lonely. There is nothing that anyone can do to make the pain stop. There are no accommodations that make a seizure less painful. After an intense seizure, most of my senses are overwhelmed, I can’t be touched, lights and sounds hurt. One sense is gone – I can’t taste anything.
The post ictus is when I get hurt, because I have no control and no spatial orientation and my body wants to run and jump. I broke my nose twice, broke several teeth, had a big cut on the back of my head and spent nights on the floor, until someone finally realized I needed nightly monitoring.
Epilepsy can kill. Seizures can come at any time and they can hurt in more ways than it is visible. Medication might help, but they also hurt, in the long run – and they make me drowsy, slow, tired. Besides, medication interaction is complicated and unique to each person. I had my medication interact with folic acid. I ended up in an Emergency Room.
I am Autistic. I love my brain, I am proud of my neurology.
I have epilepsy. Seizures make my brain hurt.
I don’t need or want to cure autism. I can, and do, lead a fulfilling life being Autistic and having the supports I need, even when I need a lot of them. But epilepsy makes me waste time and energy. I can run out of my daily spoons after one seizure and need the next day’s spoons too (spoon theory).
I want to live my Autistic dreams, being proud of my Autistic self. Seizures are trying to stop me and I want, and need, a cure. A cure for epilepsy. An end to the pain in my brain.
Read more from Amy Sequenzia here.
My name is matt lily I live in Canada
I had seizure disorder that started when I was 21, I’m now 36. I took medicines for over 15 years, I had grand mal seizures I’ve tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. My seizures worsened as I aged. Yet, my life has been dramatically impacted by seizure For years, I went from Doctor to many Neurologists to an Epileptologist trying to find a cause and cure for my seizures. I tried every medication and dosage imaginable but nothing seemed to work. I read a testimony about someone on the website, on who her daughter was cured from seizure through herbal medicine. I contacted the doctor, and used his herbal medicine, my seizure became a story. Today, I am totally free from seizures after years of struggle.
I love your post that is what i feel about sensory issues
I want a cure, for the rare motor-neuron condition that has made my mother a paraplegic, and her father before her. I want a cure for fibromyalgia. But while it is scary to have my conditions and not have any close friends or relatives in my generation or younger, and I know that is due to Autism, it is enough to be talking about basic social skills with the therapist who diagnosed me a year and a half ago and head to the social and volunteer activities of a group with whom I have done brainy stuff for a few years. I would still be me if they went in and fixed the cells controlling my legs. Just as I’m still me after the physical therapists got me into the pool with the underwater treadmill and got me down from always needing 2 canes to usually 1, and being able to risk a few more things without the wheelchair (the nerves will still likely degrade, but the muscles I can use that were weakened while I was ill are stronger). I would still be me if I wasn’t in pain. Or if I knew I’d never have another migraine. A few days ago I realized I’d been lost in thought, nothing negative, I have learned how to usually turn those off, but with an idea. But twice, and for long enough that the album I think I turned on soon before I stopped reading, was over. There was no reason that day for it to be inconvienant for anyone, though I did forget to make a phone call. And many good papers, art and craft pieces, and solutions to problems have come out of those “lost” times. I wrote most of my college papers in my head when my body needed to lie down and I thought about my research, writing the paragraphs around the citations I had found. It looked like I wrote the papers in a day or two right before they were due, but I had the quotes I needed and had typed them in, played with the order, and already knew the paragraphs around each one. Just needed to type it out and work out a few of the segues. Actually, if I do become as disabled as my mother and grandfather, being able to lose myself in ideas isn’t such a bad trait!
Thank you for sharing this! Have you tried Hemp oil? We are now.
Thank you, Amy – this is so eloquent – sharing it not just on FB but with all those who work with M, to help them understand…
Amy, I am so sorry that you experience seizures and this pain. You have shared your story in such a touching, open, honest, courageous way. It means so much to me that you do this all so that other people will understand. ((Thank you so much.)).
Ketogenic diets are a fantastic and very effective way of controlling seizures. Read the research on it if you need to.
Thanks, Vicky. I tried gfcf before and it did not make a difference. Maybe one day I will try a more strict diet. Thinking about it
Amy, lovely piece. I don’t know if you have considered them. But my sons seizures stopped w Irlen Filters. They are tinted glasses that stop visual over stim. Not just any sunglasses work…these are customized. Let me know via message if you’d like a contact.
Thanks, Dena. My seizures are not triggered by lights and I really can’t wear glasses
Amy, my autistic son has seizures too. Thank you for writing this. You have given me insight into what he may be feeling.