Hello everyone. I'll start by saying that I no longer have consistent seizures, aside from the random one about every 6 months due to stress, cold, etc. But I wanted to give my story in hopes to connect with someone with similar seizures and maybe help someone out who is struggling.
My seizures started when I was an infant. I don't remember a lot from that time, but I do remember the seizures; which I will describe in a bit. Those were resolved - I was seizure free until I was 13 or 14 years old. I remember going swimming at the local pool with goggles on. That night my seizures started back up again. Since I had gone swimming with goggles many times before, I mostly attribute this new beginning to puberty changes.
From here, things progressed quickly. I began seeing a doctor who didn't run tests like MRI, EEG, etc. He only verbally interviewed me, and adjusted my meds based on the severity of seizures. So needless to say, I was loaded up on meds and in a back head funk.
After a year or so seeing this doctor, I eventually went to a new doctor who ran the tests, tapered me off my meds, and I was seizure free without treatment.
Now the seizures - my warning sign was my hands feeling big and heavy. This told me I need to get somewhere dark and quiet because a seizure was about to start. Also, I would wake up having a seizure 1 hour after going to sleep EVERY NIGHT for 2 years. This lead to an internal voice asking "Do I go to bed now and get the seizure over with sooner, or do I stay up with my brothers/friends to watch a movie, which will delay the seizure, but I know I will wish that I had gone to bed sooner.
Unlike some seizures, I was and am completely aware of what is going on. I can function as normal. You wouldn't know I was having one unless I told you.
Sensations - I was definitely very scared, confused, and asked "Why me?". I experience a type of reality distortion - I've been told it sounds like a bad acid trip. Time seems to move either much slower or much faster Objects seem to be much larger or much smaller than they really are. - this includes my own movements, others moving around me, my speech, others' speech, and really every form of sensation possible - so getting into a dark, quiet room was ideal to minimize any sensations or interactions.
These usually last between 10 and 30 minutes.
I am so thankful for my mother - every night, 1 hour after going to sleep, she would be up with me, being present, and trying to support me in any way. Unfortunately, because of how I experienced reality during a seizure, any form of movement, speech, sound, ANYTHING, was distorted and very frightening.
Now I am 43, seizure free, medication free, and living a normal life. I am very happy to have come across this forum. I hope to be able to help anyone suffering from seizures and would love to connect with anyone who has had similar seizures. I have alway been on the lookout for someone who knows what these seizures are like.
Thanks for reading. Please feel free to reach out and connect if there is any way I can help. Epilepsy is not an enjoyable condition to go thru alone.