Hello All,
I'm new here. I wanted to share my experience with sensory storms/seizure like activity.
Two years ago I came across the term "sensory storm" in the CFS Treatment guide. It was the first reference I found to what I have been experiencing for four years now. I call them "attacks" and use the phrase, "I'm going down" when I feel my body headed in that direction. The most intense "attack" occured early on and landed me in the emergancy room as the left side of my body was dead weight and I couldn't talk properly. I was very weak for about 6 hours and wiped out for a few days. Even the milder attacks I've has since then are pretty dramatic and always involve a fairly rapid onset of weakness, an inability to walk coupled with a cement like heaviness in my body that demands me getting close to the ground, an internal heaving (this one is hard to explain - like I'm throwing up violently on the inside or an intense, whole body pressure), crying (not emotional - it's more like an involuntary release of pressure). It usually comes in waves. The first wave of high intensity, a short reprieve of a few minutes (in which I can usually make jokes and laugh), then two more shorter less intense waves. I can also get very painful muscle tightening in my neck and shoulders and sometimes become sensitive to light for a few hours afterwards.
Interestingly, these attacks interrupt the wretched background exhaustion and wired but tired feeling that are usually present (these attacks leave me wiped out but quite my brain).
I left the ER four years ago with the diagnosis of TMI (I actually thought I had had a stroke). My GP suggested I had a panic attack. I have no panic with these attacks and they continue to come; neither panic attack or mini-stroke seemed right. But, when I read about sensory storms in Erica's book, I knew that was me; my brain is having some kind of seizure activity.