My name is Lucy, I'm an English student living in Norway with my Canadian husband.
18 months ago my life changed forever. My husband proposed to me. It should have been one of the most magical days of my life. Less than two hours later I had my first grand mal seizure.
I barely remember the night.
I have had to fight for the past year and a half - first to get people to believe me, and then to try and find out why this happened. In the mean time my social life and physical life suffered greatly.
My diagnosis : Periventricular Nodular Heterotopia, also known as Gray Matter Heterotopia.
It was a pretty scary thing to read. Firstly because it somehow looks even more intimidating in Norwegian (periventrikulær nodulær heterotopi) and secondly because it has been really hard to find out anything about this, or find any support.
It's really difficult to understand right now - there is such scant information available to me - but as far as I can tell the condition causes temporal lobe epilepsy in my case. This means I am able to relate to a lot of people, and that I got off pretty lightly compared to some people with this condition.
I really wanted to document my experiences with this in case someone else gets a piece of paper with a scary looking string of words and tries to find comfort in knowing other people are going through the same thing.
I'll be a lot more anecdotal and casual in my posts after this, but the basics of me and my condition are:
- Ocassional grand mal seizures
- Regular epileptic auras
- Regular blackouts - currently controlled well with medication
- 300mg Lamictal a day
- First manifestation age 23 - a lot later than is typical with this condition
And the name of the blog - I have the same recollection of most social events as someone who has knocked back half a bottle of hard liquor!
