My name is Sally. I’m now 68 years old, and a reference librarian at a law school where I teach soon-to-be lawyers Advanced Legal Research. Some facts about me include having three university degrees, a cute little nub on my left hand where my 6th finger was, a scar on my right foot where my 6th toe was, and a hypothalamic hamartoma that I was born with, as were members of more than 5 generations of my extended family. As far as I know, I’m the only one in the family (cousins, cousins’ children, etc.) with gelastic seizures. Fortunately, because the HH (hypothalamic hamartoma) is part of our genetic Pallister-Hall Syndrome, the seizures have not been as debilitating for me as for many HH (hypothalamic hamartoma) patients.
The first gelastic seizure I remember having was when I was about 7 years old. I may have had them much earlier, but I don’t remember. At least, no one noticed – unlike some that I’ve seen in videos. My ‘laugh attacks’ usually only lasted about a minute, and I only had them a few times a year. Nearly each time, I would have an ‘aura’ that would last off and on for hours, a feeling of déjà vu – something like time repeating itself – mixed in with an overwhelming feeling that something was going to happen. And then, it would – a laugh attack, a brief fit of giggles that would leave me very tired afterward. The giggles themselves actually felt good, because it was a sense of relief from the aura. Throughout my life, the laugh attacks would come at certain times – when I had a sudden shock (for example, when the car I was riding in was hit from behind), when I had my period, or when I was extremely stressed. I usually only had maybe about 6 or so a year. And until I was 20 years old, no one – NO one but me – knew that I had them. I’ve always had a very strong sense of humor – from my father’s side of the family, I guess, instead of Pallister-Hall – and have always laughed a lot at life in general. One of my sisters said, after finding out about the seizures, that was probably why no one guessed there was anything wrong.
I never told anyone, until one night when my soon-to-be husband and I were watching a show about a horrible crime, and a laugh attack started. I had to tell him – and we decided I should visit to University Health Center. Soon, I found out about gelastic seizures and was put on some strong meds that made me almost too sleepy to study (not good during law school!) so I then quit taking those and quit law school. When I started school a second time, I concentrated on lowering my stress level, exercised more, and went back to having fewer, smaller seizures. And so, it went for about the next 15 years until I was assigned a new course to teach and my stress level rose again, as did the frequency of the seizures. I actually had a laugh attack while lecturing in that class, then explained to the students that I’d “just thought of something funny” and cut the class short.
Finally, at the ripe old age of about 40, I went to a neurologist who tried several medications until we found one that worked well for me. He also ordered an MRI and called me at work to tell me I had a “brain tumor”. When my husband suggested I look it up, I found that the hypothalamic hamartoma was the reason for my seizures. Two months later, my mother – then in her 70s – called to ask if I’d ever heard of a hypothalamic hamartoma, because the National Institute of Health was researching our family and the number of people who had it. She was excited about it – 4 generations, at that point, of one family, with extra fingers and toes and a strange brain growth that no one in all those years knew that we had!
I have been extremely fortunate as far as my HH goes. The seizures that I had – and it’s been at least 20 years since my last one, thanks to lamotrigine (Lamictal) and clonazepam (Klonopin) – were not severe, were very brief (a few seconds of giggling, followed by intense sleepiness), and were not frequent. Also, when I began having them, it was the 1960s – there were very few anti-epileptic drugs then, and the doctor in the small town where I grew up would surely have not known how to diagnose or treat them. Medical science has advanced remarkably since then – thank God!
Besides the advancements in medicine, the best change has been the advancement in technology. Prior to the development of the internet, none of us with HH – or our families – would have known what these are, and how they can be treated, and that there are other people, other families, other resources to go to. And that’s nothing to laugh at!
Sally Waters, Gulfport, Florida
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