Mast Cell Disease & Seizures: Connecting The Dots

Not everyone with mast cell disease has fainting spells and even fewer of us have seizures. I suffer with both, unfortunately, because, well, the universe is a jerk.

Actually, I’ve come to believe that my on again, off again seizure disorder is directly related to my MCAS. More specifically, the inflammation in the hypothalamus area of my brain caused by mast cell degranulation:

These unique tissue immune cells are located perivascularly in all tissues, including the thalamus and hypothalamus, which regulate emotions.

I did some research into seizures specifically in the hypothalamus region of the brain and came up with some really interesting information.

I learned that there is a disorder called hypothalamic hamartoma that causes a benign tumor in the hypothalamus and it produces an array of symptoms that perfectly line up with my own intermittent symptoms.

Here’s a description:

The hypothalamus is located at the base of the brain and regulates many of the “automatic” functions of the brain, including hunger, thirst, temperature, passion, and hormone regulation. It’s also involved in hormone balance.

A hypothalamic hamartoma can cause many types of seizures and other symptoms. The symptoms can vary from one person to the next. Many people have some combination of the following problems:

  • Gelastic or dacrystic seizures (focal seizures with laughing or crying)
  • Other seizure types, such as absence, atonic, tonic, or tonic-clonic
  • Cognitive problems, such as changes in thinking, memory, attention)
  • Sudden episodes of rage (called hypothamaic rages)
  • Other types of changes in mood or behavior

Now keep in mind, I don’t think I have a hypothalamic hamartoma but I suspect that inflammation in that area of my brain is causing some (not all) of these same symptoms seen in those with that particular tumor.

I have horrible cognitive issues (aka “brain fog”) and my memory is shot. My moods were all over the place before my dx and rx. I had fainting and seizures as a child which began around age 9 or 10 months…

These seizures begin in infancy in 1 out of 3 children. The average age when gelastic seizures start is around 10 months.

…and while I “outgrew” them at around 5 or 6, I had auras and absence seizures as a teen and adult and in the last few years the fainting and tonic clonic seizures have returned (boo!).

My body temperature is low, I have skipping heart beats and I always get super thirsty right before a seizure. All of these are controlled by the hypothalamus.

The ones that always perplexed me were the uncontrolled laughing and crying spells or gelastic/dacrystic seizures as they are called. I have always had them and they usually accompany the Central Pain Syndrome I get which is also most likely caused by MCAD driven inflammation in my brain (and everywhere else).

The laughing ones are surreal because I am fully aware of it happening and have zero control. I know it’s outside of “me” when there’s nothing funny yet I’m laughing like a mad woman. At least when I cry I can link it to the pain.

All of this is (partly) why I don’t leave my house anymore but that’s okay, it gives me plenty of time to do research so I can connect the dots and hopefully help others make sense of it all.

I also have awesome readers who send me things to help me connect the dots and make sense of things (thanks dear readers!!) and in the next week or so I’ll be sharing some really good stuff someone sent me regarding the connection between pesticides and mast cell disease.

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