The other day a good friend asked me what my Focal Seizures are like, and it occurred to me I’ve never blogged about the experience. If you, a friend or a relative has Epilepsy, this might be worth your time. Here goes…
My Grand Mal seizures are under control through medication, but the Focal Seizures get me now and then. When they come, I feel like my conscious mind is floating away from my head. I can actually feel my thoughts detaching from my present self - flying like winged angels - and in short order, I’m won't to able to think clearly or speak clearly..
The worse one I've had was a time I blacked out, Felt my thoughts leaving and got to a cushioned chair in the nick of time. When my husband came home, my eyes were open and I spoke to him - told him about my day. He said I made no sense. I don't remember any of this, but eventually thoughts became clearer.
For all my other Focals, I’ve been awake and aware the whole time. And when I feel that detachment happening, I begin to talk to myself and take deep breaths and ask myself who I am, where I live, what day it is… that sort of thing. This helps me stay calm, but it doesn’t stop the seizure. And within a minute, I won’t be able to make sense. Eyes open, speaking... but making no sense. And then I just have to patiently wait until my brain gets back in order.
Whole process used to terrify me, but, these days, I find it interesting and try to learn as much about Epilepsy as I can.
In my particular case, Focal seizures develop in my brain’s left Frontal Lobe - the home of memory and verbal ability, among other things. My Neurologist learned this for certain after I had a 3-day EEG at Fairfax Hospital, Fairfax, Virginia.
He explained that, as my seizure begins, my brain waves become more and more agitated (see image below) which makes it more and more difficult for parts of my brain to communicate with each other. For instance, we have a place in our brain that holds words and an area that creates sentences. When the brain waves between those two go crazy (those big spikes on the EEG), I suddenly can’t make sense.
Above is a piece of art that now sits over my desk. This struck me as the perfect image of the difficulty I have finding words and forming sentences when my brain is agitated (The art piece was created by Griffin Caton, a DaVinci Art student. DaVinci is an offshoot of Arts for All - Loudoun here in Virginia. AFA has been providing theatre and art programs for people with special needs for over 33 years).
I’ve had Epilepsy for 6 years now, and am thankful I rarely have seizures any more. To avoid them I not only serious anti-seizure medications but I've also had to close my business and be very careful about taking on stressful situations. I have to be careful, because seizures - especially Grand Mals (now called Tonic-Clonics) - do serious damage to long and short-term memory. I’m thankful I’m a writer and took “notes” on my life. I have good days and bad days - days I can remember the name of my first grade teacher and days I can’t remember what I did that morning.
But back to the Focal Seizures: they don’t last long - 30 minutes to an hour, tops.
Then I try to figure out why I had them:
Next up, I get to tell my Neurologist what happened, and he decides whether to see me this time. Lastly, I get to count off 6 months on my calendar before the state of Virginia will let me drive again (Very glad we live in a walk-able neighborhood within a mile of grocery stores, restaurants and Cornwall Medical Facility).
Now, let's talk about the strange subset of my new life: memory loss.
The oddly good news is that I can enjoy things over and over again. "I love this movie!" I tell my husband. "Have I seen it before?" "Yep. Just last weekend." Grateful for his love and patience.
But I realized something else the other day... something strangely amazing: having someone tell me I’ve forgotten things does not come with the sort of sorrow I'm certain I used to feel. An example would be the normal sadness over having a good friend move away. In the old days, I would miss a friend as I thought back over all the good times, how great she was to be with, and all the things we did together that we won’t be able to do again.
Seizures have wiped clean most of those memories. So odd.
Now, over time certain memories may return in full or in part, and there are times when someone talks about an event, and pieces of it will come back to me. But when they don’t come back at all, well… I simply can’t miss what I can’t recall.
I go through old family photos and see that I’ve been to wonderful places, but in most, the details are gone – often no idea where, when or with whom they were taken. So, the photos themselves become the only memory. And the only thing I can be sad about is being told what fun we had.
But I'll add that I have to tell people this is not Alzheimer’s or Dementia. This is not a slow decay. The memory damage is done during a seizure and uncontrolled seizures will do more damage, so I stick to the medications and change doctors when they do a lousy job. And that’s why I will constantly say, “Find a good Neurologist, and do what they say, because deciding to handle Epilepsy on your own is incredibly dangerous”.
So, that’s my life, but every person with Epilepsy is completely unique and the list of reasons for seizures seem infinite (Which is why we have to be our own best advocates): examples include being born with it or developing it due to brain injuries or a tumor, having an inability to manage stress, chronic low salt (Hyponoatrermia) or having an auto-immune disease (My auto-immune disease may have been why it showed up… or it just showed up at a moment in my life when my brain suddenly decided it wouldn’t handle stress anymore).
And there are at least 15 different types of seizures, which are based on where the seizure activity occurs in the brain. After a 3-day EEG at Fairfax Hospital, my Neurologist knew mine developed in my left Frontal Lobe - which is why my memory and speech are affected.
And alllllll those pieces of the puzzle affect what medication/s work - IF the doctors can find the right med for you. The first medicine I was given stopped the Grand Mals (now called Tonic Clonic seizures, by the way), but it caused me to have severe mood swings. Second med gave me a severe rash that began to close my throat. Then came the one I’m on now. It gives me headaches and itchy rashes, but with a little Tylenol ant-itch creams, I’m set. And I’m deeply thankful this med works, because there are no other effective medications for me… at this time (Yay, for research!).
My Neurologist also suggested my memory loss and verbal ability would improve if I could lose weight back to my ideal weight (which I very nearly have) and get regular exercise (which is why I walk at least 30 minutes a day). He was absolutely right.
And, thanks to my Neurologist, the amazing people at Johns Hopkins and my friends and family, I’m still here.
Nobody wanted to be a burden. We didn’t count on having Epilepsy, but we do have to count on the nature of love.
When they say they can deal with it with no problem, we have to love them enough to believe them. I’m in a happy marriage, but he has to constantly reassure me I’m not a burden. It’s hard. But I realize if he had been the one in this situation, I would have no trouble loving him and doing whatever was necessary. So the next job I have is to believe I’m worthy of the same love I have for him.
PS: If you’ve gone to med school and have 20 years or more experience in Neurology with a focus on Epilepsy, happy to hear medical advice. Otherwise, Nope.
PPS: And, no, marijuana does not help my form of Epilepsy, lol…