Seizures! The Latest Trend!

I don’t think I’ve ever written specifically about what its like to have a seizure. I figured I’d satisfy your curiosity, since I had yet another seizure on Monday night.

When I first started getting seizures, I had this long period between my first seizure (conscious, but with expressive aphasia) and the big generalized seizure, another way to say Grand Frickin’ Mal or tonic-clonic seizure.

Expressive aphasia is a very strange thing to experience. The first time, I could say some things, but not others. I knew what I wanted to say, but it wouldn’t come out of my mouth. Eventually, my mind was thinking one thing but my fingers were doing something else entirely. I was filling out paperwork at the ER and I wrote my maiden name twice. I knew it was wrong, but I couldn’t get my fingers to write my married name. I don’t remember anything after that. The doctors were concerned I was having a stroke, so they took me right in (remember that little trick). Apparently they asked me if I knew my husband. I nodded. They asked me to write his name. I wrote gibberish. Then I had a generalized seizure. That whole episode – expressive aphasia to generalized seizure probably took 2 hours or so.

A generalized (or Grand Mal or tonic-clonic) seizure is the kind that knocks you unconscious. You shake around for about a minute, clench your teeth – usually biting your tongue or your cheeks, and wake up slowly – ever so slowly – trying to get your thoughts back in order. For me, I’m thinking clearly again and chatting with the EMT normally about the time we’re 5 minutes or so away from the ER at Stanford.

One of my seizure episodes was a status epilepticus – a fancy way to say I had repeated seizures without regaining consciousness between each one. If these aren’t brought under control, it could lead to brain damage or death. Which is a scary wake up call. ‘The brain tumor may not kill you, but this acquired disorder might!’ After this episode my medicine was changed (adding Lamictal) and I got emergency meds (Ativan) to help stop the seizures from continuing past the first one.

Since that status epilepticus experience, my expressive aphasia period (also a seizure, in case you missed that the first time) has gotten shorter and shorter. I now have a little fuzzy moment where I feel like a conversation is on repeat, my vision goes kind of wonky (the official term) and then I’m out cold. Not enough time for me to get Ativan in my own mouth.

I went for nearly a year and a half without a seizure of any kind. That record was broken in February and once more again on Monday. Ativan (placed in my mouth by my husband) did what it was supposed to do. The ER doctors (consulting with the neurologists) increased my medicine again – taking into account when I’m having my seizures (right around dinner time). They’re calling them break through seizures, not progression, so that’s good…I think. No one wants to leave me alone and frankly I can’t blame them. I’m not sure how that’ll work in the long-term, but we’ll figure it out. Our dog is lovely, but I’m pretty sure he can’t get Ativan in my mouth OR call 911. No service dog skills at all.

My mom is here now helping to drive us about and run much-needed errands (especially needed after our youngest got a nasty stomach bug last night). Her help came at just the right time, but eventually she’ll need to go home.

Seizures come in many sizes, shapes, and colors. Some are minor and some are not so minor. I’ve talked to people who have many a day, but they’re not the kind that knock you unconscious. I know there are many who have generalized seizures on a daily basis, which has got to be a living hell. Some of them are related to tumors or brain damage as a result of tumors/surgery and some aren’t related at all. But I do know that seizures are stupid however they’re delivered to your doorstep.

If anyone is looking for a part-time job babysitting a grown woman , let me know.

7 thoughts on “Seizures! The Latest Trend!

  1. I have been following your blog for some time now and I love the humor you have been able to express with the reality of your situation. My husband was dx 2 years and 10 months ago and just had his first grand mal two weeks ago. It scared the s$(@ out of me and the kids but he rushed to hospital by ambulance and had several more in ER. Prior to this one, he was having what they call the smell seizure. He smells something that no one else can and it is usually not a pleasant smell. We often refer to them as “chemical smells.” It then progressed with those and having twitching eye and hand tremors. Now, we have advanced to grand mal. Hopefully first and only. But like you, he too has to have a full time babysitter. ME! I have people help watch him if I have to leave and ready to give him the emergency Adivan as well. If the cancer isn’t enough, both of you have to worry about seizures and getting hurt along with the fear of progression. Thank you for sharing your story and for being so real with it. A lot of people see my darling husband and comment how normal he looks and acts without understanding or noticing how much he really has changed. He still has his wicked humor, great smile and never ending positive attitude. Like your family, we are learning to live each day as a gift. We make plans, we just do it in pencil. Wishing you the best and your family.

  2. Having had multiple nasty grand mal seizures I can empathize. Waking up and not knowing who YOU are, let alone those around you is a very dark place. We spent a very long and frustrating time getting my meds balanced only to discover Phenobarbital makes you very, very depressed. The good news is, we got the meds sorted, as you will. In the interim…I am certified in Karyn sitting and I have an amusing and cute puppy to boot! Let us know what you need. We’re here for you.

  3. I am truly sorry to hear after such a long time of living without the seizure clown, that has come to make another scary visit. I have thought about writing about the seizure experience of late (not had any since November 2014), but how you are articulated your experiences are so powerful and personal (with a dash of humour), that I might as well just redirect the traffic to your wonderful blog!

    Hope things stabilise soon and that the elusive presence of normality with blanket you with comfort soon! Thinking of you and your family, all the way from South Africa.

  4. Continue to stay strong Karyn!!!
    Seizures are scary and take a while to recover from, physically and mentally. My last job as a nurse, was caring for a boy with a seizure disorder. It was exhausting for both of us… The worst is not knowing when it can strike..so you are good to be cautious. I am glad your Mom is there now to watch over you..xxoo

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