A story of a seizure

(The original text was lost in the digital hyperspace where all the blogs and bloggers live, so here is version 2.0).

I wanted to share with you a close up of what happens to Jan when she has a seizure. Not to sensationalize the event but to give you insight into what is one of the main sources of anxiety and fear for both of us.

Jan woke up later than usual. Being a Saturday morning, I thought she was taking her time to join me in the kitchen. She turned and tossed in bed but stayed under the blankets moaning softly and long as if it was painful to just wake up. I was making breakfast for her, two eggs the way she likes them: soft but not runny, orange juice, a piece of toast with butter and a cup of tea. I put the food on a tray and brought it to her, then, went to get mine. She was lying on her back, so I helped her to sit up and placed an extra pillow on her back. I sat next to her eating my breakfast with delight. She ate the food fast and in silence. I was looking at how skilfully she used the fork with her left hand. Her right arm was resting, lifeless, at her side. I asked her,
- "do you like your breakfast?"
She said:
- “mmhm, it’s not bad”.
She had an undecipherable expression on her face, as if she had not slept the whole night. Her words were fragmented and slurred.
- “how are you feeling? I asked her.
- “not well” she replied with an empty look on her face
- “did you take your medication last night?
- “always!, always! I am not a child! I am a grown woman, do you understand?

The words were coming out slurred and with frustration. I tried to change the conversation realizing that she felt patronized, but she would not let go. She had finished her food, so I stood up to take her tray away. She was saying:
- “I need a man who can"...

And then, the words just got stuck in her brain. The aphasia would not let her find the words she was looking for to complete her sentence. Her mouth was open, as if trying to say “aaa”, her head moving back and forth as if she was sneezing. But there was no sound. When this happens, I always feel as if time slows down to a crawl. Every second feels like an endless time. I fight with the temptation of filling in with the word I think she is going to say. Sometimes I give in and complete her sentence. Then, I realize that this only fuels more her frustration and I have to brace myself for a quick escalation or a fast retreat from my part.

With the trays on my hands, I was waiting for the words to complete her sentence. Instead, she just fell forward, flat on her face, her forehead touching her knees. She looked like a rag doll, without any supporting internal structure. Her arms crumpled to the side, still holding her fork with the left hand.
-“Oh, no! Please God, she needs your help!”
I said in anguish. I could feel the anxiety and fear gripping me by the throat, making breathing very difficult. I could hear my own heart beating out of control. I took a deep breath while I kept telling myself: stay calm!, stay calm! Focus!

I dropped the trays on the floor and quickly rolled her on her side. I took the folk from her hand and threw it aside. Her face had an expression of a combination of fear and pain. She had her jaw tightly clinched.
-“Jan, are you OK? Jan, can you hear me? Please answer! Stay with me... Jan..., sweetheart! Talk to me!

I reached to the night stand where I kept sublingual pills of a fast-absorption, anticonvulsant medication. These are very small pills that I had to place under Jan’s tongue. I kept talking to her:
-“I’ll get the medication. Stay with me! You’ll be alright. I’m so sorry this happens to you. Ahhh! God, where are you? Jan, hang in there. Open your mouth..."

When the seizure was happening, she tightened her jaw –as if she was doing a great effort lifting something very heavy- . I couldn’t pry her mouth open, so, I just placed the pill inside of her lower lip.

Only 30 seconds had passed. She made a deep guttural sound, she was breathing through her mouth in short shallow breathings, keeping her teeth clinched, while her eyes rolled back and forth. Her limbs became very rigid and she began a series of jerking movements – later I thought that, ironically, these movements are very similar to the jerking one makes when laughing or crying out of control- Her whole body convulsed as if she was receiving electrical shocks. Thick saliva formed foamed in her mouth.

The only instructions I had received from the doctors was to give her the anticonvulsant. A nurse once told me to keep her on her side to avoid her choking with her own saliva, and protect her head so she would not hit it against a hard surface.

I kept her head resting on my leg while all her body continued convulsing. I felt this burning sensation going up and down my chest, as if I was being scanned with a red hot iron ring just a few millimetres from my skin. I felt warm tears running down my cheeks and falling on Jan’s hair. My mind was racing with dozens of thoughts: Who should I call? Should we go to the hospital? No, we know it is a waste of time... they’ll just pump her full of drugs, keep her for 24 hours and then just send her home...the emergency room is such a dreadful place, why is this happening to Jan? It’s so unfair! How, I wish you were healthy again! I remembered our agreement, that if the seizure it lasted more than 10 minutes, then I would call emergency. I kept looking at ther, so helpless, her body out of her control. This view was painful, like a stab on my chest. However, the most painful part for me was the feeling of absolute impotence. I believe that it is my responsibility to protect my wife from physical harm. And here she was, convulsing, and there was a-b-s-o-l-u-t-e-l-y nothing I could do to protect her from this seizure. I don't know if being compassionate hurts always this much, but I knew I was hurting then.

I kept talking to Jan,
-You’ll be alright! If you can hear me and can tell your brain to stop, please do it! ...I’m right here. I love you... Just relax your body and stop shaking... Oh Jan, my sweet wife...please wake up!

I passed my right hand slowly over Jan’s hair and wanted to sing her a soft song, but I couldn’t remember one. I felt so tired, I wanted to sleep and not wake up in a year. I kept touching her hair and keeping her on her side. I had a perplexing feeling that her body and mine were somehow connected, and as she was having a seizure I was experiencing its echo.

The convulsions stopped slowly after about three minutes. Her body began relaxing. I rolled her on her back. She was unconscious. Her breathing became slower and deeper. I opened her eyelid; all I could see was a dilated pupil looking nowhere.

I took al the dishes back to the kitchen and cleaned her face with a damp cloth. I put her again under the blankets. She remained unconscious for another 30 minutes. I said a silent prayer. I was relieved that it was over.

Just as suddenly as it came, the seizure had stopped. The room felt like a large convention hall utterly empty. The after-storm silence was comforting. She would be alright this time.

--------
We know the triggers that will cause seizures. We know over a dozen medications to control seizures. We also know that Jan is hypersensitive to these drugs and that they do not protect her from seizures. Consequently, at the end of the year, we decided that Jan would stop taking any anti-epileptic medication.

The two reasons that helped us get to this decision were: first, the magnitude of the side effects Jan gets from these meds are not acceptable; her quality of life is dramatically diminished compared to the low protection from risk of seizures Jan gets. Over the last year and a half, Jan has tried about a dozen different drugs looking for one that would work controlling the risk of seizures, while at the same time having minimal or no side effects. Sadly, all of them caused her to have slurred speech, drowsiness, fatigue, headaches; some caused dizziness, irritability, depression and a general feeling of uneasiness.

On top of the side effects, Jan kept having seizures despite taking the drugs. So we began suspecting that most doctors were really behaving like pill-pushers, instead of considering Jan's struggle with the drugs. Some time around the end of the year, Jan's sister who has an adoptive baby son with another form of epilepsy attended a seminar about anti-epileptic drugs where the MD lecturer indicated that the drugs are ineffective with about 30% of the patients. No one had told us anything about this, and since the neurologist in charge of Jan's file was not available to see her until 6 months from now, we just decided to take charge of her well-being and stop the medication after consulting a doctor who saw Jan when she was in a rehab hospital. Jan just went cold turkey.

One of the main causes of seizures is sleep deprivation. Every time Jan has had a seizure has been after a day of lots of activity, strong emotions, and little sleep. Jan began having seizures the day the plastic surgeon put the flap bones back on her head (about four months after the aneurysm). Since then, she has had a seizure every three or four months. Her condition is minimal compared with epileptics who have one or more seizures a day. I some extreme cases, the seizure can go on for hours. Labelling her as an epileptic put her into a category that she does not really fit. This is one of the shortcomings of our medical system: once a physician labels a patient, it is hard to get rid of the label and convince other physicians that there is an individual behind the label. Once Jan was labelled as epileptic, she was dumped into the same box with other patients with more severe forms of the disease. One neurologist told her that the EEG showed that her seizures happened on her scar in her brain. That there was nothing to do about it other than controlling the risk with drugs for the rest of her life.

Of course, he didn't know what is Jan really made out of...


Fede