The Verdict is in…the Brain is Normal (Sort Of)!

Those of you who’ve been here before know that I’ve been having brain issues. I’ve been epileptic since my teen years, but for a long time, I didn’t believe it because I didn’t have seizures–or at least I didn’t have what I thought seizures were.

Boy, did I have a lot to learn!

Ten years ago, under a long period of extreme stress, my blood pressure was out of control. I was having raging headaches, periodic tremors, short-term memory loss–pretty scary stuff for someone whose mother was a victim of strokes. My primary care doctor sent me to a neurologist, who scheduled an EEG. He informed me I was epileptic. He prescribed Dilantin, which I had taken years before but had discontinued–as I said, I couldn’t ever recall having had a seizure. 

He asked me a lot of questions, determining that, while I don’t have tonic-clonic (grand mal) seizures, I’d had absence seizures early on, and more recently, complex partial seizures. He gave what I’d experienced a name: temporal lobe epilepsy. The EEG was inconclusive, but he was certain this was the diagnosis.

I was rattled by this revelation. The temporal lobes are on the sides of the brain–did this come from the first injury–or from a blow I sustained in a short-lived street fight back in the ’80s? That blow had done some major damage to my inner ear on the left side. For a long time after that fight, I would get so dizzy, I’d stagger around like a drunk. Sometimes, I couldn’t stand up at all. It was pretty bad.

Anyway, the neurologist wanted to do further testing, some of which I resisted. The idea of being confined to a hospital room, kept awake and monitored on an electroencephalogram was more than my claustrophobic self could handle. I had no doubt the seizures he wanted to observe would occur under those circumstances, but for me it was a case of being careful what we wished for. When that little beast is provoked, it comes out of its cave enraged.

I felt we were making progress, but my doctor’s residency ended and he left the St. Louis area to set up his private practice in Joplin. The doctor who took over my care suggested a change in medication. Dilantin is an “old” anti-seizure drug, and there are several newer meds that have had impressive results. He prescribed Topamax. It was a disaster. The side effects were worse than the seizures.

Back to Dilantin.

By the time I was referred to my current neurologist, the seizures were more pronounced. I would have both visual and olfactory hallucinations. I love watermelon, but I could no longer eat it because it smelled so foul. Canned salmon and chili both smelled musty. I was sleeping far too much. I’d see fleeting shadows. 

My current neurologist ordered a sleep-deprived EEG and an open MRI. She also prescribed a new medication: Keppra. I was given pretty specific instructions for avoiding injury during seizures: no driving or operating heavy machinery (cancel my order for that bulldozer!), no going anywhere alone, no swimming alone, no cooking alone (as if I’d argue with that one!), no baths–showers only (please–if I got in the bathtub, I’d have to call Greenpeace to get me out!).

The MRI and EEG were normal–the first normal EEG I’ve ever had! This meant: A. I did not have a seizure during the testing; B. I don’t have abnormal brain activity while not having seizures; and C. There’s no permanent brain damage. Yay!

I expressed concern because I’ve been having trouble remembering words. I lose my train of thought. I still have major short-term memory issues. Having watched Mom slip away after multiple strokes and seeing what Parkinson’s did to a childhood friend and Alzheimers to a longtime family friend, I wanted to know if I was at risk.

“You don’t have Alzheimers,” my doctor assured me. “You’re far too sharp.”

Hey, that sounded like a compliment! 

I guess being a writer, someone who’s made her living with words, I was sounding the alarms unnecessarily. 

But I’m still epileptic. The test results also mean the Keppra is doing its job. The restrictions remain, because one can still have seizures even while medicated. But I’m fortunate to have a son who looks after me and two wonderful friends who are there for me when Collin can’t be. Carolyn drives me to almost all of my doctor appointments and goes into the exam rooms with me, remembering all the stuff I forget. Cathy always offers to drive us to the grocery store or anywhere else we might needs to go. I try not to take advantage of her generosity, except for an occasional stop at the grocery store on the way home from our writers group meetings. I know how fortunate I am to have three such wonderful people in my life. There are far too many others who won’t go five minutes out of their way. 

Breathing a heavy sigh of relief here….


19 responses

  1. There's no might–it's still there. The seizures are much less frequent now, and I thank God for that. If He chooses to allow it to remain a part of me, I know He has a reason for it, and I accept it.

    Thanks for the prayers, Evie–they're always welcome.

  2. Glad your brain is normal! I know what it is to wonder about oneself!

    And as long as your medication keeps the epilepsy under control, I'd say you're doing okay. Especially with such good people to help you out!

  3. A well deserved breath of relief! Writing's a good exercise for your brain.

    My dad's epilepsy is managed by meds, and he's never really had trouble with seizures since he got on them, with one exception when a doctor thought it was a good idea to have him stop taking one of his pills.

  4. It is indeed…when I can focus. That's unpredictable.

    I've had good luck so far with Keppra. I wanted to drop the Dilantin and just take Keppra, but my doctor thinks it's a bit too soon for that. I have to take both for the next six months.

    The problem with TLE is that the seizures aren't so clearly defined. You can be with the patient and not know they're having one. Sometimes, I'm not even sure.

  5. This won't show on Facebook. One of the Blogs I tried to write about my oldest brother was cut short because of his wife and what they had chosen not to tell their children. It's sad. My older brother overcame grand mall seizures and bad medicine. Some of the effects of the bad medicine could not be corrected. Yes, you are fortunate to have those three in your life. Hugs.

  6. I'm sorry to hear about what your brother has been through, Mari. I know what inept doctors and bad medication can do, and I also feel fortunate to have had good doctors in addition to my wonderful son and friends.

  7. Normal brain, good. Writer's brain – are you sure it's normal? I think it might be hard to distinguish some symptoms.

    They develop new drugs all the time – one of these days I may get one. That would be nice. Meanwhile, I just whack at it – and words seem to come out on a regular basis.

    Hope it doesn't get in your way too much. Sounds like you have help coping, but not driving must be a bummer.


  8. I don't think any writer's brain is really normal, Alicia!

    My doctor explained that the normal results only mean I didn't have a seizure at the time of the tests. As for getting in the way…some days are great, incredibly productive. Others, not so good. There are days I can't write a grocery list without my son's help. I have trouble with numbers–the other day, I struggled with simple addition. I can't write the way I used to–I need at least a basic outline.

    As for driving, I can walk to almost everything. We live in an area with a lot of stores nearby–even a mall. I counted 40 restaurants. A few years ago, a woman had a seizure while driving at the mall. She rammed her car into a shelter at the bus stop and killed a young man. I'd rather not drive than take that chance.

  9. Friends are good to have, esp. those who help you like they do. And the meds, doctors and hopefully all of it gets easier/better. Yay for being a writer!

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