True Story: I Have Epilepsy


This is one of many True Story interviews in which we talk to people who have experienced interesting/amazing/challenging things.  This is the story of Sonja and her epilepsy diagnosis.
Tell us a bit about yourself!
My name is Sonja, I’m 30 years old and a life long New Englander (save for a few stints abroad) currently hanging out in Western Massachusetts with my husband, son, and two cats. I’m a stay-at-home mom and artist, trying to squeeze in as much time drawing and collaging as I can while my one-year-old son naps! I also enjoy blogging, Mexican food, and a nice cup of tea.For those of us who don’t know, what is epilepsy?
Epilepsy is a broad term for any number of seizure disorders. Basically what epilepsy means is the propensity to have seizures: if you’ve had one seizure, you’ve had a seizure. If you’ve had two or more seizures, you’re probably in the market for an epilepsy diagnosis. Epilepsy can range from a few seizures spread out over a lifetime to seizures every day and from severe seizures – most people are familiar with “grand mal” (more accurately known as tonic-clonic) seizures – to seizures that simply look like spacing out. I have what are known as “complex partial” seizures in which it looks like I fell asleep and my face twitches a bit. I’m unconscious for usually about thirty seconds at a time, though I feel quite sick for hours afterward. All seizures have a refractory period (known as the post-ictal period) afterwards in which the person feels generally crappy.

How does epilepsy affect your daily life?

The most significant effect epilepsy has had on my day to day life is simply making me a very, very cautious person. For most people, seizures have triggers – which can range from alcohol consumption to exposure to certain types of blinking lights.

For me, my main trigger is a lack of sleep (which is a really, really common seizure trigger). This is very tricky being a mother as anyone with an infant knows that your own sleep is wildly unpredictable. The edict of “sleep when the baby sleeps” is doubly true for me! Another common trigger for me is fever, which means that I not only have to take extra super good care of myself should I come down with a cold, but I’m overly cautious in preventing illness in the first place. Luckily, I have a strong immune system!

A lot of people understand that seizures and driving are a bad combination, but since my seizures always have a warning before hand (sometimes hours, but always at least five minutes – plenty of time to pull over!), my neurologists are fine with my driving. I am an extremely careful driver and since I know that I often have headaches before I have seizures, I never, ever drive when I’m overtired or headachy.

The hardest part of day to day life with epilepsy is unpredictability. When I’ve been off of medication, I’ve very often had to cancel social events or call in sick to work at the last minute from having seizures. I do have a warning before hand, but it’s not long enough to really *plan* for anything. I do really well on medication, but I still have the occasional seizure and have to just be able to “wing it” when they happen.

How old were you when you were diagnosed?

I had my first seizure ever at nine months old, in response to a fever. When I was a kid, I had a few seizures per year up until age six when I had viral meningitis. It’s a bizarre coincidence that I got meningitis after having had seizures as the disease itself can lead to epilepsy later in life. It’s even more bizarre that afterwards, I didn’t have another seizure for thirteen years! At age nineteen, I had my first adult seizure and have been working to control the seizures (which I would have every day when I was unmedicated) since then.

How have you chosen to treat your epilepsy?

After a lot of trial and error and seeing several neurologists, I’m on an anti-convulsant that works for me. I also take melatonin at night to help and make sure that I get enough sleep. I take my meds and do my best to get enough sleep and eat well (low blood sugar can also trigger seizures) and that works out really well for me. When I was struggling in the past to find the right medication, I also did some alternative therapies – including massage therapy and nutritional supplements – and those helped a bit, but now that I’m on the right meds, I find that I don’t need them right now.

Will you ever be ‘cured’?
No, I can be seizure-free for extended periods when I’m on my medication, but there will always be the possibility that I could have another seizure at any time.

Are there any resources you’ve discovered that have been particularly helpful?
I have a number of friends who also have epilepsy and I’ve found that talking with them has been incredibly helpful for dealing with the day to day stuff and venting about new meds and more testing and whatnot. When I was first diagnosed, I would look for online forums and communities for help, but there wasn’t much at that point (this was in 2001, so the internet was less extensive back then!) and what there was wasn’t really all that useful to me.

What advice would you give to anyone who has been given an epilepsy diagnosis?
Take it day by day. It can be really frustrating to keep trying new meds and getting more tests done and still have seizures – but it will generally take time to get everything sorted out. When you do, try not to get discouraged if you have a breakthrough seizure and have to reset the “Days Since Last Seizure” clock over and over again. Each day seizure-free is an awesome day! And on the days when you do have seizures, just be gentle with yourself. You will learn over time how your brain and body respond and you’ll figure out what you need to be healthiest – just be patient and keep trying until you find what works for you!

Any questions for Sonja?  Have you of you been diagnosed with epilepsy?

6 Comments

Stef

Very interesting post. I love the image you've chosen for this, it's quite an accurate depiction of what it feels like.

I was diagnosed with juveline myoclonic epilepsy in 2007 after being on the wrong medication for two years, which was hell. I'm now incredibly lucky to have found the right medication for me — I've been basically seizure-free since the first day I started taking it and barely have any side effects. Once in a blue moon I do twitch a little, but nobody's ever noticed it.

I still have a pretty rigid sleep schedule and it helps that I don't drink alcohol, so most of the days I'm perfectly fine and don't have to worry. My mind gets foggy when I don't take my meds for several days in a row, but I've only tried that once.

I moan sometimes that the medication is slowing down my brain and that it has robbed me of most of my creative energy, but overall I think I'm just one of the really lucky ones who can go through their life like they don't have epilepsy.
I could have it worse, and this post just reminded me of that.

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looloolooweez

I'm so glad you decided to share your story!

Sonja, did you notice and increase or decrease in incidences while pregnant? My husband and I are thinking of starting a family, but I'm afraid of what the hormones will do to my brain. What was your experience?

I had several seizures (grand mal) as a young teen. The docs put me on medication, which seemed to work for the most part… except when I'm confronted by hypodermic needles! Something about that makes me pass out, but when I pass out I don't just faint like a normal lady. (Another reason to be cautious about pregnancy, I guess). I've been med-free and seizure-free for about 7 years now.

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Laura

Great post! I was diagnosed at age 7 after a grand mal seizure at school. I have complex partial seizures now too, but they're much less frequent since I found the right med – yeah! I liked what you said about being cautious. I'm also cautious, which is often a struggle give my fearless, fun-seeking nature. 😉 I've learned to have a healthy respect for how my seizures can affect my safety and the safety of others. Driving, for instance, is something I struggle with. Do you drive, Sonja? And if so, how did you come to terms with it?

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Smart Victor

Am One of the happiest man on earth since my son was cured from the problem of seizure,which he has been having for eight years now,he do have the attack two to three times a week,which is affecting is education a his life.i got the contact of a doctor from the post of one Mr Ehis thanking he for curing his seizure problem,i got the contact and contacted him then he made me to know that the medication is a permanent cure, and that was how i got the medication which i used on my son,and for six month now there have been no sign of seizure in him again.any one with such problem can contact him on +2349038504409 or ebato1232@gmail.com

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jimm nancy

My son started having seizures he had his first seizure at 6 year within 12 hours We spent 6 days in the hospital where different doctors looking at different things couldn’t agree on why he suffered a seizure… He has had genetic tests including a muscle biopsy. I used to wonder why my son were getting so many vaccinations shots at such a young age, Still the doctors wouldn’t admit it was the vaccination shots. After his 2nd seizure I wouldn’t allow my son to be vaccinated anymore but I believe the damage is done. It was during a casual conversation with a friend that I learned about Doctor Lawson Bryan i was so glad to know him on how his herbal product work, I contacted Lawson and explain everything to him and make purchase of his product. few days later i received the herbal medicine my son used it for 3 mouths i notice improvement in less than a month my son was totally cured of seizure now he have not experience any sign of seizure.

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