As I did with non-Hodgkins lymphoma, I want to share my experience with epilepsy, to answer the questions of friends and family and perhaps to help others who are facing the disease.

My first seizure occurred in April 2005 while on vacation with friends in Las Vegas. We were walking through a casino when I suddenly felt dizzy, as if I were going to faint. The next thing that I remember, I was surrounded by a crowd that included paramedics. I wasn’t in pain but I couldn’t remember Lesley or Larry’s names and I didn’t know where I was or what day it was. I spent the rest of our vacation in the local hospital and underwent further testing when I got home. I had had a grand mal (tonic clonic) seizure but no cause for my seizure was ever found. Perhaps it was the strobing lights of the casino; perhaps caffeine, alcohol and dehydration played a part. Whatever it was, I was ok. My neurologist sent me home, telling me not to let it happen again.

It didn’t happen again until nearly four years later. On February 23rd of this year, I had my second grand mal seizure. The last thing that I remember was putting a casserole in the oven at 6:10 pm. Our next time reference came at 7 pm when I stumbled into the home office to find my husband. I didn’t know who he was or what day it was but somehow I knew how to find help. I had had a seizure in the kitchen, hitting my nose on the counter on the way down, my nose swollen and bleeding. Once again there was no pain, aside from my nose, but the loss of memory was familiar. I renewed my association with my neurologist the next day and underwent extensive testing to once again try to find a cause for my seizure. The bloodwork came back perfect, the MRI of my head showed nothing (LOL…well, there was a brain there but there was nothing wrong!), and the TTE showed that my heart was in good shape (although it did inadvertently discover an aortic aneurysm). Dr. Heide discussed medication with me but I was reluctant to take medication. I had had two seizures, four years apart, both on the day that my period started. Was this catamenial epilepsy (triggered by changing estrogen levels) or was there some other cause? I didn’t want to take medication without knowing what we were treating. If another seizure occurred….then I would take medication.

I had another seizure on May 24th. I had felt tired so I went to my room to lie down. 45 minutes later I found my daughter and I was suffering from the familiar post-seizure amnesia. This time I had bitten my lip and my tongue and the pain continues today, eight days later….making it difficult to talk and eat. This time, when I saw Dr. Heide, I agreed to whatever he said and I was given a prescription for Dilantin, taking 1000 mg the first day, 300 mg/day thereafter.

My life has changed so much over the last 18 months. The partial gastrectomy which cured me of non-Hodgkins lymphoma has made eating a challenge. Epilepsy has meant that I’ve had to give up caffeine….not easy for a girl from Seattle where there’s a Starbucks on every corner! I’ve had to give up driving for six months, too. If I can remain seizure-free from now until Christmas, I can drive again.

I’ve been trying coffee substitutes (decaffeinated tea and coffee still contain caffeine) and Starbucks has nothing to fear from Celestial Seasonings “Roastaroma” or Kaffree Roma. I suppose that I’ll try to develop a taste for herbal and Rooibos teas but I don’t really care for them either.

I’ve also been trying pain medication for my lip and tongue but the pain of applying the medication is almost as bad as the pain it’s intended to treat. Kank-A and Liquid Orajel had me in tears as I applied it but eventually it numbed the pain. I recommend Walgreen’s Oral Anesthetic Paste as the most pain free treatment.

Dilantin has been fun (where’s the sarcasm button on my laptop?). There’s a long list of side effects that includes headache, nausea, constipation, dizziness, drowsiness and excessive growth of hair and gums….most of which I’ve experienced. 😦 I’ll remain on Dilantin for a couple of months until I’ve stabilized and then I may be switched to another medication, such as Lamictal, which has fewer side effects…and a bigger price tag.

What’s it like to go through a seizure? I don’t know. I don’t feel or remember anything when I go through a seizure. It’s scary for those who witness the seizure but it’s not painful to go through it.   Afterward I’m left with amnesia, unable to remember what day it is or the names of family members. As I mentioned above, I might bite my lip or tongue or hurt myself as I drop to the ground.

What should I do if I’m with someone who has a seizure? In my case, just try to keep me from hurting myself. Roll me onto my side and don’t put anything in my mouth. It’s not necessary to call an ambulance unless this is the person’s first grand mal seizure or if the seizure lasts for more than five minutes. A seizure will typically last a few seconds to a minute or two. Afterward, the epileptic person will rest (in my case, for as much as 45 minutes) before regaining consciousness.

Do you have any symptoms that suggest that a seizure is coming on? Not really. I remember feeling very dizzy prior to my first seizure. I had no symptoms at all prior to my second. I felt a bit tired prior to my third and sensibly went to lie down. Since my first seizure, I’ve also had what I describe as strobing vision during which I can still see but my vision flashes like a strobe light. Recently my thoughts have also flashed during these episodes. I asked my neurologist if these were seizures themselves or if they were an aura, preceding a seizure. He said “We don’t know”. Whatever it is, I’m very careful when I experience this.

Have you identified triggers for your seizures? As I mentioned above, fluctuating hormone levels may play a part. Caffeine and alcohol may also play a part and, while I’m reluctant to give them up, doing so, at least for now, is important to help me heal. Florescent light, strobing light and simply driving in an area that fluctuates quickly from shadow to light can make me feel unwell, too. I can’t attribute my seizures to any of these factors but I suspect that they contribute to the problem.


7 thoughts on “Epilepsy

  1. As usual, you have written a very complete discription of what you are going through. Hope the lip is getting better – is the prescripion stuff less painful to apply?

  2. My lip is feeling better this evening but now I feel like I have the flu: fever, chills, body aches, sleepy. I’ve spent most of the day in bed…..hoping to feel better in the morning.

  3. You’re not having an easy time of it, are you, Carrie? My thoughts are with you! As someone who’s also had seizures I can relate to the “I feel nothing during” part but not the “I feel nothing preceding it” part. I feel extreme and distinctly unusual nausea which is a handy signal. I wonder if you will start noticing signals as time goes on?

    Dehydration and, yes, caffeine have also contributed to mine. I don’t know if it helps, but I have been able to drink coffee and tea again. You’ll probably get there, in time.

  4. So sorry to hear about your troubles, but I did get a smile out of your comment about Dilantin. I’ve been living with epilepsy since 1986 and have had three nocturnal seizures in that time. My epilepsy was well controlled by Dilantin with only one side effect (bone thinning). That is, until I reached 20 years on the drug: I was switched to generics and went toxic. I’m now on my second post-Dilantin med, Keppra, which is just OK. The one I tried after Dilantin, Trileptal, was a nightmare for me.

    The truth is all AEDs stink. They all react so differently with so many different people it’s hard to know what will work. We need better pharma treatments, true, but what we need is a cure.

    I’m curious about the caffeine: I’m guessing your neuro took you off caff., but it’s never been mentioned to me. When I was toxic on Dilantin, I needed 2,000+ mg. of caffeine just to stay awake.

    The overarching truth is that epilepsy stinks. There’s so much we don’t know. I know this: it won’t defeat me. Just remember the Japanese proverb: Fall down seven times, get up eight.

    Best wishes

    • Thank you for sharing your experience with epilepsy and Dilantin. This is all very new to me so I’m still learning how to live with the disease. Since writing this post, I’ve had a severe allergic reaction to generic Dilantin and I’ve been switched to Keppra. I feel so medicated most of the time and, like you, I’ve felt that I’ve needed caffeine just to function each day. I have just one cup of green tea, so I’m not overdoing the caffeine but it makes me feel better to have a cup of tea.

      Fall down seven times, get up eight……I love that! 🙂 Thanks!

  5. Seisures are definately not the best way to spend a day and of course the next day can be somewhat depressing as you’re getting your mind back. But you have to remember that it will be OK and that millions of other people from every job and financial catagory experience seisures, whether epilectic or from other causes. Seisures are not prejudice, they go after everyone who is susceptible. I am on Kepra 500mg daily, was on 750. I thought this was going to be the end of it but unfortunately I had my first one in 4 years at the Las Vegas Casino two nights ago and my son was the unfortunate one to have experienced it on his birthday.
    Kepra is a good choice for the liver conscious. It does have the normal side affects which includes light headiness sometimes. It’s probably the alcohol. I spoke with my doctor and he said to drink some coffee when I get tired and stay away from alcohol. Alcohol can definately trigger seisures, especially if you are a binge drinker. Drink for a few days and then stop for a few days. Called DT’s. I’m actually going to have to make a change to at least see if it makes a difference like they say.
    A lot of seizures will happen when you are in a stare mode and you sort of go into a trance and blinking lights will trigger it. Sugar can also trigger pulsating shadow light effects.
    My best to your recovery..

  6. i am visiting Las Vegas in feb for my soon to be sister -in-laws wedding and really want to find out about lighting in casinos ,and american saftey warnings ie before shows etc. dont want to go and be poorly, dont want to spoil someones Big day. dont want to have more fits either due to me worrying holiday information doesnt seem to cover anything on casinos and epilepsy if anyone knows please let me have the information thanks

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