Nice to Meet You

[JulesD]

My name is Julie. I am happily married and a 45-year-old mother of two boys (10 & 7).

I started having seizures Oct. 2008 due to an angioma in my right temporal lobe. I found that out later on. However, I had my first seizure while in the bathtub and was lucky I did not drown.

At first I thought the water was just too hot and ignored it, but I couldn't shake the familiar person I saw when I was "out". I heard myself saying to him, "I know you!" and he was sitting on a sofa shaking his head "yes" until I woke up with my head half immersed under water. I ignored the experience and went on with my life until it happened again six months later.

The next time it happened I was at Chuck E Cheese with my youngest. I had just worked out and was having a diet coke (a pattern I would later learn would cause seizures for me). I had a strange deja vu there- almost like a mirage in the middle of the place. I could have sworn I had experienced the scene before (something about a woman collecting money for a telethon) and then it went away.

I safely drove my son to my parents (!). Later I got into the passenger seat of my dad's car to go with him some place. I remember feeling ill and telling him so. Then I went out- I woke up with him calling my name over and over. I had wet my pants. I was exhausted the rest of the day and stayed on their sofa. At their advice, I called my doctor, an endocrinologist, the next morning.

My endo told me what I had experienced was a seizure. It was probably from the Wellbutrin I had been taking for some time. He escorted down the hall to the neurologist's office where I was sent to have an MRI.

By the way the staff at both offices acted when I was asked to return for a more complete MRI that showed blood vessel activity, I was sure I had a brain tumor. When I was told I had an angioma in my right temporal lobe instead, I was relieved to say the least. It made me realize how important my children are to me.

Topamax worked for a while, but I was having breakthrough deja vu, and seizures when I got into the tub (something about hot water). Too much caffeine and exercise were triggers for me too. It was like having an earthquake every six months.

When our family underwent two deaths last year and I got a real jerk for a manager, I began to seize a lot. Plus I had been taking DHEA as a supplement for about 3 years and decided it had been a long time and went off it around then. I think my adrenals were just taxed and the stress brought me back to my neurologist's office. We added Keppra XR 1000mg. It works pretty well. My auras are of intense doom now. I can call my husband when it happens and he holds my hand through it. It's really scary.

I had a situation in May when my manager really bit my head off. It was extremely stressful. Two days later I got "the doom". I called my husband and this time I lost consciousness for a few seconds but heard him say my name the whole time.

I really don't like what the Keppra has done to me. I am tired, get angry, and I'm not funny anymore. I've lost my sparkle. My best friend and I are barely friends anymore. I am seriously depressed. Because of this I am switching to Lamictal next month. I am at home right now, off work, doing the titrating down process for Keppra XR. I've also given up coffee and I am trying to heal my adrenals.

I just want to be myself again. I told my neurosurgeon I am tempted to have my angioma removed because I hate the side effects of these meds. He says we have to try the meds first because, after all, it's brain surgery!

I am scared of what's going to happen with the Lamictal- I hear about acne and insomnia. Yikes! I have seizures when I don't sleep.

Wish me luck.

Jules

[Nakamova]

Hi Julie, welcome to CWE!

I'm on Lamictal, and my experience is basically positive -- i.e.it controls my seizures and the side effects are tolerable. When I started out I had insomnia, but after a few months that side effect went away. I do get acne on my chin, but it's not that bad. It's important with Lamictal to ramp up very slowly; I hope your med transition schedule is "low and slow."

You mention a few different triggers -- I might add that aspartame might also be a contributing factor (in the Diet Coke), so you might want to avoid that as well as caffeine.

I hope you feel free to explore the forums here and post questions and comments as the mood strikes. There are many folks with Lamictal experience here, so you should get plenty of advice and empathy.

Best,
Nakamova

[valeriedl]

Glad to meet you!

Stress is a big seizure trigger for me. When something extreamly stressful happens my husband and I just wait for the seizure to come along and sure enough with in the next few days there it is. Sterionus activity is another trigger for me. If I do some seirous house cleaning - I scrubbed the bathroom down recently from top to bottom and had a seizure after that. Also recently I was picking up sticks, we have a ton of trees in our yard, I had one after that.

My neurologist told me to stay away from caffeen because that is a seizure trigger for alot of people.

After I have a seizure I'm worn out, I'll sleep after it and usually even the next day. I'm still so tired that I barely get out of bed to do things. I'm on Keppra now and I get angry about things so easily, espically when I'm out in public. I've told so many people off in the grocery store so many times I've lost count.

I'm also on Lamictal. Depakote and Tegretol too. I don't have any problems with sleeping or acne. Give it a try for a while and see if it works out for you.

You'll get alot of good information on this site and you can probably answer questions for others too.

[huskymom]

Hi Julie and welcome

Stress is a biggie with me too. I try to stay away from it, but let's face it, it follows us everywhere! I take vimpat, carbatrol and Keppra with a chaser of prozac

I wish you luck in getting your meds and side effects under control.

[JulesD]

Thank you for your reply.

I am seeing my neurologist next week and seriously considering Vimpat over Lamictal. I know both have their positives and negatives, but how has Vimpat been working for you so far? Cost is not an issue for me right now, both are covered on my plan.

[Nakamova]

Hi Julie --

These threads from the CWE archives might be helpful:

Looking for Info on Vimpat
Vimpat, a new AED, has anybody else tried it
Has anyone else taken Vimpat? URGH!!
Lamictal & Vimpat Questions
No More Vimpat
Vimpat

[stephanieholly]

Hello how do you do? Nice to meet you xx I take Keppra too!! Yucky stuff! x