Past history and recent episodes

[ddoobie]

Hello all,

I'll start by saying I am new to these forums, and am glad to see that there is a community for these types of things. Now for my worries:

I started having complex partial seizures when I was about 15 years old (in 2005). I went to the doctor, and they found a golf-ball sized tumor in my right temporal lobe, attached to my hippocampus. I had surgery to remove the tumor from my brain, and they put me on Keppra to control the seizures. After a couple of months, they took me off of the medication, and I have been relatively clear of any seizures for the last 6 years (an aura once or twice, but nothing further).

About a month ago, however, I woke up one morning extremely confused. At first I figured it was just because of a drastic change in environment (I always stay the weekend in another town with my gf of 5 years, and this was the first weekend in about two years that I had not. I had also recently moved into a new apartment). Throughout the rest of the day, though, I analyzed the feeling, and decided that the level of confusion I had experienced couldn't just be waking up somewhere new. I decided to see how the week went, and not to worry about it too much.

Last night, however, I had another episode. I had just driven in from my girlfriends house; it was about 4:00am and I was lying down to get some sleep before work at 9:00am. I started feeling as if I were going to have a seizure, but it was a bit different from the auras I have experienced in the past. I didn't "feel" any sort of way, I just kind of thought to myself "I might have a seizure in a second or two.." That was literally it, no bad taste like I used to have, no funny smell, no confusion, nothing. I just sort of knew. Then I had what I assume was a seizure.*

The seizures I used to have almost always went like this: strong aura (funny taste, confusion), then immediate strong sense of Deja-vu, dizziness, dream-like state with minor hallucinations, then a sense of calm, followed by me knowing I just had a seizure, but not remembering exactly what I did, said, or how anyone else reacted while it was happening

Last night, however, the seizure felt different from what I used to experience. It was just a sense of strong dizzines, with only a slight loss of awareness. I just rode it out while it was happening, and it only lasted maybe 10-15 seconds. Afterward, however, I felt an extremely strong sense of confusion. It felt exactly like what happened a month ago. I knew I was in my apartment, I knew where I had been, and how long I had been home, etc. I just couldn't think straight for the life of me. My focus was completely gone, and the only thing that made sense was to get up, and walk around my apartment until I regained my usual state of mind. The confusion lasted maybe 30 seconds. During the confusion, I also felt very sad and afraid; I am not sure if this was 100% because of the confusion, an effect of the seizure, or both. The main feeling was a strong longing for my girlfriend or mother, wishing someone could tell me what was happening. The last 10 seconds or so was me staring in the mirror trying to focus as hard as I could. Then the feeling washed away, and all was normal.

These situations are the only indications of a seizure I have had in the 6 years since the surgery. I guess I just find it weird for something like this to just "pop back up" after such a long period of no symptoms. They literally have come out of nowhere.

Some additional info: about a month and a half ago, I quit smoking cold turkey. The two days before last night's episode, however, I caved and smoke a whole pack in two days, finishing the last cigarette about 30 minutes before last night's episode occured. I also (as I'm sure you can gather from what I've written) have a crazy sleep schedule, some nights getting only 3-4 hours.

Finally, my questions:

This scares the hell out of me. I am usually the calmest, non-worrier you'd ever meet, but this has me scared. I am worried my TLE is going to come back, and if it does what that could mean as far as my brain goes. The tumor they pulled was benign, but what does it mean if I have another one? Does that mean cancer? Also, took my right hippocampus with the tumor they removed 6 years ago; I obviously don't want them to keep removing parts of my brain if they have to cut another tumor out..

Are there factors that cause TLE to act up or even pop back up? The factors in my case (the ones I can think of, anyway) would include:

1. Waking up in an unfamiliar, almost unexpected environment
2. Minor sleep deprivation
3. Stress
4. A big intake of nicotene in two days after smoking no cigarettes per day for that last month or so.
5. Possible dehydration
6. Slightly unhealthy diet

I have an anual MRI and check-up with my neurologist in january. If I experience what I think is another seizure, should I contact him before then?
I lead an independent, so-far successful life. I am 21 years of age, have the career of my dreams with good pay, my gf is due to move in in just two months after several years in a long-distance relationship, and I plan to propose shortly after. This has me very worried though, that these things could fall apart. I have felt so lucky to have gone through what I thought was an epilepsy-curing brain surgery, with no side-effects. I am 100% acclimated to living without epilepsy, and to be honest don't even know how to deal with having epilepsy on my own. Last time I had issues like this I was living with my mother and father who were there to comfort me and help me through it.*

My final question is this. Based on you guys' experience, knowledge, or opinion, does it seem likely that my TLE could come back as a regular thing? Or could it just be that all the right factors for a seizure have been there these last two episodes?

Any and all input is welcome; as I said, this has me a little scared.

Thanks.

 

[momofthree]

I don't know much about TLE, however I am a parent of a child with epilepsy. As a parent I say you need to get your self back to your neurologist ASAP. I would find it hard to believe that a non cancerous tumor would come back malignant but I don't find it hard to believe that it would come back. I think you will worry yourself sick, sometimes the fear of the unknown is much worse than what it actually is. You should make it your priority to get back to the doctor, this does not have to stop your otherwise promising future. Good luck to you!

 

[Nakamova]

Hi ddoobie, welcome to CWE!

There's no way to predict whether these recent episodes are flukes, or are an indication of trouble to come. You should consider these recent episodes as a wake-up call to do what you can in terms of prevention. You've identified some factors that could have triggered your seizures, possibly in combination:

1. Waking up in an unfamiliar, almost unexpected environment
2. Minor sleep deprivation
3. Stress
4. A big intake of nicotene in two days after smoking no cigarettes per day for that last month or so.
5. Possible dehydration
6. Slightly unhealthy diet

The nicotine binge is an especially likely culprit! If you can avoid these triggers that should help. I recommend that you keep a diary, tracking both seizures and general health issues, so you can get a handle on what's going on. If the episodes recur, and/or increase in frequency, it's a good idea to talk to your neurologist sooner rather than later -- you don't want your brain to get back in to the habit of seizing.

Best,
Nakamova

 

[travel bug]

Hi ddoobie

I would suggest talking to your neuro about moving up your MRI. More than likely your seizure activity is due to the factors you listed - especially the nicotine – but it’s better to get it done now and then you can focus on your girlfriend and dream job instead of worrying “what if?”

I understand that waiting-for-the-next-MRI feeling. I was diagnosed with a low grade glioma in early 2007 and had MRI’s every 3 months the first year, then my neuro decided it was okay to go a year between. I was fine for 8 months then started to have strange new auras. I didn’t want to seem like a worry-wart, but I thought it was significant so I went to my GP. He agreed and sent me for my MRI a few months early. Good thing he did because the tumor, though very slow growing, was sneaking its way closer to my motor cortex and showed some signs of becoming higher grade. Long story a bit shorter, I had surgery and a year of chemo and now have a good prognosis though, since the tumor couldn’t be completely removed, I still have to take anti-seizure meds.

Again, it’s probably not your tumor coming back, but since it is possible for them to re-grow, it’s better to find out now if it is or isn’t the cause. If it is, the sooner you can deal with it; if not, one less thing to worry about.

Take care!