Hey all, new 'round here

[JWest]

Hey everyone, I just came across this forum and thought it looked like a nice community.

Anywho, about me- I had fairly frequent seizures when I was just a wee lad, from about age 2 til roughly age 5. They stopped when I was put on Depakote for several years, which I was eventually weaned off.

Well, I was fine up until 2005 (age 15), when I had a tonic-clonic seizure on a school trip. It was assumed to be exhaustion related, as I was dehydrated and running off of very little sleep (hey, I was a kid, you know how it is). Then, in 2007, I had another tonic-clonic seizure while on a trip with my church, and it was under similar conditions (dehydration, lack of sleep, and a very hot day at Lake Shasta). Just recently (January 2010) I had a third, but this one wasn't under any abnormal conditions. I was just sitting around on my computer when it happened.

SO... to make a long story short, the doctors I've seen still don't know what it is that I "have" exactly, other than that it's some very mild seizure condition. I'm currently on Dilantin, just as a precaution so that I don't have one while I'm driving or anything.

I'm very VERY grateful that my condition is so mild (3 seizures, all about 2 1/2 years apart), and that I can keep my driver's license. It's just a tad scary not knowing what I've got. I've had several EEG's int the past few years, and they've all come back normal. I'm overdue for an MRI though, so we'll see what turns up on that I 'spose.

Anywho, sorry for the long intro . I know my condition is extraordinarily mild, but I hope I'm welcome here all the same


PS: nice smilies here :woot:

 

[Nakamova]

Hi JWest, welcome to CWE!

It's great that your seizures haven't been too disruptive to your life. I would add a note of caution, which is that sometimes, when left untreated, seizures start to progress (i.e. happen more frequently, or more intensely), so the Dilantin can be a worthwhile precaution to prevent that from happening. EEGs aren't always the best diagnostic tools for epilepsy -- there can be false positives and false negatives, and if the seizures start deep enough in the brain, the abnormal brainwaves won't necessarily show up on the test. It could also be that your seizure threshold is relatively high, so it takes a certain combination of stressors (like fatigue and dehydration, as you've noticed) to provoke a seizure. It's definitely worth trying to avoid those triggers and paying attention to anything that feels out the ordinary.

I wish you continued seizure-free good health.
Best,
Nakamova

 

[skillefer]

Hi JW! Welcome to CWE. Actually, dont be surprised if EEG's or MRI's come back perfectly normal. I've had E for over 20 years, and only had 1 abnormal EEG. Like you, I'm on Dilantin. You're third seizure might be due to flickering lights on the computer. You might want to keep a journal to see if you can pinpoint a trigger. If you can't because you don't have them often enough (knock on wood)...then try thinking back to see if you can remember exactly what you were doing/consuming the days that you did have seizures. Some people find that large amounts of stimulants like coffee or energy drinks...or being sick...not getting enough sleep, blood sugar getting screwed up, or certain OTC meds for colds can trigger seizures. For others, flickering lights or even repeating patterns can trigger them. Several here use special filter to cover their computer screens because the lighting from the screens can trigger it for them. Hope this helps...and welcome!

 

[dfwtexas]

Welcome! This is a great place to come.
My neuro said that 40% of his patients with E had no indication on EEG. Lack of sleep and stress seems to be the biggest triggers for most. I do have some photosensitivity too. Keeping track of what your triggers are will be helpful
jenn

 

[Ruth]

Hi, you are very welcome here. Glad to have you.

Bernard made this forum out of love for his wife Stacy.

I see 2 triggers that you have, dehydration and lack of sleep. Be sure and drink enough water.

I have had epilepsy for 60 years and most of my EEG's have come back normal. I recommend you have a VEEG. That will show you have seizures. Ask your doctor for one.

 

[JWest]

Hey, just to give you all an update, I just saw my new neurologist today. Unfortunately, I may have some hoops to jump through to keep my licence. In CA, doctors are legally obligated to send the DMV reports of patients with epilepsy, so apparently the DMV has to send me a form which I then mail to my neurologist, which will then be filled out and sent back to the DMV... and after all that HOPEFULLY the DMV will see that my condition is light enough to not suspend my licence... ugh.

Anywho, flashing lights have never been a trigger for me, and I've been a gamer all my life I've had the typical "light flashing" test during EEG's, and that has always been normal as well, so I don't think I'm at all photosensitive.

Per my neurologist's suggestion, I'm now being switched to Lamictal and weaned off the Dilantin. I'm hoping Lamictal doesn't have any crazy side-effects, but I guess that's a wait and see process :?

Thank you all for the warm welcome and suggestions, I just hope I can get past the red tape with my licence and get on with my life.

 

[RobinN]

Hi JWest - WELCOME
I am curious since your seizures began at such a young age... was it tested to see if you have a deficiency of Vitamin B? It is one rare cause of seizures beginning as a young child.

My daughter has not been able to get her license yet. We are attempting to help her plan a life without, if that is going to be her lot in life.

I realize you began to have seizures at a young age, but I do want to share with you because not many conventional doctors offer this information. There is a clear connection between food sensitivities and seizures. Sensitivities can show up at a young age, and also in the later years. Just thought I would bring the idea to your attention.

 

[Ruth]

Hi JWest,

I am on Lamictal and doing fine on it. Robin is right, you do need Vitamin B Complex. I take one each day because my neurologist said that I needed it.

You need a VEEG for anything to show up absolutely. Ask your neurologist for one.

California is very strict on driver's licenses. I am 66 years old and I decided when I was 16 years old not to drive. It was legal for us to drive then. My thinking was, "Would if, during driving I had a seizure and killed myself or someone else."

I have never regretted my decision. I take public transit. Whenever we move, I make sure a bus stop is close by. Call up the transit center, where you live. Ask them if they have Dial-A-Ride, and take you where you want to go. All you have to do is call and ask. I have learned that walking is good exercise for me. I am only a 30 minute walk to the stores.

When I have to go out of town, there is a bus that will take me there. In bad weather, I ask my husband to take me places.

 

[dfwtexas]

In Texas, it is illegal for your doctor to breech your medical privacy by releasing any information to DPS. So glad to be in Texas! Whenever I have a seizure, my doctor has to give me the "you should not drive for 6 month" speech, but that is where it stops. E has so many varying factors, it's hard to determine which people will have problems while driving.
When I did the light test during the EEG, it didn't show any photosensitive issues. However most of my seizure have been at work, I believe the lighting is to blame. After getting diagnosed, I went to see Batman movie and had seizure. I attend a large megachurch with rock band....if I sit in the back, I am fine...but if I see close to the stage, I will have a simple or complex or both. I have noticed it is the red lights that bring it on. It seems my photosentivity varies as to certain lights....so it not real clear and I will err on the side of safety. I haven't been back to movie theater, I don't know if a movie with less visual effects would be ok, but have decided not to take that chance.

 

[Ruth]

I believe it is illegal in any state for a doctor to tell the DMV medical information. In California, you get a form from the DMV and have the doctor fill it out. If the doctor gives you the okay, you take it back to the DMV and get your license back.

The privacy laws are very strict in CA. I even have to give permission for my husband to have access to any medical information.

The same goes with bills. My husband pays the bills. When he pays mine by phone, they have to get my permission to let him pay my bill.

 

[imwithcoco]

Always welcome. Careful on the driving!

You're always welcome in my book. Epilepsy is serious business, no matter how frequent your seizures. And therein lies our problem because we simply don't know when the next one will hit.

Be very careful when it comes to the driving aspect. That has been the hardest for me. I don't seem to care so much for my own safety, but when I think about putting my kids in the car, that's another matter. Plus, I wouldn't want to hurt or kill someone else and not myself. I couldn't live with that.

Everyone's giving you really good advice, though. I liked Robin's and Ruth's particularly. Exhaustion seems to be a key and you really should look into the fact that the seizures started so young.

Good Luck!

 

[JWest]

Ok, now things are getting a little weird. I just had another seizure on March second. Having a seizure just a month after the previous one is completely abnormal for me. As I said, in the past I've gone 2 1/2 years between seizures.

What strikes me as odd is that without medication I was having seizures 2 1/2 years apart, then as soon as they put me on medication, I have another seizure a month later.

I'm getting kind of scared here, I don't want to lose my driver's licence. I already had to miss a few days of school because of that seizure, I don't want to have to drop out because my classes don't line up with the bus schedule. Heck, the nearest bus stop is at least a mile and a half from my apartment, and I have a class that gets out at 9:30 pm. Let me tell you, you don't want to be walking on the streets by yourself that late in this part of Riverside.

/end rant
Hopefully this will all blow over.

 

[dfwtexas]

Sorry to hear you had a seizure. I know it is so frustrating and it puts you on edge about having another. Did you let your neuro know? I would wonder if the med change could it triggered it too...but was there anything else going on, lack of sleep, stress,etc. Start a journal and write down as much as you can remember about your situation before the seizure.
I have been on Keppra since my diagnosis and I know it is working, but I will have a seizure once every 4-6 months just out of the blue...nothing going on that would have triggered it. My neuro has adjusted my meds when this happens...that's why it is important to let your doc know anytime you have a seizure. Today is 4 months since my last one and I am anxious just knowing I am at the point.

 

[Nakamova]

Sometimes seizures can change in terms of their frequency or duration, so it could be coincidence that it happened for you with the med change. On the other hand, my first instinct is to be suspicious of the meds. The response to the meds is highly-individualized -- the same dose and/or med that works for one person is horrible for another. Definitely let your doc know and ask about other options.

 

[RobinN]

JWest - my daughters seizures increased dramatically on medication. It wasn't until we began to look at nutritional aspects and health of other organs that we saw improvements. It hasn't been a quick fix, as medication can be. Yet it is a life fix, as your overall health improves.

GI health, blood sugar levels, sensitivity to foods, organ health, all can play a role in seizure disorders. (I am sure there are others that I have left out) You have been able to go long periods of time without a seizure, which makes me think that there is something else going on here. In out experience, medication made it worse.

 

[Ruth]

Hey everyone, I just came across this forum and thought it looked like a nice community.

Anywho, about me- I had fairly frequent seizures when I was just a wee lad, from about age 2 til roughly age 5. They stopped when I was put on Depakote for several years, which I was eventually weaned off.

Well, I was fine up until 2005 (age 15), when I had a tonic-clonic seizure on a school trip. It was assumed to be exhaustion related, as I was dehydrated and running off of very little sleep (hey, I was a kid, you know how it is). Then, in 2007, I had another tonic-clonic seizure while on a trip with my church, and it was under similar conditions (dehydration, lack of sleep, and a very hot day at Lake Shasta). Just recently (January 2010) I had a third, but this one wasn't under any abnormal conditions. I was just sitting around on my computer when it happened.

I'm currently on Dilantin, just as a precaution so that I don't have one while I'm driving or anything.

I've had several EEG's int the past few years, and they've all come back normal.

Hi JWest, I notice a pattern here. Your seizures do have triggers: dehydratiion, lack of sleep, the heat and the computer.

You need to keep yourself hydrated, make sure of that. The computer can be a trigger, as well. It gives off a glare that causes seizures. Same with television. I have a glare screen protector. Some computers come with it built in. I think I used the right wording, anyway it gets rid of the glare. Sometimes, when I get off of the computer, I start having abscence seizures and my husband has to help me to the living room.

I have had epilepsy for 60 years and a lot of my EEG's have come back normal. That is because you are not having any seizures during the EEG. Have you had a V EEG? That will show it up. Ask your doctor for one.

 

[RobinN]

That is because you are not having any seizures during the EEG. Have you had a V EEG? That will show it up. Ask your doctor for one.

Ruth, as with other EEG tests the VEEG will only show seizure activity if you have a seizure while connected to the machine.

It was explained to me, that it is similar to the security camera at 7-11. If the camera is turned off at 11, and the store is robbed at 12, then that doesn't mean the robbery didn't happen, just because it wasn't caught on camera.

 

[JWest]

Thanks for all the help and support.

As for my computer being a trigger, I highly doubt it. I've never been photosensitive. I'm on computers all the time, playing games, doing school work etc. I watch TV, enjoy some time on my xbox- normal college guy stuff. I've never had any seizures triggered by light. When I was younger (during the period of my life where I had no seizures), my brother and I would sometimes play with a strobe light in a dark room (hey, it's fun when you're a kid ), and that never bothered me. I've also had the strobe test on every EEG, and have never shown any effects.

Basically, I spend the majority of my life surrounded by things that would make a photosensitive person have a seizure, and they've never explicitly given me one. I have a very "digital" lifestyle. I'm pretty much a power nerd by every stretch of the definition. Computers and electronics are a big part of my life, and have never triggered a seizure for me. I think the one seizure that I had while on my computer was just a coincidence, like something else triggered it and I just happened to be on the computer.

 

[Nakamova]

Even if you're not photosensitive, staring at a monitor for a long time can affect the quality of your sleep, which can end up being a trigger. Don't know if that's the case for you, but it's considered a good idea to have a half hour of non-computer activity to decompress before going to bed.