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Ron Martin

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Hello All !,...Well my title says it all or asks it i guess ? I was diagnosed with epilepsy (minny mal) in the late 70s & really never took any long term medication until the mid 80s when they put me on Depakote, worthless in my opinion.. I never had a Grand Mal seizure my whole life until i went to my Neurologist in June of this year when he put me in an induced seizure by flashing bright LED lights in my face for approximately 3mins. That's all i remember. I suffered 4 seizures within the same amount of hours in the hospital. Now I'm having up to 3 seizures a month ! I lived a great fast paced life until that day & now i wish i never would of went ! I truely believe that him inducing the seizures ruined my life. I never had anything more than a few "stare into space" seizures my whole life then BAM ! Has anyone elese here experienced this & what are your thoughts ?:ponder:
Thanks To All !
 
When I had my EEG they triggered a simple partial seizure, which is out of the norm as I have nocturnal seizures ( in my sleep). It didn't affect the number of seizures I had after though. I guess it's possible that the major seizure triggered something in the brain and has made things worse, a huge seizure takes a while for the brain to recover from. It could be a coincidence too.. maybe it just got worse, unfortunately things to just change sometime.
How long ago did this happen? How many little seizures were you having beforehand? Have you had any scans to see what was causing them?
Hope things get better for you. Seizures suck.
 
Hi Frog, the Grand Mal's started in June of this year when he induced seizures, but i was only having little staring episodes every few days my whole life until this point. All my testing has been unanswered todate. They can find nothing that will give them a pinpoint.
What's really crazy is i have always been a weekend warrior when it comes to drinking, but not a drop during the week. Just since this stupid visit to my Neurologist, if i have so much as 3-4 beer's or a couple mixed drinks, i can plan on having 1-2 seizures the next day, but never the same night ? And believe me, i could put away alcohol during big events & never suffer anything more than a minor headache ! I'm VERY bitter about this & i do believe it could all be avoided if he had not induced seizure's ! :(
 
Hi Ron,
I've had epilepsy for 44 yrs. and it sounds like you are photosensitive which means when they flashed the lights when they did the e.e.g. it triggered a seizure, it also can it
can also show what colors they flash can trigger seizures for you.
Years ago I was on Depakote and my neuro told me not to drink alcoholic beverages because it would mess up the drug, its also been proven that if a person drinks for a long period of time that it can sometimes cause epilepsy.
If your neuro can't pinpoint the cause of your seizures request that a spect or pet scan be done if you haven't had one already.
I wish you the best of luck and May God Bless You!

Sue
 
I've had several eeg's but what makes me so mad is why didn't they do this "stobe light" test years ago ? I attended many 80s-90s era concerts in my life with amazing light shows aswel as being a welder looking at the arc at times with absolutely not effect. As far as the alcohol im told it is the Keppra that is the culprit. I'm so confused !?, Keppa is supposed to stop the seizures i never before had & also was told that alcohol actually helps slow down the electro waves in the brain thus muting seizures, but yet mixing the two....makes me have seizures !..
 
Welcome Ron,
I'm afraid that you may have to cut back on your consumption of alcoholic beverages. I noticed, lately, that after I drink I get a headache. I only drink one beer a day. No heavy stuff but it hits me about an hour later. I have been on meds since 2006 but this has just started in the past few weeks. Unfortunately, our bodies are continually changing and I think mine is trying to tell me, "Stop drinking!"
Good Luck!
M
 
Hello, Ron. I've had epilepsy since childhood. I've had Simple Partials since then, but nobody knew what they were. Suddenly when I was about 14, I had 3 or 4 Tonic Clonics, but none since. That's was when doctors finally diagnosed the "feelings" I complained of as seizures. About 17 years ago, I began to have Complex Partial seizures. Despite taking both Topamax and Vimpat, I still get breakthrough seizures.
 
Yeah its a big kick in the britches for sure, Lol. Can't believe it took almost my whole life & a strobe light crazy Doc to change my life forever. I've read on different sites that the exact same thing has happened to thousands of people & some have actually sued & won ! Why force a person into a life of seizures just because !?
 
Plus he has me on Ativan to calm my melon even further Lol...7mons ago i hardly took a OTC pain reliever, now im taking drugs 3 times a day !
 
Ron, Sometimes doctors inadvertently make it worse. The lights are supposed to trigger a seizure but not like that. Sorry.

All I can say is take the meds, it doesn't have to be forever. If they stop it cold for long enough you might recover and get back to normal. After a year or so, you might be able to reduce the meds.
 
Hi Ron ---

Sounds like you have had a lowered seizure threshold for much of your life, and the strobe test put you over the edge. It sucks that it was the strobe test that did it, but to be fair to the neuro, the test is a standard part of EEG testing. It's possible that the next time you were exposed to strobe lights you would have had a major seizure, so at least you had your grand mals in a safe space. (I know, that's not much of a silver lining, but it's all I've got).

As far as drinking goes, Keppra has a very short half-life, so anything that messes with your metabolism can potentially affect how quickly the med makes it through your system, and can leave you vulnerable. Even if the drinking happens the night before, the effects can be delayed or cumulative, especially if there are contributing factors like dehydration or fatigue. You might want to consider a medication with a longer half-life, such as Lamictal. Everyone is different, but it works well for me, and I can still drink a few beers or a cocktail or mixed drink or two without any ill effects.

No point in dwelling on what your past history was with drinking or with strobe lights -- our seizure threshold can change a lot over time, and it can be tough to predict what will lower or raise it. I did all sorts of things in college (and after) that should have triggered seizures -- but didn't. Who knows why my brain waited until I was 35 to misbehave? Like you, I was always super-healthy, but now I have the daily med to take, and have gone through two surgeries to fix shoulder damage from seizures. Everyone on this forum has had their lives upended by seizures. It's easy to look back with anger; it's harder (but ultimately more practical) to move forward and squarely face the challenges that living with epilepsy may bring.

Suing the neuro may be tough to do; I wish you luck, and peace.
 
Nakamova, i realize everything you have pointed out is true. I do need to look forward, not in the rearview mirror of life. I have a lot to wrap my head around here in the next few months, like not driving for the next 6mons & people always watching me saying "are you ok?". Lifelong buddies have even stopped asking me to go motorcycle riding & hunting with them in fear i might have a seizure....guess i can't blame them.
 
The not driving bit sucks. The problem is that people don't understand Epilepsy and it's normal to fear what you don't understand. A lot of people are only concerned for your well being and are afraid they will not be able to help you properly in the event of a seizure. I did when first diagnosed lose some friends who thought I was weird and anti social, because I stopped going to a lot of social things and I lost a lot of independence not being able to drive. Once I got over the initial rejection I realised those were not people I needed in my life anyway.. so no real loss there. Maybe talk to your friends and explain things to them. What to do if you do have a seizure etc.

I was at the chemist the other day and a guy waiting for his script had a tonic clinic seizure next to me! I've never been on the other side of things before. I helped administer first aid and we called an ambulance, but I didn't realise how scary it was.
 
Hi Ron,
I have never heard of a strobe test triggering a permanent change in seizure activity. I have had many strobe tests and they do not bother me.

The strobe test is a reactive test to see if your brain is photosensitive (which yours is), the seizure is a response to a specific pattern or frequency of flashing light, it's a reflex to a stimulus that ends when the stimulus ends.

If you also started medications after the strobe induced seizure, I would look there. Just because a medication is called an anti-seizure medication does not mean it will work that way in everyone. Depending on your brain and body chemistry, an anti-seizure drug can actually cause seizures or make existing seizures worse.

When I started my first anti-seizure medication my seizures got a lot worse. Before the med I was having about 1 seizure per month, after I started the med the seizures increased from 1 per month, to 1 per week, then to multiple per week, then to daily seizures, then to multiple seizures daily.

For me stopping this medication reduced the seizures but they never returned to pre-medication levels.

Booze and seizures do not mix, I got away with it for over 15 years, but things change and seizures evolve and now I cannot drink like I used to. I can have the occasional beer or cocktail, (sometimes I can even have 2!!! pathetic compared to the old days, lol) but no more 6 pack days or "all-nighter's".

Booze and seizure meds do not mix and booze and benzos like Ativan definitely do not mix! Benzos are rather dangerous, highly addictive, one of few drugs where you can experience withdrawal while still taking it do to tolerance. They also interfere with the brains ability to enter deep stages of sleep, stage 3 and 4. This interference with deep sleep can increase seizure activity.

Benzos and alcohol are CNS depressants when mixed can seem to have a synergistic affect calming the brain which can make people stop breathing in their sleep.

You can think of alcohol and seizures like this. Alcohol mimics GABA calming the brain, when alcohol is present and calming the brain, the brain does not have to produce as much GABA because the alcohol is mimicking GABA, so GABA production slows. Alcohol breaks down pretty quickly and now the alcohol calm is gone and the brain has to start producing GABA to get back to it's normal state of calm but it can take a while and during that adjusting period seizures can occur.
 
I really feel for my beautiful wife & kids that have seen me seizure. I seem to recover fairly fast once i get my hearings back. The neurologist said i may feel like sleeping a lot after a seizure, but i refuse to do so no matter how bad i feel. I usually take a Ativan & Advil then bust butt through the fog....espresso helps too Lol. I'm sure its a ugly sight for sure. I try to laugh it off with my kids calling it the "Floppy Crappie".
 
Frink, that is some really deep information & thank you ! I'll have to research most of the "technical terms" you spoke of, but very enlightening ! Thanks :)
 
The strobe testing has me baffled too ? I was welding 45mins before i went to my appointment. I have always intermediately checked my welding by looking at my work which obviously is a very strong arc of pulsating light & never had a so much as a tingle Lol. Just can't believe it !
 
If I remember correctly, the strobe has to occur at a frequency that matches or perhaps even a "harmonic" of the frequency of the seizing brain cells, 3-6 Hz. The frequency range may be wider.

Your welder is most likely flashing around 60Hz or faster.
 
I have been on every AED out there. I often joke with my neurologist about feeling like a lab rat.
I was allergic to many of them. The 1st AED I was given, Tegretol, caused the most severe reaction. I had a high temperature--around 104, a rash all over my body, & lost most (85%) of my hair. Keppra's reaction was the next worst. It caused cramps so severe that I was doubled over in pain.
 
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