Newly diagnosed

[greywolf]

Hello everyone, I found this site through BC Epilepsy Society's website. Seems like a good place to be! I don't know anyone else with epilepsy. A bit about myself, I had my first tonic clonic seizure when I was very young, I think around 3 years old. Then when I was around 9 or 10, I had absence seizures for a while before it was diagnosed and treated. I remember taking medication in those days and eventually the seizure activity stopped.

Now I'm in my 40s and a few months ago I had a severe tonic clonic seizure while driving my car. I was leaving work, I remember pulling out of my parking spot and turning to get on a main road. The next thing I knew I was waking up in an ambulance and the paramedic told me I crashed my car into a house! It was very frightening, but luckily no one else was hurt. They took me to the ER and ordered a bunch of scans and tests, and put me on Keppra right away. So far no more seizures. Thankfully I've been ok with the Keppra, I was worried about side effects, but it seems to be working for me.

I have a neurologist now, and he has diagnosed me with epilepsy, but he is still doing more tests and things before we have any sort of final answers as far as what type or what's causing it. My life has completely changed, I can't drive and now I can't work (driver's license was cancelled due to the seizure and accident, employer says I need a license to work at my job), so it's been quite an adjustment... I guess ultimately it could be a lot worse though, so I have to remember to be grateful for that.

Anyway, sorry for the long post! Looking forward to getting to know you all a bit.

 

[Porkette]

Hi greywolf,
Welcome to CWE! I've had epilepsy for 53 yrs. I started out having absence seizures that the Dr. couldn't control and
then 2 yrs. later complex partial seizures started also. Back in the early 1990's I had brain surgery to reduce my seizures
and that was a big help.

I was on Keppra for a short time but it gave me such a hot temper and the drug increased my seizures that I went off the drug
then my Dr. did a DNA test on me to find the best seizure med for me with the least side effects only to find out I was drug resistant
to all seizure meds on the market so he told me to start using the medical marijuana and I was amazed at how the reduced my seizures
to the lowest in my life.

Be sure you cut back on the carbs and starch foods. I can't help but wonder if your seizures started up again do to hormone changes
at your age. My Dr told me that when a person goes through their change sometimes that can increase or decrease the seizures.

If you haven't started keeping track of your seizures get a calendar and write down the time and type of seizure you had also take
note if you were sick or if there was a low pressure in the weather. Sometimes that can trigger seizures for some people.
What triggers seizures for me is cell phones If I'm in a store and a lot of people are using their phones at the same time it will cause
me to have a seizure and that's because of the cell phone frequency. I'm sensitive to that frequency so instead of a cell phone I use
ham radio and talk to people and that doesn't bother me.

I wish you the best of luck and May God Bless You,

Sue

 

[greywolf]

Hi Sue, thank you for your reply. It sounds like yours is a very difficult case! I'm glad to hear that you were able to find something that helps though. And thank you for the advice! It is still early days for me (I guess unless you count my seizures when I was young), but I will definitely try to record any relevant information if I can when the next seizure happens.

As we are coming into the fall and winter season now, it will be interesting to see if the weather change affects me. I think that day of my seizure, it had been lightly raining, so maybe the low pressure has something to do with it. My wife seems to think it might have something to do with me being tired and/or stressed too. We have a one year old boy who is a handful, and sleep is a rare commodity around our household still. I've been told that stress and tiredness can lower the threshold for when a seizure might strike.

 

[Porkette]

Hi Greywolf,

I'm glad to help out and yes my case was a hard case I had scar tissue on the right temporal lobe of my brain that
was triggering my seizures but when I went in for surgery they found other brain damage so deep in my brain that not
a single test showed it.

Your wife is correct lack of sleep and stress are the 2 main things that can trigger seizures. Also some people have what
is called "seasonal seizures" which means at certain times of the yr. they will have more seizures. I have more in the fall and
winter because there's less serotonin this time of the yr. compared to the spring and summer.

What happens during a low pressure in the weather is the air gets heavy and in turn that can affect a persons hormones
which can trigger seizures for some people. You may want to try taking vitamin B12 1000 mcg. once a day that helps calm
the nerves. I've been doing it for yrs. and it helps and also as weird as it may sound apple cider vinegar with mother in it
has reduced my seizures. I take 2 Tablespoons in the morning before breakfast. I was doing it to lose weight but then I
saw how my seizures decreased and My Dr. told me the mother which is a good bacteria and good protein could have
been what help stop the seizures.

Wishing You and Your Family only the Best and May God Bless All of You,

Sue

 

[Sabbo]

Hello Greywolf. This is a great site. I, too, had seizures for many years prior to diagnosis. It took 3 or 4 tonic seizures when I was 14 to get a diagnosis. I STILL recall complaining to my parents of "weird feelings in my head" as a child which were finally diagnosed as simple partial seizures after one occurred during an EEG. I began having complex partial seizures approximately 26 years ago.
I learned to drive in high school, but the day of my final behind-the-wheel practice, I had a simple partial right before class. I decided right then & there that I DID NOT want to risk driving even though I CAN feel them come on, & they're usually over within 5 minutes.
The complex partial seizures are the REAL problem for me. Mine occur w/o any aura, and I only know about it if there's a witness or if I notice an injury, time lapse, or something odd. Due to them, I can't cook when alone at home, since I have burned myself SEVERELY at least 8 times during the. Another issue is that despite having accounting & economics degrees, I couldn't work. I tried twice, but very dangerous things happened, & my family said no more. Once, I nearly fell onto the tracks at the commuter train station--I "came to" at the local hospital. The other time, I had exited the office building in downtown Chicago & collapsed on the sidewalk--I "came to" at Northwestern.
I've been on EVERY AED out there for types of seizures I have/had. The longest I seem to go seizure free is about 4 months before I joke that my brain "becomes immune" to them. I'm currently taking 500mg Zonisamide & 300mg Xcopri per day. Even then, I get breakthroughs.

 

[greywolf]

Thank you for the reply Sabbo, yours also sounds like a serious case! Makes me wonder if/when I will have another seizure. It's still early days for me, I'm only coming up on the three month mark since my seizure and accident.

I didn't even know what an aura was until after this all happened to me. As it turns out, I was having auras a number of times before. I lose a large part of my vision in both eyes when it happens. It is like a grey blind spot that starts off small, but slowly grows with a sparkling/flashing edge, eventually covering nearly half my vision up to the central focus point, so I am unable to read or write or concentrate on anything right in the center of my vision until it eventually dissolves after around 30 or 40 minutes. I've been having those once in a blue moon for years now, but more frequently in the last year or so. I always thought "I should mention this to my doctor" when it would happen before, but never did... I actually had one of those about an hour before my seizure, but since it happened before, I didn't think anything of it. I was actually out on a test drive of a car I was working on (I'm an auto mechanic) when that aura happened, but luckily I was already heading back to the shop before it hit the central focus point of vision. Of course when the actual tonic clonic seizure happened, it hit without warning. I felt totally fine and then suddenly I was in an ambulance. Now I know that if I have any auras, I should prepare myself for another seizure, but so far no auras yet either.

The driving thing is something I've been thinking about lately too. Where I'm from, I only have to wait and be seizure free for 6 months to get my license back again. But just knowing that I could have another seizure and lose consciousness, possibly without warning, I don't know if I want to drive anymore. It sucks, because I'm a real car guy, and I need a driver's license to do my job as a mechanic. I might have to retrain and do something else.

Thanks as well Sue. I've heard before that our gut bacteria colony is like the body's second brain. Even the ketogenic diet is supposed to help some people with seizures. I'm sure there's something to it all that maybe science is just beginning to understand. I guess each of us just has to find the things that work best. It seems like each case of epilepsy is as unique as the people who are affected by it. May God bless you and your family as well!

 

[Sabbo]

Hello. Even where I live, a person only needs to be seizure-free for 6 months before they regain their license. The issue I've ALWAYS thought about is HOW would a state's DMV even know that a person is epileptic--Doctors don't tell them.
Once those complex partials started, I was GLAD I never started driving. The main problem that's caused is that I'm stuck in the house--I'm reliant on others to take me ANYWHERE/EVERYWHERE I need to go.

 

[Bernard]

Hi greywolf, welcome to CWE!

Wow, what a scary story, but what a blessing no one was seriously hurt. Everyone's journey with epilepsy is different - some are more difficult than others. Either way, there are many folks here that have experienced the gamut.

 

[Heavy Kevy]

Welcome greywolf,
There are a bunch of friendly knowledgeable folks here. Please ask any questions, or just complain about whatever is going on. I’ve done plenty of ranting here.
Wishing you the best of luck.