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