New to the forum: tonic-clonic seizure

[Wish Granted]

Hi all. My name is Richard and I joined this site the other day after reading a few posts.

Am appreciative to have found you all

I feel isolated from people with epilepsy in my real life. Am in my mid thirties and began having

episodes in my teens. With consistent medication compliance and attention to triggers, I have gone 18 months without a

seizure, however in the last year I have been on a roller-coaster, with several head injuries as a result.

Am living on Canada's West Coast and have access to health care, however at this juncture connection is what I crave.

I can accept having epilepsy (took years to get here) and am 100% with meds (tegretol) for a while after a seizure.

But over time I drift and don't prioritize, and find reasons, like "meds make me sluggish" until the next time.

I also spent 9 months in substance use rehab in 2013 which was a radical game changer. I went from vegetarian to

completely plant based and went back to school. Nonetheless, I understand we are all on our own

journey: I was homeless during parts of 2011/2012 and for many years I was embarrassed to have epilepsy and so I told no one.

Not any more!

 

[Topcat]

It's good to see you here, a lot of good people I was gone from here for awhile and recently returned. Hope I can help.

 

[Porkette]

Hi Wish Granted,

Welcome to the forum! I've had epilepsy for 48 yrs. I started having seizures when I was 10 yrs. old. It was hard for me
to accept when I was a kid and back in the early 1970's not to many people understood epilepsy like they do today.

I was on tegretol and many other seizure meds but then my Epileptologist who is a Dr. who specializes in epilepsy did
a DNA test on me and found out I was drug resistant to all seizure meds out on the market now so he told me to start
using the medical marijuana and I was amazed at how that has help reduce my seizures to the lowest in my life, even after
I had brain surgery to reduce my seizures.

Everyone here has been a wonderful friend and a great help to me when I've had questions and I've also learned a lot
from others here.

Many of the seizure meds will make a person tired until there body gets used to it. I found taking vitamin B12 1000 mcg.
once a day a help in reducing my seizures and I've been taking that for yrs.

I was surprised when I found out all the famous people who have epilepsy and that's what really woke me up and made
me realize I had to get out there and share with others what epilepsy is and what to do if a person has a seizure.

One thing that I was told to do yrs. ago is to keep track of all my seizures so I use a calendar and write down each time
I have a seizure the time and type of seizure I have, by doing this my Dr. was able to see a pattern in my seizures as to what
time of day/night I had any seizures and what days of the month I have seizures the most. I also had an e.e.g. done and I
didn't know it but my Dr. was firing up his cell phone and each time he did this is spiked up the brain wave during the test
so they found out I was cell phone sensitive meaning if I'm in a store or someplace where there's many people using their
cell phone at the same time it will trigger seizures because of the frequency.

Try to get out there if you can and not be so isolated. I work in a public school as a Teacher Aide and I've been doing
that for 34 yrs. I will have seizures at school but students are no longer afraid of them because I have taught them all about
epilepsy and what to do if a person has a seizure. I wish you only the best of luck and May God Bless You!

Sue

 

[HumbleDeer]

Keeping track is great! I use an app that's on the Google Play Store and hard to find for iOS but it's by Olly Tree apps. It's great to keep track of things.