RandySherman: hey randy, Thanks for the advice, i think the first thing ill do if the neurologist diagnosis me with epilepsy is go see epileptologist. My ideal form of treatment would be something more natural like cbd oil, i would prefer the earths medicine vs anticonvulsants but i dont know how safe and effective it would be. I feel like there isnt enough studies done on holistic approaches because there isnt much profit in that form of treatment vs pharmaceutical treatments like anticonvulsants and anything that brings in the cash lol for that reason its kinda of risky to depend on alternative treatments. Have u heard of any success stories from cbd oil users?

Mar, you may want to find a Epileptologist ( Neurologist who specializes in Epilepsy ) nearest you. Find the Epilepsy Foundation in your state. They could help you find one . Plus they can help you find a Epilepsy Center or clinic.

There are different treatments. There’s the basic AED ( anti epileptic drug ) medications, CBD oil, VNS ( vagus nerve stimulator ) , DBS ( Deep Brain Stimulator ) RNS ( Responsive Neurostimulation ) and brain surgery . 4 of the treatments you need to do test to see if your Candidate for them.

Your statement about Epilepsy is like an umbrella, your right. We all have different kinds of Epilepsy. We all have different types of seizures. We all have different body chemistry and react differently to the many AED medications on the market. Everyone diagnosed w/ Epilepsy, we’re diagnosed at different times of their life. Some of us had it since we were babies , some may of been adolescent, some in their teens and so on. Epilepsy doesn’t have to be generic. There are many other reasons of getting diagnosed with Epilepsy. Another good example for Epilepsy, is hat it’s like the Russian Stacking Dolls. One doll would fit into another doll, going from big to small. There are many Layers of Epilepsy

Im sorry that you had to go through that and i hope everything can be worked out. I can relate a bit, it took a year for me to see a neurologist, but it also took a year for a dr to refer me to a neurologist but after the neurologist diagnosed me it took me 4 years to finally get the medication.

Everybodys experience with epilepsy is different, it helps to find your triggers ( what causes yours) but hopefully anti convulsants can help control the seizures.

For me despite my epilepsy i have managed to get my lifeguarding and swim instructors certifications and currently am in school to become a nurse so i try to do as much as i can to live a normal life, but there were a lot of things i had to give up and change. Sometimes you do have to fight harder to live the life you want and a lot of times its trial and error to see what you can do with your epilepsy and how it affects you personally. Its also a trial and error with medications.

It depends on if your seizures can be controlled for a long enough time, it is usually between the 2-5 yewr mark that they keep you on even if your not having them, they might try to weine you off slowly if your not having any, and if you still dont have any while off the medications greqt. But if someone does have a seizure off the meds even if it was a couple years later they would most likely get put back on again.

Its helpful to take note of your own seizures, record length of time the seizures, the type if it stsys tonic clonic or theres other kinds, what everything looks like, if someone witnessed it, what you felt like before, what you felt like after, every time you have one. Neurologists like to know frequency and patterns. To see if patterns have changed, or stayed the same.

I hipe you can get some answers soon, and the neurologist you see can be helpful and what you need to figure thijgs out.

Everyones journey is different. Googling epilepsy is probably the worse thing you could possibly do!
1: I have had epilepsy my whole and lead a normal life. Work, drive, and have a family. This all depends on your epilepsy and how it effects you. Then how you are able to manage it with therapies.
2: I've heard of people having late onset epilepsy that corrected itself with time. But doctors normally don't diagnose you with epilepsy until you are an epileptic. Meaning you are showing a pattern of seizures that have to be controlled.
3: I have had epilepsy my whole life but wasn't until I was 15 when I had a tonic clonic that we realized I was an epileptic. I have been on meds for the last 18 years and no real end in sight. But people who have undergone surgery have successfully gotten off meds. Or even some people In my doctors Adult Keto Clinic have gone med free for 3 years. So there is hope in sight!
4: This site has been far more helpful than Google. Reach out anytime you need an ear.

Hi Mar, I’m approaching 65. A near death experience at 14 months is the probable cause for my epilepsy, though I remember being about 7 when I first got a seizure. Something simple with an aura, I would lay down and nap no more than an hour, get up and continue on with my daily activities. I would have 2-4 seizures for the year. I was approaching my thirteenth birthday and seizures went crazy with me missing a few weeks of school until epilepsy was diagnosed and medication got me under control. I got a driver’s license at 16 because of seizure control being great. I’ve have taken a lot of various medications and finally had brain surgery in 2004. My last seizure was in December of 2011 and with the help of Vimpat and now the generic version I’m still seizure free. I have a fun job as a Barista where I love my customers. Been with my wife since we met in ‘75, family and friends. Life will have its ups and downs, but it’s what you make of it. I’ve lost friends, they’ve been around for whatever they were supposed to do in my life and then they’re gone but not forgotten. I can honestly say that the epilepsy only prevented me from joining the armed forces, that’s it. I always try to do the my best, don’t let the epilepsy screw with my life. Be all that you can be.
Take care of yourself.
Jerry.Huot