Questions and looking for hope...

[JackQueenKing]

I was diagnosed with epilepsy 7 years ago.
My first seizure happened after I stayed awake for about 48 hours studying on adderall. I had no idea that it had happened until my friends told me the next day. Needless to say I never touched the stuff again.

I thought I was fine and let it go... but I started having what I thought were severe panic attacks but after the burning smell and electrifying feeling got too intense I decided to see a neurologist which is when I was diagnosed.

I went thru many medications until I found the two that work for me, Lamotragine and Topiramate. But lately these have been losing their affect.
The seizures get worse and I take more of the medication but all I get is more of the side effects, double vision etc.

I apologize for the long post but I've never been on a forum like this and I have no idea where or how to post something like this. I'm sorry.

my next option is electroshock therapy , which scares me to death... and I thought that was my "last ditch effort" but after doing some research into how epilepsy is now newly classified in 2017 it seems my path has been extended and darkened.

basically my question is , has anyone gone thru this in any similar way? I will do anything to keep a scalpel out of my brain... any insight , advice , ideas, anything.. is greatly appreciated... again I'm sorry for the long post here I've never done anything like this before and I'm desperate.

 

[Nakamova]

Hey JQK, welcome to CWE!

No worries about posting, we're here to "listen". Plus your post isn't that long.

While it can help many folks with depression, I'm not sure electroshock therapy is a great idea for people with epilepsy. It's basically a mini-seizure administered in a controlled environment and it can have both short-term and long-term effects on memory. (unless you're talking about transcranial direct current stimulation (tDCS), a treatment which is still experimental).

I realize that brain surgery is a pretty daunting prospect, but it might be worth discussing with your neuro, if only to get a sense of whether you're a good candidate and how it compares to other treatments like electroshock. There are also different kinds of surgery -- implants like the VNS and RNS, in addition to lobectomies. Obviously there are no guarantees, but there ARE success stories with surgery.

There are also new medications being approved all the time, so it might be worth giving one of those a shot.

 

[Porkette]

Hi JackQueenKing,

Welcome to CWE! I started having seizures when I was 10 (almost 55 now). One thing that will trigger seizures is lack of sleep and stress those are the 2 main things that trigger seizures.
It sounds like you may have had a aura seizure also known as a simple partial seizure when you began to smell something burning. When I have this form of seizure I will often smell a odd odor like natural gas or deviled eggs and I will also get a nervous feeling in my stomach and see colors flash back and forth in my eyes.
If you are having double vision the seizure med may be at a toxic level which can be dangerous you need to lower the dosage and also let your neuro know what's going on immediately. This has happened to me in the past where the drug will stop working so the Dr. will up the dosage then it becomes toxic and in turn there were times I ended up in the emergency room.
Here are some things you should do that will help you with your seizures:
Get a calendar and keep track of your seizures write down what time they happen and the tyoe of seizure by doing this your Dr. may see a pattern as to what days of the month you have seizure or what time of the day you may have any.
Cut back on the carbs and starch foods and eat foods high in fat. Also you may want to stop using anything with aspartame in it (Sweet & Low) they found out this causes more electrical activity in the brain which in turn can trigger seizures for some people.
If you wake up tired a lot ask your Dr.to do a sleep study you may have a sleep disorder which can trigger seizures I found this out after I had a sleep study done and I was having seizures in my sleep 1-2 hrs. before I would wake up each day.
Ask your Dr.to do a DNA test on you this will show what seizure med is the best for you or if you are drug resistant. I found out I was drug resistant to all meds out on the market now for epilepsy so my Dr. put me on medical marijuana (CBD) and that made a big difference for the better. Here's wishing you the best of luck and May God Bless You!

Sue

 

[Sabbo]

Hello and welcome to the CWE. I have simple partial and complex partial seizures. I get an odd feeling in my head. I'm totally unaware of a complex partial's occurrence w/o witnesses to explain what happened & its length.