New to CWE

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Music36

Stalwart
Messages
445
Reaction score
41
Points
98
I, recently, joined the site and have been posting, but have not formally introduced myself. I am a 48 year old female. I was born with epilepsy, but was not correctly diagnosed until I had a tonic-clonic at age 21. I, then, found out I also had a TC the day I was born. My complex partials and simple partials were assumed to be anxiety attacks during childhood and teen years b/c intense fear is my aura and a main symptom of my CPs. I always knew they were not anxiety attacks, but I had no idea what was wrong with me. I was never sent to a neurologist. That day in the ER at age 21 was the first time I spoke to a neurologist. I was greatly relieved to finally find out what was wrong with me b/c I had thought I was crazy and the only one to experience what I experienced all those years.

I have never been seizure-free on meds, but did not want to have surgery until recently. I decided to have surgery b/c my seizures started causing permanent memory damage which continued getting worse and I was told about laser ablation surgery. I had the surgery on my left temporal lobe in June 2015. I have not had a CP since surgery, but do continue to get auras.
 
Hi Music36,
Welcome to CWE. Just like you I have complex partial and aura sz. along with absence sz.
I started having sz. when I was 10 (53 now). I've had 2 surgeries to reduce my sz. but what I have found that works really great is vitamin B12 and as crazy as it sounds putting coconut oil on my skin because the coconut oil builds up keytones which in turn reduces my sz. I wish you only the best and May God Bless You!

Sue
 
Hi Music36, welcome to CWE. :hello:

... as crazy as it sounds putting coconut oil ...

TRIGGER WARNING

:paperbag:

(This is intended to be humorous reference to a wee bit of drama that occurred in the forums some time ago [before any of you were members I think])
 
Hey Music36, welcome to CWE!

Did the laser surgery put a halt to the memory issues the seizures were causing? Were there any side effects from the surgery itself?

Best,
Nakamova
 
Hello welcolm


I bit confused about coconut. Why Bernard put trigger there..
They say cow pee surppose help with Keaton's on news today...apparently it being sold in suppermarket s..not sure I could drink pint cow piss every day.I rather nail eyelids open look at sun
 
Thank you, everyone.

Nakamova,
Surgery made my memory issues worse, but it was not a big decline b/c it was already pretty bad. Memory issues from surgery has improved a little. It takes about two years for the brain to fully heal after surgery. We'll see what happens. It's different outcomes for different people. I do daily brain exercises on Lumosity.com, hoping that it may help. I do not regret having the surgery. It's worth it.
Laser surgery is less invasive than a traditional lobectomy, but it's still brain surgery. Different people have different experiences. I was in a lot of pain for the first few weeks after surgery. I stopped taking pain killers after the first week, though. I took steroids for about ten days. It took time to get my strength back. My left Hippocampus and Amygdala were removed. The Amygdala controls emotions. I was very emotional for several months. I felt like I was bipolar and had anxiety disorder for a few months. I cried a lot for no reason. I had felt like my personality changed. But, I knew I had to be patient b/c it takes a long time for the brain to heal. I was freaking out though for awhile. I was afraid of the emotional issues being permanent. But, I was back to my old self by 6 months after surgery, maybe sooner. Like I said, it's definitely worth it.
 
Last edited:
Welcome, Music36! Congratulations on the laser surgery. I hope you stay CP-free!
 
...
I bit confused about coconut. Why Bernard put trigger there..
...

It was a joke.

... I should explain what a "trigger warning" is.

... Like a "spoiler alert" in a movie review or a more specific version of the movie rating system, trigger warnings are intended to alert very sensitive people that some content might set off, or trigger, their post-traumatic stress disorder or simply deeply offend some people. ...

http://www.latimes.com/opinion/op-ed/la-oe-goldberg-trigger-warnings-20140520-column.html

We had a member many months ago that was borderline spamming the forum with advertisements for coconut oil. It caused a bit of drama.
 
Back
Top Bottom