Hi, I'm TongueTied

[TongueTied]

Hey guys and gals, I'm a new kid. My names Naomi and I'm 19yrs old. I live at home because of multiple disabilities and free rent. When I was 4months old I contracted viral encephalitis which caused me brain damage, leaving me with Cerebral Palsy (Spastic Hemiplegia) and Epilepsy.
The cerebral palsy affects the left side of my body, making it difficult to keep my balance (I use a forearm crutch on good days, wheelchair on the bad days) and grasp things, along with talking. It's uncertain if my epilepsy is genetic (I've got a mutation of SCN1A and a de novo mutation of PCDH19) or if it's directly from the brain damage. I have atonic, tonic, tonic-clonic and absence seizures which are mostly uncontrolled at the moment and often cluster or go status.
I'm looking forward to learning new things, offering support and meeting new people within this group. Thanks

 

[Fedup]

TongueTied

You are very welcome to CWE take a look around, have a cuppa and help us to help you.

 

[masterjen]

Welcome to CWE TongueTied.
Lots of great people here to feel free to join in a conversation (thread) or start one on your own. See you around!

 

[Nakamova]

Hi TongueTied, welcome to CWE!

Pleased to meet you.

 

[Ruth]

Welcome TongueTied,

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

What medicines are you on?

My epilepsy is inherited. I don't know what genes they are, though.

I have several types of epilepsy and Parkinson's Disease and Diabetes Type 2.

 

[TongueTied]

Thanks guys!
I'm currently on Epilim (2000mg/day), Keppra (3000mg/day) and Clonazepam (6.5mg/day), and unfortunately it's not working.

 

[Jeannie2249]

Welcome TongueTied. I know what it's like to keep going in to the doctor's office and they keep increasing the meds or switching the meds. I always used to become so frustrated and feel like a guinea pig. But after a couple years I came to realize they can't just fix me(darn ) and won't know what will work for me unless they try different meds. It's been almost a couple years and my seizures are still not completely under control but it's slowly getting there. I hope your meds start working soon and I'll be praying for you.

 

[Ruth]

It takes time for the medicines to start working. When I was younger, we called it the merry-go-round. We just kept changing. They finally got it right with me. There is still hope.

Just be patient. Remember, the doctor wants to get it right the first time, too. It makes his/her job easier.

 

[TongueTied]

I totally understand it, it's definitely trial and error. But after 20 years you'd think they'd get it right or under some sort of control. I've been on the same AEDs for the past 3 years or so, and I've been on the MAD (similar to keto) for the last 18months. There hasn't been any real improvement, I'm still having multiple types of seizures many times throughout the day. It's disheartening that I go into status every 2-3 weeks and that clusters can go over days. I'm sure i'lol get there sooner or later, it's just until then it's trial and error.

 

[Belinda5000]

Hello Naomi,
Welcome to CWE.
I'm refractory and I've had epilepsy since I was 2 years I'm 53 years old.
I've had brain surgery in 1982, the VNS in 2001 which didn't helped for a little while, I've been on 23 or more drugs.I've been to hell and back with my epilepsy and also have had my share of status movements. I started in the late 60's with some awful drugs such as mysoline and when there were no new epilepsy drugs around for 15 years in the 70's and 80's.I've never driven because of my seizures.I have Tonic-clonic-partials, absence,generalized sz's.

 

[MichaelJO7]

Hi Naomi. I have Myotonic Muscular Dystrophy, and accompanying Epilepsy. Like you, on my good days, I use walking sticks, or a cane and lose my balance quite regularly; on bad days I am in a wheelchair. I am relatively new here (started in May), and have found the site useful and informative, and, to a degree comforting.

 

[Jeannie2249]

I totally understand it, it's definitely trial and error. But after 20 years you'd think they'd get it right or under some sort of control. I've been on the same AEDs for the past 3 years or so, and I've been on the MAD (similar to keto) for the last 18months. There hasn't been any real improvement, I'm still having multiple types of seizures many times throughout the day. It's disheartening that I go into status every 2-3 weeks and that clusters can go over days. I'm sure i'lol get there sooner or later, it's just until then it's trial and error.

20 years is a long time to be without seizure control. I've had epilepsy since I was 4 yrs old but thank God I was seizure free for a couple years. I had a good couple years through elementary and middle school but as I got older I started becoming tolerant to meds and it became, like you said, trial and error. I've been suspended from college programs and lost lots of opportunities because of my epilepsy but I always believe things happen for a reason. I wouldn't have a great husband, good job, and nice life if it wasn't for the bumps I had to climb over. I'm still trying to get my seizures under control and I know it can be disheartening. Since this has been happening for the past 3 years and no improvement on the keto will your doctor try something new? I've been on Carbamazepine for many years. It started becoming ineffective and I was having multiple seizures. I kept a seizure diary and told him and then he finally started adding on new meds. Now I take Topamax and Keppra with the carbamazepine. I still have catamenial seizures but I'm working on those. Not fully controlled but slowly getting there.