Evolving Epilepsy!

[resaebiunne]

Hello, I'm new to this forum. I recently moved from Austin to Saint Petersburg, Florida to start a new job. Literally just a day after I moved to St. Pete, I started having generalized seizures that eventually landed me in the hospital just a few days later. I've had epilepsy since I've been about 12 years old, and typically I have a very brief absence seizure where my head will shake for a second and then everything will quickly go back to normal. At some point when I was younger, one of my doctors figured that my seizures weren't serious enough to warrant medication or to prevent me from being able to drive so I was taken off medication and that was that, until recently. The medication that I was on when I was younger was depakote, and typically it didn't seem to work very well from what I can remember. Fast forward to recently and I started to have generalized seizures. I'm not exactly sure what type of seizure it is, but they resulted in my shoulders and back being very sore and typically happened at night. Then, one day, about two weeks ago, I came home from a job that I had literally just started and had a major seizure. I live alone, as I have for the past 3.5 years. With this particular seizure I was unconscious for about 1.5 days before I was able to call out for help and someone in my apartment building called 911 for me. In addition to being unconscious, after I woke up I was psychotic and very confused (I thought I was in someone elses house at first). I suffer from hallucinations which I take Saphris (an antipsychotic medication) for. As it turns out, St. Pete has a major hospital (Bayfront Medical Center) about 2 blocks from where I live which includes an epilepsy center so I was in luck. I had wound up dislocating and fracturing my right shoulder from the seizure and this resulted in surgery. A neurologist in the ER has started me on Keppra at 2000mg per day, 500mgx2 tablets twice per day. So far, all seizure activity, including the absence seizures, have stopped, fortunately. This is good, as after two weeks of not working, I'm finally going back to work tomorrow.

So, I just thought I would introduce myself to you all and tell you of my recent bouts of epileptic activity. It really is very strange how all of this has happened in the way that it has, and it really does seem like answers are hard to find. Hopefully the medication will continue to do its job so I don't have to worry about more hospital visits.

 

[Bidwell]

How wonderful that you are alive and how AWFUL that you had to go through all that.I hope you can get yourself linked up with a epileptologist close by who has your best interests at heart. I also hope that getting back to work is easy on you.
Answers really ARE hard to find.You are right about that. But there are many people using this site who are interested in looking for answers and also knowledgeable, so I hope you keep posting because some of the answers you need might surface. In the meantime there are so many interesting points of view. So keep posting. And take good care of yourself.
My best, B

 

[AlohaBird]

Yikes! The worst I've ever gotten is a munched tongue and some sore muscles. You poor shoulder.
I hope things settle down for you now. This is a great place to find answers. I wish it had been around when my seizures started.

Welcome.

 

[Belinda5000]

Hello resaeblunne
welcome to CWE and I'm sorry you have seizures or anyone has seizures.

I've had epilepsy over 50 years .In all the years I've had epilepsy I've never been out of 1 1/2 days. I've just slept like crazy after I've gone status before is all.
Epilepsy can get worse over time because mine did as I got older after I had a failed Right temporal lobectomy in 1982.

CWE is great for support for anyone that needs doesn't matter how long you have had epilepsy.
If you need it just ask for it

Belinda5000:hugs:

 

[Pinkattitude]

Wow, Resaebiunne! I agree with others - what a great place to land so close to a good hospital with an E center! So sorry for the shoulder, too - hope that won't affect your ability to work much.

Welcome, and please do keep us posted!

 

[Nakamova]

Hi resaebiunne, and welcome to CWE!

I've had two shoulder surgeries due to seizure-related damage. No fun. I hope things settle down for you soon and that you enjoy St. Pete's.

 

[marika853]

Welcome fellow Floridian!
Sorry to hear about all your troubles but glad that you are so close to excellent hospital. Hope that you can get on with your plans.
Good Luck!
M

 

[resaebiunne]

Thanks for the welcome, all! It has been my first week back at work and so far it has not been a big deal with the shoulder being out. I'm an engineer so most of my work is computer based.

I had an appointment with my neurologist on Tuesday. I learned from my mom that my "new" seizures are tonic clonic seizures. So far, I have not had another seizure since being put on Keppra. Let's hope it stays that way!

 

[ATWinellLife]

@resaebiunne I too was diagnosed with Epilepsy as a child and only had partial complex seizures until later in life when I started having tonic clonics like yourself. The big factor that changes things for me is hormones and this can be true for women and men. They are called Catamenial Seizures. I too take Keppra and also Zonisamide for the Tonic Clonic seizures because the Keppra alone wasn't enough for me. After I had my twins in 2012 things got worse and never returned to a 'normal' so we added a Deep Brain Stimulator. So far so good but I'm encouraged by your story that the Keppra is enough and that you are back to work. Keeping you in my prayers that your shoulder gets better soon!


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[Emerald]

I'm so sorry that you have to go through this! I am 15 and was just diagnosed in May of this year with simple partial seizures. They have been steadily getting worse regardless of meds. The modified Atkins diet has been helpful because it's reduced the number of seizures I've been having. My seizures are weird because they make me stiff and sore, but I can remember what happened, and still do stuff. Sometimes I get confused though, so I think I am also having some other type of seizure. I have had 2 24-48 hr EEGs, but all I have been told is simple partial. I go back to see the neuro in a couple weeks, so I'm curious if they are going to want to have another done. I'll just have to wait and see! Hope you are doing better! Hang in there!