My Epilepsy is evolving? Any similar experiences?

[Hopper]

So, it seems by diagnosis has been wrong for 13 years. I was diagnosed complex partial seizures, but my new doctor told me I have simple partial motor seizures.

So, before, 10 years ago, my seizures were like this: myoclonic jerks of the corners of my lips, my consciousness was clouded (I can talk, but I don't know what I was saying) and it lasted a couple of hours.

Two months ago, I have had different seizure, just myoclonic jerks without clouded consciousness. They last at least 30 min until I take 10mg diazepine

Idk what to think, every doctor I see says different things. Idk how can my seizures be simple partial when those are extremely short, and my doctor said they don't respond to diazepine, while my seizures respond really well to diazepine, and he said that simple pratials don't respond well to two medications, while I was taking Depakine+Lamictal for 8 years without seizures....

I am really confused, and I would like some opinion on this. Did you ever have your seizures change?

 

[Porkette]

Hi Hopper,
My advice to you is to see a Epileptologist these Drs. specialize in E. Just like you I have complex partial seizures, and simple partial seizures along with absence seizures. I also had myoclonic seizures until I went on vimpat and then they stopped.
Maybe you need to go into the hospital for a few days and have tests done. My Dr. found out that I started out having seizures on the right temporal lobe but I had so many over the yrs. that it caused damage to spread to the frontal and left temporal lobe and this in turn has caused so many different types of seizures. What really has helped me a lot is the medical marijuana (CBD) I was surprised when my Dr. wanted me to go on it but it has reduced the seizures a lot and my complex partial seizures seldom ever happen anymore.
What's concerning me is your seizures are lasting longer than usual. It almost sounds like a status seizure if they last over 10 min. Either you seizure med isn't strong enough for you or you need to try a different med. Think about trying the medical marijuana and see if that helps you. I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

1. Seizures can change over time.

2. Both Simple Partials and Complex Partials generally last only 1 to two minutes. So what you've been experiencing could be partials that last longer than the average, or they could be simple partials that are generalizing into complex partials, or they could be partials that are coming and going over the course of 30 minutes.

3. The symptoms you describe could be SPs or CPs. The symptoms tend to overlap, but CPs are more likely to involve a fuller loss of awareness, which yours don't. The doc may be right, yours sound a bit like Simple Partial Seizures, with both motor and psychic components:
From Epilepsy.com, Simple Partial Seizures: "Motor Seizures: These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. The movements may spread, either staying on one side of the body or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements.
Psychic seizures: These seizures change how people think, feel, or experience things.
They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language."

As for what meds different kinds of seizures respond to, your doc is incorrect. Both Simple and Complex Partial Seizures can definitely be treated by Diazepine, by Lamictal and/or by Depakine.

 

[Cint]

Did you ever have your seizures change?

My seizures definitely changed over the years. They started out as SP, and slowly went into CP then graduated to TC. When I was first experiencing the Simple Partial seizures, I didn't realize at the time I was really having a seizure. When they went into a Complex Partial, I definitely knew something was wrong. I went to the family dr. and he diagnosed it as hypoglycemia. What a disaster that was!
A few months later I had my first Tonic/Clonic seizure on my way out of the shower and ended up with 1st and 2nd degree burns because of it. So like Porkette suggested, get to an Epileptologist ASAP!! And not all medications work for all folks. It's an individual thing. Plus medical marijuana doesn't necessarily control seizures, either. Even tho "pot" is legal in my state, even my epileptologist has NEVER suggested that I try the medical CBD. And they are experimenting with it at the University Hospital where my dr. works.

 

[CQ:)]

My seizures have changed over the years

- As a baby / toddler I had tonic clonics (from 9 months - 3 years). No seizures during my child hood & school years

- My seizures returned in 2002 when I was 24 & I had simple/complex partials. My aura (simple partial) was a dream like vision & the feeling that I needed to the bathroom. With the complex partials I used to do odd things but didn't remember anything.
My neurologist tried me on a variety of meds, they controlled the tonic clonics but none completely controlled the partials so I had surgery in 2011.

- I started having 'funny feelings' again in 2013, my neuro adjusted my meds & last year they did a VEEG. The VEEG confirmed that I am having focal seizures but I just describe them as similar to simple partial. I still get an aura but it's different, this time my aura is a strange noise in my ears. Usually if I try to write either during or after a seizure it will be gibberish.
I've noticed in the last couple of months that my seizures are changing a little again. I'm due to go see my neuro next Monday so will be discussing that with him

 

[Frink]

Yes my seizures have changed over the years. In the first couple years it was just a weird falling/nausea sensation with a creepy deja vu feeling.

After about 6 years of this I had an experience where I got the nausea, thought I would throw up, ran into the bathroom to puke but passed out instead. When I woke up I could not move or talk or do anything, I could see and hear but I had no voluntary movement for about 1.5 hours.

10 - 12 years later I had the nausea/ deja vu feeling in the shower and it changed into a smell, then taste, then video/dream and I do not remember what happens after, I was exhausted for the rest of the day.

A few years (4-7) later I added loss of consciousness to the mix at regular intervals.

So I started with simple partials that evolved into complex partials with impaired consciousness which evolved into complex partials with total loss of consciousness.

 

[seagull]

Get medical action if change as nak says it can change get older

 

[Sabbo]

Seizures can change over time. I've had Simple Partials all my life. They weren't diagnosed as SPs until I had Tonic Clonics when I was 14 (none of those since then). I had an SP during an EEG, which allowed them to diagnose it. About 16 years ago I suddenly began to have Complex Partial seizures. Those occur w/o any aura, & unless I have a witness or do something to myself or my surroundings, I'm not even aware that one occurred.

 

[Hopper]

Thanks everyone

I now have a better picture of what might happen. You were great, as always

I have seen an epileptologist today. He has given me Kepra, 250+0+250mg for the start. I must do fMRI, PET scan and some type of EEG where electrodes go through the nose. He wants to locate the part of my brain where the seizure starts from, so I can have a surgery which will stop the seizures completely

 

[Cint]

He wants to locate the part of my brain where the seizure starts from, so I can have a surgery which will stop the seizures completely

Before surgery, make sure you get the FACTS. Brain surgery doesn't necessarily STOP the seizures completely. For some, it only slows them down. For others it does nothing.

Read about it all here:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery

Good Luck!!

 

[CQ:)]

Good luck with the tests Hopper

As Cint said please make sure you do research in surgery especially the type of surgery they are looking at for you. There are many tests involved to even see if you are a candidate. The surgery is NO WAY a cure but another treatment to help control the seizures better.