New to Forum

[ln1]

Hello everyone,

In March 2015, I was diagnosed as having complex partial epilepsy, after having what I now understand to be a partial seizure that generalized. It turns out I've had E since I was a child. Since it didn't cause any problems in my day-to-day life as a child, my parents didn't know, and I did not start receiving treatment until now.

I've been on Keppra for about 10 months now, and it seems to be working well. I have noticed what appears to be simple partials every now and then, so when I meet with my neuro in a few weeks, I probably need to mention that to her.

I'm on the low end of Keppra (500 mg 2 times a day), so I understand she may want to increase it, but I'm curious if anyone else's doctor routinely and immediately increased dosage due to simple partials, or if there is some other type of protocol they follow when deciding to increase. Thank you.

 

[CQ:)]

Hi In1

Welcome to CWE, you'll find a great group of people here .
In my opinion each neurologist / epiologist is different in the way they treat their patients.

I have left temporal lobe epilepsy & had surgery in March 2011.
I have had 2 neurologists in my adult life, a neurologist in my town & a neurologist who works at the epilepsy clinic at the hospital where I had my surgery.

My neurologist in my home town used to always be adjusting my meds, either increasing them or adding on new meds. In late 2009 he said there wasn't much else he could do (he had added another med which was the 5th id been on since 2002) so suggested surgery & referred me to a epiologist in the city.

The neuro I see now & have seen since my surgery works along side the epiologist my original neuro referred me to. My current neuro doesn't like messing with my meds too much. We waited until I was 12 months seizure free after surgery before he reduced one of the 2 meds I was on then we did it slow. I started having funny feelings again in 2013 (2 years post surgery) & after adjusting meds a little bit & a VEEG in July last year my neuro confirmed my funny feelings are focal seizures (simple partials).

I saw my neuro in October last year, I am still having the focals but they have reduced alot. I thought my neuro would change meds again but he told me he wasn't adjusting my meds & as I had a lot of stress in my life at the time he didn't want to be messing with my meds so was keeping things as they were.

 

[ln1]

Hi In1

Welcome to CWE, you'll find a great group of people here .
In my opinion each neurologist / epiologist is different in the way they treat their patients.

I have left temporal lobe epilepsy & had surgery in March 2011.
I have had 2 neurologists in my adult life, a neurologist in my town & a neurologist who works at the epilepsy clinic at the hospital where I had my surgery.

My neurologist in my home town used to always be adjusting my meds, either increasing them or adding on new meds. In late 2009 he said there wasn't much else he could do (he had added another med which was the 5th id been on since 2002) so suggested surgery & referred me to a epiologist in the city.

The neuro I see now & have seen since my surgery works along side the epiologist my original neuro referred me to. My current neuro doesn't like messing with my meds too much. We waited until I was 12 months seizure free after surgery before he reduced one of the 2 meds I was on then we did it slow. I started having funny feelings again in 2013 (2 years post surgery) & after adjusting meds a little bit & a VEEG in July last year my neuro confirmed my funny feelings are focal seizures (simple partials).

I saw my neuro in October last year, I am still having the focals but they have reduced alot. I thought my neuro would change meds again but he told me he wasn't adjusting my meds & as I had a lot of stress in my life at the time he didn't want to be messing with my meds so was keeping things as they were.

Thank you for the quick reply, CQ. Thanks also for the welcome. When I go for my appt. next month, I will be seeing a new neuro. Unfortunately, the bedside manner of my first one did not quite fit my personality. It will be interesting to see the approach of the new one. Your response reinforces the idea of how important it is to have a solid relationship with one's neuro. Thanks again and I wish the best to you!

P.S. Do you mind explaining what your simple partials consist of? I've noticed things like a sudden chill in one part of my body (e.g. leg), twitches in my legs, arms, buttocks, stomach, and back, sudden feeling of fear, etc. Last month, my family and I went to a professional basketball game and when the home team came out on to the floor, they turned down the main lights and turned on some flashing lights to make a big deal about them coming out. As soon as they did that, I suddenly got anxious, had a sharp pain in the back of my head, and had to talk myself out of hyperventilating. I don't ever remember having photosensitivity issues, but once I calmed down, that was the first thing I thought about. From what you know, does that sound like it could have been a seizure?

 

[Nakamova]

Hi In1, welcome to CWE!

The symptoms you describe could be seizure-related, particularly the odd physical twitches and emotional sensations (like the sudden unexplained fear). You might find this link helpful: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures in describing some of the many different forms partial seizures can take. It can help to note your symptoms in a journal so you and your neuro can get look for patterns/ triggers, and track any changes in their frequency or duration.

 

[ln1]

Very helpful! Thanks so much, Nakamova.

 

[valeriedl]

I was diagnosed with epilepsy in 2003 and for the first few years my neuro did a lot with my meds. They tried different meds, increased the dosages, decreased them and added other meds. I'm still having seizures but it took awhile to figure out what worked best at decreasing the amount of seizures I was having, about 20 a month at first and now on average 7 a month. My seizures aren't nearly as bad as they were at first either.

I take a good bit of meds and my neuro wants to try to get me off of some them or decrease the dosage. There have been times that I've been ok with a med decreased but at other time when we do it I start to have more seizures and have to go back to the dosage that I was taking.

 

[CQ:)]

Do you mind explaining what your simple partials consist of? I've noticed things like a sudden chill in one part of my body (e.g. leg), twitches in my legs, arms, buttocks, stomach, and back, sudden feeling of fear, etc. Last month, my family and I went to a professional basketball game and when the home team came out on to the floor, they turned down the main lights and turned on some flashing lights to make a big deal about them coming out. As soon as they did that, I suddenly got anxious, had a sharp pain in the back of my head, and had to talk myself out of hyperventilating. I don't ever remember having photosensitivity issues, but once I calmed down, that was the first thing I thought about. From what you know, does that sound like it could have been a seizure?

Before my surgery I used to have auras, simple/complex partial.

The auras & simple partials I have now are different to what I had pre surgery.

Before surgery I used to get a dream like vision & the feeling that I needed to go to the toilet. Usually it was followed by a complex partial where I would either freeze or did weird things which I never remembered.

With the simple partials I have now, with my aura I have this feeling that something is going to happen then I hear a strange noise. I am aware of my surroundings & can do things as per normal but i cant write while I hear the noise or for a little while after the noise is gone as it will be gibberish.

With both the aura I used to get pre surgery & the one I get now I find it hard to describe & only remember what it is when I have the seizure.

 

[ln1]

I was diagnosed with epilepsy in 2003 and for the first few years my neuro did a lot with my meds. They tried different meds, increased the dosages, decreased them and added other meds. I'm still having seizures but it took awhile to figure out what worked best at decreasing the amount of seizures I was having, about 20 a month at first and now on average 7 a month. My seizures aren't nearly as bad as they were at first either.

I take a good bit of meds and my neuro wants to try to get me off of some them or decrease the dosage. There have been times that I've been ok with a med decreased but at other time when we do it I start to have more seizures and have to go back to the dosage that I was taking.

Thanks, Valeriedl. For me, it's good to know upfront that there is no black or white, cut and dry answer. With E, I will be learning how to take it one day at a time.

 

[ln1]

Before my surgery I used to have auras, simple/complex partial.

The auras & simple partials I have now are different to what I had pre surgery.

Before surgery I used to get a dream like vision & the feeling that I needed to go to the toilet. Usually it was followed by a complex partial where I would either freeze or did weird things which I never remembered.

With the simple partials I have now, with my aura I have this feeling that something is going to happen then I hear a strange noise. I am aware of my surroundings & can do things as per normal but i cant write while I hear the noise or for a little while after the noise is gone as it will be gibberish.

With both the aura I used to get pre surgery & the one I get now I find it hard to describe & only remember what it is when I have the seizure.

Thanks for sharing!

 

[AlohaBird]

Welcome, In1.

Another thing to consider is that the new symptoms you are experiencing could be a side effect of or a reaction to the medication. Increasing your dose might be counterproductive. Just another perspective to discuss with the doc when you see him/her.

 

[ln1]

Hmmm...I didn't think of that. Thanks, that's a great point!