Hello, new here :)

[Rhunya]

Hi there, decided to join and say hi~

I was diagnosed with simple partial seizures in January this year, have been having them since October of last year. Had 43 so far this year (yay tracking to establish possible patterns!), and am on Lamictal XR, 500mg. Still not under control yet, having about 4-5 seizures a month, and have been on the meds since January.
Could be worse, I know, if I gotta have seizures might as well just have simple partial ones. Still really annoying not being able to drive yet. :/

Anybody else with simple partials, what are yours like? I get a wave of deja vu, jamais vu, throat closes up, heart rate goes up, get kinda dizzy most of the time, and I want to just curl up in bed till it goes away. -_- I already know I can drive through them, done it before I was diagnosed.

How long did it take other people to get theirs completely under control? I feel like it should have stopped by now... :c

 

[Nakamova]

Hi Rhunya, welcome to CWE!

I don't get simple partials, though plenty of CWE members do (and will chime in I'm sure). I know that with any kind of epilepsy it can be an unpredictable path to seizure control, since everyone responds differently to treatment. Lamictal may just be the wrong med for you. There are certainly other meds out there to consider, as well as alternative approaches like the Modified Atkins Diet or neurofeedback.

You might want to check out this link about simple partials:
http://www.coping-with-epilepsy.com/forums/f22/invaluable-article-simple-partials-auras-13324/

Best,
Nakamova

 

[arnie]

Hello and welcome! I had my first (witnessed) grand mal sz about 32 years ago, but I have probably been having partials for many of my 55 years. Since I started taking meds back in 1982 I've only had 4 other GTC seizures (generalized tonic-clonic; the more proper term for grand mal) but have had literally thousands of simple partials. Mine last for maybe 30 seconds, I get a strange feeling in my stomach which spreads to the rest of my body, get pale and sweaty sometimes, and many times I will smack my lips and swallow a lot. Although I am conscious the whole time, and have driven and ridden my bicycle through the seizures, I am somehow never aware of the lip-smacking. It's really strange. I always have to ask my wife or someone if I was doing that. If I have a few in one day I will be very tired and washed out for a while. Maybe even a day or two.

That's how they feel to me. As for getting them under control I don't have happy news for you about that from my experience. While I'm sure that many people get good seizure control I continue to have at least 200 to 300 seizures per year, and maybe more some years. I keep track of when I have them, but after 5 or 6 years I quit trying to figure out a pattern or a precipitating event (trigger), because I couldn't find anything. I also believe that I probably have at least 1000 subclinical seizures a year, and my neurologist agrees with me. You can google subclinical for more info on that. I was on Dilantin for about 15 years and have been on Lamictal since then. I have also tried Keppra, Zonegran and Trileptal but the side-effects were awful so I didn't take those for long. I'm now thinking about getting a VNS (vagus nerve stimulator) implanted and I will be talking to my neurologist about that in a couple of weeks. Again, you can google that, but you don't need to think about a vns for a long while, because it is really only a consideration if a number of medication trials have failed to give adequate control.

The good news is I have continued to lead a very normal and active life in spite of the seizures, but I am getting tired of them and also worry about the long-term effects of both the seizures and the meds, so I think it's time for something different. I hope all that helped you some. Stay in touch with us hear for help and support and info. All the best to you!

 

[N Sperlo]

Hi there, decided to join and say hi~

Could be worse, I know, if I gotta have seizures might as well just have simple partial ones. Still really annoying not being able to drive yet. :/

Anybody else with simple partials, what are yours like? I get a wave of deja vu, jamais vu, throat closes up, heart rate goes up, get kinda dizzy most of the time, and I want to just curl up in bed till it goes away. -_- I already know I can drive through them, done it before I was diagnosed.

How long did it take other people to get theirs completely under control? I feel like it should have stopped by now... :c

Been there done that. Yep. Deja vu and jamais vu. In my sleep I've one some pretty crazy things, too. I had to move any loaded or sharp weapons out of the bedroom.

I've done the curl up thing. I woke up in a completely different direction and that was the only case of jamais vu I've ever had.

Whatever you do, keep following the doctors directions and keep in mind that things can change. I stopped taking my Keppra and had a tonic clonic seizure. I've had a few, I think. My wife says two. All cleared up now.

Good luck. It may take some time to get the medicine working properly, but I've been lucky with my doctors.

 

[Rhunya]

You might want to check out this link about simple partials:
-link-

Best,
Nakamova

Oh cool, that was a neat read I've tried to be really descriptive with my neurologist but it does seem to be hard to completely perfectly describe everything. When you take a step back from it the episodes really are incredibly fascinating. Frustrating to experience, but utterly incredibly fascinating.
Sometimes I get the strongest feeling that I've dreamed about what's happenning before, or thinking about a piece of a dream will trigger one. Staring at the mirror in the morning seems to be the biggest trigger I have. Annoying for washing your face. xD
Another really weird feeling I'll get is, mostly if I'm in a dark room, I *know* that the doors don't go where they should. I'm convinced the floorplan in the next room is completely different. Or when I'm laying in bed I'll be completely sure I'm back in my old room at my parents' house. So weird.

It's interesting how other peoples' episodes manifest and how different they can be.

Also left out of my original post, prolly doesn't matter, but I'm 24, girl.

 

[MAB]

Hi Rhunya. I'm new here too, I joined this month. I have been having partial seizures for 3 1/2 years. I think they started the day after I had a small stroke but the neurologist just DX'ed me earlier this month based on symptoms. I took Keppra for 4 days and had an allergic reaction so now I am on 25 mg. lamotrigine, gradually increasing the dose.

My partials last a long time, hours or days, they usually involve a bad odor, occasionally my left arm and/or left leg will feel weak. When I first had the partials the weak arm and leg would really scare me because that was the same symptoms I had when I had the stroke. The worst part of the seizure is the exhaustion that comes with them. More occasionally I will have a feeling that I am too close to the edge of the bed and become afraid I will fall off the bed. Even though I live in Ohio and I think doctors are required to report seizures to the state, my doctor didn't say anything about it. The seizures have never affected my driving but I no longer want to drive long distances.

I'm 57 year old female.

No one could ever tell me why I had the stroke since I have no risk factors associated with a stroke. The neurologist I saw this month wanted to know more so she ordered an ech cardiogram that shows I have a hole in my heart. Now I have to see a cardiologist.

 

[Rhunya]

Agh, that sounds terrible. D:
I've had an MRI, but nothing showed up at all. EEG showed some slight spikes that confirmed the epilepsy diagnosis though.

I wanna know why epilepsy seems to appear out of thin air sometimes. No family history that I'm aware of, no traumatic events that I can recall (other than faceplanting the headboard of the bed when I was 4, ha). Though, I do remember when I was about 5 or 6, we moved to the house my parents are currently in, and I remember complaining that the house was too big and made me dizzy/nauseous. I wonder if that was some kind of precursor/warning sign or something. And why it waited till now to raise its head, lul.

 

[Cint]

I wanna know why epilepsy seems to appear out of thin air sometimes. No family history that I'm aware of, no traumatic events that I can recall

Me too! I've had E for over 30 years now (they started when I was 22) and have experienced CP and TC seizures. I'm the only one in my family that has it and I didn't have any traumatic events or meningitis, encephalitis, etc. I've been on numerous meds, had a Left Temporal Lobectomy and now have the Vagus Nerve Stimulator, and still have an occasional seizure.

So in answer to your question, the majority of folks get their seizures controlled within trying one or two medications. For a small percentage of folks, about one-third of patients, seizures are never fully controlled. This is called refractory epilepsy. That is where I am.

 

[N Sperlo]

For a small percentage of folks, about one-third of patients, seizures are never fully controlled. This is called refractory epilepsy. That is where I am.

For those of us that are fortunate enough, even though we have no clue why or what the seizures are, they are fully controlled. Sometimes our doctors modify what we are on when symptoms continue. The battle with medicine side effects can be a pain in the ass, but life goes on.

Just like you, my MRI showed nothing and some EEG behavior showed the same as yours. Now both show nothing even if I were to have a simple partial.

Stay positive. :cowboy: <-- (I don't know what the cowboy has to do with anything, but I thought he was cool.)

 

[MAB]

Hi there, decided to join and say hi~

I was diagnosed with simple partial seizures in January this year, have been having them since October of last year. Had 43 so far this year (yay tracking to establish possible patterns!), and am on Lamictal XR, 500mg. Still not under control yet, having about 4-5 seizures a month, and have been on the meds since January.
Could be worse, I know, if I gotta have seizures might as well just have simple partial ones. Still really annoying not being able to drive yet. :/

Anybody else with simple partials, what are yours like? I get a wave of deja vu, jamais vu, throat closes up, heart rate goes up, get kinda dizzy most of the time, and I want to just curl up in bed till it goes away. -_- I already know I can drive through them, done it before I was diagnosed.

How long did it take other people to get theirs completely under control? I feel like it should have stopped by now... :c

Wow, I have no idea how many seizures I have had. I'm not even sure I could track them. I am not sure if I am having lots of short seizures, very close together or if it is just a long lasting seizure. Can one seizure last several days or is it more likely that I have periods where I just have short, frequent seizures? Since they are partial seizures I am able to function through them, even when I just want to go to bed and pull the covers over my head.

 

[Rhunya]

Wow, I have no idea how many seizures I have had. I'm not even sure I could track them. I am not sure if I am having lots of short seizures, very close together or if it is just a long lasting seizure. Can one seizure last several days or is it more likely that I have periods where I just have short, frequent seizures? Since they are partial seizures I am able to function through them, even when I just want to go to bed and pull the covers over my head.

I dunno I've see some stuff online that says the partial seizures/auras can last for a day or more That would be so terrible. ;-; How bad are your partials?

 

[MAB]

The worst part of them for me is the exhaustion that comes with them and the worry that they will change to a different type of seizure. The partials don't usually effect my ability to function even if I feel like crap.

I am actually somewhat relieved to know they are seizures. At times thought I had mental issues because I would smell things that no one else did. It took me a long time to tell my doctor about the odors. I would complain every time I saw her about the exhaustion but until I told her about the odors, no one ever got the connection to seizures.

 

[mejohn1]

Yours sound closer to what I've had than anyone else. E hits us all differently and for some of you out there, my heart goes out to you. I, like Sperlo, have had mine under control but it wasn't always that way. I've had them for 27 years, always partials, where I would get all weirded out ("aura") which feels like I'm seeing and hearing myself in 3rd person. Like I'm just a fraction outside of myself. My voice echo's in my head too. I've never had smells but have always had a ton of deja vu, even as a kid. My partials always have an aura, tho my aura's don't always have partials. The partials are my eyes and head jerking to the left, always left, for around 5-20 seconds, then done. Takes me a minute to shake the cobwebs out then I'm wiped out tired but otherwise fine. I had one tonic clonic, in May of this year, and it took me out! Must have just dropped like a stone. When I came to my nose was broke, had chewed my tongue up pretty bad, and blew all the blood vessels out around my eyes. Have no idea how long I laid on there but after driving home from the er I slept for ever. Neuro now has me on 2 different meds, Keppra and Lamictal, and it seems to be working. Keppra alone didn't cut it and I was a royal ass to people. I hope you find some relief from this site, it has a ton of good info and people. Best of luck and never stop asking questions!