Just diagnosed with Partial Complex seizures

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Ok sorry, just reading some more posts here. The palpitations are an epilepsy thing but not a worry (unless of course there is some other heart condition) but yes sometimes people with epilepsy just have them as part of an aurora. You should look epilepsy and aurora up. Ok also as to the type of epilepsy. Forget the words for a sec. The EEG shows your brain waves. In someone having a seizure they spike and wave down (ie not just a wave) so they have looked at that to come up with complex seizures. Now as for the epilepsy type complex is a focal seizure like partial but more fuzzy but it is not an absence seizure which is generalised (whole of brain).
 
I'm so sorry you lost your husband, Marika! We've been married about the same amount of time you were. I am so thankful I have him. I admire how strong you are with what you are going through. Please keep me posted with what the EEG results are. It helps so much to talk about this!
Peridot
 
You can be having seizures and never remember your having sz's.I just to have seizures all the times and remember abut other people would see me have them and I'd never remember it.All the years I've had epilepsy I've never gone not even 6 month seizure free total. The FDA doesn't care I'm refractory there isn't enough money in it for them.
 
Just been diagnosed

I have just been diagnosed with Complex Partial Seizures after years of suffering them. Having said that, they have worsened over the past couple of years. My husband has to tell me when I've had one because I don't know at the time. But afterwards, I feel so ill like I have a tight strap around my head and it can carry on for the rest of the day, it is so debilitating. Also, I am embarrassed when I have am told that I've had a seizure, I don't really know why. Perhaps it's because I have no control whatsoever. When I have these episodes, my husband tells me that I am totally blank and sometimes start to tidy things up - I even did it in a restaurant once. I am on Lamotrigene at the moment.
 
Hey jade, welcome to CWE! You're in good company.
Feel free to introduce yourself in The Foyer. :)
 
That sounds like me.. "memory, fuzzy brain when trying to concertrate on people's speech, trouble finding words or finishing a sentence". Also, thanks for telling me that it's possible to have epilepsy without having "drop down" seizures. I didn't know that word for it.

I really am worried about what to do. If I insist I don't want to take medicine for it, it seems like I'll keep having these problems and they are getting worse. And the neurologist did say they could turn into "drop down" ones. I'm terrified of having a really bad experience again. It wasn't just nasty side effects. It disabled me completely for almost 2 straight months. I couldn't teach, I couldn't eat, I lost almost 20 pounds in less than 8 weeks, I became mentally ill for that period of time. It traumatized me a little bit and my husband is dead set against me going on meds again too. So I don't actually have his support and I need it. The only thing that calms me is thinking that somehow God can make this work. No matter how hard it seems, he can get me thru it if I just trust. It's hard for me though.

Well, thanks for listening. Write back if you want, ok? I really appreciate the friendship!
Peridot
 
Hi Jade!
Thanks so much for writing! How often do you have seizures, if you don't mind my asking? Does the medicine work well for you? Do you have any side effects?

I'm so sorry that you feel embarrassed. I'm starting to get a little embarrassed about going blank. I have these meetings I go to and when it's my turn to speak, I start and after a few sentences I suddenly stop, panic and have no idea what I was going to say. The whole room is real quiet and everyone's just looking at me. I say, "sorry, I went blank." And then someone else talks. So far no one's asked me about it yet so maybe it's a bigger deal for me than them. I'm hoping people don't notice as much as I think they do. And luckily the meetings aren't related to my job or anything.

Thanks so much!
Peridot
 
Hi Peridot, sorry but I've only just realised that you had replied. I don't look my emails as often as I should and it notified me of your reply on 22nd Nov. I've recently had two seizures in a week and they were really bad ones, putting me out for the whole day. When they first started quite a few years ago, I felt them coming on and going away; I always felt sick afterwards but the result was that they didn't leave me feeling so ill like they do now. They have definitely worsened over the years. I had a brain scan about 4 years ago and it revealed that I had had mini strokes - whether that had anything to do with the seizures getting worse of late I don't know. I am going to have an EEG on 16th Dec and will be relieved to find out what is going on. I am on lamotrigine and I don't have side effects with them.
 
I'm so glad you wrote me back. I get so excited when someone from this forum writes me. I'm so sorry you're having worse seizures! I wish stem cell therapy or something else could help people with seizures. It's like people have to suffer in silence. But it's so good that your medicine doesn't give you side effects! Yay!

I will see the neurologist on Jan. 4. I'm not having that much trouble now. So I'm not sure what will happen. I have to have my shoulder replaced soon. Possibly this month. I'm having an allergy test this Wednesday to make sure I'm not allergic to metals. As soon as we find out, the Dr. Will set a date for the surgery. Right now that's all I can think about.

Let me know what happens with your EEG! I hope everything turns out for the best!

Take care
Peridot
 
Before I had epilepsy I always thought a 'seizure' was when you were on the floor and your whole body started shaking like crazy. I had no idea there were so many different types and I really didn't know about that until I joined this web site, I've learned a lot here.

My ears ring all of the time. But all of a sudden the ringing gets loud for awhile, almost like someone turned up the volume suddenly.
Out of the blue, I'll feel fear or sudden sadness for no reason.
I sometimes get goosebumps - skin crawly feeling - on my cheek.
I can be somewhere and things look weird or unfamiliar to me. Then that feeling goes away.
Sometimes when people talk I can't understand what they are saying. I know the words, but I can't understand the implication.

These sound like things that I have during a simple partial. I'll get tingling in my lips and fingers and be confused about what's going on around me. I have ringing in my ears but I don't know if it's seizure or med related because it is a side effect of one of the meds I'm on.

I have a HORRIBLE time remembering words. I know exactly what I want to say but just can't get the word out. My father-in-law was bringing me home a while ago and was having trouble finding my drive way because it was dark outside. I told him it was "right in front of the really tall thing", just couldn't think of the word telephone pole.

Have you always been nervous when you talk in front of people or is this something new? Stress can be a seizure trigger, I don't know if you could be starting to have one or not, and it could be one of the reasons you have are having trouble.

Keeping a diary is a very good thing to do. Try to write down what you did during the seizure too, not just that you had one. This way when you see the neuro you have the answers to the questions he might ask.

Meds aren't fun to take! When I was first diagnosed I had to try SEVERAL different ones before I found out which ones worked best for me. Some may have helped with my seizures but I had to go off of them and try something else because I couldn't deal with the side effects. I know this has happened with many people. My grandma started falling out of bed at night when she was in her 70's and the dr found out she was having seizures in her sleep. He put her on Keppra. One side effect that some people get from Keppra is Keprage, it makes you very angry. She started swearing (which she never did, I think the worst word I ever herd her say was shoot) and yelling at my grandfather constantly. The dr switched her to something else and I don't believe she had any major side effects from it.

Meds can react differently with everyone. Some people my have problems with the med and other's don't. It may take a month or longer for your body to get used to the med and the side effects my stop after that, this has happened with me. Some people are able to use their diet or other things to help with their seizures but others can't and need to take meds.

I hope the appt with your neruo goes well.
 
Hi Peridot!

I was just reading this thread and we have much in common. Your simple partials are very similar to mine, especially the inability to understand what's being said, trouble coming up with words, going blank, etc. I also lose the ability to speak, and if I'm speaking when one starts only gibberish comes out of my mouth.
My seizures started when I was 17 and I'm 57 now. I was controlled on Dilantin (or so I thought) all that time but in actuality I was having simple partials all along. I hadn't seen a neurologist for a long while because I thought I was "controlled" but when I started having the side effects of long term Dilantin use, like elevated liver enzymes, ataxia and osteopenia, it was decided that it was time for me to see a neurologist. She confirmed the symptoms I was experiencing were from the Dilantin; she even went so far as to refer to Dilantin as a "dinosaur" and assured me that there were many new and better drugs with fewer side effects. She was partly right in that there were newer drugs but unfortunately they do have many side effects, as I'm sure you've found out from your own experiences and from this excellent forum. I resisted changing meds because I was fearful of not being controlled but eventually I agreed to the medication change and started on Keppra XR. I started having more intense simple partials and told my neurologist's NP and she assured me everything was fine, until one of those simple partials generalized to a full blown, fall down, tongue biting, scare-the-hell out of my husband seizure. I was bumped up to 3000 mg of Keppra and promptly changed neurologists. In the meantime I also had some complex partials. The increased dose of Keppra literally turned me into a zombie! After seeing the new neurologist, who is also an epileptologist, she added different meds, adjusted dosages; at this time I'm taking Keppra XR 1500 mg along with lamotrigine 100 mg twice a day. I still have the simple partials and the occasional complex partial, but so far they haven't generalized for several months. Over time the side effects have decreased, but just this past Tuesday my Keppra dose lowered due to a very high blood level. The level was checked due to the fact that my hair started falling out at a rapid rate. (Insert loud gasp here). It seem my meds are continuously being adjusted which is very frustrating, to say the least.
I wish you good luck in this difficult journey as well as your upcoming surgery. It can, and usually does, take a long time to hit on the right med combinations and dosages. Sometimes you have to kiss a lot of frogs before finding the right neurologist. Most downplay the side effects of the medications. You have to do the research and be your own advocate. Hang in there, stay persistent about your condition and concerns,and remember it can take quite some time to achieve control.

Welcome to CWE!

Cindy
 
Sometimes you have to kiss a lot of frogs before finding the right neurologist.
Ain't that the truth!
 
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