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Sandie

Sandie

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Not a flash day for me today in the 'E' department. Olfactory hallucinations on and off all day, continually stumbling over my words, stuttering and sounding like the village idiot and a 'doughy 'brain. Funny though I haven't had any absence seizures. I know I am going to end up with a huge headache when it all settles down. Oh well, most of you guys are far worse off so I really shouldn't complain.
Creepy skin too which I really don't like but I guess I should be used to it by now. What I really wonder is if I have been misdiagnosed. I'm trying to learn more about it but I wonder If I am in the simple partial more than the complex partial category. I find that most of you people with complex partials do have some sort of body jerks which I don't have. Your opinions please?
 
If you're fully conscious throughout, can say what you mean to (even with some stuttering and articulation problems), and can remember everything that happens, then chances are it's simple partial rather than complex partial. Muscle twitching and jerking can also be part of a simple partial though, so that doesn't necessarily mark the difference between Simple and Complex Partials. I find this link really helpful for describing all the different kinds of simple partials: http://www.epilepsy.com/epilepsy/seizure_simplepartial

The main marker of a Complex Partial is impaired awareness often with resulting automatic behaviors (like lip-smacking, grunting or picking at clothes, irrational or unrecognizable speech). The person can appears like a sleepwalker -- blank stare, but still moving in different ways. There can be muscle jerking but it tends to be more along the lines of bicycling or thrusting motions with the legs.
 
:agree: I mostly have CP's and don't remember a thing that was said to me or anything I said or did. Others have said I just have this "blank stare" and may move my lips, or "smack my lips". They speak to me and I look at them like a space cadet. It will last for a minute, maybe two (according to others, I lose all awareness of time) When I come out of the seizure, I can understand what is being said, but it does take 10-15 minutes before I am able to speak again. I don't recall any body jerks during a CP.
 
I do get absence seizures but not as much as the other symptoms. During the absences I don't have any awareness(zone out) for about a minute sometimes less. but when I come out of it I do have a feeling that something has happened. I always get the rest of the symptoms together and the absences happen about 50percent of the time (or so I believe). I also forget what I am doing, go into rooms and forget why, forget what I am saying. I also have trouble writing and typing when I am experiencing seizures. The absences are getting more frequent and I usually get a whopping headache when things settle down.
 
Has your Dr. tried or talked about using another drug alongside Tegretol? I'm not to keen on all the different ways a person can have a seizure. But I wonder if its possible to decrease complex partial seizures but still have partials.
 
I've always thought my myoclonus is what was causing me to 'stutter' and have word salad, it's what happens when I get really engaged in conversations... could those possibly be simple partials?
 
Andrew, maybe you should bring it up with your doctor. I only ever stutter and get 'word salad' as you put it when I am having seizures. (Love the term 'word salad'. Hope you don't mind if I steal it.) Ha Ha
Muay, I am in the process of making an earlier appointment to see my neurologist and discuss medication with him. Tegretol doesn't seem to be doing much for me now although it seemed to at some point. My seizures seem to be getting worse not better. Even though I have been part of this forum for a little while I am still finding it hard to get my head around things esp. because I don't get what most naive people would consider seizures. I have got to stop analyzing things because it is doing my head in. I am scared that I am going to have a tonic clonic at some stage and I know that you guys deal with them all the time.
 
Yup I was right. Massive headache followed. I feel like I am back to square one. Sleepless nights have returned just to put the icing on the cake. Earliest I can talk to my neurologist is 13th May so I am just going to have to deal with it until then. I really thought the meds were working then suddenly they're not. I don't understand that. I have only been on them since Dec. and things were improving. If anything I am worse than I was when I started them. The 'word salad' as Andrew so eloquently put it has only been happening over the last month and it is really starting to p**** me off. My head is in 'seizure mode' on and off for most part of the day and it is daily. I don't understand why I should be feeling this way if I am on medication that was working.
 
I'm sorry for the frustration with the med. It sucks and is beyond disheartening. I feel the same way with Generic tegretol. I was thrilled to stop having tonics after getting up to 400 mgs, but I felt so confused/lethargic. And then I started feeling what I think were auras. So its hard to say what is going on with your meds. I would say to talk to the doc about a possible increase but considering your struggling with the side affects I doubt you'd want to do that.

Maybe the Tegretol levels are off? I wish I had more useful info in regards to tegretol but its still new to me. Don't feel bad about being pissed. I think everyone hits that point when they are having success with a med and things change for the worse. Just hope it gets worked out.
 
Thanks Muay. I don't understand it either. My levels appear to be normal. I am having regular blood tests and have actually increased my medication. I've not been seizure free since I was diagnosed but they did decrease quite dramatically when I started taking the Tegretol. Then they started breaking through more and I increased the dose twice but over the last few days things are getting worse. I am already on 800mg per day. I am having trouble deciding which of my symptoms are medication related and which are seizure related. Most of my symptoms I was getting before I started meds but the word jumbling and the trouble with keyboard and writing skills only started a few weeks ago and it only happens when I have the olfactory hallucinations and the foggy head. Everything happens together except for the absence seizures which don't happen all the time. Heaps of other stuff happens too but these are the main frustrations. I am really tired of being hungover and I need some sleep.
 
I use this site for a little info on drugs I take. I like it because of the easy way they get across how the medication works and the basics I need to know. Plus the way the info is written is less robotic so I can retain the info better. http://www.crazymeds.us/pmwiki/pmwiki.php/Meds/Tegretol

I know the lack of certain Vitamins get depleted with AED's, and folic acid depletion can give that nasty hangover feeling. I would definitely talk to your Doc, because if you are not reaping the benefits of seizure control and have side affects that are driving you nuts i'd say something else might be a batter solution.
 
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