This is Sylvia and I am new here

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Sylvia

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Hi
I had my first seizure in 2004 the day after my Mom's funeral. After that I was put on Dilantin. I ended up not being able to walk, talk and shook terribly. They changed me to Keppra. I was better but still had spells of the weakness on my left side, shaking and memory problems. Some speech problems. At first I was told I had MS. Tests later showed no MS. But went 2 years thinking that was what I had. Then an Epilepsy Specialist put me on Lamictal and Klonopin. i was better in 24 hours. But still if tired, anxious or flashing lights brought on the seizure activity. I have lived with this for years now.
Last week, I woke up and couldn't talk. Weakness. They took me to the hospital. Thought I had a stroke. Tests showed no signs of a stroke. I still am waking up and can't talk. Gets a little better as day wears on. I am very tired. and weak. Saw my neurologist yesterday. Says he doesn't know what is wrong. Sending me to have an EEG. Haven't had one in several years.
He thinks maybe my Lamictal is too low. I am on 150 mg. And .5 Klonopin- one in morning and two at night. If anyone has had a similar experience would love to hear from you.:rose:
 
Hi:hello:

I just wanted to welcome you.

I have temporal lobe originating from the right side.

I have been put on about all the meds. and seen 7 to 8 Neur.

The only meds. that work best for me is Dilantin and Clonazepam.
It has always taken 2 meds. to have the best control.

There are so many types of seizures and many diff. meds.
We all react diff. to the diff. meds.

Are you keeping a diary? This will help you and your Dr.
 
Hi Jyearta
Thank you for answering me. The diary is a good idea. I haven't done it.
I got up this morning and couldn't speak well. It got better. Then I fell asleep on the couch and the neighbor knocked on the door. As soon as I woke up I couldn't speak well again. I went back to sleep. Got up just now and can speak almost normal. I have been reading on line about brain waves being strongest when you sleep. If the waves are abnormal and depending on where it is abnormal can effect you in different ways. I think I will either be put on different meds or stronger dose.
thanks again for answering.:shake:
 
In your diary note everything, it might seem small or not that important, but until you and Dr. find what is going on and hopefully the cause.

Triggers can be lack of sleep, stress, infection antibiotics , some foods, I myself and some of the others react to over the counter vitamins. after learning about compounding phar on this forum I now have my compounded.
Ask your Dr. about checking your Vit. levels. Most of the anti-seizures meds. deplete our bodies of the needed vitamins.
 
News

My blood work came back and showed my levels were too low. The doctor increased my Lamictal to once in the morning and another one at night. First time I did the new dosage I woke up and was able to talk normally. I am so very happy. Still having the EEG next week but at least now I know what the problem was.! :dancing2:
 
Hi Sylvia,
I just wanted to say welcome!! I hope you feel at home here and you start to feel better in no time!! :) Lots of hugs to you! Brandi
 
What I didn't realize was that your body gets used to these drugs and stop working as good as when you first were put on them. Scary though5.
 
I am having the seizures still. but only occasionally. (once or twice a month) I had one this morning. Even with the increase in medicine they are breaking through. I see the doctor in July. Does anyone else experience this?
 
Hi Sylvia,

I've had E for over 30 years and tried over 10 meds because of breakthru seizures of all sorts. I also had a temporal lobectomy that was unsuccessful, even made seizures worse. I now have the VNS to help with seizures. I also take 2000 mgs. of Keppra and 200 mgs. of Topomax + a newer med, Potiga. So yes, many of us with E experience breakthru seizures. It is a trial and error type of thing. Your neuro may increase your meds or change them again.
 
Hi cint
Thank you for your comments. I got upset because picking up my granddaughter today and I get tired after I have one. I do realize that like any medical problem its a guessing game on what will work. I need to be patient. Hope you are doing better.
 
this is going to seem like a silly thing, avoid foods and drinks that clean you out like green tea and spinach. be aware of what you eat and how your meds like it.

i learned it the hard way when :-) good luck
 
Hi Court
I have to sayI never thought of that. But it makes sense. I will do some research on it. Thanks for the heads up!
 
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