Hi All; I'm an epileptic /w complex-partial seizures

[Faye]

Hello,

I have epilepsy. I take 200mg of tegratol in the morning and 400 mg at night. My question is: has anyone ever, when first waking up, experienced slight hallucinations? I say "slight", because they only occur only when I blink - which takes less than half a second; they occur only in the blinking process. I cannot even describe what I see. It's probably nothing. I'm probably over-reacting - it's just hard to not question, when you know there's something wrong up there.

I only found out today that tegratol is not the medication to be on, when pregnant and breastfeeding. That means I cannot just let nature take its course and be surprised, when/if I get pregnant - but I have to plan for it. I'm not one to plan - I'm all for surprises.

Anyway, I hope to get to know you all. My seizures, when I am somewhat conscious, make me feel like I am going crazy. It's scary.

:banana:"It's peanut butter jelly time!":banana:

 

[RobinN]

Hi Faye -
Welcome to CWE.
My daughter is the one that has seizures, and Tegretol was the first medication she was put on. It caused vision problems for her. So it doesn't surprise me that you mention this.
She tried 4 meds and the side effects and the declining quality of life she experienced made me look for alternative therapies. She now has been seizure free for 6 months by making nutritional changes.

I think the med of choice, if you want to conceive is lamictal. I know of other mentions on the forum here, that are on other meds, and have had beautiful healthy babies. I guess it is a bit of a risky endeavor. Good luck

 

[mel239]

my trileptal was just increased from 900mg to 1200mg but I too have had those hallucinations when blinking-lasts only a fraction of a second but is constant all day with me,but not everyday.I dont see things that arent there like I did before I was diagnosed,but I see things differently.Words are different on signs and on the computer and when Im reading recipes or my girls homework.numbers turn different and when I read a text message,it means one thing and if I go back and read it there are different words and different meanings.Ive even accused people of changing my texts.Only seems to be written words and numbers not pictures.

 

[Cint]

Hi Faye,

I'm no longer on Tegretol, but I do occasionally experience those "hallucination" type visions. Mine are very similar to Mel's. When reading sometimes the words are scrambled or the half the page disappears. I blink several times and then it re-appears normal. It doesn't happen every day, but when it does it is very annoying. I did ask my epileptologist about it once and she said it could be simple partial seizures. The meds also seem to cause me to be dyslexic. I'm getting the letters on the computer transposed. Fortunately, I have spell check, but it doesn't help with all.

They are seizures, so you are NOT going crazy, although it is very scary.

I have two happy, healthy grown children. When I was pregnant, I was taking Dilantin, but I don't think that is the drug you want now. Back then, there weren't as many choices as there are now. Like Robin said, Lamictal would probably be better if you want to conceive, but talk to both your ob/gyn and neurologist. Make sure they are on the same page.

 

[Endless]

Hi, and welcome to CWE!

I've gotten the flashes of hallucinations. I've always kind of ignored them because they come so quick. I just thought my eyes were playing tricks on me. I've seen flashes of people in the driveway that quickly appear somewhere else behind another car and then another. I assume it was people but it just looked like a dark shape. This morning I thought I saw a spider web across my front door (that one lasted about 2 seconds). My TV has also looked wrinkled or warped, but it was so quick I just blew it off as lighting.

I'm on Lamictal now, 150mg and still ramping up. I was also on 1500mg Trileptal during some of the "flashes."

I've kinda quit telling my doc about some of the more unusual things that have happened (including this), because if he hasn't heard of them he thinks I'm nuts. I think you should tell your neuro, though. He's probably more open. You can bring the answer back to us, with my undying thanks.

Mel - I've always seen words on signs wrong for a second, then they are okay. I always thought I was dyslexic. Turns out I'm not. Are you saying it's a seizure?

 

[Nakamova]

Hi Faye, welcome!

If you do happen to get pregnant, make sure your OB-GYN and neurologist are on board together. In the meantime, definitely take a folic acid supplement -- it's important for pregnant women who don't have epilepsy, and really really important for pregnant women who do. (The AED meds, even the better ones, drain folate from the system. It's especially crucial to have enough folic acid in your system during the first trimester).

 

[mel239]

dont know if its a seizure related or medicine related event,but it only started June 2008 when I had my stroke and ultimately led to seizures.I have left temporal complex partials and simple partials.maybe its related to where my seizures are coming from.Never mentioned it to doc because it seemed so trivial compared to the bigger scarier hallucinations and everything else.I weigh the need to overmedicate as opposed to living with something so minor.