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I am a 25 year old woman who was recently diagnosed with simple partial seizures. Apparently my symptoms (deja vu, confusion, disorientation, inability to write while having episodes, etc) as well as my EEG indicate that the seizures are originating in my left temporal lobe. The neurologist immediately prescribed carbamazepine and said I am not allowed to drive for at least one year. I am just feeling a little overwhelmed by all of this. I have had the seizures since I was 9 or 10 years old... They come almost exactly once every two months, and at that point they happen several times a day for a span of about a week. Within the past year they have been happening more often during that time period and are also interfering with my sleep more now. But outside of that week-long-ish span every two months, I feel totally normal, capable, coherent, and healthy. And this medication just seems to have so many side effects that are way more intrusive than the seizures have ever been, as the medication will potentially affect me every day, while the seizures are only once every two months. Plus, when I have children some day, the medication will be a risk factor while I'm pregnant... and it could be affecting my liver and other internal organs. I just feel so uncertain about all this, and unsure of what's best for me.
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Hello. I can totally sympathize with you. I had my first seizure (a Grand Mal) right after I turned 24 in August 2005. Unlike you I never had seizues before this. Like you , mine are comming from my Left Temporal Lobe. I was told all about the side effects concerning pregnacy. I have been experiencing major depression and mood swings and am constantly worried about when I am going to have another one to have not had any grand mals since November, but i seen to get the Comples Partial Seizuures about every month right around my periods. Before that, I used to go into convulsions about every 3 months. After several EEGS, an MRI, and a PET Scan, my neurologist and his attendings decided to have surgery to stop my seizures. I am currently taking 500mg Phenytoin, 500mg Lamictal, and 2000mg Keppra. So far I have been toing pretty well with the Keppra, which is desighned for women's bodies, particularly with your hormones. I wish you the best of luck and feel free to commet back
Seizures that occur a couple of days before or after or during your cycle are called Catamenials. They're hormonal seizures.
I struggled with them for a while and then had surgery. That was the best thing I ever did ! My Left Temporal Lobe surgery was July 5, 2005 and I have been seizure free ever since !
I have had epilepsy since I was 2 yrs. old, women can have Catamenials if they've never had epilepsy since the're hormonal.
SEIZURES PROGRESS AND CHANGE. IT ALSO TAKES TIME TO ADJUST TO MEDS, ONCE YOUR BODY IS USE TO IT, YOU WILL BE FEELING BETTER. ALL MEDS NO MATTER WHAT ITS FOR, CAN EFFECT YOUR LIVER AND OTHER INTERNAL ORGANS, INCLUDING TYLENOL. IF WE READ ALL THE WARNING ON ALL THE MEDS, WE WOULDNT TAKE ANYTHING.
I HAVE WAS DIAGNOSED WITH SIEZURES(ABSCENCE) AT 6. BEFORE THAT, THEY JUST THOUGHT I DAYDREAMED A LOT. I WAS TAKEN OFF OF MEDS AT 12. WHEN I WAS A TEENAGER I STARTED HAVING ALL SORTS OF WEIRD EPASODES THAT I DIDNT KNOW WHAT THEY WERE BUT TNEVER SAID ANYTHING TO MY PARENTS. KNOW I KNOW THEY WERE ABSCENCE, SIMPLE AND COMPLEX SEIZURES. THEY JUST SLOWLY BUILT UP AND AND CHANGED AS I GOT OLDER. WHEN I WAS 25, I HAD MY 1ST TONIC CLONIC IN THE MIDDLE OF THE NIGHT. MY HUBBY THOUGHT I WAS HAVING A STROKE. HE KNEW I HAD EPILEPSY AS A KID BUT IT NEVER CLICKED AS A SEIZURE SINCE I ONLY HAD PETITE MALS AS A KID. I ENDED UP IN THE ER AND SPENT 2 WEEKS IN THE HOSPITAL. THAT WAS 25 YEARS AGO. 5 OR 6 YRS AGO I WENT UNCONTROLABLE.
SO WE NEVER KNOW WHAT OUR SEIZURES ARE GOING TO DO. WE NEED TO RESPECT OUR EPILEPSY. NEVER THINK YOUR PATTERN IS GOING TO STAY THE SAME BECAUSE YOUR BRAIN DOES WHAT IT WANTS TO DO, WHEN IT WANTS TO DO IT. YOUR MEDS IS WHAT KEEPS IT UNDER CONTROL. THERE ARE SOME OF THE NEWER DRUGS THAT THEY HAVE TALKED ABOUT IN THE FORUMS THAT WOMEM HAVE TAKEN WHILE PREGNANT I BELIEVE. CHECK OUT THE WOMAN FORUM. YOU CAN ALSO DICUSS THAT WITH YOUR DOC AND YOUR OB/GYN.
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
Why did it take so long to get diagnosed ? I was diagnosed at the age of 2 yrs. old. I'm 49 now, so I was diagnosed many years ago, when you were 9-10 they would have had a lot more information on epilepsy/seizures.
I have been on Carbamazepine for years and I am doing fine. One of the bigger concerns with it is your kidney, you simply need to have blood work done on a regular basis. which is important with meds. Your Neurologist knows that well.
I was in a situation recently where I wasn't able to drive, you'll get through it. The option is having a seizure while you are driving and hurting yourself and/or others. Trust me I have had to go through several surgeries since 2000 thanks to the seizures I had. My seizures only lasted about 1-2 minutes. I only had one seizure a month ! It kept managing to happen while I was driving. I went for 6 mos with no problems, drove again with my Neurologist's permission and in 2-3 weeks I had 1 seizure in my car. Seizures can be very unpredictable and crazy, trust me, I know. I'm not trying to scare you to death. You just need to realize that it can be very serious.
The great news is I had brain surgery July 5,2005....Left Temporal Lobectomy....no seizures since then. I am driving. I have my life back !
Since I was little till I was 19 I had deja vu, and jamais vu, and all sorts of experiences that today I know are part of auras. I didn't know what they were, my parent's never really noticed, so I thought it was normal. I did tell people that my deja vu was frequent and lasted for a long time but it just seemed like one of those things. It got worst as I got older but it never disrupted my life and since I was an artist I attributed it to a creative mind that just worked differently than others. Boy, would I find out how. At 19, one night, my right hand started twitching and this spread up my arm, to my head, through my body and they took to the emergency room having what I'd come to know as a pretty violent complex partials. I spent four days in the hospital seizing without stopping. It wasn't status because I was concious, but it was odd. I had at least five large sz a day and the rest of the time my body moved like someone with Parkinsons. Since then it has been close to 5 years and I remain uncontrolled. Moral of the story: You have to understand how sz activity works. It does not conform to one area. The longer you have it, it spreads. Your brain learns to have sz's just as it learns to ride a bike. Each sz makes the next one easier. The electrical misfirings damage that tissue and make it easier for that damage to then occur in neighboring areas when the activity is able to move through your brain even faster than before. If you take meds now, you can take fairly low levels and be good. Don't wait for it to become aggravated and then you really have to deal with the side effects. If I could have started taking low levels of drugs earlier and avoided getting to where I am, I would have I am sure. Beats all the sz's I can have in a month. When I start- I will have at least 5 or six at once.
WOW!! Sounds just like me! I have my first appointment with the Neuro on Tuesday. I have been having "headaches" along with the deja vu and Jamis vu spells and have been gradually getting worse. I had been diagnosed with generalized anxiety disorder and had been seeing a therapist. I explained to him about the headaches and he didnt think they were headaches and suggested I see a neurologist and put me on Lamictal in the meantime. I developed a rash to that, so he put me on Topamax after the rash subsided. Well in the coming weeks, a new issue developed and it was the memory loss during the headaches (lasting a few seconds to a few minutes). My co-workers that witnessed it said I didnt move and turned pale, garbled speech and couldnt focus my eyes. weirdest thing I have ever been through! I am just glad I found this website.
I think I have the same situation as you. I have been having the deja vu kind of seizures for about 18 years. I didn't know what it was and I never really told anyone. It was 1-2/month, sometimes less, sometimes more depending upon stress, sleep, health, eating, etc.
If this was still the case, I would feel the same as you. Why should I take medication everyday?
I had my last episode with the deja vu about 6 weeks ago and woke up in an ambulance. I was told by the EMT that I had a seizure. I was unconscous for over 40 minutes. I don't remember anything. The neurologist told me that the deja vu was an aura and also a different type of seizure. I have been reading a lot on this and other websites and learning a lot about what has been going on with me for the last 18 years. I have had memory proplems, and other things that I never knew were not "normal" Now, I am really afraid. I am afraid of that deja vu feeling. I have not had it since I started taking the medication. I am afraid that I will have another seizure and something bad will happen to me. I used to always have the deja vu feeling in the bathtub. I could die if I have a full blown seizure in the bathtub.
hi rwolfe
there are a few questions in my mind as to why its took so long to diagnose you since you've been having aura's since you were a child. i will admit my mum did state only recently that as a child i used to look like i was daydreaming and i must've been having aura's but when i was 17 they moved into full tonic clonics. it may only have stayed in this dormant form but it can manifest to stronger seizures. yes the medications have side effects and most drugs will make you feel awful while they settle into your system but in my mind i'd rather have some side effects to what your going through as these are affecting your life you even say this yourself even for a few days. when i had fits they only bothered me for that day.
i'm currently trying to conceive with my husband and am going to ask to be removed from my drugs to help us along better. there are drugs out there that are pregnancy friendly so you don't have to worry on that score. right now you maybe in shock and i can fully understand that as it took me 2 years to get to grips with the condition. i was in denial for so long.
the tablets will help i'm sorry to hear that your not happy with the verdict if you want you can i suppose ask for a 2nd opinion
good luck with the medication xx
Unfortunately, seizures usually progress. Your comment even said that they were happening more often. The longer you have them, the more often they happen. It's kind of a cycle, "the more you have, the more you have". That's what happened to my daugther. I would recommend you try the medicine, hopefully it will control your seizures. Most epilepsy is controlled by medicine. Find a neurologist you trust!