Epilepsy & Seizures Support Group

It'll probably take time to find a medication that really works with the minimum of side effects as well. I know it has done with me. All I can suggest is that you be straight with the doctor(s) and if you're not happy with side effects, to let them know. Sorry but I've no idea what the '6' and '4.7' mean that you refer to. How are your employers treating with regards to this? Sorry I can't be more positive but you're not alone.

First of all honey, you are NOT alone. "It is estimated that around 50 million people throughout the world have epilepsy and that more than 3 million people in the United States have epilepsy." ~ WHO.
I know how difficult having seizures is, I had what the doctors referred to as epileptiform seizures as well as sleeping seizures for many years but had very few of them. Then one day, this past Friday August 24, 2012, I had a Gran Mal Seizure. I was taken to the ER & hospitalized for 24hrs for Observation. I was given a prescription for a medication called Kepra that I will have to get titrated up over the next month. I have been here done this before, I already take Neurontin for Fibromyalgia which was originally & still is used as an anti-convulsant. The last time they added an additional anticonvulsant, I had hallucinations, paranoia and a ton of other side effects that I do not recall. Because of that experience I am hesitant to take another drug for seizures. I was told that I can no longer drive, I felt like the bottom of my world had fallen out., I am wheelchair ridden so that won't change a lot for me, however I can understand how taking that away from you could cause depression as it makes you dependent on others for just about anything you want to do.
I felt that way when I ended up in a wheelchair full-time.
Now, I have even more restrictions.

It takes awhile to get the right medicine and the right dosage for anyone who has epilepsy. I was a PA-C for 20yrs and dealt with many people who had epilepsy so I understand the titration needed to get a person where they need to be on whichever anti-convulsing medication that works for them with minimal side effects. Preferably with no side effects.

If you are having severe side effects with the medication prescribed for you, you have two options. The first, which I would recommend highly, is get a 2nd opinion. The second is talk to the doctor you have now and let him/her know you are having side effects, what they are and that this is causing you to be depressed (depression can be a side effect of certain medications).

I hope I have helped you in some small way. If you need me you can always PM me and I will answer you within 48hrs, I cannot come on the computer daily as it seems to cause small ocular seizures.

I will pray for you & pray that you find a good medication that works with minimal or no side effects for you. On the bright side you are only 1.3 away from driving. Which is nice if you can get rid of the side effects. In the State where I am, you have to be seizure free for 1yr before you can drive again & Doctors are required by law to let the DMV know you have seizures. I got my notification in the mail today. That didn't take long, I have to mail in my license and they will give it back when I reach a year with no seizure activity.
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tattyhead: Thank you so much for posting. The numbers I am referring to are how much of my meds are in my blood. My employers don't know much about it. They know I've had one seizure because I had to call in sick to work. They also know I'm on medication. However, I prefer not to discuss my epilepsy with people if I don't have to.

JET: I just want you to know that your post helped me so much. I, too, have suffered 3 grand mal seizures. I know how terrible that is. I am so sorry about your breakout seizure. I live in Colorado. Here you can drive if you are 3 months seizure free or have the ok from your doctor. And they never revoke your license. So I guess I got lucky in that aspect. I'm just so frustrated because I really want to live a worry free life, or at least not worry that I'm gonna collapse at any second. But I really like the idea of getting a second opinion. Which I believe I might do very soon. Thank you so much for helping me not feel alone in this. And thank you for offering your advice and help. It is very much appreciated.

Hi!
What type of epilepsy do you have and what medication are you on? I have juvenile myoclonic epilepsy and it sounds a bit like you do to. It usually comes on as a teenager. The seizures are grand mal and mostly occur either just before going to sleep or just after getting up. The myoclonic jerks that occur in between are not very often and it feels like your brain blinks. No one notices them. It doesn't sound like you have adequate control to justify staying on that medication. I have had 95% success on Lamictal and have only had a couple of break through seizures in 8 years which was enough for my neurologist to question my meds, which I decided to stay on. They were because of stress and sleep deprivation. I know it sucks not being able to drive, but you have to appreciate that it is for the safety of others not just for yourself. xx

When I was young, not quite as young as you, I was leading an average independent life.I lead a busy life with my young friends. I had a job & a car. I went places & did things. Then one day I was in a car accident that left me with a concussion & damage to my temporal lobe. I had a grand mal seizure. They put me in the hospital & I had more seizures. They put me on seizure medication that left me as to where I couldn't walk on my own. My whole world changed from one extreme to another. It is especially hard when you are young. You expect to be just like your friends & others in your age range. I lost my freedom. I lost some of my friends cause they were so busy in their lives & I couldn't live their lifestyle. I couldn't drive anymore. I lost my job cause I had too many seizures. I went through depression ,aggravation, frustration, scard,crying & more. I went through quite a few medications with really bad side effects such as blurred vision & more. After things calmed down some, I started to accept it a little better & realized I was stuck this way forever so it was time to find the best to help me. I have never driven since then & don't want to because what if I have a seizure while I am driving. I could end up in much worse shape then I am in now. It is hard enough to deal with this without dealing with more. Forget driving at this time, concentrate on getting your seizures under control with the best medication with the least side effects. Then worry about all the other. I kept going to bug the Dr. to hurry up & find me the best med. Try it you might like it. Give it your best shot. I wish you the best. Are your parents helping you out in all ways?

Alyssarose,
First off, you need to remember that people with epilepsy are like snowflakes…no two are totally alike. What works for one person may not work for another, and what set one person off into a seizure may not affect another. But even with that said, we are all in this together because no one understands what it is like to have a seizure except those of us who have had one.

I had my first seizure at age 15 (a grand mal or what they call a tonic-clonic now) at night while I was sleeping. I had several more nocturnal seizures over the next year. I was finally brought under control by Dilantin, one of the oldest anti-convulsant meds there is. I have been on Dilantin for over 40 years. The only time I have had a grand mal since then was when I was 20, and had just become pregnant. Body chemistry changed and I had a break through seizure. My doctor then added Phenobarbital, another old but trusted drug, to my Dilantin, and I have had no seizures since then. I work. I drive. I live a relatively boring but normal life.
I don’t dwell much on my epilepsy now. It is there, and I know it, but I control it, it does not control me. I take pills twice a day, and that is the only concession I make to it. I stay away from strobe lights, flickering lights, and excessive heat as they all are triggers for me, but other than that, I can do anything a “normal” person can do. My blood levels are always a little on the low side, but they are enough to give me the control that I need. I have had doctors try to increase my drugs so that they are up to where they think they should be, but I always go toxic when I increase them. They work where they are at, and as my mother says, if it ain’t broke, don’t fix it.
I just thought you should hear from someone who has made it for years and been able to have a fairly normal life. It can be done in approximately 80% of all epileptics. You may be part of that 80%. Try to look at things positively and take an active role in deciding what medical treatment you receive. If one drug is not working, speak to your neurologist about other possibilities. It is your body, your brain, and you are the one who should decide.
Good luck and God Bless.

Thank you everybody so much for the advice and being so nice. Having all this support has really put a turn around on my mood. I am very excited because I will most likely be able to start driving again this weekend! :D I'm just waiting for that phone call from the doctor (: Someday I hope to wake up in the morning like you Maeta... and have everything under control and not have to think about being epileptic 24/7. To be honest with you Flicka I don't know what type of epilepsy I have, because I was diagnosed fairly young when I was still under the care of my parents. But I am currently taking Lamictal. It sounds like I probably have the same type of epilepsy you do though. But I know I can trust myself driving as long as I get a good nights rest! That is my only seizure trigger. That way I know I am not endangering myself or others! Thanks again guys

My neurologist has repeatedly told me that there is no point in measuring how much Lamictal is in blood and that it is not an indication of seizure control. I get the ‘therapeutic level’ checked anyway and he won’t look at it. Everyone is different - different bodies respond to different medication levels in different ways. The number for you doesn’t apply to everyone so how did he come up with it? If Lamictal was the golden answer to seizure control and that everyone had a number that would make everything okay, don’t you think everyone would be on it?

If my neurologist thought I was considering driving within one year after a seizure (which is illegal in New Zealand) he would have taken my license which he apparently has the right to do. I personally think you should wait. The fact that you are still struggling with partial seizures make me think that you are crazy and irresponsible thinking that you can drive. Taking additional medication creates totally different risks also. Your battle shouldn't be about proving that you are normal and independent it is accepting what is normal to you and knowing that you are responsible enough by taking your time – grow from there. It doesn’t mean you should never ever drive again, it means you are reducing the risk by making sure you have absolute control before you do. You should check to see if you’re legally allowed to drive and go to a neurologist for a second opinion. It blows my mind that someone would be so irresponsible, selfish and risk their and others lives just to be able to go somewhere faster.

You have side effects that make it hard to work? And you think that it will be okay to drive?!?!?! You need to get your head checked girl and settle down before you get behind the wheel and risk causing an accident!

Flicka, I believe that what you just said to me is very mean and inconsiderate. First of all, I actually just discovered that what I am suffering from is not partial seizures... it is a side effect of the meds. Second, I am a responsible person. I would never drive if I thought myself or others were in danger. I live in the United States. In the state I live in you have to wait 3 months after a seizure in order to drive again. And my doctor can legally determine otherwise. The reason it makes it difficult to work is because I get frequent headaches which yes, sometimes, makes it difficult for me. But the fact that you just called me crazy? That is NOT ok. This is supposed to be a support group and that was not very supportive. I have my seizures under control. I know when it is safe for me to drive. I really think you should think about what you just said. I trust my nuerologist and my doctor. Not to mention that it has almost been 3 months anyways but I would like transportation to both work and school. I'm done with this conversation. I hope you feel satisfied.