I just recently had my first (that I am aware of) seizure at 35 years of age... My husband witnessed the episode but I have no memory of it happening. This happened in my sleep this past Sunday night (March 27th)... After two days in the hospital and the plethora of tests, the MRI came back normal but the EEG showed abnormalities in the back right lobe of my brain. I was placed on an anti-seizure medication - Keppra 1000mg and told that I can not drive for at least 6 months... Not a good thing since I am an external marketer for a LTC facility. Luckily my company is working with me (for now anyway)... This past week has been a whirlwind of emotions (and minor side effects from the meds). I have my follow up with the Neurologist on the 13th of April and of course have a TON of questions written down in a journal already. I am ready to know WHAT caused this but wonder if I will ever know!!!
My question is this (I know that it will be answered on the 13th but I keep hearing mixed answers).... If I have another seizure before the 6 month mark, does that 6 months start over again? The neurologist told me that it is the law to not drive for 6 months after a confirmed seizure... Hmmm....
Any advice or simlar experiences shared are much appreciated!!!
The 6 month mark becomes kind of fuzzy, actually. It takes months to initally build up to a "standard" dose for many medications, including Keppra. 1000mg is usually a starter dose, and then you build up from there. I was on 3000mg, which took about 5 months to build up to. People often can have seizures while they are "building up" the dose. If you are able to reach a dose which helps, whether it be 1,000 or 3,000 mg, then the "counting game" usually begins, i.e. after you reach a certain level. Everyone is diferent--spme people need higher doses than others. Hopefully Keppra alone will help you control your epilepsy; often times, people have to be on more than one medication to gain complete or fairly complete seizure control. It's a guessing game, depending upon what types of seizrues you have, your symptoms, if you tolerate the medication(s) well or not (many of them have hellish side effects.), and if the medication helps. Thus, with all this in mind, 6 months can drag out to be a year, i.e. longer than expected, to put it in a nutshell. Usually, though, if you are able to control your epilepsy pretty soon after your initially start having seizures, the better in terms of long term seizure control. I know it can be hard and frustrating (been down that road myself many times), but hopefully things will work out. 70% of people are able to obtain seizure control via medications alone, the medications are not exactly easy to deal with, i.e. unpleasant side effects. Known, in the epilepsy community, as "necessary poisons." :) But they help many. Some of the newer meds have fewer side effects, and they do have XR vsersions, which are easier to take (vs. 3-4 times a day!) Well, good luck to you--I'll keep my fingers crossed!
Thanks so much for the advice and pep talk. I am very scared to even hear what my Neurologist says on Wed at my follow up. I want answers and I am praying I will get them. I just find it odd that I was put on meds after 1 seizure, is that normal???? I deff want to get a second opinion and pray that I can get even more answers. I am feeling very lost and VERY frustrated today. The meds make me CRAZY and I just can't live like this... so something's gotta give..
No problems at all. I know how you feel....things can be very frustrating, to put it simply. The meds can be hellish, especially on higher doses. I've been on meds for many years, so I can relate. If it makes you feel better, though, some of the side effects become more "tolerable" once you've adjusted to the medication, which can take time. Thus the reason they don't (with the exception of dilantin and a few older meds....stay away from them if you can, though) start you on a high dose....the side effects can be miserable; it also takes a while for the body to "adjust" to the medication. The perfect dose is tricky...too low, and you have seizures. Too high, and you have side effects as bad as the seizures themselves. SImply put, you want optimal seizure control on the lowest dose possible. Again, it's a trial and error guessing game, with "standard" rules which need to be tweeked for each person. I was on Keppra for a long time, but developed a severe rash, as I was on a very high dose.
As you said, your abnormal EEG readings confirm that you do have epilepsy (the cause, the "whys," is often the big mystery.) If your EEG were normal, it would be more difficult to diagnose/determine if you have epilepsy. Any human being can have a seizure, although some people's seizure threshold is lower than others, for reasons unknown, perhaps genetic or otherwise. Usually, though, the seizure would be a reaction to a medication, for example, or some type of food/alcohol. But "epilepsy" is defined as one/two or more seizures which are unprovoked, or have no obvious cause. SInce your EEG showed abnormal, i.e. epileptic, activity, you are (obviously) posed with the possibility for future seizures, Thus, the key is to control your seizures ASAP, and thus the Keppra after one unprovoked seizure. (Have you had any more seizures?) If you are able to successfully control your seizures as soon as possible with medication, the less likely it is you will have future seizures. With time, if your seizures are controlled/if your epilepsy is stable for a prolonged period of time, you might eventually be able to get off medication, but that is a ways down the road. If your seizures are refractory, i.e. do not respond to medication, for longer periods of time, they become harder and harder to control via medications alone, often worsening and causing scarring, especially structures like the hippocampus, essential for memory.
My epilepsy was refractory for years, and know from first hand experience; eventually I ended up undergoing brain surgery, long story.
In any case, you're doing the right thing--and if you're not satisfied with the neurologist, go for an epileptologist, a neurologist who specializes in epilepsy. I've had a lot of garbage experiences with neurologists, enough for a lifetime. It's often amazing what they don't know about epilepsy, considering how common it is. Kind of humorous. Hang in there, gal! (And Texas rocks, by the way. Had a good friend from Texas, and would love to visit one day) I'm not sure how long you've been on Keppra, but the worst side effects will pass as you get used to the medication, and up it slowly (as long as you're not on too high a dose).
Don't let any of this junk get you down--the most important part is to obtain seizure control. Things get better from there. Hope your appointment goes well, and wish you the all the best!
Thanks SO much for all the many wonderful words of advice and usefull information. I actually have the name of a neurologist that specializes in seizures, so I am assuming that is an epileptologist???? I really don't know much about the Neurologist that saw me in the hospital other than just that... he is a neurologist... and that he dropped a bombshell... LOL... I know that sounds VERY dramatic but it really has turned my world upside down. I have a small notebook with several pages of questions for him. I feel that he will satisfy a lot of my questions but I still feel that I will go on to see the specialist in Dallas... Nothing against the smaller rural city that I was in but I would feel much more comfortable having a second opinion, I think...
Do you know if the 6 month no driving law means that I have to go 6 months seizure free before driving again??? Just curious because this is a real strain on my job. I want to be safe and others to be safe but I am just so confused. I know that I need to ask this of the doc on Wed but my brain is just a muggled up mess right now... LOL.
No probs at all. It's good you're going to an epileptologist. They know much more than the average neurologist.
Great you have all these questions. Since you're new to the epilepsy community, and are learning about epilepsy/seizures, it's good to do as much research as you can, and familiarize yourself with different types of seizures. It's amazing how many different types of seizures there are, affecting b/tw 2.5 to 3 million Americans, although estimates tend to lean toward the latter There are over 40 types of szs, sorted basically into "partial" (simple and complex partial) and "generalized" seizures (primary and secondary). The very basics: Simple partial seizures are also known as auras, and are primarily subjective (people around you don't usually know you're experiencing a seizure) where you have an awkward inner sensation, like being pulled out of your body, floating above yourself (temporal lobe), so to say, or see flashing lights (occipital lobe), or have uncontrolled motor response, such as a shaking of the arm, for example (motor cortex, b/tw the frontal and parietal lobe). All depends on where in the brain it occurs. If you have complex partial seizures, the aura is like your "warning," varying in length from a split second to 30 or more seconds. Complex partial is where the seizure activity spreads, involving enough of the brain to alter your state of consciousness/awareness, usually anywhere from 30 seconds to 2 minutes (follows you aura). You come to afterwards feeling tired and confused, and it takes a while to even realize you've had a seizure. Sometimes seizure activity can spread,involving the entire brain, often leading to the "classic" seizure, or convulsion, i.e. tonic-clonic seizure, lasting anywhere from 2 to five min. or more. Called secondary generalized seizures. Partial seizures can be caused by scaring from an accident, a tumor, or for many reasons we don't yet understand. Primary generalized seizrues, of which there many kinds, not simply the classic tonic-clonic, involve the entire brain from the onset. In general, primary generalized seizures are easier to control with meds, but every case is different. (The type of med you get depends on the type of seizures you have) People with primary gen. seizures often do not have auras. These are simply the basic rules. If you can, it's good to check out a recent book or two from the library, and read up. Make sure it's very, very recent. There has been so much research/better understanding of epilepsy simply over the past 10 years. (Plus, MRIs are SO much better now as compared to 10-15 years ago. Try to get at least a 3 Tesla. If there is an abnormality on your MRI, take it to another doc, and see if they get the same reading. My brain tumor, the initial reason I started having epilepsy, was misdiagnosed for years, unfortunately)
Regarding recent info, which I was discussing above, before my little "note" on MRIs, you can go on the epilepsy foundation website. I know the Epilepsy Foundation operates in every state....if you need any help with anything, finding a good doc, or even for help getting around (i.e. the driving issue) or help paying for meds, contact the foundation. They can be very helpful, as many seizure meds are very expensive, unfortunately. It seems like the more necessary the medication, the more expensive it tends to be. REdiculous, really. But often times the doc has many samples of meds.....my epileptologist's nurse pracitioner gives me tons of samples, which helps. My Lamictal XR, for example, costs, per month, b/tw $1,750 and $1,925. Thank god for the help I get paying for drugs, but it is absurd.
Also, don't let anyone try to talk you into generics. It is generally known that generics simply are not as effective regarding seizure meds brand names. Multiple studies have shown this. The active component may be the same, but the "inactive" ingredients--and there are many--will affect the effectiveness of the active ingredient, how well it is absorbed, for example, although drug companies will deny it. Generics are not tested the way brand names are. In any case, some of the newer meds are patented, and do not yet have generics, but if you can, avoid them.
Before I forget.....make sure you ask your doc about such things as vitamin deficiencies caused by many different meds. Vitamin D is often depleted, and calcium or magnesium can also be affected. Make sure you get regular blood workups, especially regarding how much of the medication you take actually gets absorbed into your system.
Oh, to answer your question, usually you have to be 6 months completely seizure free, unfortunately, but many people "tweek" the edges of the 6 month rule, and I can understand. From over 16 years of experience with seizures, I can tell you that you are less prone to having a seizure when you are concentrating on what you are doing, actually. I've never driven a car, but have driven a tractor since I was 12 years old (have 7 acres of land), never having a seizure while driving. It's usually when you're tired, during sleep, or when you're relaxing after a hard day's work/lots of stress that you have a seizure. Kind of when your guard is down, although if you have refractory epilepsy, or occaisional breakout seizures, it is frustrating. I often have had seizures while asleep, or while I play piano, actually. When "relaxing" so to say, but one can never predict 100%. Many women are more likely to have seizures just before (like two days or so) or during their menstrual cycles. Some have seizures close to when they ovulate, i.e. day 15 or so. Some women have catamenial epilepsy, or epilepsy which is directly related to hormones, and thus take birth control pills to help regulate their period, or stop it all together. Every case is so different.....many cases are not affected by hormones alone.
Whatever happens, don't let anyone on the job discriminate/fire you simply because of your epilepsy. You should not feel ashamed or embarrased. If you feel you have been discriminated against because of your epilepsy, talk to the epilepsy foundation in your area. Many lawsuits have been filed regarding this due to, unfortunately, to public ignorance, fear, and discrimination. And then there is always the ADA, (Americans with Disabilites Act)restored to its full capacity, so to say, last year. Don't let anyone BS you around. THere unfortunately is still a lot of discrimination regarding seizures...epilepsy is known as the "neglected stepchild of neurological diseases," actually. Third most common neurological disease, behind stroke and alzheimer's. If you have questions, a great organization to contact is Susan Axelrod's foundation called CURE, or Citizens United for Research in Epilepsy. The Axelrod's daughter, now 29, I think, has had a severe case of epilepsy for much of her life. Luckily, her seizures have been controlled for 9 years now. She's on Keppra, actually!
Just so you know, I sent you an e-mail. Sometimes easier to discuss things that way, i.e. not open to everyone. Yadda, yadda. Well, good luck to you, gal! Keep your spirits high, and things will work out. Sorry to bombard you with so much info. Just hope it helps a bit!
Cheers to you!
Wow, thank you SO very much for all the information and advice. I am just now getting around to reading it so this reply is a tad bit late. I am really trying to keep my head high. Right now I am working on getting a repeat EEG done. The neurologist wants me to have a sleep deprived EEG, so that's next on the list. I have not made an appointment as of yet to see an epileptologist because so far my neurologist has been really great and very informative. He doesn't specialize in epilepsy but he does see a ton of patients with seizure disorders. I am so far confident in his abilities but am not totally closed off to seeing a specialist.
I will keep my head high and stay strong... Again, thank you!!! :)
Good for you, gal! Staying positive always helps. Having a second EEG can be helpful. It's good to know as much as you can. Have you had any other seizures since the one you initially described? Hopefully not. If the doc feels it necessary to have a sleep deprived EEG, then go for it. Usually you stay at least one night in the hospital (a special section called the epilepsy monitoring unit, or EMU), and are kept up half the night, with your medication suddenly stopped. Actually, many people stay for days at at time to try and record a seizure. For some, it is for diagnostic purposes only, i.e. if you have not had epilepsy for very long, and are just trying to confirm the diagnosis of what types of seizures you have, where seizures are originating in the brain, and if it involves more than one area. For others who have had refractory epilepsy for some time, i.e. seizures that have not been controlled successfully despite trials with three or more medications, it is the first of many steps in the long and ardous presurgical workup to see if they can be considered as surgical candidates. Not everyone with refractory epilepsy is a surgical candidate. Of course, there are many different types of surgeries for different variations of epilepsy, but I won't bother you with the details. I was just going to warn you that fate can be stubborn--you can be taken off all your meds and be sleep depried, but not have any seizures. Murphy's law. Half of it is luck. I had to be hospitalized four separate times, about a week each time, before I finally was successfully able to record seizures. THis was over a few years. Part of a long and ardous surgical workup for me, which took months. My chronic epilepsy was refractory for 13 years (was bad); finally had a left temporal lobectomy at Mayo clinic, as well as removal of a brain tumor. To make a long story short, I hope things work for you first time around!
I'm very glad you are happy with your neuro. If you do not achieve satisfactory seizure control with keppra, or are not happy down the road with this doc, shoot for an epileptologist (an "epi"). It helps to be patient, but shoot for seizure control as soon as you can, not simply seizure reduction. (By the way, do your complex partial seizures come the right or left side, and are they from the temporal lobe?) Remember, the earlier the better in terms of long term seizure control. Refractory complex partial seizures, which very often occur in the temporal lobe, can become harder and harder to control, usually worsening with time, and can lead to scarring of the hippocampus (where seizures most often originate from) and furstrating permanent memory probs/memory loss, which I can relate to from years of personal experience.
People who have difficult cases of epilepsy are often referred by neurologists to epis, but some docs have a hard time addmitting their knowledge is limited. My experiences over the years involved both.
I was at an Epilepsy Foundation meeting in Chicago a few years ago, attended, of course, by both neuros and epis. When asked multiple quiz questions about epilepsy, it was shocking how poorly many neuros actually did, only answering correctly about 50% of the questions. Many neuros are not also familiar with the newest anticonvulsants on the market. Keppra has been around for a while, not old, but not new either. Epis are much more in tune with newer meds. Currently, there were at least 3 or 4 new meds out in the last year. Despite the fact that epilepsy is one of the most common neurological conditions, many neuros do not know as much as they should--they know more about MS or parkinson's. Some of the neuros I saw, before I went to an epi, were absurdly ignorant. But, of course, there are some good neurologists out there as well. Those who are best will send you to an epi if they feel it is necessary. Mixing seizure meds, knowing which ones to use (keeping in mind there are over 40 types of seizures--epilepsy is being referred to by some as a spectrum disorder), epis tend to better know the ins and outs, and various types of cocktails known to help with different types of seizures. It's an art. So, good luck to you, and keep me posted. Send me an e-mail if you choose, whatever.
Sometimes going to a teaching hospital is good--neuros and epis work in groups, along with other docs, and make suggestions/observations.
On a final note, if you happen to know of a good pain clinic which helps people with chronic pain, especially resulting from brain surgery/craniotomy, pls. let me know. That is one of the impacts of my brain surgery I am desperately trying to resolve--the pain has been hell.
I recently had a seizure also whilst I slept and my memory has been affected and I'm now having panic attacks because of the uncertainty of whether I will have another one. I'm not allowed to drive for 12 months and if I have another seizure my 12 months have to start again. I'm in the Berkshire area, maybe this makes a difference.
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