<p>My son collapsed walking home from classes in April (23 yo) and suffered a grand mal seizure. Nothing like this in his past. CAT, MRI and EEGs were normal. They (Drs) suggested no driving for 6 months (state law) and a wait and see since many people have one seizure and never have another.</p>
<p>In June he destroyed both meniscuses (is that the plural?) in one knee and underwent surgery. There was a complication from surgery (suture went through head of hamstring undetected) resulting in extreme pain for 2 days until the reason for pain was found. During those 2 days he didn’t sleep at all and was taking massive doses of pain med (later we found out that this med can lead to seizures in susceptible individuals).</p>
<p>After 2nd seizure he was labeled with epilepsy and put on med. First med was a disaster (amnesia) and now on 2nd med which is interfering with his ability to read, comprehend material, screwing with his mood and generally feels “foggy” all the time. </p>
<p>Needless to say school work is suffering tremendously even though he dropped to part-time. He is afraid to change med as he fears next one could be worse.</p>
<p>Just wondering if any of you out there have gone through this and have any thoughts or suggestions.</p>
<p>I had a grand mal seizure at that age of 28 – once and never again. I suspect now that it was a consequence of discontinuing a medication that I had been taking for another medical condition, but that possibility was not considered at the time.</p>
<p>In any case, I was not advised to stop driving (although I think that might have been a good idea), and I was put on anti-seizure medication for two years. It took some time to get the medication right, and I did have some side effects.</p>
<p>There are many types of anti-seizure medication available, with different potential side effects. Your son may need to be patient – some side effects wear off after a while – and he may need to be persistent – it may take several tries to find a medication that does not cause intolerable side effects. </p>
<p>Your son should know that he should not discontinue anti-seizure medications abruptly. That in itself can trigger a seizure. When I eventually stopped taking my anti-seizure medication, it was tapered off gradually, over a period of several weeks.</p>
<p>One of my doctors told me that practically anyone can have a seizure if the trigger for it is strong enough. Some people’s threshold for seizures is lower than that of other people. Those with really low thresholds have continuing problems with seizures and often have to take medication on a lifelong basis. These are the people who are usually described as having epilepsy. But there are also people who have only one or a few seizures in a lifetime, usually in response to a strong triggering event (like a problem with medication). Your son may be such a person; I think I am, too.</p>
<p>I don’t have any advice other than hopefully the epilepsy is short term and caused by the meds from the surgery. I grew up with my older sister being epileptic. One time we were on a camping trip and she had a seizure. Later we found out her seizures were tied to her excitement level. She was on medication for a few years and then by the time she turned 20, was weaned off them. She hasn’t had a seizure in years, but we still try not to let her get too excited.</p>
<p>As for medication, it might just be a matter of finding the right type/dosage. </p>
<p>…sending healing thoughts and wishes your way…</p>
<p>My best friend’s DD was diagnosed with epilepsy during the 6th grade (she is now a senior in hs). She never suffered any grand mal seizures, but had small ones where she would stare into space or have stiffness in her arms. It was a big struggle for a couple of years just to find the right dosage of medications for her to stop the seizures. She also suffers from the fogginess and has more trouble with seizures if she is stressed out or tired.</p>
<p>During hs she has only taken 5 classes per day and many days needs to come home and take a nap in the afternoon before doing homework. This girl was a highly gifted student, but hs has been harder for her while dealing with the epilepsy. She did get her driver’s license last year and that has gone well. She is applying to colleges close to home and will probably live at home as she is not ready to be on her own yet. I think that another side effect of the illness for her is that she is less mature than most seniors I know. </p>
<p>I know that my friend has a really good children’s neurologist that has been a great help through all of this. Your son also must be careful with drinking depending on his meds. This is a tough diagnosis for anyone, but I think it is especially hard for kids going off to college and being on their own for the first time.</p>
<p>Thanks for the responses. I too think it may require time trying different meds. In fact I suggested taking next semester off just to have the time to adjust everything w/o the stress of classes. However, he only has one more semester and wants to get done (not a patient personality). He is already “behind” due to dropping hours last semester with medical problems and some other short semesters due to two emergency surgeries. Have I mentioned this kid has had the worst luck since going to college???</p>
<p>I have warned him about stopping the med abruptly as I could see him becoming so frustrated he would just toss them. At his age, it is hard to be directly involved in his medical care though he has signed “releases” to allow the Dr.s to talk with me.</p>
<p>I second the lamictal. Ask the doctor about starting it now as an add on and tapering off the other med (prob. depakote? very sedating) while amping up the lamictal. Lamictal is also less likely to cause depression or weight gain. [Also, don’t tell the doctor this, but try getting a pill splitter and starting with half the prescribed dose, slowly increase. It makes it much easier to tolerate and minimizes side effects.]</p>
<p>Insufficient sleep, irregular sleep patterns and stress will lower anyone’s seizure threshold. A big challenge for a college student. Taking a semester off might be depressing; has your son come forward to his professors indicating he has some medical challenges at the moment? I am sure some accommodations could be made as he adjusts to the medications. I hope it all stabilizes quickly and eventually goes away!</p>
<p>Thanks again for the responses. Good ideas. I wondered about lamictal after doing some research on possible drugs. Presently he is on Topamax and is not even at what they consider therapeutic dose. If he doesn’t call Dr. on his own soon, I may make the call myself. The Dr. told me that Topamax is known for cognitive “dulling”. </p>
<p>He hasn’t talked with his profs, though I have encouraged him to do so. I will bring it up again, when he is in a receptive mood.</p>
<p>Hi
My oldest son (24) has epilepsy. He started having seizures when he was 11. He has never been able to drive.
He has been on a lot of different meds/combos, has a VNS inplant etc but not fully controlled. He does not have Grand Mal, he has complex partial.
PM me if you have any questions</p>
<p>mkm56, It sounds like your son has been through quite an ordeal these last few months. It must have all come as quite a shock to all of you to have something like this happen out of the blue. I have no direct experience, just wanted to wish your son a quick and complete resolution to these issues. It must be frustrating that it’s far from clear that anything like this would have reoccurred had it not been for the timing and trauma of the knee surgery. You may have already done this with everything you have been through, but as a general rule, I would always encourage one or more second opinions - even if you trust and respect your S’s current doctor. </p>
<p>What’s most important now is your S’s health - the impact on the grades will be easily explainable later on. Best wishes - please keep us posted.</p>
<p>Is the doctor that your son is seeing a neurologist? </p>
<p>The object of the game here is to find a drug (or combination of drugs) and dosage that deals with the problem effectively without causing excessive unwanted effects. This might be accomplished most efficiently if your son is working with a doctor who prescribes these kinds of medications often. Because of the complexity of treating this particular problem, seeing a specialist might be a good idea, at least until a satisfactory medication regimen has been figured out.</p>
<p>No advice, but a brief story on Grand Mal seizures and driving:</p>
<p>Two weeks ago, D and her BF (both 17) were on their way home from a show in the city. They were stuck in major traffic - construction, jersey barriers, etc - on a notoriously busy highway, when D noticed the woman in the car next to her gesturing. The women lowered her window and asked them to call 911. She said she was having a grand mal seizure, she’d had them before and was a nurse so she knew what was going on. D called 911, after a few minutes talking to the dispatcher she was told, “We can’t get to you there because of the traffic. Can you get her car to a place where you can pull off and we can reach you?” At this point the woman was totally unable to drive, so BF got out of their car and into her car and drove it. The woman was curled almost into a fetal position and barely breathing. Eventually they reached a place where they could pull over and the ambulance/police/tow truck could get to them. The woman was doing well enough when she was in the back of the ambulance to ask for BF’s contact info, I assume to thank him. We haven’t heard any more since the incident.</p>
<p>So the whole “don’t drive” thing… really important. The woman was lucky she was in stop-and-go traffic when the seizure hit.</p>
<p>While I have no doubt that the woman had a problem that was impairing her driving and was about to get worse, I am extremely doubtful that it was a grand mal seizure.</p>
<p>During a true seizure of this type, people have no awareness of what’s going on. They also have jerky movements, which are not what your daughter and her boyfriend described.</p>
<p>so far nothing sounds out of the ordinary for seizures, often takes a few different medications to find what works. also sometimes takes a combination of medications. Do you have a comprehensive epilepsy center in your state or region?. there they can do video prolonged eeg monitoring 24-48+ hours which may help to localize the focus of the seizure, which will help in medication selection. certain anti-convulsants are good for specific types of seizures while others are more “broad spectrum” Sometimes even that would not localize the area unless he has an event during the monitoring, but sometimes the irritation will be seen even without an event. As posted above do not let him suddenly stop the medication if side effects are bothersome he should call the doctor for adjustment and or tapering schedule. I assume they have educated you as to what to do if he has another seizure, and along with not driving dont let him lock bathroom door etc while bathing in a tub.</p>
<p>Yes, he is seeing a neurologist. He is in school with a large medical center and is seeing someone in the epilepsy clinic there. He is not very fond of the Dr. however, but I think it is more he is blaming the Dr. as the bearer of news he doesn’t want to hear.</p>
<p>The seizures he had were grand mal–total body convulsions/spasms, no preceding aura, and no memory whatsoever of the event. Luckily the one time he was walking on a crowded street and people stopped to help and call 911, the next one I was with him.</p>
<p>He is focusing so much on the negative and what he can’t do, I get frustrated that he can’t see how much worse it could be. I met a young woman today whose brother at times has 4 or 5 grand mal seizures/day and has a seizure dog that warns him when one is going to occur. I just can’t imagine how that 20 yo is dealing with life.</p>
<p>Again thanks for all input. I do appreciate it.</p>
<p>Speaking from my limited experience, seizure experiences are extremely diverse; I had gran mal seizures but am fine whenever I am on medication (depakote, only in the years I was taken off it did I run into any problems), while a girl I knew a couple years back had several seizures every day, and no medication really helped her (or those that did had very tough side effects).</p>
<p>I second the talking to the neurologist and not driving until a large amount of time has passed with no seizures. My doctor, who’s a pretty well-regarded neurologist, also emphasized that its really important to just generally take care of yourself to reduce the chance of another incident: sleeping 7-8 hours every night is key. Of course, maybe doctors are required to say such things as “sleep, eat healthy, etc.” but it did seem like he was suggesting there was some more concrete connection there.</p>
<p>Oh there is a connection for sure, at least for my son. If he doesn’t get enough sleep…if he drank the night before…if he is stressed…all those things increase his chances of having a seizure. But try telling a 20-something year old to get enough sleep, don’t drink or get stressed!
It was very hard through his teenage years and even now. He liked to skateboard…I was always afraid he would have a seizure while doing that.He rides his bike and takes public transportation, but I am nervous with him riding his bike. Now that he is 24 and living with his girlfriend, she has taking over the role of nagging him (to remember his meds etc etc) so I don’t have to do it anymore!</p>
<p>The common denominator for son’s two seizures was lack of sleep. So he is being careful to try and get enough (and the topamax seems to make him very sleepy anyway). I think he also will need to be very careful with medications. With the first one he had been on Adderall and was trying to finish several projects/papers–really think he probably was taking more in a day than he should have. So he has been on no ADD meds since April which of course adds to the cognitive issues.</p>