Question from a newbie =)

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Hi to all! I'll get right to it, this will probably be kind of long, so bear with me...my husband is 34 years old, and had a seizure at the age of 16. He's had a total of 3 seizures, with years separating them. He has been on Dilantin until recently, but never really took it as prescribed (I think he was prescribed 450mg per day??) When I say he never took it as prescribed, he would take one pill here, one pill there. When it came time for the blood tests, he would "dose up" so they showed the right level. His neurologist always says his EEGs look normal (WITHOUT him taking Dilantin, unbeknownst to the doctor of course) All of his seizures have come after great times of stress or sleep deprivation. He said he does have "auras" prior to seizures, so he knows when they're coming and can get into a safe place/position. One of my questions is...3 seizures in an 18 year period...how does that qualify as epilepsy? The reason I'm here...while i'm sure i'm going to get alot of negative responses to this...he's a truck driver. He knows the dangers, we all do, but it's his living. He's also a smoker, about 2 packs a day, maybe less. The changes in "lifestyle" right now are...(1) he's been drinking crystal light on the go in his water and (2) he's trying to quit smoking, but eating toosie pops and jolly ranchers like crazy. Today, he was very nauseated, light-headed, and felt "seizury" in his words, so he took two Dilantin. when I picked him up and brought him home, he took two more Dilantin, then went to bed (of course, there's no regular sleep schedule). He seems to be feeling a little better now, but he's scared. He always gets scared when he gets these feelings, because he knows the risk he's taking by being a truck driver (killing others, killing himself, etc). I'm wondering if anyone else is in this position, had these feelings, and if an "overdose" of sugar and/or phenylalanine can cause a seizure, or "seizury" feeling? I know I've left many things out, so if you need more info, feel free to ask. It's hard for us to be honest with a doctor in fear of him losing his CDL, as that's our bread and butter. Without it, we'll lose everything. But I personally don't feel he has epilepsy...I think (and I'm not a doctor) that it's more sleep deprivation, stress, and anxiety related. How can we approach a doctor without the fear of losing the CDL? I really want him to be straight with a doctor so we can find out just what is going on. Thanks for any input. Amy

Comments

Re: Question from a newbie =)

Submitted by tookie on Tue, 2006-05-02 - 23:50

Hi Amy.....I'm new here at this site also. I have had Ep for the last 40 years and just wanted to let you know that my doctor has told me that it has always showed up on my EEG.....I have not had sz for 9 years now, but it still shows up on the EEG that I have ep. I think that I would go to another doctor just to make sure that there is not some other cause for the sz. Until then you surely need to help your hubby be a healthy person and remind him to always take his meds ----(popping sz pills whenever you feel like it is not a safe thing for any of us to do)Also, I was a smoker up until 3 months ago when I quit (thank God) and I can tell you that my doctor told me that it can be very hard for some of us to quit. It can really bring out the worse in us and leave us open to having a sz. I quit with the help of prozac-----only 3ml per day (in liquid form even) I craved and ate enough hard candy to choke a horse and gained 20 lbs but I did it---through God of coarse. But, I had tryed several times before without any meds and I can tell you this------even after not having a sz for 9 years I felt like I was going to have one at any second for about 5 days-------thats when I started back smoking again. It was just to much for me to handle. My doctor said that it could happen like that and it did. So, maybe its the not smoking that is making things a little different for your hubby right now. So my advice is to get a new doctor(to make sure it is Ep) and get some extra help with the stopping smoking efforts. Hope that I have helps some. God Bless.

Re: Re: Question from a newbie =)

Submitted by MikeNAmyS on Mon, 2006-05-15 - 15:53

I appreciate everyones comments and suggestions, and just wanted to let you all know that we're in the process of finding a doctor for him. I'm also going to get his records from his current doctor. I'd like to see the EEG interpretation. I myself had a seizure while doing the EEG, and it showed epileptiform activity, but was never diagnosed epileptic. It's just really strange to me how he was diagnosed, and the fact that he hasn't had a seizure in so long, without meds. I'm not sure how this is going to work with finding a new doctor, as I'm being laid off 5/17 due to legislation in PA...our company just can't keep our doors open. And of course, I'm the one that carries insurance, since he's not offered it. So bye bye to the insurance. Too rich for help, too poor to afford it on our own. Isn't that how it usually works? ;) Tookie, I would like to say Thank You for sharing your quitting smoking experience. That's exactly how my hubby felt, and it scared him. He has been able to slow down to a pack a day, which is better than nothing, but his sights are still set on quitting...just have to wait and see how it goes. With the loss of insurance, it's no longer an option to get him on meds to help, so we'll have to see where this leads. Thanks once again for all comments and suggestions. Amy

Hi, Amy. Wow...that was

Submitted by SarahV on Mon, 2006-05-15 - 17:15

Hi, Amy. Wow...that was really quite interesting to read. We are in the same boat. My husband works on the rail road. While he is certified to be a conductor and switchman, he currently works up in the "yard traffic control" tower. His current position, thank God, does not put him or others at much of a risk. He sits at a desk in front of a bunch of computers and talks on the radio to dispachers and people in the rail yard. However, his "schedule" is "no schedule." He is on-call 100% of the time, and at times has less than a two-hour notice. In other words, he can wake up at 7AM, go about his day, then be called at 8PM to be to work at 10PM. And to make matters worse, he often has to pull double shifts at the last minute, too. Just this past weekend, he worked a total of 24 hours within a 36 hour period. Since his seizure trigger is sleep deprivation, his lack of schedule causes him to have lots of seizures. Fortunately, he only has them after awakening, so he always has them at home. Here's our dilema: his current position offers no schedule -- which causes his seizures. But it does offer safety in that he is in an office setting. He wants to return to the yard (switching 30,000 ton rail cars) where he has enough seniority to hold a regular schedule. This option offers a schedule, but very little safety - epileptic or not. He seems to think that by having a regular schedule of sleep and work, his seizures will stop. Truth be told, I am very confident that a regular sleep/work schedule will have a huge positive impact on his epilepsy. However, if for some reason he does have a seizure while in the yard or on the road, the results could be disastrous. Of course, he has never notified his employer of his condition. As in your case, this is our bread and butter. His doctor is aware of his occupation, and does not approve of it. She has not mentioned anything about revoking his driver's license. I don't think that is protocol in our state. I do know, however, that in some states, doctors are required to notify the DMV of your condition. One thing he does do religiously is take his meds. However, with enough sleep deprivation, even his meds won't prevent a seizure. He, too, can tell when they're coming on -- and always with at least enough time for him to sit down (wherever he may be, which was in the bathtub last week.) We've never noticed sugar playing a part in the seizures, but I do work with an epileptic woman who is very sensitive to sugar. Like you, this is a very frustrating "between a rock and a hard place" situation. I don't have an answer for you, but I would recommend that your husband stick to taking his meds regularly. I do, however, empathize with your dilema. It is something that never leaves our minds.