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Medical Forum / Diseases and Disorders / Epilepsy / February 2006No origin
Last month as a 51 year old man, I had my first Grand Mal Seizure, stopped breathing, and another one an hour later at the hospital. They could find no cause, EEG, infection control did a spinal tap, nothing. The MRI did find some evidence of some silent strokes which was surprising as I work out regularly, have low blood pressure and low pulse rate. My significant other is freaked out. She goes crazy if I want to run on the beach, jog to the health club, or do anything alone. For the last month I've felt perfect. I'm on dilantin, 600 milligrams a day. I didn't register a reasonable level with less. It has me very perplexed and rather annoyed. Beach, I am so sorry you started having seizures out of the blue. The strokes could be part of it. I know that someone having had a stroke is about 22% more likely to have seizures. I am not sure if that is also consistent with silent strokes. How are you doing on the Dilantin? Do you see a neurologist? Does he have a plan for getting you off medication at some point? I wish you well. I can see why you are annoyed and perplexed. IS there a way to try and placate your significant other, maybe carrying a cell phone when you run? letting her know about how long you will be gone, carrying ID? It is great you do the running and are fit, keep up the good work. Hang in there. Gin > Last month as a 51 year old man, I had my first Grand Mal Seizure, > stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 12 lines] > > It has me very perplexed and rather annoyed. Try including your significant other in your next doctors appointment. Ask specific questions about whether these activities are too risky, safe, or necessary for good health. If the doctor agrees with you, you have valid ammo the next time your other tries to clamp down on you too tight. I don't think epilepsy should interfere with most human activities. I would assume that both of these action would be a good stress reliever and help you avoid seizures. But remember others in your life are scared *less. They have to shoulder many emotions but they don't have to live with the consequences of withdrawing from life completely. Over protection is natural but not healthy, for either of you.  SignatureDave Keays Maybe a medicalert bracelet? I don't know if they're any good but I bought one. (My story is similar to yours except for the strokes. I started 3 months ago and I'm PO'ed.) My hope is that I never wake up with someone holding my tongue in order to prevent me from swallowing it. Perhaps you had some warning prior to your seizure? Felt funny or confused? That might be a odd sort of comfort because at least you get some lead time during which you could find a safe place, maybe pull your semi over to the side of the road or contact the control tower for landing clearance. Good luck. I hope you never have another seizure and that goes for all of you all. Even if I have to have them, I hope I wake up tomorrow as the only remaining member of this group. I haven't had a <Medic> need information on my Bracelet since 1998, but from 1993 (onset) to 1996, it more than paid for itself in providing Drs. at Emerg. with information on what meds. I take (not doses), Dr. and Neuro contacts, and Family Contacts. There's only a one time cost from about $35. up, depending on type chosen. And Drs. can call Collect from anywhere in the world to them, so you have protection when you travel too. G./ > Last month as a 51 year old man, I had my first Grand Mal Seizure, > stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 12 lines] > > It has me very perplexed and rather annoyed. I'm not a doctor, so perhaps there's a good reason for that treatment that I'm not aware of. However, it's unclear to me as to why you are being treated with Dilantin. From the information that you posted including the tests results, you appear to have suffered an extended one-time event of unknown cause. Assuming a possible repeat isn't indicated by that evidence in my admittedly inexperienced opinion. Are you being treated by a neurologist? Have you had an overnight stay in a hospital while wired for an EEG and had a battery of tests? That's a more comprehensive test than the usual shorter EEG which I assume is the type you mentioned above. >> Last month as a 51 year old man, I had my first Grand Mal Seizure, >> stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 24 lines] > a more comprehensive test than the usual shorter EEG which I assume is > the type you mentioned above. 5 Days in the hospital. Yes, I had a neurologist, but he kicked me out because I have an ongoing car accident and he doesn't want to be involved. My endocrinologist said that was a wrong thing for the Neurologist to do, he was treating me and abanded me me. > > [quoted text clipped - 31 lines] > involved. My endocrinologist said that was a wrong thing for the > Neurologist to do, he was treating me and abanded me me. That's a bit more complicated than it even seemed at first. Are you saying that you were already being treated for an endocrine disorder (diabetes perhaps?) before you had the seizure? and a hospital stay is one thing, but I meant a battery of tests specifically under the direction of a neurologist to diagnose epilepsy and those don't normally take 5 days. As far as the car, the neurologist would be legally responsible for reporting a seizure condition to the licensing authorities depending upon the legal juridiction where you live and the laws there. You would lose your driving privileges until you had been seizure-free for a legally set period of time. I don't know if that's what you might be talking about with "ongoing car accident" or not. I know it's rough when you're first diagnosed with a problem like this. It is for all of us and I know it sure was for me. Rough on my wife too, maybe more so than on me. Over time, one gains a different perpective on the situation, but it's always there in the background. >> >> [quoted text clipped - 35 lines] > saying that you were already being treated for an endocrine disorder > (diabetes perhaps?) I've had osteoporosis, unusual since I've worked out for years and eat a healthy vegetarian diet. My brother, not a vegetarian has it worse than me. before you had the seizure? and a hospital stay is > one thing, but I meant a battery of tests specifically under the > direction of a neurologist to diagnose epilepsy and those don't normally > take 5 days. I wanted to leave the next day, they wouldn't let me. As far as the car, the neurologist would be legally > responsible for reporting a seizure condition to the licensing > authorities depending upon the legal juridiction where you live and the > laws there. You would lose your driving privileges until you had been > seizure-free for a legally set period of time. I don't know if that's > what you might be talking about with "ongoing car accident" or not. Nothing to do with hit. My car was hit by a car going 90 mph in a 35 mph zone. > I know it's rough when you're first diagnosed with a problem like this. > It is for all of us and I know it sure was for me. Rough on my wife too, > maybe more so than on me. Over time, one gains a different perpective on > the situation, but it's always there in the background. It seems rougher on my wife. She's freaked out and worried! Of course, I have no idea why it happened in the first place. I feel fine and don't think it will ever happen again. >>>>> Last month as a 51 year old man, I had my first Grand Mal Seizure, >>>>> stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 38 lines] > healthy vegetarian diet. My brother, not a vegetarian has it worse than > me. What does that have to do with an endocrinologist? Just curious. >> before you had the seizure? and a hospital stay is >> one thing, but I meant a battery of tests specifically under the >> direction of a neurologist to diagnose epilepsy and those don't >> normally take 5 days. > > I wanted to leave the next day, they wouldn't let me. Wasn't the 5 days when you had the "seizure"? Then you don't know one way or the other about those tests I assume? >> As far as the car, the neurologist would be legally >> responsible for reporting a seizure condition to the licensing [quoted text clipped - 6 lines] > Nothing to do with hit. My car was hit by a car going 90 mph in a 35 > mph zone. What in the world would that have to do with the neurologist "kicking you out" or "being involved"? Is this all for real? >> I know it's rough when you're first diagnosed with a problem like >> this. It is for all of us and I know it sure was for me. Rough on my [quoted text clipped - 5 lines] > > I feel fine and don't think it will ever happen again. Then why are/were you taking 600mg? Dilantin per day? >>>>>> Last month as a 51 year old man, I had my first Grand Mal Seizure, >>>>>> stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 40 lines] >> > What does that have to do with an endocrinologist? Just curious. I just discussed it with my endocrinologist, who I really like. It has nothing to do with my endocrinologist. >>> before you had the seizure? and a hospital stay is >>> one thing, but I meant a battery of tests specifically under the >>> direction of a neurologist to diagnose epilepsy and those don't >>> normally take 5 days. I have no idea why they kept me so long. I wanted to leave day 2. They said if I left it would be against medical advice and insurance wouldn't pay for it. >> I wanted to leave the next day, they wouldn't let me. >> > Wasn't the 5 days when you had the "seizure"? Then you don't know one > way or the other about those tests I assume? I know all the tests were negative. EKG, spinal taps, etc. They had no reason for it. >>> As far as the car, the neurologist would be legally >>> responsible for reporting a seizure condition to the licensing [quoted text clipped - 9 lines] > What in the world would that have to do with the neurologist "kicking > you out" or "being involved"? Is this all for real? He was afraid of being called to testify. My brother is an attorney and said it's too late. Once he treated me, he's subject to discovery. >>> I know it's rough when you're first diagnosed with a problem like >>> this. It is for all of us and I know it sure was for me. Rough on my [quoted text clipped - 7 lines] >> > Then why are/were you taking 600mg? Dilantin per day? They started with 400 mg, then 500 mg, but my level on blood testing was only 3.6 In fact they accused me of only pretending to take the medication, like I was some kind of lunatic. At 600 mg I got to the therapeutic dosage. It sound from you folks reaction they did overkill with me. >>>>>>> Last month as a 51 year old man, I had my first Grand Mal >>>>>>> Seizure, stopped breathing, and another one an hour later at the [quoted text clipped - 44 lines] > I just discussed it with my endocrinologist, who I really like. It has > nothing to do with my endocrinologist. People who see a specialist usually do so for a reason. >>>> before you had the seizure? and a hospital stay is >>>> one thing, but I meant a battery of tests specifically under the [quoted text clipped - 4 lines] > They said if I left it would be against medical advice and insurance > wouldn't pay for it. They do that so you would be there for observation in case of a recurrence of whatever it was within that period of time. Nobody would have been very happy if they had let you go and the problem recurred right afterwards. >>> I wanted to leave the next day, they wouldn't let me. >>> [quoted text clipped - 3 lines] > I know all the tests were negative. EKG, spinal taps, etc. They had no > reason for it. Were you in the car when it was hit? >>>> As far as the car, the neurologist would be legally >>>> responsible for reporting a seizure condition to the licensing [quoted text clipped - 12 lines] > He was afraid of being called to testify. My brother is an attorney and > said it's too late. Once he treated me, he's subject to discovery. How in the world would he even know about the car wreck much less be afraid to testify about your medical condition? This all isn't making a whole lot of sense. >>>> I know it's rough when you're first diagnosed with a problem like >>>> this. It is for all of us and I know it sure was for me. Rough on my [quoted text clipped - 12 lines] > medication, like I was some kind of lunatic. At 600 mg I got to the > therapeutic dosage. What is your level now then? > It sound from you folks reaction they did overkill with me. My own reaction is that none of this is making any sense. >>>>>>>> Last month as a 51 year old man, I had my first Grand Mal >>>>>>>> Seizure, stopped breathing, and another one an hour later at the [quoted text clipped - 46 lines] >> > People who see a specialist usually do so for a reason. Yes, I've been seeing an endocrinologist for years for osteoporosis. > > > [quoted text clipped - 35 lines] >>> What in the world would that have to do with the neurologist "kicking >>> you out" or "being involved"? Is this all for real? Yes. >> He was afraid of being called to testify. My brother is an attorney >> and said it's too late. Once he treated me, he's subject to discovery. >> > How in the world would he even know about the car wreck much less be > afraid to testify about your medical condition? This all isn't making a > whole lot of sense. Originally I asked if this was related to the car accident. It was the only trauma that I could think of. >>>>> I know it's rough when you're first diagnosed with a problem like >>>>> this. It is for all of us and I know it sure was for me. Rough on [quoted text clipped - 8 lines] >>>> >>> Then why are/were you taking 600mg? Dilantin per day? To prevent a reoccurrence. >> They started with 400 mg, then 500 mg, but my level on blood testing >> was only 3.6 In fact they accused me of only pretending to take the >> medication, like I was some kind of lunatic. At 600 mg I got to the >> therapeutic dosage. >> > What is your level now then? 11.3 >> It sound from you folks reaction they did overkill with me. >> > My own reaction is that none of this is making any sense. I think they are over reacting, and unfortunately, I'm stuck with driving restrictions and paranoid people around me. >>>>>>>>> Last month as a 51 year old man, I had my first Grand Mal >>>>>>>>> Seizure, stopped breathing, and another one an hour later at [quoted text clipped - 48 lines] > > Yes, I've been seeing an endocrinologist for years for osteoporosis. That makes sense. Was the possibility considered that there was any connection between that treatment and your seizure episode? >>>>>> before you had the seizure? and a hospital stay is >>>>>> one thing, but I meant a battery of tests specifically under the [quoted text clipped - 44 lines] > Originally I asked if this was related to the car accident. It was the > only trauma that I could think of. Then the accident happened sometime prior to your seizure episode I take it. Were you injured and/or taken to a hospital at that time? or is this 5-day stay and seizure & car accident all part of the same happening? From everything you've said, it sounds like you don't have that particular neurologist as one of your doctors anymore. Who is signing off on your prescription refills if that's the case? >>>>>> I know it's rough when you're first diagnosed with a problem like >>>>>> this. It is for all of us and I know it sure was for me. Rough on [quoted text clipped - 9 lines] >>>> Then why are/were you taking 600mg? Dilantin per day? > To prevent a reoccurrence. Does that mean that you have been formally diagnosed with epilepsy? Dilantin is used to treat epilepsy and some other conditions, but that has to follow from a diagnosis. That diagnosis can be made, after symptoms are displayed, on the basis of various tests (EEG, MRI, etc) or solely on the basis of symptoms. But such diagnosis on the basis of only one event seems a bit quick to me, although I repeat that I am not a doctor. A large number of us have partial seizures in addition to the grand mals and the partials can be used as a sort of measuring stick to know if a drug is working. In your case and since you don't have any partials or auras, you don't really know if the Dilantin is any better than a placebo would be since you might have never had another episode even without it. >>> They started with 400 mg, then 500 mg, but my level on blood testing >>> was only 3.6 In fact they accused me of only pretending to take the [quoted text clipped - 3 lines] >> What is your level now then? > 11.3 That's within, but at the low end of the range. Of course, a totally healthy person could also take it and build up to a therapeutic level resulting in no beneficial results and have its side-effects. You haven't mentioned having any of the side-effects such as the mental fog it can create. Dilantin has another side-effect that it sounds like you may not be aware of. It interferes with calcium metabolism and is a risk factor for osteoporosis. My own neurologist has encouraged me to take vitamin D supplements and get a lot of calcium in my diet. >>> It sound from you folks reaction they did overkill with me. >>> >> My own reaction is that none of this is making any sense. > > I think they are over reacting, and unfortunately, I'm stuck with > driving restrictions and paranoid people around me. >>>>>>>>>> Last month as a 51 year old man, I had my first Grand Mal >>>>>>>>>> Seizure, stopped breathing, and another one an hour later at [quoted text clipped - 77 lines] >>>> >>> Were you in the car when it was hit? Yes, I was wearing a seat belt. The next day I couldn't feel my pinkie, my nerve in my neck was damaged. >>>>>>> As far as the car, the neurologist would be legally >>>>>>> responsible for reporting a seizure condition to the licensing [quoted text clipped - 3 lines] >>>>>>> don't know if that's what you might be talking about with >>>>>>> "ongoing car accident" or not. Yes, the neurologist doesn't want to risk getting called or having to testify. >>>>>> Nothing to do with hit. My car was hit by a car going 90 mph in a >>>>>> 35 mph zone. >>>>>> >>>>> What in the world would that have to do with the neurologist >>>>> "kicking you out" or "being involved"? Is this all for real? He doesn't want to be called. >> Yes. >> [quoted text clipped - 11 lines] > it. Were you injured and/or taken to a hospital at that time? or is this > 5-day stay and seizure & car accident all part of the same happening? That was January, 2004, still not settled. > From everything you've said, it sounds like you don't have that > particular neurologist as one of your doctors anymore. Who is signing > off on your prescription refills if that's the case? Not sure, my primary care doctor signed my blood tests, and Im seeing the neurologist who's handling my court case. There's a problem, he's far away and I can't drive, and it's not unusual for him to keep me waiting 3 hours. >>>>>>> I know it's rough when you're first diagnosed with a problem like >>>>>>> this. It is for all of us and I know it sure was for me. Rough on [quoted text clipped - 8 lines] >>>>>> >>>>> Then why are/were you taking 600mg? Dilantin per day? The doctors and my wife insist on it. >> To prevent a reoccurrence. >> > Does that mean that you have been formally diagnosed with epilepsy? The primary care doctor said having a seizure is the definition of epilepsy, but the neurologist said I don't have epilepsy. > Dilantin is used to treat epilepsy and some other conditions, but that > has to follow from a diagnosis. I don't understand why they did what they did. That diagnosis can be made, after > symptoms are displayed, on the basis of various tests (EEG, MRI, etc) or > solely on the basis of symptoms. But such diagnosis on the basis of only > one event seems a bit quick to me, although I repeat that I am not a > doctor. Interesting, and confusing to me. > A large number of us have partial seizures in addition to the grand mals > and the partials can be used as a sort of measuring stick to know if a > drug is working. In your case and since you don't have any partials or > auras, you don't really know if the Dilantin is any better than a > placebo would be since you might have never had another episode even > without it. No partials, two seizures in an hour of each other. The next day I had spasms going around my right upper side of my back like an octagonal, firing quickly. >>>> They started with 400 mg, then 500 mg, but my level on blood testing >>>> was only 3.6 In fact they accused me of only pretending to take the [quoted text clipped - 10 lines] > haven't mentioned having any of the side-effects such as the mental fog > it can create. Absolutely no side effects > Dilantin has another side-effect that it sounds like you may not be > aware of. It interferes with calcium metabolism and is a risk factor for > osteoporosis. My own neurologist has encouraged me to take vitamin D > supplements and get a lot of calcium in my diet. That's very interesting. >>>> It sound from you folks reaction they did overkill with me. >>>> >>> My own reaction is that none of this is making any sense. I don't understand either. >> I think they are over reacting, and unfortunately, I'm stuck with >> driving restrictions and paranoid people around me. Thanks for the feedback. [snip] > As far as the car, the neurologist would be legally >> responsible for reporting a seizure condition to the licensing [quoted text clipped - 6 lines] > Nothing to do with hit. My car was hit by a car going 90 mph in a 35 > mph zone. In the state of California, USA it doesn't matter. I'm not a legal expert but my take as a layman is that the unspoken rule of thumb is that you must be 6 months seizure free to maintain a license. Any loss-of-conscience needs to be reported in a timely manner by a licensed doctor. >> I know it's rough when you're first diagnosed with a problem like >> this. It is for all of us and I know it sure was for me. Rough on my [quoted text clipped - 3 lines] > It seems rougher on my wife. She's freaked out and worried! Of course, > I have no idea why it happened in the first place. It is worse to see a seizure than to have one. I didn't realize how scary it is until I saw someone else having one. > I feel fine and don't think it will ever happen again. It's rather easy to come to that conclusion. Without any pre-ictal phenomenon (auras), the chaos afterwards, or a witness most of us would not know that we had a seizure. The only time I was sure was when I came to in an ER or an ambulance. Otherwise it just seemed that I phased out. Since nothing "wrong" is obvious, it's just too easy to think there is nothing wrong without some medical assistance. SignatureDave Keays I also have grand mal sizures, and I know what you mean my husband and family dosnt like me being by myself. But life goes on, I tell them I can have them here right here beside me ,Ive had them here by myself, and it scare me to death. But Im trying not to let them take over my life. Oh by the way Im 52. Just be careful with the dilantin it almost kill me about 4 years ago. It was doing damage to my liver I knew I was dying but the dr didnt know why. Because I wasnt in any pain. Just getting very weak and didnt want to eat. Took them a month to fine it. Then I was in the hosiptal for over 2 weeks getting my body built back up. Was very sick and throwing up lots of blood. Make sure the dr is doing blood work for this med. please. Phyllis >Last month as a 51 year old man, I had my first Grand Mal Seizure, >stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 12 lines] > >It has me very perplexed and rather annoyed. SignaturePhyllis Garlnad > I also have grand mal sizures, and I know what you mean my husband and family > dosnt like me being by myself. But life goes on, I tell them I can have them [quoted text clipped - 6 lines] > getting my body built back up. Was very sick and throwing up lots of blood. > Make sure the dr is doing blood work for this med. please. Phyllis Much thanks for the information. >>Last month as a 51 year old man, I had my first Grand Mal Seizure, >>stopped breathing, and another one an hour later at the hospital. [quoted text clipped - 12 lines] >> >>It has me very perplexed and rather annoyed. > I also have grand mal sizures, and I know what you mean my husband and family > dosnt like me being by myself. But life goes on, I tell them I can have them [quoted text clipped - 23 lines] >> >>It has me very perplexed and rather annoyed. Based on feedback here I've seen another neurologist who is reviewing my case. He said the Dilantin was because I had TWO seizures, though they were close to each other. He said that the other doctors didn't understand dilantin, that it's blood levels go up exponentially and take about three weeks. He's redoing my eeg and looking at my MRI. He has one from a few months ago. If it's normal he's thinking he'll take me off dilantin. After reading Phyllis's comments I really would prefer to be off it. I appreciate the comments from everyone, and yes, I've been 100% honest and I'm confused. I don't like my previous medical care, especially when the nurse suggested I was only pretending to take my dilantin. My new neurologist said it was because they didn't understand dilantin. Thanks all. I'll keep you informed as to the results and I appreciate the feedback. >> I also have grand mal sizures, and I know what you mean my husband and >> family [quoted text clipped - 39 lines] > off dilantin. After reading Phyllis's comments I really would prefer to > be off it. You are not alone. Few want to live with the consequences of a drug. I think that is why I am so confused about drug abuse. I either understand or sympathize with children who are hooked before adulthood. But why would any mature adult or semi-mature teenager want to try it? > I appreciate the comments from everyone, and yes, I've been 100% honest > and I'm confused. I don't like my previous medical care, especially > when the nurse suggested I was only pretending to take my dilantin. My > new neurologist said it was because they didn't understand dilantin. Doesn't it feel good when you finally find a doctor you trust? You don't have to question all their decisions. You can do any research you need later when it fits well with you. You don't feel the need to argue with the doctor because you are sure their goals are either similar with yours. The vast majority of neurologists out there are doctors I don't feel comfortable with. I know most of those are not bad people or bad doctors. But it is so much easier to trust the advice of someone you think fits well into your groove. > Thanks all. I'll keep you informed as to the results and I appreciate > the feedback. I wish I had access to this group when I first started having seizures. Good Luck! SignatureDave Keays
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