Case Incident of Steve Schoner’s seizure 03/25/04, and files on Lamictal.
On the evening of Mar 25th at the KOA campground 20 miles ease of Santa Fe, NM, I suffered a series of grand mal seizures. Currently I am taking Lamictal, an anticonvulsant, and Proscar for prostate enlargement. I lost consciousness instantly with the first episode, and one after another the seizures came on in a series (status epilepticus). I did not wake up from it for 30 to 40 minutes, and came to just as I was being readied for transport to the hospital.
Here is the report from a friend that witnessed it:
From: "Robert Reisener" <>
To: "Steve Schoner" <firstname.lastname@example.org>
Date: Sun, 28 Mar 2004 19:55:16 -0700
Subject: Re: Glorieta or bust
Thanks for your last two emails. You should never feel sorry for something beyond your control. I had the time of my life hunting Glorieta Mesa with you. While your seizure initially scared me, I do not feel discouraged at all. I will be excited to go back with you anytime I can. What an amazing place, and I feel so lucky that you (King of Glorieta) introduced me to it! I truly enjoyed our hikes, our trip to Old Town, the stop at Correo, and all the great conversation surrounding these events! As I told you several times, the campground and hospital people were very kind and made me feel right at home.
It is good that you are learning all you can about seizures, and what triggers them. Here is a summary of what I observed, both immediately before and during the seizure.
After a long day of hiking, we settled down at camp. You assembled your sleeping bag shell, which gave you some difficulty and was a source of minor frustration. To assist you, I had turned on my trucks headlights. After your tent was setup, I reduced the illumination to my parking lights per your suggestion. You started your stove, kindly heated my can of soup, and then began to heat your own food (a can of pork and beans).
I started my portable propane heater, and turned the car’s parking lights off. The flicker of the heater was our only significant source of light. After heating your food, you sat down at the picnic table beside me and directly in front of the heater. While sitting, you attempted to open the can using your can opener. You clearly experienced some confusion at this point, as you had difficulty manipulating the opener and attaching it to the can. I made some comment about the opener being another one of your crazy gadgets (like your sleeping bag cover), and together we laughed about this.
But within a second you slipped into the seizure. I was shocked to see your face tense, and shaking abruptly from left to right. What had been giggling turned into a soft, rhythmic babble as your head shook back and forth. Your face looked extremely tense, and your jaw was clenched. Your eyes were wide open, and drool dripped from both sides of your mouth.
Within seconds, I grabbed your arms and yelled directly to your face: STEVE! STEVE! You stared straight at me with eyes wide open and head still shaking. I worked to lower you to the ground, and was again shocked to find your entire body rigid as a board. Your arms and legs remained completely rigid as I lowered you, and your legs maintained the folded position as if you were still sitting on the picnic table bench. As I related before, imagine a dead cat! I had lowered you to the ground within 1 minute of the seizure’s start.
I stared at you for a few seconds in confusion and disbelief. I yelled HELP! HELP! I reluctantly left you alone at the campsite as I ran to the KOA camp office. I told the KOA employee to call 911 for campsite 21, and then related your general symptoms. This probably took a couple of minutes. In my state of near-panic, however, time is difficult to judge. After the 911 call was placed, I ran back to our campsite where 3 or 4 of our neighboring campers had assembled. I sent someone to call Diane, in order that I would have your medical history ready for the medics. I don’t know if that initial call ever got through to Diane.
We stood above you, trying to comfort you as you thrashed around on the ground. After a couple more minutes, you seemed to regain partial consciousness. Your shaking decreased and you raised your head as if to examine your surroundings. You looked at the people above you, screamed as if scared, and pushed your body away from us. Then you seemed to fall asleep for a minute or two. Once again you seemed to wake up scared, and continued to thrash. As we attempted to calmed you, you responded to us in a soft and mumbled voice, "What is happening to me?". And then you fell asleep. One of our fellow campers, a radiologist doctor, assured me that you were in a deep sleep but would be ultimately be alright.
The ambulances (two of them) arrived at the campsite about 15 minutes after the 911 call. You were still unconscious at the time, alternating between sleep (eyes closed) and minor seizure (minor thrashing with eyes open). The medics loaded you onto the stretcher and carried you into the ambulance. For the next 5 minutes I overheard the medics speaking to you, attempting to gain your attention. Finally, you began to regain consciousness and sort things out. The medics invited me into the ambulance. You asked me "How did we get to Glorieta?" and other similar questions. As we talked you gradually become more lucid.
You were carried to the hospital by ambulance, and I followed behind in my truck. I called Diane to update her en route, although the phone call was broken due to poor reception. You arrived at the hospital about 20 minutes later. I suspect that your disorientation persisted, as in the hospital I heard you remark to the doctor "Schoner? Schoner? I know a Schoner…". That had me worried. But after I entered your room, you became entirely lucid. What a relief it was to have you back! Of course, you were confused about the time lapse that occurred between opening your can and waking up in the ambulance. But that was to be expected.
I am so glad that you do not remember the seizure itself, and that you did not suffer. You looked so scared, and I felt so helpless.
I hope this summary helps. Please let me know if you have any specific questions about the events during your seizure. I will do my best. It all happened fast in the darkness of night, and the quality of my observations were limited by my state of near-panic.
PS. Did you recieve the email and files about Walapai that I sent by
I should add (to my last email) that the extreme stiffness you had may have lasted only for the first couple minutes. After that, your body was more relaxed on the ground, alternating between sleeping and thrashing about. I think the intense seizure which included whimpering and shaking lasted only about 5 minutes or so. But it was a full 20 minutes or so until you started to become lucid, and perhaps regained complete cognition about 40 minutes after the seizure began.
Rob Reisener wrote additional on Tuesday 3Oth of Mar:
I too have been thinking about the trigger of your seizure, and about the possibility that it was triggered by my heater. From what I have read on the internet, the rhythmic flicker of a flame is certainly a possibility. It will be interesting for you to talk to your doctor. I wonder whether he or she will suggest experimenting with triggers in a controlled setting. I certainly would be a relief to identify the trigger.
Regarding your bruises, I really don't recall people holding you down. I grabbed your arms firmly as I tried to "wake" you, and as I lowered you to the ground. But once you were on the ground people were pretty much hands off, trying to comfort you through verbal communication. It was a good group of people, careing and calm. I am very happy they were there. I was extremely worried about you, having never seen a full seizure, but a fellow camper and M.D. assured me that you would be fine. I am so glad that we camped at KOA. If this had happened while camping along the lonely railroad track, I might have really freaked out and slipped into my own seizure! What a mess that would have been!
I can certainly understand your aches and pains, as your entire body was tense to a degree I have never seen before. I clearly remember your jaw clenched. I thought you were really suffering, and I felt so helpless. I am glad you were not aware and do not remember. That experience was overwhelming for me, but now I feel more informed and unafraid. If I should witness another by you or somebody else, I would be much better prepared. I read that millions of Americans suffer from random seizures, so I will probably encounter another someday.
I cleaned out the car and found two things of yours: a green plastic canteen, and a prescription by Kathyryn Guggenheim for Keppra. I will mail these things to you. That Dr. was something else...a real tough cookie.
Additional Mar. 30th 2004
Additional Mar 31st 2004
I can confirm, beyond any doubt, that you seizure lasted more than the typical 5 minutes. Whether it was one long seizure or several smaller ones, it is difficult for me to say. You were sleeping for several minutes prior to the arrival of the ambulance. You seemed to wake up several times from that sleep, disoriented and scared. And each time you fell asleep again.
It is very interesting that you don't remember being transported to the hospital or being unloaded from the ambulance. As you remember, we held a conversation in the ambulance before the ambulance carried you away. I calculate that it took a full 40 minutes since the seizure's start until you were fully coherent and back to normal (minus the muscular aches).
It will be interesting to hear about your doctor's opinion. I hope he/she can provide some useful insight.
April 9th 2004
Today is Friday, the day of your interview with the printer repair shop. I was wondering how things went. In your last email, you wrote... "I have one question to ask. Besides the confusion that I was experiencing with the can opener, did you notice any other physical thing that preceded the seizure, or did it simply come on so rapidly that the physical transition from conscious and seizure was not noticed?" In answer to your question, your transition into seizure occurred almost instantly. I do remember one other little detail about the transition. You were frustrated with the can opener, and immediately before the seizure YOU SIGHED FOR A MOMENT, as if taking a brief break from manipulating the can opener. It was at that moment that the seizure seemed to begin. I may have missed the first few seconds of the seizure, as it was dark and I was sitting next to you and therefore not facing you directly. I think that I first noticed the seizure seconds later, as you were making a very strange humming or continuous grunting sound. I've been thinking about your missing memory during the ambulance ride to the hospital. I suspect you were simply sleeping, physically and mentally exhausted from the seizure itself. The same is probably true of the time you were "out of it" at the campground. The initial seizure, which involved extreme stiffness, drooling, and uncontrolled shaking, may have only lasted 10 minutes or so. The time immediately after the seizure was perhaps as strange as the seizure itself. You seemed to wake, you asked "what is happening to me?", and then thrashed around in fear. After this you fell back into a deep sleep. You went through this cycle a couple times before the ambulance arrived.
I strongly suspect that this episode might be related to Lamictal, which I had just previously 3 days before increased to 75 mg. I am very sensitive to any drug that involves liver metabolism, and Lamictal is metabolized by the liver. My liver function has been diminished by my age, and an auto accident over 30 years ago, and thus serum levels might have been higher than normal for this low dose.
This is what I found regarding this drug.: It CAN cause seizures. This is a rare side effect for an anticonvulsant, but as the following reports from the internet indicate, one of which is from a pharmaceutical source (the ref I have highlighted in red) seizures are a side effect:
I have tried changing from mysoline to lamictal and it caused a lot of problems for me. I have both petit mal
and complex partial seizure. After going on lamictal my
seizures increased and I had 23 seizures in 1 month.
If that wasn't enough I started breaking out with tiny
red lumps on my chest and I had a terrible itch that would
not stop. I then called my Dr. to find out that it was the
lamictal that was causing the rash and itching and I immediately went off the lamictal and back on mysoline. Within 3 to 4 days the rash was gone and I wasn't having
that many seizures compared to being on lamictal.
I later spoke with my pharmacist who told me that lamicatal had been taken off the shelf for a little while because so many people had problems with rashes and seizures increasing.
Be sure to watch for any signs of a rash and itching. I sure hope that the lamictal does a much better job for you than it did me. Best Wishes!!
Dear R. J.,
I started taking lamictal in Jan. of this yr. I have both petit mal and complex partial seizures. I found that the lamictal caused me to have many more seizures than before. I hope that it works for you.
One of the side effects is a rash that makes your skin turn all red and then it begins to itch, that is what happended to me after being on lamictal for 1 month. Keep your eyes open for any redness on your skin and any itching, if this happens call your Dr. or pharmacist immediately. I know that when I got the rash I was taken off lamictal immediately.
I also noticed shortness of breath and a rapid heartbeat while taking lamictal. Be sure to inform your Dr. if this should happen right away.
I sure hope that the lamictal works for you better than it did for me. Here's wishing you well. May God Bless You.
My daughter went on it and it made her have many more seizures than before. In fact, she had to be hospitilized to get them stopped. Went off lamicatal and had no more trouble.
When our child was put on Lamictal, he felt lousy and his seizures increased. After lowering the dose, things improved. We tried going off the Lamical once, and he began having nasty seizures so I assume it is helping.
From: Health Touch:
(In the below see highlight in red under the titleSide Effects of This Medicine)
Some commonly used brand names are:
In the U.S.—
Another commonly used name is LTG .
Lamotrigine (la-MOE-tri-jeen) is used to help control some types of seizures in the treatment of epilepsy. This medicine cannot cure epilepsy and will only work to control seizures for as long as you continue to take it.
Lamotrigine is available only with your doctor's prescription, in the following dosage form:
In deciding to use a medicine, the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. For lamotrigine, the following should be considered:
Allergies—Tell your doctor if you have ever had any unusual or allergic reaction to lamotrigine. Also tell your health care professional if you are allergic to any other substances, such as foods, preservatives, or dyes.
Pregnancy—Lamotrigine has not been studied in pregnant women. However, if you might become pregnant while taking lamotrigine, your doctor may want you to take folic acid supplements. Studies in animals have shown that lamotrigine, even when given to the mother in doses smaller than the largest human dose, may cause some offspring to die. Before taking this medicine, make sure your doctor knows if you are pregnant or if you may become pregnant.
Breast-feeding—Lamotrigine passes into breast milk. However, it is not known whether this medicine causes problems in nursing babies. Mothers who are taking lamotrigine and who wish to breast-feed should discuss this with their doctor.
Children—Skin rashes may be more likely to occur in children younger than 16 years of age than in adults. Some of these rashes may be serious and life-threatening. It is especially important that you discuss with the child's doctor the good that this medicine may do as well as the risks of using it.
Older adults—Lamotrigine is removed from the body more slowly in elderly people than in younger people. Higher blood levels of the medicine may occur, which may increase the chance of unwanted effects. Your doctor may give you a different lamotrigine dose than a younger person would receive.
Other medicines—Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary. When you are taking lamotrigine, it is especially important that your health care professional know if you are taking any of the following:
Other medical problems—The presence of other medical problems may affect the use of lamotrigine. Make sure you tell your doctor if you have any other medical problems, especially:
Take lamotrigine only as directed by your doctorto help your condition as much as possible and to decrease the chance of unwanted effects. Do not take more or less of this medicine, and do not take it more or less often than your doctor ordered.
Lamotrigine may be taken with or without food or on a full or empty stomach. However, if your doctor tells you to take the medicine a certain way, take it exactly as directed.
If you are taking the chewable/dispersible tablets : These tablets may be swallowed whole, chewed and swallowed, or dispersed in a small amount of liquid and swallowed. If the tablets are chewed, they should be followed with a small amount of water or diluted fruit juice to aid in swallowing. If tablets are to be dispersed: Place tablets in enough water or diluted fruit juice to cover the tablets (about a teaspoonful), wait until the tablets are completely dispersed (about 1 minute), then swirl the solution and swallow it immediately.
Dosing—The dose of lamotrigine will be different for different patients, and depends on what other medicines you are taking. Follow your doctor's orders or the directions on the label . The following information includes only the average doses of lamotrigine. If your dose is different, do not change it unless your doctor tells you to do so.
The number of tablets that you take depends on the strength of the medicine.
Missed dose—If you miss a dose of this medicine, take it as soon as possible. However, if it is almost time for your next dose, skip the missed dose and go back to your regular dosing schedule. Do not double doses.
Storage—To store this medicine:
It is important that your doctor check your progress at regular visits, especially during the first few months of your treatment with lamotrigine. This will allow your doctor to change your dose, if necessary, and will help reduce any unwanted effects.
This medicine may increase the effects of alcohol and other central nervous system (CNS) depressants (medicines that make you drowsy or less alert). Some examples of CNS depressants are antihistamines or medicine for hay fever, other allergies, or colds; sedatives, tranquilizers, or sleeping medicine; prescription pain medicine or narcotics; barbiturates; medicine for seizures; muscle relaxants; or anesthetics, including some dental anesthetics. Check with your doctor before taking any of the above while you are using this medicine .
Lamotrigine may cause blurred vision, double vision, clumsiness, unsteadiness, dizziness, or drowsiness. Make sure you know how you react to this medicine before you drive, use machines, or do anything else that could be dangerous if you are not alert, well-coordinated, or able to see well . If these reactions are especially bothersome, check with your doctor.
Skin rash may be a sign of a serious unwanted effect. Check with your doctor immediately if you develop a rash, fever, flu-like symptoms, or swollen glands, or if your seizures increase .
Do not stop taking lamotrigine without first checking with your doctor . Stopping this medicine suddenly may cause your seizures to return or to occur more often. Your doctor may want you to gradually reduce the amount you are taking before stopping completely.
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Check with your doctor immediately if any of the following side effects occur:
Increase in seizures
Blistering, peeling, or loosening of skin; dark-colored urine; fever, chills, and/or sore throat; flu-like symptoms; itching; muscle cramps, pain, or weakness; red or irritated eyes; small red or purple spots on skin; sores, ulcers, or white spots on lips or in mouth; swelling of face, mouth, hands, or feet; swollen lymph nodes; trouble in breathing; unusual bleeding or bruising; unusual tiredness or weakness; yellow eyes or skin
Symptoms of overdose
Clumsiness or unsteadiness (severe); coma; continuous, uncontrolled back and forth and/or rolling eye movements (severe); dizziness (severe); drowsiness (severe); dryness of mouth (severe); headache (severe); increased heart rate; slurred speech (severe)
Check with your doctor as soon as possible if any of the following side effects occur:
Blurred or double vision or other changes in vision; clumsiness or unsteadiness; poor coordination
Anxiety, confusion, depression, irritability, or other mood or mental changes; chest pain; continuous, uncontrolled back and forth and/or rolling eye movements; infection
Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome:
Dizziness (more common in women); drowsiness; headache; nausea; vomiting
Constipation; diarrhea; dryness of mouth; indigestion; loss of strength; menstrual pain; pain; runny nose; slurred speech; trembling or shaking; trouble in sleeping; unusual weight loss
Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.
One must be mindful as to what effect prescribed drugs might have with regards to certain patients who are prone to have reactions to medications. Sometimes, these drugs can do the opposite of what is intended. Lamictal may not only have triggered this seizure, but it also has affected me in such a way that dizziness is always present in the hours after taking it. It does not cause drowsiness, but just the opposite… it stimulates, keeping me awake if I take it at night. Noted also is blurry and double vision especially in the right eye.
But all of these effects may be directly related to the initial condition of ADEM that I suffered on 01/06/03. But it seems odd that the seizure that I suffered came soon after I increased the Lamictal dose from 50mg to 75mg three days before the seizure.
However, I was also told that seizures can result from scarring on the brain biopsy site, in my case the frontal lobe, where a significantly large biopsy was done on 01/10/03