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Epilepsy EducationExperiences With Safety and SeizuresThe Epilepsy Foundation of Idaho values your experience. Have you had an experience dealing with epilepsy that we can learn from? If you have information regarding safety and seizures that can enlighten those who have epilepsy and their friends and family, please submit our form. [NOTE - Form is not active while website is under construction] Here are some experiences that show the value of paying attention to safety issues during a seizure. Karl lives in Klamath Falls, Oregon, USA. He experiences Generalized Tonic Clonic, Absence, Complex Partial seizures. He passes on the following information: Well, I was first diagnosed with epilepsy after a grand mal started while taking the written test to renew my drivers license to drive an 18-wheeler. I was a federal law enforcement officer. I have not been legally able to drive for 26 years. Yes, it meant i needed to move to another job. I got my masters in Silviculture, the aspect of Forestry related to the botanical aspects of growing trees. I also spent eight years of my career as a Computer Systems Analyst. Like many people I did not give up some of what I should have. At one point I was topping a tree and fell to the ground when a seizure started and rolled into a creek. Where I lived when I was first diagnosed I had to go 8 miles each way to work on the west side of the Olympic peninsula in Washington where precipitaion is 165 inches per year. I had two choices, ride a bike or drive to work and I often drove. I haven't since there was a minor fender bender. Two years ago I had my 3rd brain surgery and the doctors are now recommending VNS. This is What We Learned: Jo lives in Missoula, Montana, USA. Her brother has Generalized Tonic Clonic Seizures and lives with Jo, her husband and children. She has encouraged her brother to go to college. She indicates that it can be scary to live with someone who has a seizure disorder, but she has learned to deal with it day by day. Her advice is to take precautions when monitoring someone having a seizure. "Their strength is ten fold so DO NOT and I repeat DO NOT put yourself in easy access to their legs or hands and arms because they can break your bones and severely hurt you. Make sure that they are safe." "Some seizures cause bodily functions to lose control so be prepared for this. ... It is not easy, but if you are having to help out a family member through this ordeal DO NOT GIVE UP ON THEM or they will give up on themselves. Encourage them to do things and obtain certain goals. Never let them down." This is What We Learned: Stephanie from Nampa, Idaho, USA has Absence Seizures. She shares this comment about opening up the eyes of classmates. "I remember when I was younger (in grade school) we had a group of people come in and do a puppet/play about epilepsy. I think it was great. It opened up some peoples eyes and others...well unfortunately just made fun it it. When you are young and someone makes fun of something you have...it feels as if they are making fun of you. Please keep informing people. It makes all the difference. Thank you." NOTE FROM WEBMASTER:Donna from Odessa, Missouri, USA has Absence, Simple Partial, Complex Partial, Atonic, and Myoclonic Seizures. She shares her experience about shower safety, using pillows for protection, and her idea about drinking from a straw is interesting: "I only bathe or shower when someone is close by! When going to take a bath pad the tub with towels..and water never over my lap! Keep extra towels or padding at the bottom of the shower and just outside the shower. I made it that far a couple times and another hit, tile floors are painful. I keep lots of extra pillowing around in the living room. Sometimes I get a feeling a seizure is coming..and have time to get pillows around me as I lay down on the floor and wait. Don't wait until you drop without control. I learned some medications work on particular siezures..like the ones that make my head shake back and forth severly.....and other times make me fall backwards. (my walker did not help then. But, I must take another medication for the other kinds of seizures. I drink with a straw always, an absence seizure is worse with more liquids to swallow in the mouth at the time....a straw limits the amount. I learned to pay attention to the scared feeling that hits the pit of my stomach for "no reason"! Seizures hit soon! I learned not to be taking care of a Rotwiller, even as a pup. I fell down in a seizure and she tried to help but clawed up my face while i was helpless on the ground. Now she is out of bounds for me. I learned a Great HELP....I was given a small Pomeranian puppy..she is by me constantly. Now, during severe siezures...that are pulling my head back in spasms and cutting off my air supply: She barks a particular bark that wakes my sleeping husband or calls him to lift up my head so i can breath easier! I thank God, she has saved my life I believe. I learned------Don't Drive!! (even if it is only 4 blocks away)" NOTE FROM WEBMASTER: Cynthia from Eckman, West Virginia, USA has Generalized Tonic Clonic Seizures. She shares the following: "I have had a total of 16 seizures spanning from 11/1995-4/1999. I found that my seizures were controlled by medication. I was taking Phenytoin 300 mg a day. The medication worked wonderfully. My level of medication in my blood test was never at the levels it should have been. My doctor didn't up my dosage to meet the medical field requirements. He went along with my decision not to adjust my medication since it was working properly. I have been under a doctor's care throughout most of my epilepsy condition. I have been able to control and identify the problems I have that provoked my seizures. I was in 2 car accidents awhile back. I have no history of epilepsy in my family. I have never had any abnormal readings on CT scan or MRI's. I had 14 seizures in total, all seizures occurring in a state of sleep. I had my last 2 seizures while awake. I was in the bath tub with my daughter in the one incident. My dad saved my life and the Good Lord up above. I feel as if I have about the mildest form of epilepsy that there is. My seizures were provoked by alcohol consumption, sleep deprivation and photo sensitivity to video games. I quit doing these things that provoked it and I haven't had a seizure in almost 3 years. 6 months of that has been without medication. I'm still going to my regular doctor. He agrees to allow me to understand and find the solutions to these episodes instead of medically explaning in which he was taught. Every case of epilepsy is different. We the patients, need to be able to help in our diagnose and medical treatment along with the expertise of the medical professionals." Additional Comments: "I believe with self-education and medical supervision, epilepsy can be controlled. I believe people who have epilepsy know their selves and conditions better than anyone." This is What We Learned: Greg from Michigan, USA shares this valuable information about medical ID. "The following actually gives me confidence that I will be taken care of properly in public if I seize. One time after an ambulance visit to ER for a seizure at work, I miniaturized the discharge instructions that hospitals give patients on how families should handle people having a seizure.
I laminated it, punched a hole in the top and place it first on my work ID badge clippy-thing, so that whenever I may have a seizure, it is viewable BEFORE someone sees my name badge and know how to react. I also have a wrist MED ID bracelet with some family and doctor Phone numbers on it. I have not had an unconscious seizure. Knock on wood. So I can even write things down while I seize." This is What We Learned: Michael from Colorado Springs, Colorado, USA had Generalized Tonic Clonic seizures. He was 22 years old. His sister, Amiee, submitted this report to warn us all of the dangers of substituting generic AEDs (anti-epileptic drugs). "Michael had been on Dilantin for many years and lived his last two months seizure free. That is till Michael went to the community health center in our town to refill his prescription, but according to the policies of the center he was given a generic equivalent instead. Michael had a seizure the day after the switch, another one two days later, and then multiple seizures that night from which he never woke up. We did a lot of things wrong, mainly I believe letting ourselves feel like we were in control or becoming sort of numb and uncaring about the seizures. We trusted a doctor we didn't know and who wasn't a neurologist, we trusted a medicine we didn't know anything about, and we trusted that Mike would survive because he always had. I've personally come to the conclusion that there is simply no room for that sort of complacency with this disease. Additional Comments: Why is this medicine still being marketed? I find information all the time stating the dangers of using Dilantin in its generic form so how come it is still being prescribed? This is What We Learned: (See EFI's website Statement on Substitution of Generic Anti-epileptic Drugs). Kathryn, from Methuen, Massachusetts, USA has Generalized Tonic Clonic, Complex Partial, Atonic Seizures. She shares this very valuable experience with us. "I was diagnosed
in April of 2001. Up until March 25, 2002 I continued to drive my car
to and from work, approximately 10 miles, AGAINST my Epileptologists
advise. On this day I stopped at the drug store to pick up a prescription.
I had been out of my car no more than 5 minutes and was inside the drugstore
when I had my first Atonic Seizure. It was on this date
that I gave up driving. Knowing that I could easily have been DRIVING
and not been inside the store scared me and made me realize that indeed
I could have killed an innocent person.
This is What We Learned: Lacee, from El Campo, Texas USA has Complex Partial seizures. Here is her advice. "Do not hold anyone down who is having a seizure. Just protect them from bumping/hitting their head. Tell your coworkers that you have seizures and what happens during one if you know. It really helped me when I had one at work. They helped me out a lot. Do not under any circumstance adjust your medicine on your own. I did so. My seizures were under control for over 4 years, then started up again." This is What We Learned: Lindsay, from Boise, Idaho USA has Generalized Tonic Clonic, Absence, Atonic Seizures, and Myoclonic. She passes on this information about safety and what triggers her seizures. "During a Generalized Tonic Clonic attack, turn the person over on their tummy and protect their head from injury, do not stick anything down anyone's mouth-the initial reaction can be disabling (so to speak). The things that trigger seizures for myself are; lack of sleep, caffeine, alcohol, cigarettes, stress, anxiety, and a lack of exercise. Since I have discovered what to stay away from and what to get more, I am able to live a full and active life, with significantly less seizures." This is What We Learned: Laurie from Firth, Idaho USA has Complex Partial, Atonic Seizures. Her experience regarding driving when your seizures are not controlled is a very powerful lesson for us all. "I had constantly been advised by doctors and family members that I should not drive a car but I didn't want to lose my freedom and kept driving. In the year 1992 I was on the road when I had a seizure and caused a head on accident just a block away from my home on the highway. Both cars were totaled and there was bad damage done. I have not driven since then. I always had this idea in my head that even though my seizures were not controlled something like this could never happen to me. I was sad to see what finally had to happen before I realized I was wrong. Driving is something everyone should remember is a privilege and just one way to have a little privacy in your life. You don't realize what it can do to you when you have to rely on someone else to go anywhere, even if it's just a simple trip to the grocery store. Depression can set in so fast." This is What We Learned: La'Keisha from Orlando, Florida USA has Generalized Tonic Clonic seizures. She gives us this valuable information regarding safety and water: "By me not taking a bath I have saved my self from drowning, so I only take a shower." This
is What We Learned: Gary lives in London, Ontario and has absence seizures. He adds this thought to the experience noted above regarding shower safety. "I have been involved with our local epilepsy organization for several years and the topic of safety while bathing comes up a lot. To me showering is certainly a lot safer than bathing as there is the risk of drowning during a seizure, but one should consider the possibility of falling in a hard bathtub while showering which is also life-threatening. For those with concerns about this possibility, perhaps sitting down in the bathtub during a shower might be more appropriate for safety reasons." Colin from Mareeba, Queensland Australia has Complex Partial seizures. A question was asked on an epilepsy support newsgroup regarding the safety of scuba diving. Here is his own personal experience on this issue: "I have TLE resulting in seizures every couple of years. I used to scuba dive, figuring the risk was acceptable because the chances of having a seizure in the short times I was under water were very low, plus I kept my dives to shallow depths (less than 15 metres). Then I found out that when I have a seizure I often stop breathing, sometimes up to 3-4 minutes, and at best have very irregular breathing for even longer periods (which is one reason I think why I always wake up feeling like I've been hit by a bus). Then I realized that doing this with compressed air in my lungs would be very dangerous because, as you probably know, if you start to surface without breathing out to get rid of expanding air in your lungs, you get embolisms (air bubbles in your blood) within just a few metres. They are very dangerous: strokes, brain damage, heart attacks, the works. Most divers have slightly positive buoyancy, so if you did lose consciousness, you would rise towards the surface and if your breathing wasn't regular you would be asking for an embolism. Neutral buoyancy is difficult to have at all times as it changes as you change depth. Negative buoyancy and you would sink, making matters worse. Even if you had a competent buddy right nearby, they would take you to the surface, again risking embolisms. IMHO I think diving on compressed air at any depth is too dangerous for someone with epilepsy. Even if the seizures are rare, the risk should one happen while underwater are just too great. One later posting on this thread suggested PADI might be considering a special class for people diving with epilepsy. This would surprise me as I think it would not be possible to find a doctor willing to certify a person with epilepsy as fit to dive, especially on compressed air, because of the liability issue in this increasingly litigious world." This is What We Learned: Gloria from Virginia in the USA has Generalized Tonic Clonic, Complex Partial, Myoclonic seizures. She gives us this valuable information: "My seizures are pretty much controlled, by 400 milligrams of Dilantin daily, but yesterday I saw a neurologists and he added Keppra to the Dilantin, It seems that every time I have an infection, namely sinus or viral, it lowers my threshold and I have a seizure, or if I am taking any other drugs, it will lower the effects of the dilantin, and I will have a seizure. Rest (extra rest
is extremely important, how do I know, I did not heed my own advice,
so I have been off work for over a week now, too tired, to move. Note from Webmaster to family and friends of people with seizure disorders - Darryl from New Zealand sent along this sad experience. We think you will agree that this will help many to realize how important it is to be cautious about driving with a seizure disorder. Here is his story: "I have had epilepsy for 27 years. I gained my driving license as a teenager. (They didn't ask if I had epilepsy, so I didn't tell them.) My seizures were ALWAYS preceded by an aura, which lasted from 15 seconds to half an hour before a complex partial seizure - plenty of time to stop the car, so I believed I was safe to drive. That lasted for 15 years, then one day I had a seizure with no warning aura at all. My car (traveling about 25 or 30 mph) crossed a barrier and hit a pedestrian on the other side of the road. His leg was smashed pretty badly and his head went through my windshield, right in front of my face. He wasn't killed, though I have been told that he wants to die. He can no longer walk properly and he can't think properly either.Him and his wife and four children now have to survive on a very small weekly welfare check, although I helped them out financially for as long as I was able. If you have epilepsy it isn't worth the risk to yourself or others to assume you are safe to drive. The suffering that family went through because of me, and will now always endure, must be terrible. From the driver's point of view it's pretty horrible too. I'm a strong 35 year old man, but for a long time after the accident, each morning I would wake up and sit on the edge of my bed crying until I could bring myself to get dressed. The accident plays over and over and over in your mind, and you spend every day in a misery of guilt - knowing that you caused such pain, when by rights you shouldn't have been driving in the first place - and you knew it!!" This is What We Learned: The EFI Webmaster received a request to help find a solution for a mother who called with a child who is photosensitive. The child has quite a few seizures. The family is apparently "really into computers" and wants the child to use the computer as much as possible, but she has more seizures the more she uses the computer. The mother wondered if there are any guidelines regarding computers and seizures - so she could have the computer adjusted to meet the child's needs. alt.support.epilepsy, a newsgroup set up to give support to family, friends and people living with seizure disorders gave the following suggestions: This used to be a major problem for me. What helps is to set the refresh rate of the monitor higher...probably as high as the equipment will allow. 60 hertz refresh rates are standard, and are the worst (for me at least). Setting the refresh rate to higher than 80 hertz should help a lot. 'Hope this helps! Best regards, Photosensitivity has been a problem for me off and on in the past. The photosensitivity includes the computer, and even household decorating is devoid of patterns and we use a lot of natural colors (sandy colors mostly). We adjusted the monitor frequency and that helped. We also eliminated the plaid desktop pattern (the background) to a sky with clouds them which is much more comfortable to my brain. It seems like my brain cannot tolerate a mishmash of bright, bold colors or heavy contrast, so our display screen colors are neutral (grays right now, but beiges are comforting). I only have photosensitivity problems if I am sick and run a temperature for prolonged periods. Then, just playing cards on the computer could trigger a seizure. I have worn sunglasses in the house (not sure if that helped) and closed the curtains to tone down colors, shadows, reflections, etc. If I am having photosensitivity problems, I cannot read as it makes me feel worse. I've also noticed that my own hair in my line of sight seemed to annoy my brain, so I keep my hair very short and out of eye range and that helps. So my suggestions are to change the monitor frequency, avoid bright, bold colors and patterns both in the home and on the computer monitor, try to reduce the amount of "shadows" or filtered light from windows, hair, etc., avoid shiny things (like floors, metals, etc.). If the child wears glasses, he might need to take them off for a while (it helps to dull colors, dull sharp demarcation lines from shadows and patterns, etc.). The parents probably should be looking at the household for things like tiled ceilings, tiles in the bathroom or on the kitchen floors, and in general try to reduce the amount of visual stimulus in every room in the house the child uses (no curtains blowing in the wind, for example). Also keep the hair away from the face so that the hair cannot be seen even in peripheral vision. Barb A suggestion would be to turn down the monitor. I am photosensitive, but only to very bright lights. (I think this is why people have seizures in grocery stores) There may also be a device that someone has invented (or someone can invent) to attach to the screen to "tone" it down a bit. The games and what not are completely out of the question, I personally can't even play my husbands Playstation. There is just to much action..neuro says that is something to just live without. -Amber I looked at several systems before I found this Colour one that seems to have a high enough 'refresh rate' that there is no noticeable Flicker (this screen is made by 'Infinity'). I've seen 'Flicker Guards' advertised at computer supply stores that fit Over the front of the screen, and supposedly reduces Glare? But they don't mention if they'd work for Photosensitive people, just that they reduce Glare.
John from Portadown, Co. Armagh N. Ireland has Generalized Tonic Clonic seizures. He made a very good suggestion to an online epilepsy newsgroup when a person requested safety information for someone with epilepsy wanting to continue with their hobby of fishing. Here was his post
to the newsgroup: This is What We Learned: Gordon from Thornhill, Ontario Canada has Complex Partial seizures. He writes "Part of my (right) Temporal Lobe (Complex Partial) seizures involves a short to medium term Memory problem. I use *2 things to make sure I don't Miss a scheduled Medication dose or don't take *2 doses by mistake! I keep a Paper 'Log' with Morning and evening doses at top, and as I take them I update the 'log'. (I ALSO note any Auras or Other symptoms I might want to discuss with my Doctor, since I take the 'Med. Log' with me to Appointments.) My Drugstore gave me a Weekly Plastic Pill case. It has slots with Day of Week on each 'door'. I load up 6 days' dose at a time. As I take each dose I note the Time in the 'log' and each day leave THAT Door Open (empty). When 4-5 doors are Open I refill all but 1 compartment. This ALSO tells me 6 days in advance when I'll need Prescription REPEATS. 'The Log' was Also useful to try see if there was any 'pattern' to seizure occurrence, if I noted any unusual headaches, extremes of weather (Air Pressure in my case in 1998), or other Potential Triggers I 'suspected' and to 'watch for'." This is What We Learned:
Monique from Calgary, Alberta Canada has Complex Partial seizures. She writes "Since being diagnosed four years ago, I find I have the unique advantage of knowing something about epilepsy and then knowing & watching someone cope with it. By the time I was diagnosed with it, I found that I seem to bypass all the negativity that is common to the disorder. I have found that following the same safety precautions that "everybody else" follows has kept me safe. This and also the use of a dossett to organize my doses has helped me a lot. It also helps to have a strong support system of friends and family can really help during low times. Good luck to all who have been newly diagnosed. It takes time to sort everything out." This is What We Learned: Leigh lives in Idaho and has Generalized Tonic Clonic seizures. She writes "I work at a local hospital in a non-medical department. I carry and also gave out the epilepsy league cards to everyone in my department and told them when abouts my seizures would come. (usually they came in clusters in two at a time.) But when they would come on they would call a code blue. This brought everyone from every department and the public would see. This cost me extra money for the cost of a "code blue". Also they wanted to give me somewhat special treatment. I felt like I did not need the special treatment and to just let me keep going. I am able to function. The epilepsy cards that I did hand out have helped for the next seizures I have had." This is What We Learned: David from Asheville, North Carolina has Generalized Tonic Clonic seizures. He writes " My seizures are linked to a very severe case of "hydrocephalus". Cerebro-Spinal Fluids (CSFs) had collected in my brain for many years because of faulty draining and flowing of these fluids. The collection of these fluids slowly, over time, deformed my brain. The deformity of my brain is possibly the cause of these seizures. I didn't have grand mal seizures until I was 21 years old, right after I graduated from college. Several hours before I would have these seizures, I would feel odd "aura" sensations and smelled smells I knew weren't there. It took me a while to recognize what these feelings actually were, but once I recognized them, I knew to take it easy, not volunteer to fry the hamburger patties on the hot grill, and be sure to eat something whenever I felt weird. I always felt better with something on my stomach. However, I also underwent brain surgery for my hydrocephalus about a year ago, and that has helped me very much. Not all cases of epilepsy are linked to hydrocephalus, however. I am currently taking medications to prevent the seizures." This is What We Learned: Learn to recognize auras, take it easy when feeling an aura, be sure to eat when feeling weird. Alice from New York City has Generalized Tonic Conic and Complex Partial seizures. She writes: "Although my seizures start with an aura (feeling afraid & a sense of foreboding, with a "rising " feeling in my stomach & feeling very spaced out), I have had seizures in places where it could have been very dangerous, ie. the stairs in my dormitory which are not often used. So, I avoid being in places where I am alone- I avoid traveling alone when possible. I deal often with medical personnel who know next to nothing about seizures, esp. complex partials. I miss a lot of schoolwork ( I am a clarinet major at the Juilliard School) and have seizures in the classroom. I make sure that every one of my teachers knows exactly what to do when I have seizures so they (as well as my colleagues) don't freak out. I have seizures in clusters. I take ativan if the seizures get out of contol. BUT I did not know that I had the option of such a med. Instead I used to go to the hospital every week!!! ASK ASK ASK your doctors questions ! And get to a good teaching hospital where the doctors know about what is going on in the neurology world." This is What We Learned:
Virginia is the mother of Teresa who is now an adult living in Falfurrias, Texas, U.S.A. Her daughter has Generalized Tonic Clonic Seizures. Virginia writes: "First I moved everything out of the way so that she won't hit her head. I didn't hold her tongue down because you are not supposed to hold the tongue down. I also kept her calm, put something soft under her head,and didn't hold her down. But I didn't know that you were supposed to turn on the side and let everything drain out. I knew that you were to keep everyone calm. The only thing I didn't know was how the epilepsy attacks got started, I thought they had gotten started because of the parents genes." This is What We Learned: A gentleman from a Large Metropolitan City has Complex Partial Seizures. He writes: (1) Security Guards at a Nearby shopping centre had NO experience or training on 'what to do for a Customer in the Mall having a Seizure. (2) Local BUS DRIVERS have NO training of what a Stroke, Heart Attack or Seizure looks like or what to do (Driver I had when I boarded a bus Mid Szr, CALLED Police: Cost me $20. in court to have the case 'thrown out', $20 home by Taxi from Bus Depot, $35 for one of 2 Doctors to write me Letters to 'take to Court' to (above) have the Case thrown out. (3) Police who responded to the Error call from (2) above (instead of an Ambulance call... Thought I was DRUNK or 'On Drugs' and made my Condition WORSE by 'Terrorizing the 'Drug User' instead of calling 'Medic Alert' to get a Medical I/P. Additional Comments: Only I/P I could make in Police case above was Medic Alert Bracelet used as Id. by Police. .. I had 'slurred speech and depended on it' to save my Life:(Complaint to Med.Alert). I complained about Bus Driver Training (none) to my Local Councillor and Town Mayor. I told them someone w. a Heart Attack or Stroke on a bus would have similar symptoms and need similar (Emerg.) attention.//I no longer USE the buses so do not know if that's fixed. This is What We Learned:
Martin from Bath, Somerset UK has Generalized Tonic Clonic Seizures. He writes: "When I recover from a seizure, I'm OK apart from the fact that I am unable to speak, so I give a thumbs-up to whoever's there (this is usually my parents, and they know that the thumbs-up signal means that I am OK and out of the seizure.) And you might want to stock up on painkillers - I have one hell of a headache when I recover, and usually take some paracetemol and take a nap for a while." This is What We Learned: Kathy from Belleville ON Canada has Generalized Tonic Clonic Seizures. She writes "When I had my first seizure I was 49 years old. The doctors hesitated on giving me valium, which was a blessing as I am allergic to valium. When a person has no medic alert bracelet, extra precaution should be taken. I don't know what would of happened it they had of given me valium." Additional Comments:"Thank you for helping. A lot of the general public still look at epilepsy as some sort of disease, or think you are crazy." This is What We Learned: This is What We Learned: Michael from Saratoga, California has Generalized Tonic Clonic and Complex Partial Seizures. He writes "I have had a very good support
system!!!. I was asked to wear a helmet by my dad and refused with the
help of my doctor. This led my Dad to watch over me as much as he could.
I was very lucky but hit my head several times without real injury. I
tended to take too much risk. I walked
up and down stairs without someone watching over me. I did not rest as
much as I should have physically and that probably helped in having more
seizures. Additional Comments: "I was born with cord around my neck. This created seizures at birth. They came back when I was 10 because of changes in my body. I had 2 grand malls. They were stopped and complex partial seizures came into my life. I had about 120 seizures per month for about 20 years as all the medications failed to bring them under control. In the last 3 years the number of seizures has been reduced dramatically with a combination of Lamictol and Sabril(in trials)from Europe. The two have brought my seizures down from roughly 100 to just 5 to 10 seizures per month. I have gone twice with two long periods of time.(one for 150 days the second for 345 days) I have never repeated those times again. I am now having, as I said 5 to 10 per month. However they only come in 3 days out of the 30 day month and now are very mild except for one that might be just as bad as one of my partial seizures. (the prior drug to Sabril was Nuronton. It was more effective than the prior drugs but far behind Sabril.) I AM IN STUDIES AT STANFORD AND HAVE A VERY VERY TOUGH CASE. The drug has limited success with others in my study.." This is What We Learned: Note from EFI: Gordon from Thornhill, Ontario, Canada has Complex Partial Seizures. He writes: "The Security Guards at a Shopping Centre near me have *NO* training on what to do during a Seizure. AFTER one there, I got 2 Business Cards from Toronto Ep.Association 'coated in Plastic' and carry them with me, for others' reference. BACK OF CARD lists: FIRST AID FOR SEIZURES *Remain Calm- let the seizure run its course *Protect the person from further injury *Do not put anything in their mouth *Roll the person onto their side *On rare occasions, if the seizure lasts more than **5 MINUTES** or repeats, CALL FOR MEDICAL ATTENTION." This is What We Learned: The Epilepsy Foundation of Idaho
has a card just for this purpose. John's wife has Complex Partial Seizures so he says he sort of shares
many of her experiences. He relates an experience about his good friend Robin from Southall, Middlesex, England. Robin has Generalized
Tonic Clonic Seizures. John writes: "The experience I want to relate
was not my wife's but a very good friend, Robin. About 2 years ago Robin
was getting ready for work and started washing his hands. He went into
a seizure and when he awoke the skin on his hand had completely blistered.
He was confused after the Sz and started pulling the skin off. This
was the start of several weeks in hospital and months of phsio. His
hand is now still not quite back to full working order. This is What We Learned: Richard from Sun Valley, Arizona has many types of seizures. Generalized Tonic Clonic, Absence, Simple Partial, Complex Partial, Atonic Seizures, and Myoclonic. Richard commented "Education of those without epilepsy is the number one safety issue that I can think of". Good point Richard. This is What We Learned: This experience comes from a 23 year old woman from Australia. She writes "My son and I have both simple partial and complex partial seizures and as he is only 2 - I find that putting a padlock on the front gate helps, as if I'm not aware of his whereabouts, this method is safer than a possible accident." "My husband say's that just make sure that people don't crowd you after a seizure - I recently started hitting out and wasn't aware of it. Also if you are having an aura and smelling something that isn't pleasant - don't go and burn incense or oils I recently apparently started having another seizure and burnt myself badly." This is What We Learned: Julie from Boise, Idaho writes "I was sitting on the toilet and I felt a tonic clonic seizure coming on. I called to my husband to help me. He did and he didn't. During the seizure my husband held on to my right arm. This caused my shoulder to dislocate and relocate during the seizure. For months I couldn't understand why my arm was hurting so badly. I couldn't put my arm behind my back or raise it very high. I finally went to a specialist who determined that my shoulder had been dislocated. He sent me for physical therapy. After two years of physical therapy my arm is finally back to normal. We learned not to restrain or hold on to a person having a seizure. It would have been better to stand in front of me so I didn't fall forward, without restraining me." This is What We Learned: |
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