Hi from a concerned brother
I'm joining in the hope that I can get my sister involved in this (or other) internet forums. She has seizures that appear to be triggered by stress, lack of sleep, right before period, alcohol, caffeine, and doing lots of housework (probably stress) on one day. I'm concerned and want to help.
It looks like your forum is the biggest on the net. I have done a bit of lurking. I may post questions on her behalf, but hopefully I can get her addicted to the point where she can really learn herself and take advantage of this sort of resource. As a long time forum junkie I have learned that internet communities are often the best place to get information, as it is full of real people with real interests (or problems) that they are all working on solving. It is rare that anyone's problems or circumstances are unique, and is almost as rare that there is no information out there. Often there are solutions that you haven't even contemplated.
Certainly in this case I don't think that you can rely on a doctor to do all your thinking for you. You have to take ownership of your condition and do your research yourself. And with forums and google it is often easier, cheaper and better.
Anyway, thanks for providing this and sharing.
Hi Bigbro, welcome! You have come to a great place, everyone here is really knowledgeable, friendly and helpful. I know this site has been a huge help to me so hopefully you and your sister will too.
ps Good to see another Aussie! I'm in Townsville.
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You are one SMART big brother! And a VERY caring big brother, too.
Welcome to CWE. Please feel free to check out all the nooks and crannies, like the Library and the Kitchen for really good information (especially about diets and such), and the Padded Room is great for venting when needed (trust me, we all need to.)
Mr B, our host, has made us an AWESOME home here. Feel free to check it out here.
PLEASE feel free to talk your sister into joining CWE. There are caregivers and E patients alike here. I'm an E patient, some of the other mods are E patients, others are caregivers....you get the idea.
You talk about the triggers that you think your sister has--you're fairly sure of them. I'm thinking you might like a list of things that she ought to put into a daily E journal to help herself AND her doctor. That said, be prepared for a nice long list...*grinning*
1. Sleep. List how much & when.
2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.
3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.
4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM.
5. Stress List when it occurred, and what happened.
6. Exercise List what you did, when, and any reactions.
7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.
8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.
9. Meds (of ANY kind). List the dosages, and when taken.
Responses to the list above
1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.
2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).
3. Look into a glare screen or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.
4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.
5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.
6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.
7, 8 & 9. 'Nuff said.
OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.
Hopefully this helps you out some...........
I learned on my own, what is helping my daughter. We were lucky enough to go to two of the top Univ. Med Centers and they did not shed any light on her situation. It has been through keeping a journal, and using my intuition, reading other neurologist discussions, that I have found my answers.
My daughter was having 6 seizures a month, while under conventional doctors care. Now med free, making nutritional changes, neurofeedback, and adding supplements for brain and body health, she has been seizure free for three months. It hasn't been a quick change, but it continues to improve over time.
I do hope you can encourage your sister to come visit, and be proactive in her health. There is HOPE.
Neurofeedback - Rebecca's Story
Knowledge is power and knowledge shared is power multiplied.
-- Bob Noyce
Last edited by RobinN; 01-18-2010 at 07:54 PM.
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Sorry for taking so long to reply - thank you for your in-depth replies! I was about to start a thread on low-stress jobs, but then I googled
It's good forum etiquette to not create threads if there is an identical thread in existence, so I stopped. I'm really busy at work atm anyway, and will be for another week.
Thanks VERY much meetz, for that list. I'm digesting it now. It all sounds logical. While there is nothing there I'm really unfamiliar with as a seizure trigger, it's good to refresh and get a comprehensive list.
Another thing to put on there is probably sleep walking. This is something that she does and is E related, I can't remember what the relationship is exactly (it's something like if she sleep walks, she will get a seizure, or she never gets a seizure without sleep walking, or something like that).
I don't know if she gets auras. The blue tinted polarized glasses was new to me. People have suggested diets to her before, but she has shrugged that off as "only for kids". The eating is definitely true - she needs to eat before bed for sure. Interesting that you suggest both carb and protein. Makes sense, because as far as macro nutrients go, you certainly need a minimum protein grams, a minimum calorie intake, and probably a level of polyunsaturated fats for cell walls and your omega 3s.
I'm going to put my electrical engineer's hat on. (Please correct any errors I make.) E is basically, at the neuron level, neurons firing when they shouldn't. You can think of a neuron as a "black box" - basically something that you don't necessarily know the inner workings of but it gives outputs (firing in a manner that triggers a seizure) to some combination of inputs*. The process of "fixing" E or seizure reduction is to reverse engineer this black box - to determine what combination of inputs is going to set about this unwanted output. The next step in that process is to engineer a lifestyle that will eliminate the inputs that will trigger the unwanted outputs.
The first step of course is the journal - to start cataloging inputs and outputs in a methodical and comprehensive manner. You will probably need help during seizure times to enlist someone else's help post seizure in case you forget. And it may pay to have some sort of listening device to record seizures during the night. It will probably be really obvious if looking at a waveform during the day. (this will help the modeling process, because it will give you more output data to match with the inputs - the ultimate goal will be to eliminate these mini-seizures as well).
After you have done that for a few months, you are then ready to start trying to model the black box - which inputs cause a seizure? Are they cumulative? (e.g. does lots of triggers over several days bring on a seizure?) Are they additive? e.g. it is highly likely that say, doing a load of washing, getting a little less sleep than normal, just before TOM will add together to bring on a seizure. I would suspect so.
After you can successfully model your neurons to the point where you can predict seizures, you are ready to start engineering your life. Probably the biggest problems are the unforeseen circumstances. However, lots of stuff IS actually preventable. For example, my sister has started to implement a rule of turning the phone off at 8:00pm. This prevents people calling her and getting her worked up before bed. After you make a rule and stick to it, people start to respect it and work around it.
This is similar to the risk management approach used by OH&S, by insurance companies etc. You go through each of the triggers and methodically ask "how can I prevent this?" You then come up with an action plan to prevent each trigger (or group of them). Insurance companies do this same process with the things they insure, and then mandate that the insured follow certain guidelines. The guidelines virtually eliminate the risk. So they then get to collect the premiums while paying far less in claims. This process works!
Another thing you can probably do around this stage is experiment a bit. e.g. the diets meetz mentioned, and various other ideas. If there is smoke there may be fire. It pays to experiment. Obviously neurons are floating around in a sea of chemicals which they respond to, and diet obviously affects the makeup of this chemical bath. So experiment! You may learn something.
I imagine that the neurofeedback idea is useful in managing the brain, because it looks like how you "drive" your brain also affects seizures. So, if you can figure out (or use available research) to figure out what sort of driving patterns will increase likelihood of seizures, you can learn to drive your brain in such a way as to reduce seizures.
All of these things add up. They are all controllable. You just have to realize that you have been given a machine (brain) that is a bit finicky and needs to be babied. It's like a car - sure, you can run the engine just under redline all the time. You can drop the clutch, ride the clutch, accelerate fast over bumps, take it fast over gravel roads, and accelerate at high rpm just after turning on the ignition. Sure, it is "within specifications" to do all of these things. But the rate of wear is much higher (even if it isn't explained in the manual)! The car will start dying after a short time and probably be in and out of the shop all the time due to components wearing out.
Another person who drives the same model car may get 1,000,000km out of it, by keeping up with the preventative maintenance and never doing the above things I mentioned. He might drive at at a maximum of 80km/h and never fully accelerate, and wait until he is in gear before properly accelerating. He may time the accelerations so that he only accelerates when he knows that he won't have to stop by braking. This means that the car is only under stress to do the work it has to do (move the car forward), not excess work (move the car forward only to brake).
Anyway, I should get to bed. At a later date, I will post a document I wrote out for my sister and also a spreadsheet for a proposed model. Maybe someone here will find it useful, or it can be used as the genesis of a new, even better spreadsheet.
* Inputs to the neurons firing - will likely be reducible to previous and current firing patterns, and the chemical milieu including stress chemicals the neurons are bathed in. Really, what else could cause a neuron to fire in a strange way? Anything that could conceivably cause one of these changes (change in firing or change in brain chemistry) could be a valid input. However, when I talk of inputs I mean primarily things that can be identified and preferably, controlled in one's life.
So for example, here is a hypothetical causal chain:
Do a load of laundry:
-> causes production of stress chemicals -> brain chemistry
-> causes one to not eat because you want to "get it done" -> brain chemistry
-> causes a "harsh" neuron firing pattern that will lead to a lowering of seizure threshold -> past pattern of neuron firing
-> causes stress to the body, requiring more nutrients from food, leaving less for the brain -> brain chemistry
Doing this brainstorming is useful because if your mind is closed to the influence of these sort of things having a cumulative impact, you then close your mind to the potential of a risk management approach to really minimize your seizures.
Last edited by bigbro; 07-15-2009 at 09:42 AM.
Hi BigBro --
It's interesting that you call this analytical process "brainstorming" in your last sentence, because "brainstorms" are another term folks have used for seizures!
I think there's a lot that makes sense in your risk management model, and that it's a terrific approach to minimizing seizures. It takes patience, but the potential rewards are obviously well worth the effort. (I would caution that the level of unpredictability inherent in physiological systems and their interaction with multiple environments is a limiting factor, much the same way that the most sophisticated meteorologists can never have 100% accuracy in predicting the weather more than a short time in advance.) Given the success folks on this site have had with things like neurofeedback, diet and careful monitoring of triggers, the focused efforts of an individual (or team!) can have a huge impact on quality of life for folks with epilepsy.
I look forward to hearing more of your thoughts, and seeing your spreadsheet tool!
I know this is the wrong place to post this. However, I thought it might make a bit of an impact for others to see what can happen when you delay getting to know more about a loved one's epilepsy.
I regret to inform you all that my sister died approximately a relatively short time ago. As you can imagine, I am devastated by what has happened (in amongst a whole wave of other emotions). I think about her mostly every moment of every day, in some way, in the back of my mind or in the front. I keep hoping to wake up and find it's all a bad dream, though I know it's not. I get so angry, because she did not deserve this fate. She was beautiful both inside and out.
I have left it until now to again make contact here because of the myriad duties that one seems to have following a family member's death. Not to mention, I was right in the middle of moving house at the time. But to put it off any longer would be cowardly. I may not be able to reply to this thread too frequently, but I do not intend this to be my last post here, by any means.
Some detail - my sister was living alone for a period of 2 months at the end, and died as a result of (I'm assuming) Sudden Unexplained Death in Epilepsy. I think it was just put down in the police report as "Epilepsy". From where she was (face down, off the bed), it can be assumed that she had a seizure and died sometime later. There was no autopsy. We do not know how much longer she lived after that last seizure, if at all.
Just looking at the thread title, it is obvious that I was not concerned enough. If I was concerned enough, I would have realized the risk and acted then and there to do something. My post mentions risk analysis. I'm so angry at myself for not even taking the Sudden Unexplained Death in Epilepsy risk into full account. I know it worried my sister (and I KNEW that it was a risk, that's the thing that I cannot hide from). Unfortunately it came at a time when I was living away from her, and very busy with my own life and nuclear family concerns (including future actions to provide more for them). I know I could have worked with other people she loved to make sure that she never slept alone. I am good at solving such problems. There were other people in her life who could have been there for her until I was there.
In time, I will post my spreadsheets. And some other stuff I had done. And maybe some future work that will count as penance.
I'm thinking of a few different things that I can learn from this, or help other people learn from. Maybe some good will come of this godawful event. Maybe these thoughts are useful to someone.
Obviously, the Sudden Unexplained Death in Epilepsy risk is a huge one. The obvious solution in my eyes is: if you truly love someone with epilepsy, do not let them sleep alone. (Edit: perhaps better phrased as "live alone" rather than "sleep alone".) If someone is there with them, the seizure may wake you up, and you can monitor them. At the very least, you are there to check on them, call an ambulance in the worst case situation, etc. Even some sort of remote monitoring isn't going to do much good - most seizures don't result in Sudden Unexplained Death in Epilepsy. You'd need to have some sort of breathing monitor at least to get an indication that it wasn't some sort of false alarm, otherwise the warnings would just go ignored.
Considering the number of people with epilepsy in society, some sort of outreach in this area would really do a lot of good. Most people aren't even aware that this is a risk.
Another thought I have had - in my opinion, my sister lived with a higher tolerance of the risk of seizures than was wise. So did her family. And maybe that's for a variety of reasons - not knowing the damage the seizures are doing, not knowing risk and probabilities, hoping in some sort of silver-bullet style miracle, mostly medical, rather than the more prosaic option of realizing that some people's bodies have limitations and should be worked around rather than trying to mould it into some sort of "one size fits all" type of life.
I know that each seizure does damage. Bigger seizures do more damage. A little damage, done here or there over a long period, adds up to a lot of damage. To use a car analogy, an epileptic's brain is like a poorly designed car. Maybe a lot of parts like the differential and the cooling system are not designed for the typical needs of that car. So if you give this car to an 18 year old male to drive and he thrashes it, then it might not last more than 100k km. However, if you baby the car - drive it slowly, don't ride the clutch, accelerate and brake less by timing the stops, service it regularly, etc... you might get 250k or even 300k km out of it. Just like a normal car... and you know what? It's getting you from A to B isn't it?
That's because you are reducing the average rate of damage that is being inflicted on the car. If you can halve the rate of damage, you should expect to double the life of the car.
The same principle is probably at play within the life of an epileptic. Lower the rate of damage (frequency and degree of seizures), live longer and better. And often you can achieve a 50% reduction in damage by only sacrificing 20% in what you accomplish.
Another way of looking at it - there's one seizure out there with your name on it. The less you have, and the less severe they are, the longer you can live your life without meeting this seizure.
Love of money is the root of all evil. There is always an extra zero that can be added to a bank balance or share portfolio or net profit figure. All those zeros are meaningless if you don't have your loved ones to share your life with. Perhaps a way to cope with the necessity of getting some money in life, even if only to help your loved ones when they need to - the concept of a tithe. If you give a percentage a year to your family, then you will be able to build up a nest egg, and at the same time you will help them out when they need it. You will not be able to be greedy by using the excuse of "I intend to give this money to loved one X. But if I keep it and reinvest it, it will be worth as much as 10X in a short time. Therefore, I will keep it and reinvest it, as that is the more charitable option."
Following on from that,
It is not a waste of time to become obsessed about a loved one's illness (or your own if it is life threatening). There are urgent things, but preventing a death in your family is an important thing. If you are placing urgent things ahead of important things, you are doing it wrong. I prioritized my career (and hence, wife and child's future needs) ahead of my sister, even if it was only for a few months. She needed me and I wasn't there for her when she needed it.
Consider your loved ones with the life you lead
If what you are doing is causing excessive seizures or risk thereof, there is a risk of death. Even if your own life is not worth much to you, your loss will certainly take a horrible, horrible toll on your loved ones.
Also think a bit about your lifestyle and that risk. If you have animals, many people are allergic to some animals (especially cats and dogs). Having animals restricts the number of people who can have you live with them, and thus increases the risk of Sudden Unexplained Death in Epilepsy. Is having that animal really, really necessary?
If you have E, take a good hard look in the mirror and accept the fact that you have E
This means making some compromises in life, but they will be worth it. Some examples - getting appropriate bedding to ensure that you really minimize the chances of death from a nocturnal seizure. Do you roll into a place where you can't get stuck and suffocate or break something? Is it porous (etc)... It may be out of the ordinary and mark you as an epileptic, but is it better to die tragically young and appear superficially normal, or live a longer and more rewarding life?
Another is, if you are playing the dating game, accept the fact that you will need to aim lower. When you find someone genuinely nice, who loves you and is willing to stick around, don't get hung up on minor details! Everyone has their flaws, there are no strengths without weaknesses. There comes a time when you need to commit and stop shopping around. Even if you can attract the cream of the crop, you need to realize that because they are the cream they can demand near physically flawless partners, and as a result they get it. They are highly, highly unlikely to commit to you, even if you can routinely attract them.
To that end, you'd be best to start screening these sort of people out at the beginning by being up front with them. Then you get a realistic idea of who you can attract on that basis, and who will really stick around.
I'm not sure if I really want to end on that point, as maybe my frankness can be a bit upsetting, or maybe it doesn't apply to many people. I guess the main thing I'm wishing is that I wish I looked at E head on, I wish I knew more about how to deal with it, I wish we were more realistic about things a lot more early on, when there was time to really make a difference. I think in a lot of ways we (the whole family including my sister) did too little, too late, and paid the price. (To go back to the car analogy, it would be like putting 95k on the clock driving it like the hothead, and then expecting to be able to baby it to 250k). But now in the age of Google, it should be possible to get to a state of preparedness much more easily. And that will be better for everyone.
I wish all of you the very best in life, and I sincerely wish that none of you have to go through what myself or my sister have gone through.
p.s. I'd wish to keep my identity and that of my sister private until further notice. I'm sure that someone who knew could piece things together fairly easily, but just keep it to yourself if you could. Thank you.
Last edited by bigbro; 01-18-2010 at 06:11 PM.
Aw! my sincerest condolences BigBro! After reading through your post, it sounds like you sure cared for her and her well being. and you took the time to study and research to help better her life.
Your analogy puts it in perfect terms.
I hope you find comfort knowing she will not have to ever experiance a seizure again, and that she is a better place, looking after you now.
Hugs and love
FALL SEVEN TIMES, STAND UP EIGHT- JAPANESE PROVERB
THEY SAY YOU CAN'T DIVIDE ANYTHING BY ZERO. IF YOU DIVIDE SOMETHING BY ZERO, YOU GET INFINITY. AND THE ONLY THING THAT IS INFINITE IS LOVE.
NEVER LOOK DOWN ON SOMEONE UNLESS YOU ARE HELPING THEM UP.
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I am sorry for your loss. Every time this happens it brings the reality of the potential end game of E.
Time to throw the car in reverse. No matter how good the driver and mechanic the car is still the car. A bad gasket could let the water pump flood the engine and even though you saved it doesn't mean that the damage has not been done. You could be right at the mechanic get an oil change and new tires, pull out then never run again.
You obviously did reflect on this tragedy, learn about yourself and the world (humanity). Blaming yourself entirely is not fair to you because she could have been in to see her doctor and gone 'status'. I am not disagreeing but just saying not to completely beat yourself up. It is only at the precipice that we can truly change.
"Complacency is a state of mind that exists only in retrospective: it has to be shattered before being ascertained." - Vladimir Nabokov
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My heart goes out to you BigBro. It's so hard to lose a loved and living relative, and especially hard to feel like there was something you could have done to prevent it. But please, please, please don't blame yourself. Sudden Unexplained Death in Epilepsy is just that -- sudden, coming out of nowhere, happening anytime and anyplace.
I understand your concern in suggesting that someone with epilepsy should not live or sleep alone. But I live and sleep alone, and it's my choice. (My seizures are well-controlled by meds, which is obviously an important consideration.) I'm not in denial about the risks of epilepsy, but I'm also very clear about the quality of life I want to have. A large part of my enjoyment of life comes from my independence. Sudden Unexplained Death in Epilepsy is a risk, but so is my slipping in the tub, or getting hit by a car while crossing the road. I'm not being glib -- I know that some people with epilepsy will benefit from having a live-in caregiver -- but I am not one of those people.
I feel for you, and my thoughts are with you in your grief.
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My condolences go out to you. Sounds to me like you are a very caring person and did what you could to help your sister. Unfortunately, Sudden Unexplained Death in Epilepsy can and does happen on occasion so there is no need to blame yourself for what you should have, could have done.
I think your frankness with E is what is desperately needed more in this world!
My ex is a pilot and his priority is $$, so didn't take my E seriously. One morning, while he was getting ready to go out on a trip across the country, I was feeling awful and tried to persuade him to stay and take me to the ER, but NO, he had to take the flight, it was much more important. After he had left, I went back to bed and a few hours later when I was up with the children, I went status. So of course, the kids called the neighbors who called 911 and was rushed to the ER. They got a hold of the airline and contacted my husband, who had to fly back so he could be with me in the hospital. And there are many more stories. My point is: it sounds like you gave much more care for your sister than my (ex)husband did for me.
But now, after taking many avenues, my seizures are under control so I live alone, without the stress of the marriage I was in. I do know there are still risks for me and have let the local Fire Dept. and 911 officials know of my situation.
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
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Probably from an avoiding depression viewpoint, it is better not to beat yourself up. But from a risk management perspective, it does not particularly matter how one particular situation ends up. If you succeed in spite of poorly identifying and managing risks, you are lucky and should not be patting yourself on the back. If you do a great job of identifying and managing risks, you can rest assured that you did everything that you could do if the worst does happen.
But don't worry, I'm only really saying this to hammer home that if there is something I can learn from this, I need to apply it to the living family members I love now. What's done is done. There are other people in her life who in my view need to beat themselves up far, far more. However, if there is someone you love being neglected by someone with more responsibility than you in the eyes of most people, then you have to weigh what is more important in life - having someone you live still with you in life even as you make sacrifices, or having the cold comfort of knowing that you "shouldn't have to do that".
As long as you have communicated your desires and your reasons to your friends and family members, that is a good thing. If a person who has done that dies and their loved ones can say "She would have wanted it like that; that was the path she chose and she knew the risks.", it does make it easier for them because they can't then blame themselves. But it will not erase the sadness. I respect your choice.
I thank you, and all other posters on this thread for any condolences. Thank you.
I am glad you have been able to have kids too - that is a real gift. And that your seizures are under control.
I did care for my sister, and she referred to me as a "good brother". I have that to be proud of. There was a time when I offered to give her a few thousand dollars to help her out. But she refused, saying that my family needs it more. In hindsight I should have just given her the money without accepting no for an answer. If you ask someone if they need something, and they refuse, they are often just being polite. So by asking, you give yourself an out. It is better not to ask - don't make someone beg.
It's clear that you were a sensitive and caring big brother and that your sister loved and appreciated you. I hope you can remember that while you grieve.
The way you talk about risk management makes me think you would have a PMP.
"Complacency is a state of mind that exists only in retrospective: it has to be shattered before being ascertained." - Vladimir Nabokov
BTW I don't have a PMP, but I have read at least one book on Project Management about a year ago. It's funny you should say that. Maybe the attitude partially comes with the EE degree though - Edward Murphy of Murphy's Law fame was also an electrical engineer. What is Risk Management but the attempt to head Murphy's Law off at every available pass?
It seems so simple now, but a risk analysis that attempts only to minimize seizures and not the chance of death through Sudden Unexplained Death in Epilepsy is obviously incomplete. My sister had been near death multiple times in her life previously but had been saved by room or house mates.
Realistically, the chances of her dying were pretty small. She did fit the qualifications for high risk - seizures not fully controlled, tonic-clonic, seizures at night, the right age... which could have put her at 1:100 per annum as opposed to 1:1000 per annum for the average epileptic. And since she was only living alone for 2 months, that is closer to 1:500. And she had been checked on many days by another relative, it was just that one day she wasn't checked. So maybe if she was checked on 9 days out of 10, the risk would be more like 1:5000. It's not large, but it's not small either. And there is no saying that it wasn't just her time then.
Thanks for listening.
E patient, mother and fellow poster here, I give you my sincerest condolences, BigBro. You have made some wonderful points in your posts above.
I have an idea though, one that would honor your sister.
Why not work towards being an advocate for epilepsy? As someone who stands up for E patients who need help, and for E patients in general? NOT as a sort of penance, but as a way to honor her instead.
You CANNOT blame yourself for what has happened--some of us, like Nakamova, choose to live alone. Some of us would prefer to, but can't, for economic reasons. But those are our choices...your suggestions about the bedding are terrific ones, and there are some safety pillows available that I know of. I would have to dig around to find where I put the links, but I have them. Tinasmom (her daughter passed away from Sudden Unexplained Death in Epilepsy and her daughter's daughter, who lives with them, has E also) might also have some links, too.
There is another member here, Jen, whose brother Jordan, just passed away from Sudden Unexplained Death in Epilepsy about a month ago. He was a member of CWE, using the name of Danjor. She signed on to let us know, and has since stuck around.
I wish you the best of luck, and please feel free to PM me if you'd like. And we'd LOVE IT if you'd stick around.
Listening and offering support to anyone is what this site is about.
Sadly one moment is all it takes for a risk to be realized.
"Complacency is a state of mind that exists only in retrospective: it has to be shattered before being ascertained." - Vladimir Nabokov
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