Risks depend on the type and number of seizures you have and how they affect you. Because these issues are often complicated and specific to each woman, it is important that women talk to their epilepsy specialist before becoming pregnant. Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. … One of the men in the support group I was in when I lived in NYC lived alone, was cooking something but his seizure had him fall onto the stove and burning his body so bad that he had to get several skin grafts on his hand, arm, and neck. Communication in those at risk for Alzheimer's and dementia can reveal a lot about the progression of the disease. It may be that they died during or after a seizure. For me, when a doctor or loved one says, "You shouldn't live alone or do whatever by yourself because you might get hurt" means because I have seizures I'm incompetent and I need to be attended too at all times. Moreover, since surgery 9 months ago, my days seem far longer. But if the answers to the questions were comforting, you may still be able to leave your loved one alone, although you must regularly check up on their progress to ensure their safety in the future. These steps should be followed once the shaking (convulsing) has stopped. Because those with epilepsy who have good health and whose mental faculties are not affected, can live independently well into adulthood. Epilepsy can also affect a person’s daily life if seizures limit their ability to drive or if they live alone. 234343) and a company limited by guarantee (No. There was a small correlation between the two. Thats why my dr suggests not living alone. Hormone levels change during puberty, periods, pregnancy and through the menopause. When it comes to the child's age, eight different ranges are acceptable for each state. I guess that's why I'm happiest by myself, sure when I was still having seizures there was the safety aspect but the strange thing is I have never hurt myself at home only at work or outdoors. get arrested because people would think i am on some of of drug. Support available from the Epilepsy Society includes: a helpline on 01494 601 400; an email helpline – helpline@epilepsysociety.org.uk; Sudden unexpected death in epilepsy (SUDEP) Sometimes a person with epilepsy dies during or after a seizure for no obvious reason. Never leave your child alone in the tub or a swimming pool of any kind. This might include some leisure activities such as mountain climbing or skiing. Safety advice for people with epilepsy. Epilepsy varies greatly from person to person, so risks due to epilepsy depend on: Possible risks to your health and safety can be difficult or frightening. Some people with epilepsy choose to wear or carry with them a medical identity (ID) card or medical jewellery that says they have epilepsy. Epilepsy Foundation of America®, d/b/a Epilepsy Foundation®, is a non-profit organization with a 501(c)(3) tax-exempt status. The reduction in life expectancy is minimal for people with idiopathic/cryptogenic epilepsy, who have about the same life expectancy as the general population. But for some, epilepsy may affect their health and quality of life more than just because of having seizures: their epilepsy may come alongside anxiety, stress, or depression. For most people this is by taking anti-epileptic drugs (AEDs) as prescribed. I am also controlled by meds I have been taking since i was 16 years old and am now in my 60’s. You may opt-out of our marketing communications by clicking the ‘unsubscribe’ link at the end of our marketing emails or through our unsubscribe number 01494 601 300. Outside of the home, you may be able to make activities such as cycling or swimming safer if you have someone with you who knows how to help if you have a seizure. On rare occasions people die suddenly for no clear reason. 12 Years Old: Mississippi, Delaware, and Colorado 3. Dude!, who's your doctor?! Others can be set off by the person themselves if they feel a seizure coming on. Because SUDEP often happens when the person is asleep and is not witnessed, it is hard to be sure why it happens. wflisa. The hard part though is not being able to drive, although since I do feel them, I bet I could do that to, but I doubt my parents/girlfriend/Dr. For instance, conversations become Conclusion: Both Perspectives May Capture a Bit of the Truth As with any medication, AEDs can have side effects. Firstly, though we both have/had TLE complex partials, they can manifest themselves in people differently depending on the specific area of the temporal lobe involved. Every effort is made to ensure that all our information is correct and up to date. I could not agree more that you should do what feels right for you. It may also make you feel more in control and help you to work out what risks are relevant to your situation, so that you can see what is important for you. i am alone side with you as well as others. Epilepsy and Mental Health: What You Should Know. I always felt that they were whole and that I'm only going to amount to being half a person. Responses to enquiries contain information relating to the general principles of investigation and management of epilepsy. THAT DGO OCULD BE THE ONE TO SAVE YOUR LIFE IN THE EVEN TTHAT YOU SEIZE WHILE DOING SOMETHING THAT COULD CAUSE YOU BODILY HARM. Sleep on your back. And again thank you for your comments, it makes me feel like taking the chance and not live in total fear. Epilepsy affects both males and females of all races, ethnic backgrounds and ages. Or you can make your house safer (microwave cooking only, carpet not wood floors etc. A few jobs exclude people with epilepsy (for example, pilots or people working at heights). I had no idea that it was even remotely possible for a 55 year old to "suddenly" get epilepsy. There may also be things you can do to help reduce your risk. Or do you just walk and mumble and move your arms around? Often the best way to reduce risks due to epilepsy, is to stop seizures from happening. I have sort of grown up with the feeling that by having epilepsy that I was only half a person and when I looked at my two older brothers and stuff and realized they are college grads married with children, drive cars and stuff. Be your own epilepsy expert. Time the seizure – these types of seizures are usually longer than convulsions or tonic clonic seizures. I PLAN ON MOVING OUT OG MY MOTHERS HOUSE IN THE NEXT FEW MONTHS AND ALTHO I'M A BIT TIMID, I HAVE FAITH THAT EVERYTHING WILL WORK OUT. After a lifetime of being independent, losing the ability to drive or take care of themselves can be especially hard for older adults. I wanted to prove them wrong. However, some anti-epileptic drugs (AEDs) can cause birth defects or developmental problems. But if you continue to have seizures, safety may be an issue. It bugs me when people see me for my seizures and not for my intelligence. Do not try to give mouth-to-mouth breaths (like CPR). The most common tell-tale signs include drastic changes in everyday functioning. I worked 96 temp jobs between 1973-1986 and at that year I got the news from the Dr that they want my seizures to stop totally so while working the stress and tension seemed to trigger seizures and one point I woke up in the hospital because some employees said I had 4 back to back. This information looks at possible risks in and outside the home if you have epilepsy. If status happens in a tonic clonic seizure (where people fall down and shake), this is a medical emergency and an ambulance needs to be called. Read more about epilepsy and mood. Everyone is different. Depression is the most common psychiatric comorbidity in people with epilepsy. There are different types of alarm for different types of seizure. Chesham Lane Chalfont St Peter Buckinghamshire SL9 0RJ. It is important to ensure that vital functions, especially normal breathing and heart function, are preserved. Seizures are bad, but not living life is worse. This is known as sudden unexpected death in epilepsy (SUDEP). This means that they may be more likely to have seizures, and be at greater risk of injury because of seizures, at these times. I'm not stupid and I don't need to be watched 24/7. Good luck on your decisions. having regular reviews with your doctor or specialist to monitor your epilepsy and your general health. How long it takes to recover can vary from one person to another, and even after fully recovering from a seizure, some people's memory might be permanently affected. Epilepsy impacts daily life differently for everyone, so the first step to … 4. Lack of sleep is a common reported trigger for seizures for many people with epilepsy. Memory may be affected during or after a seizure. One out of five people living with epilepsy lives alone, according to the Epilepsy Foundation. Up until about 4 years ago I've always lived with other people. YOU KNOW DOGS CAN SENSE WHEN A SEIZURE IS COMING ON OR ANY TYPE OF ATTACK FOR THAT MATTER. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths. I teach, and had a seizure during my first day of class, but they didn't fire me, and the students saw another part of life, of reality. The tension and stress just keep your seizures going. If a convulsive seizure goes on for 30 minutes or more, this could cause lasting damage to the brain, or even death. I have lived alone since 1995 when my mother passed away. We want to stay connected with you. I hope it works. Encourage your child to take showers instead of sitting in a tub of water. Fire: Your child should always be closely monitored around campfires, fireplaces, or hot ovens/stoves. So he feels I almost missed my entire teen and youth. Having epilepsy does not mean one cannot live independently or happily. Thats why he suggest that someone live with me, a companion or something. And when I have a seizure I cannot describe what my body was doing in it. But looking at risks can also be positive if this helps you to find ways of reducing risk or making activities safer. Epilepsy Action is the working name of British Epilepsy Association, a registered charity in England and Wales (No. A Person with Dementia Should Not Live Alone at Home if They Start to Experience the Following: People with dementia experience cognitive changes that affect decision-making, self-care routine, and fulfillment of basic needs such as proper nutrition. Answers are not, and should not be assumed to be, direct medical advice and is not intended to be a substitute for medical guidance from your own doctors. There are always going to be risks in living alone when one has seizures– but if you take all For decades my doctors have suggested that I don't live alone. Everyone has some brain cell loss as they get older. For some people these side effects mean that they don't want to continue taking AEDs. Though it is not clear why this happens, research shows that in 73% of SUDEP cases, the person … Epilepsy Action has more … Finally it offers some practical tips on staying safe wherever you are. In the Eastern Pennsylvania region alone there are over 110,000 people living with epilepsy. Do not hold the person down or try to stop his or her movements. Here are some suggestions to help you think about your safety at home. So it is often a good idea to check with your doctor or pharmacist before taking other medications alongside your AEDs. This depends on their age, type and number of seizures and any medication they are on. I love living on my own now, but I also have a lot of very good friends who live nearby & are always there for me if I need help. Living With Epilepsy - Adults. 797997) in England. So he thinks while at age 50 Im more like 35-40. He says when I have my temporal lobe partial complex seizures, I'm never conscious. They may hold any class of license if they have been seizure free for 5 … Life's too short! which i should not have been doing. Developmental and Epileptic Encephalopathy, Care and Cure Institute: END EPILEPSY in Children, National Education and Awareness Collaborative, Contact your local Epilepsy Foundation >>. Making an activity or environment safer will often depend on how your seizures affect you and what the activity or environement is. I've lived both with people and by myself during my life with epilepsy and both have their blessings and curses. you do not know how bad i want to try to live alone by myself, but i always think about what will i do if i have a seizure in the place i am staying in, what would happen over the stove while i am cooking and a seizure occurs, happened while i was at work a few time and had to get skin grafts. Telling people how your seizures affect you may mean they feel more confident helping you to keep safe, and knowing what to do if you have a seizure. Emergency medication may need to be given to stop the seizure. Your doctor may order several tests to diagnose The courses cover quality of life issues such as wellbeing, self-esteem, depression and anxiety. Using a pill box or drug wallet can help you to remember when to take your medication. Recent studies show that the majority of premature deaths in people with epilepsy may be caused by another condition the person has alongside their epilepsy. Epilepsy, still a mystery to many. He was trying to be protective and be caring and helping me to see the "error" of my ways. I had my first seizure when I was 16. Some issues around risk are specific to girls and women with epilepsy. I may think or assume I must have just had one, but I don't know what happened. So I'm also sure I had far more complex seizures than I ever knew about. Statistics about risk can be helpful but they do not show what the individual risks is for you, which may depend on your epilepsy, lifestyle or conditions you have alongside epilepsy. The one thing I would encourage you to do is to get out and do things that make you happy, whether it is sports, going to the zoo, the library or participating in something you enjoy and not worrying about having a seizure. MY FIRST SUGGESTION WOULD BE TO GET A DOG. People with complete control over their seizures prior to flying are likely to be able to fly without an exacerbation of seizures. This is certainly not an easy situation for everyone but understand your own feelings when making the most sensible and safe decision for all involved. Seizure symptoms can vary widely. I burn myself without even having a seizure. Possible side effects include tiredness, confusion and changes in mood. But if you don't feel safe living alone, don't. Caution should be taken in assuming that the current findings generalize to other populations of those with epilepsy. Epilepsy Society is a registered Charity No. Risks due to epilepsy depend on what someone's epilepsy is like. There are specific issues around pregnancy for women with epilepsy. I have seizures unnattended to and I do just fine. A risk assessment normally would include looking at whether you have seizures or not, how your seizures affect you, and what the environment or activity is. (rhetorical question, no names!) If you have been affected by an epilepsy death please visit sudep.org or contact the SUDEP Action support team on 01235 772852. My DH and I got into this very argument the other day. yes, i agree with the doctor, even i do not want to. Methods. In the UK around 600 people die from SUDEP each year. Most pregnant women with epilepsy have a normal pregnancy and a healthy baby. I wasn't aware of any. If you are concerned about anything you have read on this page, it is worth remembering that not all of the risks may apply to you. Ruth :-), hi there. He says when I have my temporal lobe partial complex seizures, I'm never conscious. But, aside from immediately after falling off a bicycle at age 10, and getting in a car accident decades later (when my AEDs had stopped working) I never had any fear of hurting myself during a seizure. Getting good seizure control and staying safe can help to reduce risks. Hugs. It may be that the person's breathing or heartbeat have been affected. If your seizures are controlled (stopped) with medication then there will be no specific risks to you related to having seizures. Work. If you have a seizure warning (when you know that a seizure is going to happen), this might mean that you can get to a safe place before a seizure happens, and so reduce the risk of an accident or injury. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy. Not everyone with epilepsy has anxiety or depression but they are the most commonly reported mental health problems for people with epilepsy. In fact, you can! This can injure teeth or the jaw. Some people choose to have an alarm, which is set off when they have a seizure, to get help. For more info, read our privacy policy and cookie policy. This is 1 in 1000 people with epilepsy, so SUDEP is relatively rare. But, risk can also mean the chance of injury, danger or damage to your health. So get out there! Who agrees with this Dr suggestion about not living by myself? If you have coped & taken drugs for any length of time, I'd suggest you find an epileptologist (a neurologist that's further educated in and that focusues on epilepsy). He's encouraging me to take assessment tests and things and find a career. To work best, AEDs need to be taken every day. anything like that. SUDEP is when a person with epilepsy dies suddenly and where no other cause of death is found. yes i am concerned also. Everyone is different in how they cope with anxiety or depression, but this may increase the risk of long term problems or even suicide. Having a single seiz For some girls and women, there is a link between hormones and when they have seizures. I have had a number of accidents at home over the years, but my seizure's have reduced so much now, that its not nearly so bad a problem. Now, here's where some common sense is used. Many people with epilepsy enjoy a full and active life. In the UK around 600 people die from SUDEP each year. so do not think you are alone. i will put my blog on the adult programs pretty soon. I saw it as insulting my intelligence and that I'm too stupid to make my own choices. Some people want to be alone for both kinds of reasons. Depending on your age and situation, you might include other people when making decisions, such as your parents, partner or carer and your social care or healthcare professionals. 3540 Crain Highway, Suite 675, Bowie, MD 20716 | 1.800.332.1000. We use cookies to optimise our website and ensure you get the best possible experience during your visit. I want to thank you both for your comments. Some medication affects how other medications work, which can in turn affect seizures. And when I have a seizure I cannot describe what my body was doing in it. A person having a seizure cannot swallow his or her tongue. There may be other AEDs or doses you can try or other types of treatment may be an option. I went to argueably one of the most stressful colleges in the world, and had more seizures because of the stress, sometimes 20 a day, but somehow worked through all of it, and graduated. I was not diagnosed with the epilepsy until November 2005 however, because that was when I had my first tonic/clonic (grand mal) seizure. Any references made to other organisations does not imply any endorsement by Epilepsy Society. This can be because brain cells in parts of the brain responsible for memory can be sensitive to the effect of seizures. A proof-of-concept randomized clinical trial was conducted in the Logo health zone in the Ituri province, Democratic Republic of Congo, to compare seizure frequencies in onchocerciasis-infected persons with epilepsy (PWE) randomized to one of two treatment arms: the anti-epileptic drug phenobarbital supplemented with ivermectin, versus phenobarbital alone. So I asked her if I have seizures while living alone and I'm not aware of whats going on, then at a Drs appointment how can I describe what was happening etc.. when out of a seizure I feel confused and dazed and just strange. You know yourself better than any doctor and if you are worried about your safety, find some ways to work with it. Safety helmets help to protect someone from injury if their seizures cause them to fall suddenly. This risk needs to be balanced with the risk of injury to the mother and baby if seizures are not controlled with medication. Protect yourself from Sudden Unexpected Death in Epilepsy (SUDEP), a phenomenon in which a person with epilepsy dies suddenly, usually in her sleep. These ranges are the ones that states decided are the most acceptable age to start with. The organisation Support Dogs trains dogs to support owners with specific needs including epilepsy. It might include the following: Risk assessments can help to identify practical ideas for reducing risk to make situations safer. Maybe that's not what was meant, but that's how my brain sees it. People may also face specific risks because of their epilepsy, such as the risk of injury or accident or injury. Since that year the doctor said. Seizure alert dogs are specially trained to warn their owner before a seizure starts, so they can get help or move to somewhere safe. https://www.verywellhealth.com/coping-with-epilepsy-1204447 And who does live alone and how is it going? Copyright © 2020. If you are worried about this, you might like to talk to your neurologist or doctor about how your epilepsy might affect you. About 150,000 new cases of epilepsy are diagnosed each year. To me it's highly insulting. best wishes. Some people with epilepsy find it helpful to consider safety aids or equipment that might help them with day-to-day life. Some people carry an ID card which says they have epilepsy and how to help during a seizure. In the UK there are around 1200 deaths related to epilepsy a year. For example, an alarm, or monitor, that can alert family or friends when someone has a seizure. Research shows that SUDEP is related to seizures. I'm married with kids, but thoughout my married life, I've been at home alone most of the time. So a key way to reduce the risk is to try to get the best seizure control possible, in particular for tonic clonic seizures. I am not capable of living alone or doing what I need to do. It is often worth remembering that some surroundings or activities may have risks whether you have epilepsy or not. Don't go to college, if you think work is stress school would be worse considering the textbooks and how each professor has deadlines for assignments and you'll be up all night cramming and that is more stress. Some of these deaths are caused by complications during or after a seizure. Whether seizures cause any extra loss of brain cells is not clear. Some people have triggers for their seizures: situations that bring on a seizure, such as stress or tiredness. But suddenly stopping AEDs can cause seizures to happen again. Some safety issues may not be relevant to you or you may have your own ideas about what would make situations safer for you. You might want to do a risk assessment yourself, or it may be appropriate that a carer, an employer, an occupational health worker or social services do this with you. I just need to sleep for a couple of hours and I'm fine. I'd also recommend testing for surgery. I'd say it all depends on what people have told you in the past and/or currently happens when you have them- I don't fall when I'm unconsious and have many when I lived alone- I live with my boyfriend now and there are times now when he'll tell me one just happend but nothing unsafe ever happens- hell any one of us could black out and walk in front of a bus tomorrow- as one dr put it to me nicely- (bitch) She's not my dr anymore but I'm sure you ahve interaction with other people that will see your seizures in the future unless they all happen at night when you are asleep in which case- you are S**t out of luck anyways if ya know what I mean- Drs don't know it all go with your gut- there seem to be too many people in this world of ours that don't go for it because they havn't tried it yet- and as a back up- you try a video camera ;). Turning to an add-on therapy. I find that people (with the best intentions!) Im not sure what other people go through when they have a seizure, but I can feel it when I am about to have one. Getting good seizure control and staying safe are ways to help reduce risks. Epilepsy is a brain disorder that causes changes in brain cell activity that result in seizures, periods of unusual behavior or feelings, and in some For example, safety measures at home include looking at risks around cooking, fire safety and bathing. It describes how to do a safety check. I don't live in fear that I might have a seizure while cooking and burning myself. then I bought a flat & made the decision I wanted to live on my own.. the amount of opposition I had to that you wouldn't believe, & although I could understand all their concerns, to me it was like they were treating me like a 5 year old kid & I wouldn't be able to cope on my own. They will visit you at home to see what help, support or safety equipment you might need because of your epilepsy. If you continue to have seizures even with AEDs or if you are having side effects, you can talk to your doctor or neurologist about it. The amount of sleep a person needs will differ, but it is recommended that people with epilepsy stick to a regular bedtime and try to get a full night’s sleep (7–8 hours) as often as possible. Many people are able to control their seizures on one antiepileptic medicine, but when seizures cannot be managed on one medicine alone, another medicine may need to be added. Epilepsy deaths are not common but do happen, and while not all deaths are avoidable, some are. 14 Years Old: Illinois 2. We give advice, improve healthcare, fund research and campaign for change. At age 50 when in school I missed out on going to regular HSs, and things and what most people my age have experienced I have missed. if i did move out, how will i get to the doctor ? Here are some examples. To diagnose your condition, your doctor will review your symptoms and medical history. by bus i guess then then i may have a seizure and who knows what will happen next. whether you have other medical conditions, such as heart or breathing problems. driving a car, broke my leg, had to get stiches. Some people with epilepsy will continue to have seizures even though they are taking antiepileptic drugs. Our templates make suggestions about what the risks may be because of someone’s seizures, risks associated with living conditions (around the home), and risks associated with outdoor activities. This may depend on the type and length of seizure that the person has. If you would like to contact other people who have epilepsy, there are some support groups in the UK, call our helpline for details. etc would not like that lol. Some of these deaths are caused by complications during or after a seizure. It is always your choice as to whether you want to receive information from us. There's nothing wrong with help if you need it. Other deaths may be due to accidents such as falls, or drowning, suicide, or they may be linked to another condition that a person may have alongside their epilepsy. This is welcome news for people who want to live independently. When this happens to someone with epilepsy it may be called Sudden Unexpected Death in Epilepsy (or SUDEP). This is called 'preconception counselling' and focuses on making sure AED treatment is right, for the mother to get the best seizure control, and for the baby. Anyone can develop epilepsy. For some people this can be a very difficult decision. Risks due to epilepsy depend on what someone's epilepsy is like. If you have seizures where you become unconscious (for example, going 'blank' or falling down) or you become confused or are only partly aware of what is happening around you, your surroundings could be a safety risk. And there's nothing wrong with living by yourself if you don't. Except for that first seizure, I have not hurt myself or had any other "damaging" experiences. Yes, some seizures can be triggered by strobe frequency in … In all areas of our lives, we take risks. We send monthly e-newsletters to keep you informed with tips for managing epilepsy, the latest news, inspirational stories, fundraising opportunities and further information from Epilepsy Society. If my seizures are so uncontrollable that I am indeed burning myself and am truly a danger to myself because of my seizures, then I need some kind of help..at my choosing. In this state where I now live one dr says he wants me to forget everything those others had said back then. A person with epilepsy who has seizures only when asleep or immediately upon awakening may be considered for a Class 5 or 6 license if they have satisfactory waking EEG’s and are subject to regular medical supervision. Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. "Don't work anymore. The DVLA recommends that if you do come off medication, you should stop driving during the weaning off stage (which can be for several months) and for a further six months afterwards. But these figures do not show the risk of SUDEP for an individual because everyone’s individual level of risk will depend on their epilepsy, lifestyle, any conditions they have alongside epilepsy and other factors, such as their age and sex. My neurologist said that he'd rather have me on less medication and let a seizure happen to me every month or so than medicate the seizures-and myself-away, but there doesn't have to be an either-or. It covers how you approach risk and how to help yourself feel more confident about going out.
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