The Knowledge Board:
Epilepsy
The Patients Voice would like to welcome you to our blog to discuss treatment of epileptic seizures. With a wide variety of treatment options now available from surgery to medication we are interested in finding out more about the views of epileptic sufferers and parents of epileptics.
In particular we are interested in the following questions:-
• How many medications do you take? Have you changed medication recently if so what was the reason?
• Do you have any experience of surgical intervention? What would you advice be to other epileptics?
• Have you tried a Ketogenic diet? If so what were the results?
• If you are a parent or carer of a child with epilepsy can you tell us your story of the diagnosis and treatment of the patient?
Of course we would appreciate any comments you might have on the experiences of living with epilepsy.
Please feel to contribute you thought and share your experiences. All you need to do is type a nickname of your choice and the put your comments into the box. Your comments are anonymous of course!
Best wishes
Belinda
Doris | 01/05/2007 04:49:00
I have been epileptic since age 17 and it has been for 46 years now. I started with first seizure when driving and caused an bad accident which fortunately only involved my car since I drove into a tree, not another car. I was treated since then by numerous doctors, and many different drugs. I started on dilantin and had many changes, and I am presently on Lamictal 400mg daily. Almost 10 years ago, I had left temporal lobectomy and it completely stopped all day seizures, however it was the start of nocturnal seizures which I still get now. It occurs at least twice a month, sometimes more and sometimes repeated during the same night. I never know these happen until I wake and then experience the super headache and often the cut inside of mouth. My husband gives me another drug if they repeat and it knocks me out swiftly. I am glad I did the surgery since it meant the reality of being able to get my license back after after about 35 years without it. Post surgery, I have experienced difficulty with short term memory. I can recall my youth, but current things are difficult. This surely brings inconveniences, but the apprehension wondering if this is going to get worse, is scary. If others who experience similar difficulty could share their suggestions, it would be valuable to many of us.
Randall Miller | 02/05/2007 20:51:00
Dear Sir: I hope that maybe I have written to someone who cares and wants to help about finding some answers to the health questions that I have asked.I became epileptic at the age of 41 and on august 9, 2006 became 53.I have never had a head injury nor has anyone in my family ever had epilepsy or seizures.Years ago at the age of 38 I had just went back to college part time and I had gotten excellent final grades for my first two classes.On television I had been seeing many advertisements for fruit and vegetable juicers and they had been saying that the average person does not eat enough fruits and vegetables and one of the easiest ways to fix that was to juice them in a fruit and vegetable juicer and drink the juice.I knew I did not eat enough fruits and vegetables and the ideal of a juicer I found very interesting, instead of eating one apple I could juice seven apples or instead of eating one carrot I could juice ten carrots and drink them.There were also some fruits and vegetables I did not like to eat but if I put them in a juicer and then drink the juice and benefit myself with a better diet.I was able to come up with enough money to buy a good juicing machine at a health food store.When I started juicing at the beginning I only juiced a couple times a week because I could not afford to buy a lot of fruits and vegetables.After I started juicing and drinking fruits and vegetables I noticed I would break out with poison ivy like symptoms on my hands and around my mouth at times and I did not know why, I also started to have panic attacks and I thought it might have something to do with me going to college at my age even though I didn't seem to worry about it.My parents wanted to help me and they said they wanted me to move in with them until I finished college and then I could move out on my own and find a job in the field I was studying.My parents did not mind helping me and I was enjoying college.I packed everything up and moved and I did pack my juicer.It must have been a year since I used my juicer and during this time I had no panic attacks and none of the poison ivy symptoms I described.I got to thinking about the juicer I bought at this time and the benefits of fruits and vegetables and I had spent over two hundred dollars to buy a good name brand juicer that I got it out in the fall and I started using it again but this time I had a little more money living with my parents so I bought all different kinds and types of fruits and vegetables and would juice and drink 3-5 large glasses every morning.I really do mean every morning!It seems like you hear the human person never has enough fruits and vegetables in their diet and I wanted a healthy body.I always drank the juice in the morning on an empty stomach thinking that would be the correct way to get the most benefits.After a short time I noticed I had more trouble studying and learning and I also started to break out with poison ivy like symptoms around my mouth and on my hands again.All the time I was drinking the fruits and vegetable juice these poison ivy symptoms would break out and start to heal up and break out again and sometimes they would not even heal up they would just get worse.My grades dropped and I had more trouble studying.I was also feeling more nervous and also there felt like there was a band around my head.I kept thinking that fruits and vegetables are good for you so I continued to drink 3-5 large glasses of fruit and vegetable juice every morning.I tried eating and eliminating things from my diet to see if that had an effect and I did not notice any so I thought the only thing I have done differently in my life at my age was juicing fruits and vegetables and drinking it.Now at this time time I was feeling so nervous and that feeling of a band around my head and the poison ivy symptoms and having so much trouble studying that I thought I would stop juicing and see how I felt.When I woke the next morning I was feeling nervous and I did not see a change that day.Two days after I quit juicing I came home from a late class and was getting ready for bed and my whole body shook like convulsions than stopped, that scared me!I never felt anything like that before and I was not sure what to do.I did not know if I was having a heart attack.I did not know if I should call 911 or should I drive to the hospital.Than about a minute later my body shook again and stopped and I thought what do I do.About a minute later my body shook again and stopped and I was scared because I did not know what was happening.I thought I would try and go to sleep and try and not think about it and try to relax but while I was in bed I must of had about thirty more of those episodes where my body would shake and stop and about a minute later it would happen again, but I was finally able to fall asleep.When I woke the following morning I was feeling nervous and scared thinking about what happened to me the evening before because I just was not sure what to do about it and that feeling of a band was still around my head.If I went to the hospital how would I describe what happened to me?I never heard of anything like this, would they say I was just nervous and send me on my way or what?I thought maybe in time I would feel like my old self and I would not have to describe what happened to me to anyone.I noticed that I stopped having dreams when I slept and often when I closed my eyes to rest or sleep my body from the neck down felt like it was balloned up to five times its regular size sometimes.As time went on I noticed that I had no more poison ivy like symptoms around my mouth and on my hands and that band feeling around my head was feeling better even.In time I kept hoping I would feel like my old self.Awhile later I woke one morning and whole body felt very stiff and sore and I had some trouble walking.I had no idea why.A couple of weeks later the same thing happened when I woke up.About two weeks later I was going to the store and just parked my truck and got out and the next thing I know I come to in an ambulance.I had passed out in the parking lot and someone had called for medical help.The medical persons wanted to take to the hospital but I said no and they said I should see my doctor which I did and he referred me to a neurologist.I went to the neurologist and had some testing done and it turns out I had been having seizures.He has no idea how I became epileptic at the age of 41.I am on medication(dilantin)and I have tried a couple of other medications but he put me back on dilantin and the side effects I have to say I don't even want to talk about.I never had the poison ivy symptoms since I quit juicing and the band feeling around my head did go away in time.I talked to three neurologists about how all this happened after I began drinking 3-5 large glasses of fruit and vegetable juice every morning for eight months on a empty stomach and they say they have never heard of that.They told me diet can not cause epilepsy.I am convinced juicing caused my epilepsy.I am not saying this is the cause of all epilepsy.When this first happened to me years ago I trusted the neurologists opinion on treatment and he said I would probably be ok after five years and I could get off all type of medication.I have been able to drive part of the time years ago, but things are not better but they are worse.October of the year 2001 I was driving and had a seizure and went off the road to the right and traveled a couple hundred yards and went through a fence off a embankment at 60-70mph in the air and hit head on and rolled my truck over.I came to hanging upside down trying to figure out what happened.I had trouble unsnapping my seat belt hanging upside down but finally managed it and then I crawled out the driver's side window and when I look up the ambulance is there and police and spectators looking down at me.All this time nobody came down to help me because they assumed I was dead.They took me to the hospital and I was sore and bleeding at spots but what hurt the most was from the force of the impact the seat belt broke a couple of ribs by holding me in.I have not driven since.I do not want to ever harm anyone driving!I have never had a accident before in my life!In 1994 I did not have a computer and I did not know how to use one but I did write a couple of letters by hand to epilepsy foundations and research centers asking about the fruit and vegetable juice and epilepsy and I got pamplets from EPA but no help.I have a computer now and I learned how to use it and I have written many many letters and e-mail them to organizations, foundations, research centers, neurologists, and even allergic specialists who say they care and are dedicated to epileptics and I have gotten just a couple of responses back and some of them were very rude with no help.The few answers back say they have never heard of drinking fruit and vegetable juice causeing epilepsy.I am not a neurologist or expert but with what I have learned from the computer and talking to other epileptics this field of neurology needs some real help.I have written to my local epilepsy foundation for help and they say write to main EFA so I write them and they say write to my local epilepsy foundation, is this how they help someone?I saw that the epilepsy foundation of western pennsylvania say at there web site they are dedicated to the prevention, control and community understanding of epilepsy and seizure disorders and I got a reply back they do not know any answers to my questions and say write to the main EFA office in maryland which I already know is a lost cause.I do not see the dedication they talk about.I have talked to persons on the computer with epilepsy and they don't know what to do anymore.I know a doctor can only do so much but with epilepsy and talking to a neurologist and the unfeeling way they deal with you is saddening.The advice you hear mostly from other persons is if you don't like your doctor than go to another, that is so easy to say but the person who says it should try it with no money, unable to drive, no friends, and numerous other problems and then they say if you cared you would find a way like it is as simple as that.I have asked about the ketogenic diet and I'm told that is for children, but that is another one of the things that made me wonder more about diet and epilepsy?The ketogenic diet has helped and even eliminated epilepsy/seizures in some persons, but if diet has no cause or relation to epilepsy/seizures how can I be told diet can not cause epilepsy?I have read that 50-75% of the time the neurologist do not know the cause of an individuals epilepsy but I am told diet does not cause epilepsy, I do not understand that.The real help for epilepsy is where to be found?I am positive the fruit and vegetable juicing caused my epilepsy.I have read on the computer that a person over the age of forty to come down with epilepsy is 4%.Those are slim odds and most of that 4% are persons over the age of fifty who have a reason and a known cause of there epilepsy like heart problems or known injuries.I have learned by my own research about hypoglycemia which is a low blood sugar condition and this deals with the pancreas and it could be over sensitized to sugar and is overactive in producing insulin or underactive in producing glucagon and this can cause an imbalance of nervous impulses.I've read that an imbalance of sugar can cause seizures.I drank up to five large glasses of fruit and vegetable juice on an empty stomach for eight months and even though the sugars were natural the body doesn't know the difference between natural and other sugars.What I read about the test for hypoglycemia it takes a certain diet for three days and then it takes a six hour test.I talked to my mother about having a test for hypoglycemia and without me knowing it she called the doctor's office to ask if they test for hypoglycemia and they told her yes and she called me to the phone and said she was making me an appointment to have the test but she gave me the phone to talk to the receptionist and I was told when my appointment was.I knew there was some preparations so I asked her about keeping a record of my diet for three days and she said no and I asked her how long it would take and she said just a couple of minutes, now what I have read it takes 4-6 hours and I asked her about that and she said no, so I said again this is for a hypoglycemia test and she said it would only take a couple of minutes.I am not an expert so I thought they must know because I specifically said hypoglycemia test.I show up for the test and the nurse was going to prick my finger and I asked is this the test for hypoglycemia because I didn't ask for a diabetes test and she said there the same so I said something is not right here and she said do I want to talk to the doctor and I said yes.It turns out they thought it was the same test and I was charged 75.00 dollars for a medical test they said they do but they really can't.I would like to know where is the hippocrate oath with doctors.For more than ten years my life has been so hard to describe!I have talked to three neurologists who say diet does not cause epilepsy and I am finding that diet can have an effect on some persons with epilepsy.I have been misdiagnosed and where does one find true medical help?I have tried to talk with my neurologists about diet and epilepsy and they continue to say diet can't cause epilepsy.You are probably thinking go to more neurologists and I don't have the money and the capability to but truely wish I was able to.The EFA tell me they can't find anything on diet causeing epilepsy and I write back and tell them to look at places where I have found information on it and they won't answer me back.I thought the epilepsy foundation of america helps persons with epilepsy?I have written to the american epilepsy society and I did receive a reply back from them and they said they forworded my letter to the EFA.Where is the dedicated help to persons with epilepsy?I would like to know did I damage my pancreas?Is there something I can do to try and straighten my health out from this horrible mistake of drinking so much fruit and vegetable juice?Did I dammage my brain?What can a person do to find real medical help?I have written to many foundations, research centers, neurologists hoping to find some hope but I receive no replys.I have written to professors of medical schools and received no replys.I have written to epileptologists and gotten no replys back.I have written to epilepsy organizations in europe and received no replys.I am not saying that what I am talking about is the cause of all epilepsy and I want that clearly known.I know that a medical diagnosis can't be made over a phone or computer but if there is knowledge and a starting point it would help.I have to stop this letter somewhere even though there is still so much to say and I know I'm always going to wish later I would not have forgot to say another important fact but writing is not my specialty and with what I've said I hope I got my point across.Is there a helpful and caring person in the medical field?If this was your life what would you do?The few responses I have gotten back always refer me to somewhere else but I wish I could find the place that says I'm going to help this person.Is there a place like that?I just keep thinking and hopeing that if the reason why epilepsy and seizures is found, it could be treated better.I know that all epilepsy is not the same in all persons.I have lost everything in my life because of epilepsy and I can't find anyone who cares.I have had my right to drive taken away from me, which I would never want to hurt anyone on the road.Is there hope or should I just not of had my seat belt on when I totalled my truck in a wreck from a seizure.Where is the help?Is there anyone who cares?Is there anyone who cares? What makes me more sure this has to do with food allergies is, I was talking to someone late summer of 2005 about diet and epilepsy. She told me peanut butter and cashews would be alright, so I started to snack on them more and after a time I noticed I was more nervous and having more panic attacks and having more seizures. My body itched more and my back ached and there were more symptoms. I have been told by neurologists diet has nothing to do with my epilepsy. I have always felt my fruit and vegetable juicing has caused my epilepsy but I can not find anyone who cares. I stopped eating peanut butter and cashews and after awhile I noticed I did feel better. I do have agoraphobia now and it is very hard to travel very far , but that doean't mean I don't want help! I am positive my fruit and vegetable juicing caused my epilepsy because of food allergies or food toxicity or food intolerance or food sensitivity and I can not find anyone who cares to find answers. Randall Miller codyrjm@aol.com
Sarah Friedner | 14/05/2007 06:22:00
My mom had epilepsy since she was months old as a result of meningitis at 10 months old. She tried different med her whole life, then at age 43 she has a brain surgery to remove the damaged tissue in her brain. She is cured and has no more sezures and can drive now. This truly gave her a normal life!
shana | 25/05/2007 04:16:00
I have been having grand-mal seizures for over 15 years and I was first prescribed Tegretol when I was 17 years old. I have been taking Dilantin for 13 years now and I am tired of the effects. I have started looking into Edgar Cayce's remedies so that I may find a cure. I don't want to just switch to a lesser evil drug, I want to be drug free and keep my kidneys. I have dealt with may strains in my life due to my idiopathic seizures. It has made school and work careers very taxing. I am a mother of 2 healthy boys 6 yrs and 4 yrs. I am very greatful that they are normal since I was taking Dilantin during my pregnancies. The visit that I had with the geneticist was undoubtablly the worst day of my life. When that woman told me all of the things that could go wrong due to the meds I just cried and cried. I also prayed and prayed for my babies to be healthy. I have to realize that I do not need to suffer any longer. I am putting faith in Edgar Cayce that I can free myself from the haze of the meds and from the side effects as well. I want to be a whole person again and not a broken one. I have done research...thank you for the internet...and have begun taking some of the remedies that Cayce suggested. I really want my drivers liscence back. It has been revoked since 1996. My plan is to take this journey and record my progress. I would like to heal myself and then be able to give such advice to others who may also needlessly suffer from this horribly embarrassing disease. I came to this conclusion 3 weeks ago when I had 3 seizures in one day. This is a rarity for me, I have never had that many in one day. When I was having my 3rd one, my 4 year old Gavin found me. He had never seen me have one before. I was sleeping when it hit me. He handled it very well, he went and told my husband that mommy needed him. My husband, who was outside working in the yard said he would be just a minute and Gavin told him, "no, she needs you right now". My husband was aware that I had already had 2 that day so he raced inside to find my 6 year old crying next to me at the edge of the bed. When I came around I was very upset that my babies had to witness such a violent and scary scene. This is my motivation and I invite you all to travel this path with me.
Shaky | 25/03/2008 14:43:00
I was diagnosed with epilepsy at the age of 17 after a particuarly bad case of shingles. I am now aged 39 and apart from a period of 2 years when I was 30 my epilepsy has never been controlled. I currently take Keppra & Topimax and have seizures at least once a month, usually twice a month. My specialists have suggested sutgery but cannot find the scar on the brain with scans, MRI's etc so have told me its not possible. They are now talking of an implant called VNS. I have'nt tried any special diets, they've never been suggested. I suffer from deppresion because of the epilepsy and find it hard to keep a job as my employers have been less than understanding. I dont think many people believe that someone with epilepsy can be left with it uncontrolled for nearly 23 years, I am really at the end of my tether and finding it hard to go on.
Bernard | 22/01/2009 15:09:00
My wife is currently using Dilantin, a pseudo LGIT diet, neurofeedback and a regimented sleep schedule with good results. I built a chart of alternative epilepsy treatments using all the clinical research data I could find for each of the listed treatment options.I do believe that neurofeedback is the way of the future.
The Patients Voice The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical and healthcare research company, which conducts interviews with all the different kinds of people involved in the healthcare process. They range from patients and their carers, to medical professionals like nurses, pharmacists, physicians and academics. Our mission is to find out what they think and what their experiences have been.
We can interview over the web, at home or at a special research facility; depending on what type of study it is, the choice is often yours. We also run patient diaries and blogs, so you can air your views as honestly and informally as you like. We want to ensure that you have access to the best research experience, and in turn, our clients will learn from your story. Our clients are quite diverse. They range from pharmaceutical or medical device companies, to charities and government bodies. The Patients Voice is open to anyone in the world who wants to give an opinion and would like to try to make a difference. This forum gives you power by allowing you to get YOUR VOICE HEARD.
You should always consult your physician regarding any medical issues. While we attempt to make sure the information on this site is as accurate as possible consulting a medical professional is always to be advised.
Membership of the Patients Voice is Free and open to anyone.
To become a member of the Patients Voice please enter your email below and click Submit.
