Could someone please help me understand this? =D.
I will make a comment here. HI.
It gets really confusing though at those visits as they use alot of technical terms when discussing everything.
I think some doctors put it in that perspective till they find the cause.
As far as the public avoiding it, it is sad, however epilepsy is one of the most stigmatized disorders and one of the least underfunded for research.
I have had 3 seizures in my 57 years of life; one when I was an infant and had a fever,, one when I was 12 and had a fever of 104, and one when I was 22- last semester of my senior year in college, taking finals- stopped taking my medication, wasn't sleeping or eating.
l me you sympathize but don't you dare l me you UNDERSTAND! There is no difference between a seizure disorder and Epilepsy, it's the same thing. If there is a neurologist out there that does not know the difference he needs to go back to school!. How right you are! No one can understand how you feel unless they have walked in your shoes.
no that's not it. one day at a time, right?. I don't know. you know the level of life. So I guess that makes sense of why I'm tired. I want to be able to be what I was before four years ago, but I know that won't happen but if I could just get at least somewhat closer. quality! Quality of life I have right now. Very frustrating. kinda scared to though. I think I'm depressed but not sure, sometimes I think things are digressing. I hate messing with my meds. That makes sense. Finally they declared me epileptic recently, after four years. They also have put on my diagnosis as intractable epilepsy. But we all march on. I hallucinated the other day, I suppose that is a type of seizure too. So I'm thinking of going to see an epileptologist. I don't know. can't think of it. I'm always so tired. The doctors said I'm constantly having seizures and when I don't my brain waves slow down significantly. what's the word. but I don't like the. I don't want to have surgery.
I think they do it that way till they find a cause for the seizure to see if it is truely epilepsy or just seizure from cause accident.
When i was working i would get auras and people would look at me weird. having white and yellow auras and smells that were of rubber and chemicals. dr thinks its anxiety. shaking, tremors, teetch chattering, out of body experience. i was on dilantin and got a thryoid condition. i am still having problems. i am on dakotate 1500 two times a day. i sure felt weird. i agree people view us as different. i know it is prewarning signs of sezuires.
Again, I apologize for conveying a message that was meant to be positive rather than negative. ~Karen.
Don't l me I have or had a "fit". Your right, dogs have "fits" people have seizures.
I can relate to what you've said about not using the word epilepsy.
What is the difference between a seizure disorder and epilepsy? I had a bad wreck almost four years ago now and for the longest time the dr.s kept calling my seizures, actually the diagnosis was, seizure disorder. I don't understand what the difference is. Now after the later video eeg they are diagnosing it as epilepsy.
I have been working since I was 16 and had a license since I was 18.
people dont understand unless they have the problem. that is so sad you were honest and your job let you go. a lot of people will comment on rude this. i like what you posted, some doctors sure dont know and they act like they do. i dont l many people, i think i should because what happens if i have one, i hate it when people say i have a brain problem.
Some patients feel better hearing that they have a disorder than something that sounds like a disease. There are a lot of language and verse used in medicine meaning the same thing. Ditto! The older term is Epilepsy the newer term is seizure disorder.
He told me "Seizure disorder" is just a softer, easier way of saying "Epilepsy" and not to kid myself. I once had a Neuro l me that "seizure disorder" and "Epilepsy" are the same thing. The better I take care of myself, eat right, exercise, and get plenty of rest, the fewer seizures I have. In my case, I'd had more than one seizure, and did not have a strategy in place to prevent the next one. That's when I was started on meds and have been on them since in one or a combination of different drugs and I still have seizures.
Who would have known that years later my daughter would develop epilepsy when she was only two days old. Years ago in my first semester of college, this guy told me that he had epilepsy. She's now 24 and to this day I am so ashamed of my behavior and have such remorse on treating that young gentleman like he had the plague. All I could think of was leprosy. That freaked me out. I was afraid to be near him and avoided him as much as I could.
And why is it that I feel that society still views a person with a seizure disorder differently?
It was the brain damage my daughter sustained as a baby that taught me the values of people regardless of their inlectual or physical ability. Same as the way your pastor showed you.
Like if i was in wreck and had seizure it does not mean I have epilepsy it could be cause because of something like head on clonlision accident. An I never had another seizure agian in my life.
The 2 times I had brain surgery I never even got phone calls before or after. Even my own family is this way and it is blatantly obvious. People that claim they understand yet don't deal with it have no clue whatsoever. They also never call me to visit even though it has been explained to them all the risks of living with refractory bitemporal mesial temporal sclerosis.
~Karen. People fear what they don't understand. I was one of those people. Now I do as much as I can to educate people so that they weren't clueless like I was when I was 18.
Then there ones that have seizures everyday as in people like me my cause is scar tissue on my brain. There fever seizures.
So what, I have epilepsy, get over it! if you dont like me for who i am than that is your bad luck for not getting to know me!!! - I used to have a real bad problem with insecurity, thinking that people didnt like me, and I would try and hide the fact that I had epilepsy, My pastor seen this and told me to go home and look in the mirror and l myself "I like myself" and come to grips with the fact that I had epilepsy and that I was a cool person and if nobodly could see that, than that was there bad luck! rgch.
It was quite interesting. I have times when the meds are not working and I have been in the hospital and recently the docs told me the cause of my sz. I was amazed at the terms, they actually can do surgery at only a few hospitals in the United States. To make a long story short. MRI's are quite helpful in the Epileptic Unit. I have had a sz disorder for 40 years. Perventricular Nodular Hetertopia, it happens in the womb of the mom. not in the temporal lobe, or any lobes. It effects the 4th cranial nerve and causes abn.
THEY BOTH MEAN THE SAME THING!
maybe im wrong but i am starting to break through my meds and i have them sometimes even with my meds thank god i only have them at night though my seizures have always been at night and i start having them right when im starting 2 fall asleep and ive been 2 multiple doctors and hospitals and no one can figure out why if a seizure disorder is suppose to be only one seizure than i know for a fact i dont have that if anyone out there has been through the same thing let me know im just so confused about this. I have had a seizure disorder since i was 15 and now i am 21 but i am starting to think that i have epilepsy i cant even go one night without my meds unless i have multiple seizures in one night.
I was taking Dilatin & Phenobarb, but when I needed to have all 4 wisdom teeth removed after graduating from college and my white blood count was extremely low- the culprit was the Dilantin, my neurologist told me to stop taking it and just stick with the Phenobarbital.
but 2 people on electric wheelchairs came by my home today and my daughter took them cupcakes lol I feel oh so much better "WALKING" out there with her. etc. no big deal. I posted also and have said this before to others. disorder does not set them back near as fast as saying yeah I have EPILEPSY and for folks having these problems at work etc. and for folks having to face facts that they may live with this forever, go volunteer at a hospital or a V.A. it will make you feel so much better, I have had 3 gmals this week and feel very sick, bad, ???emotional. hospital or go to a nursing home etc. When talking to others, co workers, friends, even family using the term EPILEPSY it seems to scare people like the terms cancers or mental illnesses, scare folks, I have found ling someone you have a SZ. just simply switch the words and go on lol.
I was trying to show my personal example of how I did not understand epilepsy whatsoever and that I now feel bad about it. However, 35 years ago there wasn't a strong advocacy to educate people about conditions such as epilepsy or to teach people that those with developmental disabilities are just like you and me. Yes, it was my loss for being afraid to be closer to this person. My post was not meant to offend you but merely to acknowledge that people fear what they do not understand. I was very naive.
---Rambling can be due to our meds ;)........My experience is it depends on who you are talking to--various doctors say a "Seizure Disorder" is just one episode, but if more than one it is "Epilepsy" --however, most of the doctors I see use the term "Seizure Disorder" on my chart/diagnosis paperwork----I have been having complex partial seizures since I was about 14--Unfortunay, I was seeing very ignorant doctors at the time and was misdiagnosed for years with everthing of being "borderline diabetic" to "there is nothing wrong with you"---it freaked me out to the point that I came to the conclusion I was loosing my mind and did not l any more doctors about those "episodes" and just endured it when I would have "one of those really freaky feelings" (as I termed it then) Finally, in 1984 when I was about 27 I had several hours of back-to-back gran mal /tonic clonic seizures one morning - the paramedics were called and I woke up the next night in the hospital..Doctor told me I had a "Seizure Disorder"---- WOW, It was actually great to find out I was not loosing my mind because I had thought I was psychotic due to the uninformed physicians I had been seeing!
Good luck to all of you who endure this or who have loved ones who do-----hopefully, one day they will develop a cure === until then, I just let the ignorance roll off---if people are too stupid to accept me because of "my condition", I don't really care-----Who Needs Stupid People In Their Life?? LOL :) Peace.
for over 14 yrs and have almost never used the term EPILEPSY. I have had szs.
It is very irritating to see so many people throw around the wrong terms for the wrong problems. One that I remember has to do with the epileptiform activities that show up in EEG readings and one that he was also pointing out was that as far as level IV comprehensive epilepsy centers only treat people with epilepsy. Although it is hard for me to remember, my epileptologist did explain that there was a difference between a seizure disorder and epilepsy.
Like I have epilepsy because the scar tissue on my brain. As to some have seizure disorder because it is not epilepsy being the cause behind it.
Do not really know why? at first maybe because I did not know better and lol truth fully until just a few yrs ago is the ONLY topic that involved me, that I did not OVER DO, OVER LEARN lol to a fault adhd style, ????do not know why? possibly because I just was afraid to know???
In comparison, I remember all of my visits with my past neurologists,and there is a huge difference, as they would use seizure disorder and epilepsy interchangeably.
In high school I was an athlete, earning multiple recognitions, I was involved in many of the drama productions and had a solid academic record. I have been taking phenobarbital since I was 22- no seizures in 35 years.
Unfortunay, the majority of society is ignorant and uninformed about "our condition" (someone mentioned fear of the unknown) now, when I l people I have a "Seizure Disorder", I sometimes get responses such as "your an EPILEPTIC --you mean you could have a fit???" --So, I bite my tongue and so "NOOOOO, I am not DOG--I will not have FIT.I have S!".and of course, if they continue with their idiotic respnses, I have to l them that "I understand their ignorance, but it is a medical condition that A Lot of people have" I actually was let go from a job when I went in late one day after having a gran mal/tonic clonic in the early morning---in my stupor I had wandered into the bathroom, got in the bathrub and busted my face open on the faucets when I fell in the tub---after I got together, I went to work and told one of the girls in the office what happened because my face was all cut up, swolen and brusing---later in the day, I was told by manmagement they were cutting back on staff and that would be my last day---- GO FIGURE and thank you!! (----kicker is, it was a law firm!). I can totally understand where some of you are coming from because prior to me finding out that I had a "Seizure Disorder / Epilepsy", I felt the same way about people who told me they had "Epilepsy" I was somwhat afraid of being around them.
Rick. I may ramble a bit but I WILL get my I.Q. back in a few days "I hope" lol.
nancy. Som docs don;'t like to use the term epilepsy wiht people becuase it may scare them. It just depends who you are talking to. But those word are the same thing, they are just interchagable.
Some people (doctors and patients) use either term. There is no difference. ~Karen peace R.C.
My dilemma is should I stop taking the phenobarbital or should I continue as I have for 35 years? I wonder bc like any drug, I am sure that all these years of taking this drug...may have a long-term effect on my body? I have read that phenobarb is not that harmful, but it still hurts when there is a blood drive and I cannot donate.
Epilepsy vs seizure