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I Get Seizures But Not Diagnosed With Epilepsy

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I am 18 years old right now and I have been taken into the hospital a few days ago because I had an apperant seizure. The first seizure that I have ever had was when I was 16. I was on trileptal for 1 and a half years and then got off and everything was fine. I then either passed out of had a seizure exactly two years after my first one while I was away in college. I am still not sure whether I passed out or had a seizure. Then a month later I had a seizure in a dining hall while I was eating. Three weeks after that I had my most recent seizure. They not now only continued me on my trileptal, but also put me on depakote er. The tests like the cat scan that was done to me in the hospital turned out clear. My last eeg also turned out clear. Nobody knows what is happening to me.
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First Helper LovinJanica
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replied April 28th, 2006
Experienced User
So I am not clear from your post. It does not sound that you were diagnosed as having seizures. It is possible to have seizures even if the eeg is clear if you did not have a seizure while you had the eeg. Eeg is just a short period of time. Ct can and mri is frequently normal even with someone who has epilepsy. Epilepsy is just a term which means someone having repeated seizures which is a recurring misfiring of electrons in the brain.


Sometimes having a longer eeg like 24 hours or longer is a good idea when the tests are not helpful. Have you had a neurologist check you out since this has continued to happen? Some other things to get checked would be blood sugar issues, syncope for fainting spells or heart arythmia which sounds scary but can really be a benign thing, it all needs to be checked out since loosing consciousness is serious when it happens at the wrong time like driving, swimming, bathing or doing sports.

Please get seen by doctors and get proper care!

Good luck
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replied May 12th, 2006
Experienced User
Hi There Stant.
Hi
i am from spam unapproved, I am like you in some ways, it does take some people who have seizures a long time to be diagnosed. Mine all started when I was 21 that is now almost 3 yrs ago. The drs didnt believe me that I had a seizure but I had people with me who saw it, who called the ambulance for me as I had 5 in a row lasting 40minutes. I was then put on a low dose of tegretol or ( cabramazapine) it didnt work, it made me have even more seizures and it made me paranoid. I had head ct scans and then an mri scan all came back normal. I also had an eeg done for 20 minutes and nothing came back on that either except for stress on the first one. The second eeg was a sleep deprived one where you have to stay awake all night and have no caffeen or any stimulants to keep you awake. That 20 minute eeg came back normal. With no signes of epilepsy. I was told that it was all in my head, and that I should seek profesional help from a shrink. So I did, nothing became of that they said I was normal, no depression. So my normal gp upped my doseage of tegretol and changed me onto the slow release tablets, tegretol cr (cabramazapine controlled release) and with that I had to take epilim (sodium valproate ) I was up to 800mg a day tegretol and 1500mg a day epilim. Still having seizures. I started seeing another neurologist after my blood wasnt taking the drugs well. It was like the more I took the lower my levels would be theraputic. So they decided to take me off the tegretol in 3 days immediatly it was making me sick and put me on keppra ( levetriacetam) I was up to 2000mg of keppra when I had to go to hospital and have a veeg done. And 2400mg a day of epilim. There in hospital they took away my keppra for the tests, 4 days I was there. Connected to a computer tv screen and microphone. I had 5 seizures all non epileptic they said, because my brain showed no epileptic charges. But my seizures were like real seizures. The drs now say after 3 yrs that I have epilepsy I am controlled on 2400mg of epilim I am no longer on keppra I also have anxiety and I also have seizures from within my deep subconsious. So I am seeing a psychologist for that about things in my past. Yes it is hard when no one understands, but atlease I know now that I am not crazy, and I hope that my story helps you out. Just keep trying I saw 3 different drs until they finally got me to a epilepsy unit. And its also helped me get my life back. I hope you find someone willing to listen to you. If you would like you may write me.
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Users who thank sami_1982 for this post: mgnm9191 

replied July 22nd, 2011
epileptic Seizures
Hello i have Epileptic Seizure been having them since i was 18 years old and i have them all the time they have me on 250mg Keppra twice a day, and i just had a seizure July 18th 2011 and i went to the ER and they said they did blood work, Cat Scan, MRI and EEG and everything came back normal, since i was 18 the doctors said all my test came back normal and i would hear the nursing asst. over talking saying they think im faking thats its all in my head. All i would do is cry cause i know im not faking and that i dont feel like myself, i be weak, my body be weak, i be hearing and seeing things i be confused all the time, I be having memory lost im just going crazy i dont know what to do, I lost my job do to this cause i kept getting sick so i couldnt keep a job i had to quit school do to my health and its like i have no income no help to get help with my health problems. I tried signing up for Social Security Disabilty and got denied all five times cause they say im ok and im not, These seizure comes and goes and i need some help. How is it that these doctors go to school for all these years and get paid so much money and cant help me and cant see that something is really wrong with me, what is these doctors good for, im so scared cause i feel like im gonna even die or my brain gonna be lost like this forever and i just hate feeling this way. Reading ur story help me a little bit to believe theres a doctor out there that can help me but who knows, then it dont make it no better cause i dont have no medical insurance so these doctores really dont want to help me and i dont have a job to pay for one cause i cant work do to my health is there any advice you can give to me to help me please. thank u for your time and help Ja'Nica
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replied June 19th, 2012
Hello,
I am 18 years old and have been having seizures since I was about 14. I have had several eegs, cat scans, and mri's, but they were all clear. I do not have epilepsy, but I am having legitimate seizures. The theory that I am getting from most of my doctors has been stress and anxiety causing them. In my case medication like valume,topomax, and even medical marijuana help me to not have seizures.
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replied May 12th, 2006
Epilepsy
I am like youself and sami 1982 it took me about two years to get my doctor to believie me that I had epilepsy I am on a high dose of carbamazapine and sodium valproate I am also on a water pill for high blood pressure but I was never away from my doctor with the same signs and sytmons I was diagnosed as having epilepsy after two and half years loss my driving licencse for a year after being seizure free in that year you get your licencse back and than it is renewed for every three years I hope that you get to the root of the problem , please get in contact with me. Stant I can give you useful addresses for epilepsy centres and helplines as I have join them. So please get in touch with me thanks slutpaul
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replied February 21st, 2009
Hi
My Daughter died at 24 on the 27/10/08 from un-diagnosed Epilepsy. She had had it for 6 years. You must write everything down and ask for second opinons constantly. You must push the specialist and get down to the bottom of it please.
Lynn
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replied April 14th, 2009
you're not alone Stant
I was told that I had seizure disorder but not epilepsy. I was told that more than once. I don't really know what that means exactly, what the difference is that is. I take Depakote, but not the ER version. What I can say is try and watch your stress level. Stress effects our physical body in a lot of ways. I personally went through issues of thinking thoughts like what healthy man is going to want to date me and so on. I'm telling you from my experiences, people will still like you and if they have an ounce of common sense they will care for you that much more. Also, I saw a website where a group of people were trying to control there seizures through yoga alone. What I do is still take the medication and do yoga. I was also told by a doctor that taking fish oil and vitamin D also help in seizure control. Take Care!
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replied July 16th, 2009
Im 20 years old and ive been having the same problem for about 2 years. Ive had EEG and MRI's and everything has come back normal. I even wore a EEG halter for a month and everything came back normal. My doctor tld me i was having complex migranes or silent seizures. i took topamax for about a year and just got off of it and they came back. so im dealing with the same thing with no diagnoses. Take care.
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replied October 7th, 2009
Epilepsy misdiagnoses please help
When I was younger sometime around elementary school I ran away from home and once I was caught I acted as if I had amnesia. I was taking to the hospital doctors ran all these test (blood work, eeg, cat scan, ect) afterwards the German doctors diagnosed me with epilepsy. I am now a grown adult and its always been in my records that I had a seizure that caused my behavior of running away. I have never talked about it until now and have always wondered if I know I never had a seizure then what exactly is my real diagnoses? If I would have been taken to the hospital before the event and doctors going over my eeg and the cat scan what would be my true diagnoses?
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User Profile
replied October 25th, 2009
That sounds like my situation almost exactly. I had my first grand mal seizure while I was driving at the age of 16. My cat scan, MRI and EEG all came out normal. The neurologist put me on Lamictal, but after 3 years of being seizure free I decided that I no longer wanted to take the medication and got off of it. I am now 20 and had been off the meds for nearly a year before having another grand mal seizure 2 weeks ago while driving. I was taken to the hospital and all the tests again came out clean. This time around, my doctor wanted me to do a sleep-deprivation EEG. It turns out that I've been having petit mal seizures without even realizing it. I'm back on Lamictal, and have lost my license again for another 6 months. I feel like my wings have been clipped... being a college student (who lives at home) at not being able to drive is extremely difficult. I also just want my medication levels to get sorted out. Take care and God bless.
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replied December 17th, 2009
I had my first grand mal seizure ten years ago when I was 16. All of my tests came back normal. I had another one a couple months later with all the same results. The doctors decided to put me on medication at that time. I was allergic to the first 4 tried and ended up on phenobarbital. I have been having seizures off and on for about ten years. They have never been well controlled with medication. All testing in that time has come back normal and no doctor has been able to give me answers. Honestly after a while I stopped even worrying about it or even hoping for answers. I am leading a pretty normal life now. I have had 2 healthy kids and a wonderful marriage. I still have seizures. Sometimes years sometimes days in between. But what can you do right.
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replied June 23rd, 2010
17 yr old son just had a grand mal
lonestarstatebaby & navywife2

Thank you for your posts. I hope all is well with you both. My 17 yr old son had a Grand Mal 2 weeks ago while on vacation. Never had one before, healthy as a horse and very athletic . His CT and Blood work and EEG are all normal. We go to a Neurologist tomorrow for a consult. He and we are pretty bummed at the moment.

We don't know what to expect at all. Do your anti seizure meds affect you in any way other than controlling seizures?

We are just looking for answers.

Thanks

HLD3
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replied July 21st, 2010
TEGRETOL cr
I have had a vehicle accident 11 years ago and after 4 years I had developed Hydrocephalus. I did a brain surgery and have a shunt installed. Now after 7 years I just have a few siesures. g2r

However, I was not diagnosed with epilepsy, after CT scan and EEG comes out clear it was diagnosed after careful review, to be caused from possible structual brain damage, stress and sleep deprivation. Shocked

The Neurologist is now waiting for an MRI to be done to diagnose anything different eg, Tumor. Currently, I am in best of fitness, good BMI and regular exercise. However, got license suspended and now I am placed on low dose of Tegretol cr. doctor
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replied February 28th, 2012
STANT OR ANY ONE ELSE WITH THIS ISSUE
I understand your questions and concerns I pray they have taken you off trileptal or that you have stopped taking it since your post. I am also on an anticonvulsant I am not epileptic never ever did I have seizures until my doctors wanted to try some new meds. Lithium was my first I did great with my Bipolar for about two years. I started having small side effects I had never had. I made them take me off when I started having severe convulsions before I went to bed. They had recently put me on lamotragine and this time the seizures started as soon as my dose had hit 300mg. I have quit taking this as well and I am in the process of trial and error with non anti convulsants. I have searched every where and your post from quite a few years back has been the only thing I have found similar to my issue.
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replied April 26th, 2012
TRYING TO PUT AN END TO THIS NIGHTMARE!
I am a 20yr old female, healthy as can be up until a couple years ago i started getting really bad head aches & one day 6 months ago my friend found me laying on the kitchen floor, i must have been down on the tile floor for 20 mins or so , i went and saw my dr and told her what happened so i got every test known to man done to me & then they all came back normal. about 2 months after the testing is when i had my first witnessed seizure from my bf and it happened every night when i would go to bed. then they started happening durn the day. MORE TESTS, STILL NOTHING. i meet with a nuerologist for the first time on monday & i am hoping for some new answers! i am on keppra 250mg twice a day to try and help control my "seizures". i havent had one in about a week now. sometimes i feel them coming on, sometimes i dont. i am not allowed to drive until i am 6 months free of a seizure, so as of now it feels like i am never going to be able to drive again. I just lost my job a couple weeks ago because i have missed so much work from having seizures, catering weddings and cooperate events is not the best thing for me now. & i just got health insurance which is why after over a year i am finally seeing a neurologist and an endocrinologist, the only abnormal part of any test i had was my mri, my pituitary gland (the "master gland") in my brain which controls a bunch of stuff including alot of hormones - that gland in my brain is a little swollen which puts stress on your eyes and nerves surrounding it but apparently thats not causing the seizures, so far they think its non-epileptic seizures due from stress and anxiety... i want this bad dream to end! i want my life back. *and yes i even had doctors think i was either making it all up, which caused me to walk out of 5 different hospitals in 5 days a couple months ago. NO ONE wanted to help me. it was insane!! then i had a grand-mal in the emergency room @ a hospital but they ended up lying to me about medications they were giving me which was absurd, so my boyfriend and family took me home. wish i could get this all straightened out!!! and w.e u do if ur having these seizures like a lot of us on this if u get offered to take ativan or klonopins... generic or not DO NOT TAKE THEM , they will most likely cause u to have seizures and they are very addictive my dr just weaned me off of klonopin which i think caused the last couple seizures i had. and also if u are addicted to certain drugs i guess that can even cause seizures so be careful and SAY NO TO DRUGS! really research a drug before you take it... research , research, research!!!
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replied July 19th, 2013
I'm 28 years old and 6 years ago I had a seiuzer I was on dilantin for 6 months and the seizer free until 2 years ago I had one camping and I have been having then two to three months apart but all my results have all been normal all the same results the same so just about six months ago I had one and haven't been able to drive or be alone since so my life I really stressful right now but augs 1st I beable to call my nuro but he says that there is nothing else they can do and I don't believe that cause you don't just have seizers for unknown reason so he has me on lamotragine 150in the morning and 175 at night I have two kids so it makes it really hard and hard on my mom too cause I'm staying with her everyday
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