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darina
REAL?? Fake?? HELP MEE
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HI im now 18 i started having seizures on the 5th may 2006 my first was in school i was on a bench i was really cold and it was near the end of the first break i remember going to sit on the bench thats about it. whilst sitting on the bench i passed out and went very stiff then began to 'shake' whole body going blue around the lips, salivating uncontrollably, no foam. and was taken to hospital.
and they called it as a one off and was discharged. then i continued to have these every two to three days most of which were at school (funny enough i spent most of my time there) i then had one at home coming down the stairs during which i stopped breathing my mum managed to bring me round before the abulance got there, when he got there i was very very sleepy and laid down before i fell down the ablulance guy flicked my eyes and i moved he then took me to hospital and form then i was diganosed with faking it consusly this continued for 3 months the school held an assbaly to tell everyone to ingrone me as i was attention seeking! i lost all my friend was bulliede and i had the same at home soon i was very depressed and started to cut, very rude which apparently didnt help my case. eventually i was kicked out of home, lost everyone and was failing i was predicted As! and was told i was faking then i needed to stop i began to think maybe i was and that i was mad and hated myslef making everything worse.
then out of the blue a random ECG (EKG) that found WPW a rare type of sudden death i had that sorted with lots of op.s. but im still siezing but im getting no help my EEGs come back normal and the MRIs are normal expect for asymmetric venrincals.
im still siezing after 3 years thought not as often on a few times a month the siezures im told are still the same, i have cut my head open, bit my tongue, wet myslef in public.
it ruined my life i can work, do college (tryied to do all these things) still dont get on with my family and live alone on benfits!! and struggling with life siezures and sever depression (i have had many ODs).
i really need help most people who see them say epilepsy! plz i really need help any ideas i'll anwser your question if you need to ask them to the best i can.
please help!
Recent Comments on this Discussion
hey darina.
when reading this it brought back memories of when people thought i was faking. i had fit after fit causing injuries much alike yours and no one would believe me - they all said i was just attention seeking, thing is i couldn't remember them so i knew it wasnt. if you cant remember what happens during them then i would say its probably epilepsy because your seizures sound alot like my grand mal ones.
it took them a while to fully understand that i wasnt faking, involved me going in to a coma from it until they finally realised that it was impossible to fake this. i understand what your going through, what do you parents say? and by the way your school has no right to announce that in assembly, its your private medical and its not up to them to judge weather its fake or not and decide on telling the whole school.
if you wanna email me privately its - rhiannon_cole@yahoo.co.uk
hope this is of some help xx
if it help i asked a mate to write an account of a recent one.
I realised you were missing and that someone was in the disabled toilet for a while. I put 2 and 2 together and opened the door. You were lying on the ground unconsious with bubbles coming out of your mouth. there was vomit up the walls and in the toilet. I called for Danny and we checked your pulse and whether you were breathing. I did pulse and you had a strong pulse, danny checked your breathing and you were. You were not responding to us talking to you. You then had several fits, there was a couple of mins break in between but you did not regain consiousness. After about 5 mins I called an Ambulance. You rose up a couple of times and then lapsed back into either unconsiousness or fitting. Your fits were violent and you moved with each one, further out of the door. (Dont worry I was on privacy watch). I think you fitted for about 15-20 mins before the ambulance arrived and i am not sure how long you were in the toilet before I found you. I dont think it was longer than half an hour. When the paramedics arrived you had stopped fitting but were very sluggish. You seemd to understand what they were asking to you however were having difficulty complying. You were pretty out of it. Then you went into the ambulance, doors shut and thats all I can tell you!
Hope its helpfull honey!
xxx
Ok type of fit:
Whole body convulsing, arching of the back and side to side convulsions. Your arms and legs were thrashing around and you kept on crossing you legs. A couple of times you would stiffen then convulse. When you were unconsious inbetween fits we untangled you.
Hi Darina
I only just read your plight on here darling, but it brought tears to my eyes reading it, and I only wish that I'd seen it before. I hope that by the time you read this, things have got a bit better for you, let me know if you want to talk ok, I have had Temporal Lobe Epilepsy since 1986, and I've had brain surgery twice, tried all the tablets, and gone through all the prejudice and ignorance in the workplace. I am a lot better since my surgery, but I still get the odd "wobbler" as we all call them. I guess you must have seen a specialist, are you taking anti convulsants, do they help, and are things better for you? Let me know, as I said, if you want to talk or ask me anything, ask away, I'd be only too pleased to help. It's a very common condition that we have, but so misunderstood. Keep your head up and your chin, it's a sign of great intelligence , and only special people get epilepsy!! I hope you will let me know how things are, I'm writing a book about my dealings with epilepsy, I've studied at university, and I really just want to do my bit to raise awareness. I hope you will write to me soon.
Love
Elaine x
thanks for your comment go to know im not the only one had it rough form people because of seizures. and its help to know you went to uni! i new nothing about epilepsy before tthis and have bin reading loads on it to me the feelings before hand and wat others say makes me feel thats what it is. what do you think?? i have only seen a nero. once.
the lady at the college i went to before they said i couldn't come back said it sound like her siezures TLE coz i have a really werid aura and 'bite' at the air frist before i go down, and she said all her EEGs are normal and she had it since she was five!
i just really wanna know how to get this sorted and get on!
im going to add you is that okay??
Go to a neurologist and talk it out with them. You may have to undergo a lot of tests. This past June I started having between 5 to 20 full body seizures a day. My EEGs, MRIs, adn CT scans were all coming back normal. I had them daily up until last week.. I have been in the hospital so many times..
My last EEG that was done by an Epitologist in the hospital found abnormalities and has put me on seizure meds that seem to be helping. Before the doctors were saying I was faking for attention, it's rough but you'll get through it, hugs.