just read your post now and i too am experiencing some of the problems that you have been facing, and i am sooo fed up and i have onli been going through this for 16months soo i really do sympathise with you as yours has been going on much much longer.
Although i have what is described as a typical grand mal seizure, e.g. i typically loose contiousness, stiffen up shake violently during this i may stop breathing i always bite my tongue or the inside of my mouth and sometimes i am incontinent.
my problems with seizures started out of the blue when i was 19 years old, i am now 21 years old, i have had numerous tests done such as mri, ct scan, two 1 hour eegs as an outpatient and a 48 hour eeg while an inpatient. so for dr havent given me any answers all i seem to get is if's but's and maybe's.
the first eeg which i had done showed some non-specific abnormalities (slowing apparently) about 2 hours after i had this test done i had a seizure and was brought back to hospital where i was diagnosed with epilepsy and started on lamotragine. i then continued to have seizures so i was given another drug called clobazam aswell as the lamotragine. i was on an increasing dose, after falling down all the stairs in ma home and hitting my head numerous times after loosing contiousness, i had two seizures one after the other without fully regaining contiousness, so again i was taken back to hospital.
I was admitted for observation (which turned out to be a two week stay in hospital) while in hospital i continued to have seizures and my medication was upped faster than it should have been, on one day i had about 17 seizures, dont realy remeber much of it though all i no is that i was given lorazepam or diazepam to stop them. i was taken for an eeg and apparently during this eeg i had a seizure and there was no abnormal brain activity recorded, so drs decided that i didnt have epilepsy and that they were non-epileptic attacks due to a chemical inbalance in the brain. (i was glad that i didnt have epilepsy but was still confused as to what was causing these seizures) i was discharged from hospital and they said a referall would be made to see another dr to discuss the cause of the seizures. but never recieved an appointment, after about 4 months of having seizures they stopped, and i was seizure free for about 7 months.
then one night i was out drinking with friends in a club after going to a party when i suddenly collapsed and had 2/3 seizures. i did not regain contiousness following these seizures and when i was taken to hospital i was so uncontious that the drs decided to put me on a life support machine and i was taken up to the intensive care unit. the drs initial thoughts were that someone had put drugs into my drink and i had reacted badly but that wasnt the case the toxocology reports came back clear, but i had already been discharge before the results so again no follow up was arranged.
about two weeks after i came out of hospital i had another seizure while driving luckily i had onli just got in my car and was turning round on a back street so i didnt crash and no one was injured. again i was taken back to hospital and kept in for another week, where again they wasnt really able to give me any clear answers only say what they think it may be and i was supposed to be referred to see another dr but never recieved the referral.
eventually we decided to pay to get a second opinion because it was taking so long on the nhs, finally i seen a dr who decided that i may have epilepsy and that it is possible to have epilepsy and non-epileptic attacks and it is also common. (oh forgot to mention the atacks which i had while in hospital were different from the ones i am currently having) so he arranged for me to have a 48 hour eeg done, which i had done and the results came back normal but i was told that this can be the case because i didnt have a seizure while being recorded, so still no further on but i am now waiting to see a dr who specialises in epilepsy and a cardiologist.
to make things worse i cannot drive, go out alone for fear of ending up back in hospital, i am not allowed to work because i am deemed a health and safety risk, and to top it all off i was told today that i may loose my job so all in all its actually ruining my life and the drs cant make up their minds i dont no how much longer i can cope for either, any suggestions of what may be causing these seizures would be helpful.
good luck to you all with findin a diagnosis, but i recon the health care system has gone mad and i no longer trust dr's