doihaveepilepsy
New
- Messages
- 51
- Reaction score
- 0
- Points
- 0
well, where do i start, i am a 21 year old female and i live in the uk, my problems with seizures first started in septemebr 2006 when i was 19 years old. i was out in a shopping centre with a friend and i collapsed and had what i know no was a seizure (tonic clonic apparently from what she described) i was kept in hospital for a couple of days for observation and arrangements were made for me to come back as an outpatient for further testing.
after being discharged from hospital i was fine for about a week and a half and then i had another seizure, this was when i decided that this may not have just been a one off and there may be something wrong. i continued to have seizures and i had a 1 hour eeg as an outpatient.
About 2 hours after having the eeg done i was in university and i had another seizure i was taken back to hospital where doctors told me that my eeg showed some abnormalities (just found out though that it was nothing specific just slowing not too sure what that means though) i was the diagnosed with epilepsy and started on some medication called lamotragine. i was to start on a small dose and increase it each day, i continued to have seizures and after about 1 week i had a seizure while at home and fell down all the stairs hurting my foot and back (not too serious though thank god) my mum too me to the doctors who then gave me another drug called clobzam to take aswell as the lamotragine, he told me that it was normal to continue having seizures because it may take a while for the medication to take effect.
One night i had a seizure and did not fully regain contiousness than i had another one so my mum phoned for the ambulance and i was taken back to hospital yet again (soo frustrating) this time i was kept in for 2 weeks during my stay in hospital i seemed to get alot lot worse and was experienciung alot more seizures and according to my mum they were different from other seizures. on one day i had about 17 seizures and drs gave me lorazepam or diazepam to stop them, the medication was also increase to a higher dosage alot quicker than origionally planned. i was taken for another eeg on this day and apparently while i was being recorded i had a seizure and there was no abnormal brain activity.
good news - i thought, i was told that i may have non-epileptic attack disorder, i was kept in hospital for another week and then discharged i was supposed to recieve an appointment to see another dr in the post but it never arrived. so i waited and waited then after about 4 months the seizures stopped. yeay and i began to get my life bk i started driving again, and i got a new job because i wasnt allowed back to university, and everything seemed to be going fine until......
about 7 months later when i was out celebrating a friends birthday i was in a club in town and my friend said my eyes rolled to the back of my head and i fel forward into a table and had 2/3 seizures, paramedicas were called and i was taken to hospital again, i did not regain contiousness at all following these seizures, so dont remeber anything of what happened, when i arrived at the hospital drs decided that i was so uncontious that they had to put me on a life support machine and i was taken upto the intensive care unit (sooo scary) i woke up the following day to a nurse explaining what had happened, i felt like i had been hit by a bus all the muscles in my body was aching my mouth was sore and my head was thumping, i was kept in the intensive care unit all weekend and then was discharged, dr thought that my drink may have been drugged but toxicology reports proved otherwise.
carried on as normal, and the after about 2 weeks of being out of hospital i was in my car when i had another seizure, luckily i had onli just got into it and was turning it round on a back street so no was was injured. i was taken back to hospital again and kept in for another week, i seen dr after dr and still non of them could tell me what was going on it was all if's but's and maybe's. i was discharged from hospital and was told again i would recieve a follow up in the post but again it never came no surprises there though.
I continued to have seizures and my mum and dad decided to pay to get a second opinion beause dr's just couldnt seem to agree on a diagnosis, so i went to see another neurolologist who decided i may have epilepsy and he decided to bring me into hospital again for a 48 hour eeg test. had that done and there was o abnormal activity but the dr said that this is common if you dont experience a seizure during the recording?? he has now decided that he wants me to see a dr that specialises in epilepsy so that is where i am upto sorry its soo long but just so u have all the info!
oh before a seizure i usually have a headache not always straight before though and suffer from headaches alot anyways so not a very gud warning.
my mum says that i always look pale to but not sure if this is related?
when i have a seizure my eyes roll to the back of ma head i stiffen loose contiousness shake, i usually bite ma tongue or inside my mouth, sometimes i am incontinent, i dont remeber anything which happened after and i sleep alot too after i have had a seizure.
i dont smoke or take drugs i drink occassionally, i am usually very active but seizures have limited what i can do, i am currently not allowed to work or drive and they are pretty much controlling my life
can any one offer any advice suggestions etc x x plz i am soo desperate!
after being discharged from hospital i was fine for about a week and a half and then i had another seizure, this was when i decided that this may not have just been a one off and there may be something wrong. i continued to have seizures and i had a 1 hour eeg as an outpatient.
About 2 hours after having the eeg done i was in university and i had another seizure i was taken back to hospital where doctors told me that my eeg showed some abnormalities (just found out though that it was nothing specific just slowing not too sure what that means though) i was the diagnosed with epilepsy and started on some medication called lamotragine. i was to start on a small dose and increase it each day, i continued to have seizures and after about 1 week i had a seizure while at home and fell down all the stairs hurting my foot and back (not too serious though thank god) my mum too me to the doctors who then gave me another drug called clobzam to take aswell as the lamotragine, he told me that it was normal to continue having seizures because it may take a while for the medication to take effect.
One night i had a seizure and did not fully regain contiousness than i had another one so my mum phoned for the ambulance and i was taken back to hospital yet again (soo frustrating) this time i was kept in for 2 weeks during my stay in hospital i seemed to get alot lot worse and was experienciung alot more seizures and according to my mum they were different from other seizures. on one day i had about 17 seizures and drs gave me lorazepam or diazepam to stop them, the medication was also increase to a higher dosage alot quicker than origionally planned. i was taken for another eeg on this day and apparently while i was being recorded i had a seizure and there was no abnormal brain activity.
good news - i thought, i was told that i may have non-epileptic attack disorder, i was kept in hospital for another week and then discharged i was supposed to recieve an appointment to see another dr in the post but it never arrived. so i waited and waited then after about 4 months the seizures stopped. yeay and i began to get my life bk i started driving again, and i got a new job because i wasnt allowed back to university, and everything seemed to be going fine until......
about 7 months later when i was out celebrating a friends birthday i was in a club in town and my friend said my eyes rolled to the back of my head and i fel forward into a table and had 2/3 seizures, paramedicas were called and i was taken to hospital again, i did not regain contiousness at all following these seizures, so dont remeber anything of what happened, when i arrived at the hospital drs decided that i was so uncontious that they had to put me on a life support machine and i was taken upto the intensive care unit (sooo scary) i woke up the following day to a nurse explaining what had happened, i felt like i had been hit by a bus all the muscles in my body was aching my mouth was sore and my head was thumping, i was kept in the intensive care unit all weekend and then was discharged, dr thought that my drink may have been drugged but toxicology reports proved otherwise.
carried on as normal, and the after about 2 weeks of being out of hospital i was in my car when i had another seizure, luckily i had onli just got into it and was turning it round on a back street so no was was injured. i was taken back to hospital again and kept in for another week, i seen dr after dr and still non of them could tell me what was going on it was all if's but's and maybe's. i was discharged from hospital and was told again i would recieve a follow up in the post but again it never came no surprises there though.
I continued to have seizures and my mum and dad decided to pay to get a second opinion beause dr's just couldnt seem to agree on a diagnosis, so i went to see another neurolologist who decided i may have epilepsy and he decided to bring me into hospital again for a 48 hour eeg test. had that done and there was o abnormal activity but the dr said that this is common if you dont experience a seizure during the recording?? he has now decided that he wants me to see a dr that specialises in epilepsy so that is where i am upto sorry its soo long but just so u have all the info!
oh before a seizure i usually have a headache not always straight before though and suffer from headaches alot anyways so not a very gud warning.
my mum says that i always look pale to but not sure if this is related?
when i have a seizure my eyes roll to the back of ma head i stiffen loose contiousness shake, i usually bite ma tongue or inside my mouth, sometimes i am incontinent, i dont remeber anything which happened after and i sleep alot too after i have had a seizure.
i dont smoke or take drugs i drink occassionally, i am usually very active but seizures have limited what i can do, i am currently not allowed to work or drive and they are pretty much controlling my life
can any one offer any advice suggestions etc x x plz i am soo desperate!
Your seizures sound alot like mine. Mine are tonic clonic (otherwise known as grand mals). It may take a while to find the right meds, and, it sounds the right doc. Welcome to the forum. Feel free to ask as many questions as you need. Try not to stress (easy to say, hard to do, I know). And start asking your mum questions. For example, did you ever have a really high fever that was hard to bring down as a child? Did you have a head injury as a child? And start a journal. Keep a track of what you eat and drink, when you go to bed, what time you wake up, when you have your periods, and when and where you are when you have your seizures. That way, you can give your doc as much info as possible. Also, ask the doc if he can have your blood sugar levels tested. I'm hypoglycemic, (low blood sugar). So when my blood sugar drops too low, it's really easy to have a seizure. Drinking alcohol can cause your blood sugar to shoot up high and then drop really quick. Part of staying positive is taking charge and being proactive. 
