Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
hi
my daughter suddenly started getting grand mal seizures in jan this year. she was hospitalised in february, april, june, beginning of august and has just come out of hosp two days ago.
prior to hospital she was getting anything between 20 and 50 seizures a day. she loses consciousness with every seizure, even the absences and can remember nothing afterwards. if she is not already sitting, she will fall to the floor at each onset of a seizure. some of her seizures are extremely stiff and jerky, with fingers and toes claw like, eyes roll back and she bites her tongue. also, she occasionally urinates during a seizure.
there have been 2 eeg's, one for about 40 mins, which showed no signs of epilepsy, although she had 3 mild fits during the test. the next eeg was on the ward last week and although she was wired up for a total of 6 hours, the docs only looked at the first disc which was only 1.5 hours long and the big seizures were near the end of the second disc. i asked that they check that one out and they denied that there was a second. she has now been dx with non epileptic seizures and sent home. i asked 'at what point do i call an ambulance?" and the neurologist said, "you dont!" i replied, "wow! so she can have 100 seizures a day and we still dont call an ambulance?" "No! she doesnt need one with these type of seizures." she offered her councelling with a neuropsychiatrist!!! i'm raging!
i am totally bewildered.
please someone tell me what to do or where to go next. i believe my daughter's seizures are dangerous, especially as she has arrested once and stopped breathing a few times. someone has to be with her 24/7 in case she hurts herself as she falls and she is exhausted most of the time because of the amount of seizures she has and is physically unable to walk much of the day.
she was on 800mg epilem twice a day and 500mg kepra twice a day. the epilem is being reduced and by 26 october removed. i am happy with that, but the seizures continue.
thank you for listening and look forward to reading your comments. any advice, ideas, suggestions would be much appreciated.
god bless xx
my daughter suddenly started getting grand mal seizures in jan this year. she was hospitalised in february, april, june, beginning of august and has just come out of hosp two days ago.
prior to hospital she was getting anything between 20 and 50 seizures a day. she loses consciousness with every seizure, even the absences and can remember nothing afterwards. if she is not already sitting, she will fall to the floor at each onset of a seizure. some of her seizures are extremely stiff and jerky, with fingers and toes claw like, eyes roll back and she bites her tongue. also, she occasionally urinates during a seizure.
there have been 2 eeg's, one for about 40 mins, which showed no signs of epilepsy, although she had 3 mild fits during the test. the next eeg was on the ward last week and although she was wired up for a total of 6 hours, the docs only looked at the first disc which was only 1.5 hours long and the big seizures were near the end of the second disc. i asked that they check that one out and they denied that there was a second. she has now been dx with non epileptic seizures and sent home. i asked 'at what point do i call an ambulance?" and the neurologist said, "you dont!" i replied, "wow! so she can have 100 seizures a day and we still dont call an ambulance?" "No! she doesnt need one with these type of seizures." she offered her councelling with a neuropsychiatrist!!! i'm raging!
i am totally bewildered.
please someone tell me what to do or where to go next. i believe my daughter's seizures are dangerous, especially as she has arrested once and stopped breathing a few times. someone has to be with her 24/7 in case she hurts herself as she falls and she is exhausted most of the time because of the amount of seizures she has and is physically unable to walk much of the day.
she was on 800mg epilem twice a day and 500mg kepra twice a day. the epilem is being reduced and by 26 october removed. i am happy with that, but the seizures continue.
thank you for listening and look forward to reading your comments. any advice, ideas, suggestions would be much appreciated.
god bless xx
i agree, but they say she isnt epileptic. they say she has non epilepsy seizures and they're not doing anything else for her, no further investigations, nothing. we have to deal with them at home we're told. as for finding a new neurologist? here we dont have the choice and each new one goes by the last one's findings.
so far she's had 16 seizures today.
i dont have a clue what to do next.
thanks for your advice woolly. and thanks for listening to this extremely stressed out mum:)
hope ur hubby gets fully controlled soon:) x
Jason
i have made an appt with my gp and will ask her to refer to another neurologist. this will be the second time i've asked this so i dont know if she will do it again, but i have to ask her because we are just left to deal with the seizures alone. today, so far there have been 8 and in three of them she has stopped breathing.
i dont believe she is faking or even could fake them. sometimes her back arches so much that it looks like it's gonna break. and how could she fake her heart stopping i wonder???
they havent tested for anything else. it was just a matter of it's not epilepsy so take her home and dont come back! thats their attitude. so much for putting ur life in the docs' hands eh!
i'm now looking at alternative remedies and started her on bicarb the night before last. dont know how long it takes to kick in, but i have to do something. i also bought some extra virgin coconut oil today, but she hates coconut and wont go near it.
dont know what else i can do. we'll just have to wait and see what happens.
thanks again jason for your advice:) i will keep u informed.
take care all and god bless:) xx
my daughter is just 18, but a young 18 and extremely reliant on me still.
i am looking into a new doc, but as i have already done this, my gp is reluctant to do it again. it will happen tho, even if i have to go privately.
thank you everyone for your continued support and advice. i really appreciate it.
hope you all have a good day.
xx
thank you for the information.
i have done lots of research on seizures since the sudden onset of my daughter's, including pnes and nothing seems to make sense. there are lots of reasons why someone can have a seizure and until everything else is ruled out they should not be fobbed off. no other tests have been done for my daughter, not even a proper eeg. BUT the docs decided she was not epileptic, so it must be nes. not good enough in my books! when you exhaust all avenues then diagnose, not until. why did her heart stop? i ask. why does she frequently stop breathing? why does she go so blue? and so on. these are all things that should be investigated prior to diagnosis. the gov want the nhs to go and i dont believe the docs have any incestive to do a good job any more. they're becoming quacks nationwide.
thank you for your concern hope.
god bless
xx
From what I understand, non-epileptic, or "pseudoseizures", don't happen like they do with your daughter, which seems to be all the time.
you may have seen all this, but here's epilepsy
http://medical-dictionary.thefreedictionary.com/idiopathic+epilepsy
and the EFA on non-epilepsy seizures.
http://www.epilepsyfoundation.org/aboutepilepsy/seizures/Non-epileptic-seizures.cfm
one thing I've read is that non-epileptic seizures don't respond to anticonvulsant meds. So if Dr. diagnosis as non-ep, why is he prescribing them?
Are they basing diagnosis simply because no EEG findings? I've had a lot of EEGs, one for 48 hrs., and never a thing.
Get help! There's the EFA here, and i believe there's something similiar there. Call up and frustratingly tell your story - here's my situation, Dr. says not ep, but on these drugs, what can I do, please advise me of who to go to. Help!
thank you for your advice and links. yes, i have read from those sites already, but thank you for posting, i will read them again.
yes, the docs are basing their diagnosis on eeg findings alone. i asked if the eeg would definitely show anything up as i have heard that lots of people's fits dont show up, but epilepsy was still diagnosed and they told me, quite categorically that if it was epilepsy the eeg would show up. therefore it is not epilepsy.
i also asked if my daughter isnt epileptic then why the meds and they answered that she may have had some form of epilepsy in the past.
i've been left to deal with her seizures myself and after much research, i started her on bicarbonate of soda (just a 1/4 teaspoon daily in water) and two tablespoons of extra virgin raw coconut oil daily. it's early days yet, but i'm hoping for some sort of results.
we are back at the neurologist on 28 sept and will update you then.
thanks again for your support and kind advice.
hope you have a good day:) x
Please do not take this as I am saying what is wrong with your Daughter. That is for the Dr. to decide. Just offering you options to look at. I hope for both of you that you get a answer soon.