Hi everyone :hello: i've just turned 27 and I recently had a brain haemorrhage. i just found out i have temporal lobe epilepsy.
Sorry for the super long rant! but its just so nice t have found this forum and i wanted to try and explain everything fully
to be honest, i don't really know where to start. does it starts when i had the bleed (oct 15th 1012) and got taken to A&E? or does it start when i was 3, at school, and got screamed at for 'daydreaming' and 'not listening'?
I know it's nobody's fault and i would never want anyone to feel guilty that they didn't realise i had epilespy.. in fact, i kind of prefer that i never knew till now (that's a whole other post i think!) but it doesn't change the fact that they made me feel humiliated and bad. The teachers shouted at me and told the class, "Look everybody, look how nicely you are all listening and doing your work.." and then to me, "but yet again, the whole class has to stop and wait because YOU'RE not paying attention" they would always shout my name and embarrass me and i was too little to explain that everything felt funny and i didn't feel normal and everything sounded weird and i couldn't help 'day dreaming'.
I was just labelled as a "kind and considerate student but needs to stop daydreaming"
In the end they decided i was partially deaf (I am not actually deaf at all)
As I grew up i found ways of coping with the funny turns (at secondary school i was taken to the first aid room to lie down frequently... with 'funny turns' where i couldnt see properly or talk normally and would just sleep on the first aid bed until it passed. it would come on realy suddenyl out of nowhere, like "oooh no.. here it comes" and then i would tell the teachers 'I feel like i'm dreaming, it feels like none of this is real" and i would have trouble walking on my own.. i would wander about like a lost person.
They still didn't twig! and neither did i. i just assumed everyone was right when they called me a hyperchondriac.
I was taken to hospital for eye tests. i was asked if i was being bullied. was i depressed? I kept saying no.. my friends are my world and my eyes were fine and my family- although they couldnt understand or realise what was happening to me, my family do love me.. to the moon and back and have always supported me in the best way they can.. they are my biggest supporters.. they make me believe in myself and it isnt their fault that they didn't know. besides i was so used to these weird feelings because i had them as long as i can remember- since my earliest memories.. and i found ways to hide it and cover it up (because my seizure activity is mainly internal sensory experiences... i only ever blacked out suddenly when i had the brain haemorrhage) so i have become skilled at covering it up. my seizure activity is very subtle, but frequent.
So then they thought i was dyslexic (but although things take me a bit longer, i'm determined
and i have just completed my Masters degree in Art Psychotherapy :rock: ) TBH i now question the dyslexia label. (they said i was an unusal dyslexic because my spelling was above average, yet i scored low on things like short term memory...) now i wonder if it was actually the epilepsy interfering..
So i carried on.. and after i graduated, i planned a trip to travel around east africa with two friends. it was over the summer just gone, july & august 2012. but before we went i felt a real urge to have some tests done because i have a numb path on my back and also sharp stabbing pains that come and go each day- all over my body.. a bit like sharp nerve pains. I have had these since secondary school.. i remember because i was told "theyre just growing pains". but something inside kept telling me there was somethig up.. and i should get checked out. so i did.
Anyway.. i ended up getting an MRI. thats when they found out i have a large brain cavernoma (a mass of abnormal blood vessels in my brain). its in my right temporal lobe. the service was amazing, in and out super quick- but neuro was pretty rubbish. he didnt like me asking questions and just wanted me out of his office. when i asked him, "where is it?" his exact answer was, "Why do you want to know that?"
He told me it was just an incidental find and it didnt explain any of my symptoms, that we wouldnt ever have known it was there if i hadnt had the scan (I'm no neurologist.. but i kinda thought that was the purpose of the scans.. to find things we didnt know were there??) anyway, he was right- most people never know they have them and they never cause any problems. however, he said mine had recenty had a minor bleed and that i could book to see him again in a couple of months time. i told him i would book to see him once i get back from africa.. he told me it was fine to go and just carry on as if i never found out about it. so i did.
Then i got back from africa in september and developed a mild but constant headache. i called the neurologists secretary.. and said id like to make that appointment. but they lost my records.. they said they would find out and call me back but they never did so i called them again and they said theyd found them and that the scans looked fine and they didnt need to see me. but when more weeks passed and the headache was still there i called AGAIN and said i want to see him because i am worried and they said that they would get him to call me. guess what? he never did. so i arranged with my GP to get anew referral to a different neurologist.. i organised the GP appointment for the 16th october but never got to go to it because i had a big bleed from the cavernoma on the afternoon of the 15th october and was rushed to A and E. this is where my title fits in.. the paramedics thought i was drunk. luckily my manager was with me and assured them id been at work all day with her and was not drunk. then they thought id taken drugs. i was totally unconscious by the time they got me into the ambulance. luckily i had been so worried about my head that i was carrying a copy of my brain scan in my pocket and managed to give it to my manager before i passed out. i had massive auras before i passed out (strong smells and all my usual funnt feelings but really intense).
as soon as they saw the scans at A&E (i dont remember any of this, its all from what my manager has told me happneed), they stopped asking if i had taken drugs (they were even testing for malaria) and they rushed me to the CT scan and there were nurses standing by with defibrillators.
They finally realised that i had a big bleed and i was in hospital for a couple of weeks recovering.they put me on keppra for the seizure stuff.
To be fair, my manager said i DID look like i was super drunk when i started having the seizure
whilst at hospital they did an EEG and confirmed the epileptic activity in my right temporal lobe.. they believe it's been there for years and years: that explains my life long history of 'funny turns'.
They also started crowding round me when i was feeling a bit funny (nothing out of the ordinary for me!) and then said, 'because of your seizure we're keeping you one more night' and i said, "Seziure? what seizure?" and they said, "Youve just had a seizure"... I'm thinking WHAT?!?!?!??!?!?! if that was a SEZIURE.. MY WHOLE LIFE HAS BEEN ONE LONG SEIZURE!!!!
This was such a weird moment for me. all those time, there WAS actaully something wrong with me.
but i still couldnt believe it, i still thought i was making it up, or they had it wrong.. because ive always had them and i just thought it was part of my personality. i couldnt believe what i had just felt was actually a seziure!?!?! because i feel like that almost ever day!!!!onder:
Anyway. they let me go the next day and they sent me home with lots of keppra and a date for neurosurgery to have the cavernoma removed (craniotomy 22nd nov).
Since being at home ive had to go to A&E twice for seizures and they scanned me to make sure it wasnt another bleed. they upped my keppra twice.
im used to doing so much stuff but the whole month ive just been stuck in bed, so tired!
i hate not being abel to do stuff... i'm used to working three jobs- part time care worker for a really cool guy, he's an artists with physical disabilities, also work as a part time mental health advocate supporting people who have been sectioned under the mental health act, and i just started a new job as a support worker for families affected by mental health issues, i was also volunteering at a child bereavement organisation, helping run workshops for families and their children, and i was just finishing my training to do volunteering at school, working with primary school children- delivering a special program to promote empathy and decrease aggressive behaviour. and i was in the middle of writing a bussiness plan with my friend who i volunteered with in africa- to set up a special service for children with autism, using our different skill sets (we both used to work with children wh have autism (she still does) and have lots of ideas about a new service we think would be really helpful for them and their families... and i was organising a big fundraising event for the autism unit that we worked at in nairobi (Kenya) so that they can buy resources to continue the work we started there. i was also learning swahili (every thursday) and also attending my own personal therapy, (because we had to be in therpay ourselves, whilst training to be art psychotherapists) and i decided to continue it because it was so helpful for my own personal development, rather than suddently stop when my training finished. i was also learning to ride a motorbike (had to cancel my test because of the seizures)
and i was making handmade cards to sell (and selling all my stuff at carboots) to raise money for flights back to kenya to visit the autism unit and give them the money/ resources they need. had to put that on hold too >_<
so it's been hard for me to suddenly stop everything because of this stupid brain bleed.. but all i can do is rest
anyway, ive been focusing on getting better and for the operation.
but then i got a call yesterday to say they forgot to book my pre-op neuropsychology assessment so theyve cancelled my op and need to reschedule it.
can you believe it?
ive been preparing for this op for weeks and im supposed to be admitted today (21st nov) and now im still here.. in bed.. at home, ranting away to you guys... i have no idea whats happening. they should call me today to tell me the new date but it could be two days time or two weeks time.. i'll just have to wait for their call.
So that me in a nutshell.
if you got this far i applaud you! ive been having real trouble articulating myself and summarising things- i tend to ramble.. sorry!
it's my mums birthday on 12th december and im worried i wont be recovered enough to sort out her birthday present, so i have ordered her some cool things from amazon, and i have wrapped it all up and made a card and hidden it on my wardrobe and if im not well enough it will be ready for her and my brother and dad can make sure she gets it
i hope you are all doing ok.. it's nice to have found somewhere to talk and ramble and moan and be understood.. and accepted the way you are.
Thanks for reading
Amoobaa (i just turned 27 and im a girl) :banana:
Sorry for the super long rant! but its just so nice t have found this forum and i wanted to try and explain everything fully
to be honest, i don't really know where to start. does it starts when i had the bleed (oct 15th 1012) and got taken to A&E? or does it start when i was 3, at school, and got screamed at for 'daydreaming' and 'not listening'?
I know it's nobody's fault and i would never want anyone to feel guilty that they didn't realise i had epilespy.. in fact, i kind of prefer that i never knew till now (that's a whole other post i think!) but it doesn't change the fact that they made me feel humiliated and bad. The teachers shouted at me and told the class, "Look everybody, look how nicely you are all listening and doing your work.." and then to me, "but yet again, the whole class has to stop and wait because YOU'RE not paying attention" they would always shout my name and embarrass me and i was too little to explain that everything felt funny and i didn't feel normal and everything sounded weird and i couldn't help 'day dreaming'.
I was just labelled as a "kind and considerate student but needs to stop daydreaming"
In the end they decided i was partially deaf (I am not actually deaf at all)
As I grew up i found ways of coping with the funny turns (at secondary school i was taken to the first aid room to lie down frequently... with 'funny turns' where i couldnt see properly or talk normally and would just sleep on the first aid bed until it passed. it would come on realy suddenyl out of nowhere, like "oooh no.. here it comes" and then i would tell the teachers 'I feel like i'm dreaming, it feels like none of this is real" and i would have trouble walking on my own.. i would wander about like a lost person.
They still didn't twig! and neither did i. i just assumed everyone was right when they called me a hyperchondriac.
I was taken to hospital for eye tests. i was asked if i was being bullied. was i depressed? I kept saying no.. my friends are my world and my eyes were fine and my family- although they couldnt understand or realise what was happening to me, my family do love me.. to the moon and back and have always supported me in the best way they can.. they are my biggest supporters.. they make me believe in myself and it isnt their fault that they didn't know. besides i was so used to these weird feelings because i had them as long as i can remember- since my earliest memories.. and i found ways to hide it and cover it up (because my seizure activity is mainly internal sensory experiences... i only ever blacked out suddenly when i had the brain haemorrhage) so i have become skilled at covering it up. my seizure activity is very subtle, but frequent.
So then they thought i was dyslexic (but although things take me a bit longer, i'm determined
and i have just completed my Masters degree in Art Psychotherapy :rock: ) TBH i now question the dyslexia label. (they said i was an unusal dyslexic because my spelling was above average, yet i scored low on things like short term memory...) now i wonder if it was actually the epilepsy interfering..So i carried on.. and after i graduated, i planned a trip to travel around east africa with two friends. it was over the summer just gone, july & august 2012. but before we went i felt a real urge to have some tests done because i have a numb path on my back and also sharp stabbing pains that come and go each day- all over my body.. a bit like sharp nerve pains. I have had these since secondary school.. i remember because i was told "theyre just growing pains". but something inside kept telling me there was somethig up.. and i should get checked out. so i did.
Anyway.. i ended up getting an MRI. thats when they found out i have a large brain cavernoma (a mass of abnormal blood vessels in my brain). its in my right temporal lobe. the service was amazing, in and out super quick- but neuro was pretty rubbish. he didnt like me asking questions and just wanted me out of his office. when i asked him, "where is it?" his exact answer was, "Why do you want to know that?"
He told me it was just an incidental find and it didnt explain any of my symptoms, that we wouldnt ever have known it was there if i hadnt had the scan (I'm no neurologist.. but i kinda thought that was the purpose of the scans.. to find things we didnt know were there??) anyway, he was right- most people never know they have them and they never cause any problems. however, he said mine had recenty had a minor bleed and that i could book to see him again in a couple of months time. i told him i would book to see him once i get back from africa.. he told me it was fine to go and just carry on as if i never found out about it. so i did.
Then i got back from africa in september and developed a mild but constant headache. i called the neurologists secretary.. and said id like to make that appointment. but they lost my records.. they said they would find out and call me back but they never did so i called them again and they said theyd found them and that the scans looked fine and they didnt need to see me. but when more weeks passed and the headache was still there i called AGAIN and said i want to see him because i am worried and they said that they would get him to call me. guess what? he never did. so i arranged with my GP to get anew referral to a different neurologist.. i organised the GP appointment for the 16th october but never got to go to it because i had a big bleed from the cavernoma on the afternoon of the 15th october and was rushed to A and E. this is where my title fits in.. the paramedics thought i was drunk. luckily my manager was with me and assured them id been at work all day with her and was not drunk. then they thought id taken drugs. i was totally unconscious by the time they got me into the ambulance. luckily i had been so worried about my head that i was carrying a copy of my brain scan in my pocket and managed to give it to my manager before i passed out. i had massive auras before i passed out (strong smells and all my usual funnt feelings but really intense).
as soon as they saw the scans at A&E (i dont remember any of this, its all from what my manager has told me happneed), they stopped asking if i had taken drugs (they were even testing for malaria) and they rushed me to the CT scan and there were nurses standing by with defibrillators.
They finally realised that i had a big bleed and i was in hospital for a couple of weeks recovering.they put me on keppra for the seizure stuff.
To be fair, my manager said i DID look like i was super drunk when i started having the seizure
whilst at hospital they did an EEG and confirmed the epileptic activity in my right temporal lobe.. they believe it's been there for years and years: that explains my life long history of 'funny turns'.
They also started crowding round me when i was feeling a bit funny (nothing out of the ordinary for me!) and then said, 'because of your seizure we're keeping you one more night' and i said, "Seziure? what seizure?" and they said, "Youve just had a seizure"... I'm thinking WHAT?!?!?!??!?!?! if that was a SEZIURE.. MY WHOLE LIFE HAS BEEN ONE LONG SEIZURE!!!!
This was such a weird moment for me. all those time, there WAS actaully something wrong with me.
but i still couldnt believe it, i still thought i was making it up, or they had it wrong.. because ive always had them and i just thought it was part of my personality. i couldnt believe what i had just felt was actually a seziure!?!?! because i feel like that almost ever day!!!!
onder:Anyway. they let me go the next day and they sent me home with lots of keppra and a date for neurosurgery to have the cavernoma removed (craniotomy 22nd nov).
Since being at home ive had to go to A&E twice for seizures and they scanned me to make sure it wasnt another bleed. they upped my keppra twice.
im used to doing so much stuff but the whole month ive just been stuck in bed, so tired!
i hate not being abel to do stuff... i'm used to working three jobs- part time care worker for a really cool guy, he's an artists with physical disabilities, also work as a part time mental health advocate supporting people who have been sectioned under the mental health act, and i just started a new job as a support worker for families affected by mental health issues, i was also volunteering at a child bereavement organisation, helping run workshops for families and their children, and i was just finishing my training to do volunteering at school, working with primary school children- delivering a special program to promote empathy and decrease aggressive behaviour. and i was in the middle of writing a bussiness plan with my friend who i volunteered with in africa- to set up a special service for children with autism, using our different skill sets (we both used to work with children wh have autism (she still does) and have lots of ideas about a new service we think would be really helpful for them and their families... and i was organising a big fundraising event for the autism unit that we worked at in nairobi (Kenya) so that they can buy resources to continue the work we started there. i was also learning swahili (every thursday) and also attending my own personal therapy, (because we had to be in therpay ourselves, whilst training to be art psychotherapists) and i decided to continue it because it was so helpful for my own personal development, rather than suddently stop when my training finished. i was also learning to ride a motorbike (had to cancel my test because of the seizures)
and i was making handmade cards to sell (and selling all my stuff at carboots) to raise money for flights back to kenya to visit the autism unit and give them the money/ resources they need. had to put that on hold too >_<so it's been hard for me to suddenly stop everything because of this stupid brain bleed.. but all i can do is rest
anyway, ive been focusing on getting better and for the operation.
but then i got a call yesterday to say they forgot to book my pre-op neuropsychology assessment so theyve cancelled my op and need to reschedule it.
can you believe it?
ive been preparing for this op for weeks and im supposed to be admitted today (21st nov) and now im still here.. in bed.. at home, ranting away to you guys... i have no idea whats happening. they should call me today to tell me the new date but it could be two days time or two weeks time.. i'll just have to wait for their call.
So that me in a nutshell.
if you got this far i applaud you! ive been having real trouble articulating myself and summarising things- i tend to ramble.. sorry!
it's my mums birthday on 12th december and im worried i wont be recovered enough to sort out her birthday present, so i have ordered her some cool things from amazon, and i have wrapped it all up and made a card and hidden it on my wardrobe and if im not well enough it will be ready for her and my brother and dad can make sure she gets it
i hope you are all doing ok.. it's nice to have found somewhere to talk and ramble and moan and be understood.. and accepted the way you are.
Thanks for reading
Amoobaa (i just turned 27 and im a girl) :banana:
