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  1. #1
    BarefootedMumma's Avatar
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    Default Epilepsy- how was it diagnosed?

    2 & 1/2 years ago DH wentt through a very stressfull situationa. He tried to commit suicide and was diagnosed with severe depression and anxiety disorder. Since then I noticed him having absent seziures. He did see a neurologist for another readon and mentioned the seziures but waere told they weren't seziures, he was just that depressed he was having fits of meloncholly (sp?). Recentlyhisagnosis was changed to include a mild form of bi-polar (recognised by psychartrists only) and was perscribed epilim. On the epilim he started having more seziures (10 in 2 days ) and he was taken off epilim. Over the next week he had about another 10 -15 and they became more violent, he started shaking his limbs alittle but not a full fit that most people imagine when they think of epilepsy.

    Anyway we were refered back to the neurologist to find out 1: what was happening to cause theseziures and 2: couldlamitil be used for the bi-polar. We had that appointment on Thursday and the neurologist simply said "it's ok to use lamitil". granted I have been stressing about these seziures the whole time and even more iver the kast month and was livid that the neuro thought this was an ok response. I kept asking himdoes he have epilepsy, do we have to do / watch anything and was eventually told that because i started crying when he wasn't offering any diagnosis, tests or treatment that I needed psychiatric help. I ended up walking out then as i was too upset to bother listening to this guy and his poor excuses for everything. DH stayed and eventually got told he had "a very special type of epilepsy".

    I am still kind of taken a back... if he had epilepsy shouldn't he have been told more/ had a test done to find out what type?
    Shouldn't he be having treatment or at least checkups?

    I basiczlly got the impression that the dr was saying cause he has fots on the medication he must had a differnt type of epilepsy, which would mean the same doctor could say if he did't get fits whilst on the medication he must have a more normal type of epilepsy.

    So yeah if you or someone you know has epilepsy how was it diagnosed? How did they work out the fits were epileptic and not from brain tumor? The brain tumour thing worriesmeas my uncle had been diagnosed with epilepsy at 21 after having fits for most of his life, then when hewas 63 they found a cancerous brain tumour by accident and was told more then likely thecause of the epilepsy/ fits. He only lived another 3 years.

    XOOMing in to the hub from the couch

  2. #2
    BarefootedMumma's Avatar
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    Bump...

    XOOMing in to the hub from the couch

  3. #3
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    I'm so sorry your DH has been through such a difficult time, must be incredibly stressful for you both.

    I was diagnosed as a child after having absent seizures, and then I had a 'grand mal' fit. I don't remember any of it, but I remember being tested where they flashed a whole heap of lights at me. Probably totally unhelpful.... sorry.

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    BarefootedMumma's Avatar
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    thanks for the support AM, He had testing like that done 2 years ago and we were told it was melancholy.I am at a loss as to how the same doctor can change his diagnosis based on a treatment for epilepsy causing more fits.

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    My mum has vacant mind ones. She just started having them, saw a GP, referred to a nurologist, she has had scans. MRI and CAT scans to rule out anything else. It is really important to see someone who knows what they are looking at and treating. It sounds like his doctor is a horrible pig, saying what he did to you for crying! You are going through a really stressful situation and what a horrible thing to say. People break down in doctors offices all the time so I don't know why he would have treated you like that.

    I would push to be seen at a hospital that has a nuro specialist who knows what they are doing. Your DH needs scans. An MRI would be the minimum test ordered so I can't believe he hasn't even had that. Especially when something like a tumour or lesions can cause personality changes or depression.

    You can have seizures related to mental illness, so it isn't something physically wrong, but I would think that if the cause isn't known, he would have been fully physically examined first and had all the tests done already!

    For my Mum, she ended up having in-patient monitoring where they wire up your brain and video monitor you for min 7days to see what is happening and where it is happening within your brain. She had this because no medication is working and is currently waiting for surgery.

    Anyway, push to be seen at a hospital with a specialist.

  6. #6
    BarefootedMumma's Avatar
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    Quote Originally Posted by TinyLittleTootsies View Post
    My mum has vacant mind ones. She just started having them, saw a GP, referred to a nurologist, she has had scans. MRI and CAT scans to rule out anything else. It is really important to see someone who knows what they are looking at and treating. It sounds like his doctor is a horrible pig, saying what he did to you for crying! You are going through a really stressful situation and what a horrible thing to say. People break down in doctors offices all the time so I don't know why he would have treated you like that.

    I would push to be seen at a hospital that has a nuro specialist who knows what they are doing. Your DH needs scans. An MRI would be the minimum test ordered so I can't believe he hasn't even had that. Especially when something like a tumour or lesions can cause personality changes or depression.

    You can have seizures related to mental illness, so it isn't something physically wrong, but I would think that if the cause isn't known, he would have been fully physically examined first and had all the tests done already!

    For my Mum, she ended up having in-patient monitoring where they wire up your brain and video monitor you for min 7days to see what is happening and where it is happening within your brain. She had this because no medication is working and is currently waiting for surgery.

    Anyway, push to be seen at a hospital with a specialist.
    When we see his psych next we are asking for a referral to a different Nuro guy. He only referred us to this one as they had previously seen him, but I guarantee he won't be happy about the response. DH actually sees one of the top Psychs in western Sydney. So I am pretty sure he will want to get a second opinion.

    I will also be asking my GP to send me back to a different Nuro for an issue of my own as this guy told me 3 years ago a solution to my fingers going numb was to keep my arm straight.. after 3 years the numbness still returns if I bend my arms AND I am losing movement in one of the fingers

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    MrJones&Me's Avatar
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    I had it as a child and grew out of it thankfully, but I had the 'grand mal' (sp?) siezures. Mine was diagnosed with what's called an 'EEG' test. Apologies if he has already had one. They cover your head in plugs and make you sleep and measure the brain/nerve activity.

    Also someone close to me had some type of stress induced siezures, but it wasn't epilepsy and went away after some time. I hope you get the answers & treatment you need xx

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    MrJones&Me's Avatar
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    Also my BFF had that type of epilepsy too. (where she just blacked out but was still there iygwim) and thankfully hers went away too. I can't tell you what meds she was on or the testing sorry.

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    [QUOTE=Barefooted;6330468]When we see his psych next we are asking for a referral to a different Nuro guy. He only referred us to this one as they had previously seen him, but I guarantee he won't be happy about the response. DH actually sees one of the top Psychs in western Sydney. So I am pretty sure he will want to get a second opinion.

    I will also be asking my GP to send me back to a different Nuro for an issue of my own as this guy told me 3 years ago a solution to my fingers going numb was to keep my arm straight.. after 3 years the numbness still returns if I bend my arms AND I am losing movement in one of the fingers[/QUOT


    I'm glad he is seeing a good psych. What did the psych say about siezures being caused by melancholy?

    Solution to fingers going numb = keep arms straight. wtf? That could be caused by so many things.. he didn't look into it at all??

  10. #10
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    ** warning, long **


    This is how I was diagnosed.
    The teachers told my mum that I was mentally retarded and socially retarded as I would never listen to them, make eye contact, answer their direct questions, answer to my name, or make any sign that I'd heard them at all.
    They claimed after they yelled at me to pay attention or I'd be sent to the principal, that I would mock them by saying "Pardon? I didn't hear you"

    I swore black and blue that I WAS paying attention, and that they were lying because I never heard any of them make a single sound until they suddenly started yelling at me.

    Mum took me to a specialist who was alone with me for 15 minutes, came out and said "She's a genius and she has severe petite mal seizures" {I believe that they now go by 'vacant seizures'}

    So I went to a childhood epilepsy specialist, who diagnosed me with childhood abscence seizures, there was a big teacher conference and they were told of the situation.

    At 18, I was sitting on the bed of who would become my future husband {no, there was no naughty things involved!} and I stopped talking. He was my best friend and had seen the absence seizures before, so he stopped and waited for me to come back to myself. I just pitched over and had a grand mal that lasted for about 5 minutes. Luckily his stepmother was home and had been a registered nurse for over 40 years, she called the ambulance and helped me out.

    After that it was a string of mixed grand mal and absence seizures, about 10-20 a day, more absence than grand mal.

    I had one truly epic one that had me on the floor, a few minutes long, then I recovered, the paramedics walked me to the door, where I had another, I had one more in the ambulance and another in the hospital. All I remember is going to sleep in bed and waking up with doctors all around me and this gigantic male nurse holding me down, and this light in my face. I freaked out, had another, and that was the end of the string.
    They took blood and were about to rush me in for an emergency MRI because I was starting to drool and gag {which felt to me like something slippery in my mouth, i mentally felt like I was falling asleep with a headache} when this adorable little asian nurse ran up, I remember her trotting along like a little goat into the room and she said "Pregnant! Pregnant!"
    I remember thinking "Good for you" and I fell asleep from exhaustion.

    They kept me in for observation and did a scan, I was only a few weeks along. The doctors came to the conclusion that since I'd been shifting between meds, I wasn't covered by it, and the hormonal swing caused all the seizures. They put me on the highest possible dose of Lamictal {urrghh i hated that drug} and I only had a few big seizures and many absence during the pregnancy.

    The birth was another matter, there was my doctor, who argued that if I was switched into a string like before, I'd crush the baby, so it would be best to csection early and strap me down, and my neurologist, who said that I should be given the chance to do it naturally.
    I voted for naturally and if I went into a string to save the baby first and get to me once she was safe. No seizures during the birth or straight afterwards.

    Fastforward to now, I'm uncontrolled, I've been on the epilepsy diet {made it worse} and all known medications {no changes}, and my neurologist and I get along very well, so we have a life plan set up.
    Every year I have a sleep deprivation {24 hours without sleep, then they track your brain and try and induce a seizure} and an MRI.
    I also have an EEG every 6 months.

    I'm part of a study at the moment of the causes of epilepsy as my epilepsy is apparently rare and unique. According to all scans and MRIs, I do NOT have epilepsy and show no signs of it even being possible. My brain looks and acts perfectly normal and healthy, apart from getting full blown seizures.
    Even when hooked up to an EEG I barely make a ripple on the machine when I have a seizure, and this fact apparently is sending the board of neurologists into an absolute fit of happiness. {lol...fit..}
    I didn't understand it either, and I still don't, but apparently it's something to do with there being a genetic epilepsy 'gene' that causes epilepsy without the signs or signals of epilepsy. I think what they mean is that it's like a family being born with extra arms over generations, the body thinks it's normal and there's no sign that anything is deformed or wrong, the body just accepts it.

    so they've taken a whole lot of blood and are studying it. Anyway, I get blood tests all the time, I keep a daily diary about it, and I get this cute little newletter once a year that tells me what they're doing with my genes.

    They're still of the opinion that a bit of brain-slicing wouldn't go astray, it might lead them to understand epilepsy's effect on the brain better, or I might have a tumour they've missed or a pocket of fluid they can't see on scans, and we're discussing that in Feb.

    Phew. Sorry for breaking your ears!

    Feel free to PM me or ask here if you have any questions. I'll try to answer them, but my memory is shot {and no wonder, I miss out on half the things I'm meant to be hearing!} and I might be unable to answer a few things.
    But I CAN pose the questions to my neurologist in Feb if you really want the answer from an actual professional.


 

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