Hi all
Been lurking, mainly in the hope of course that I find something that says I don't have epilepsy but some other rare undiscovered but curable neurological issue!
As it is, following a telephone consultation last week with Neuro he has announced that I have focal Epilepsy- just like that.
Bit of background - might want to get a biscuit and a cuppa or something!
4 or so years ago , got funny turn which put fear of god into me as of course I knew they weren't normal. I wasn't great at describing them to my GP then - said I kept seeing 'something' in my minds eye, accompanied by intense nausea and weird feeling. I soon realised on reading/recurrence that it was deja vu which I was able to state by time of 1st ever Neuro appt and advised i was concerned then it was SPS (classification has now changed of course to FO aware). Had CT scan also then too
He said at that time, it wasn't, and just atypical migraine. I do get migraines and did question it at the time but he stuck to guns, and advised to come back if they get 'worse'. Now he didn't say what worse was, or would be in his eyes. All in all a crap appt in retrospect
Over last year or so, been getting other neurological symptoms - not epilepsy related (lightheaded, facial pain , altered and sensory sensations) and finally resulted in another referral this year to Neuro - appt last week. Blood tests have shown positive GAD antibodies - no idea why GP tested for this, but no significance given to it re neurological issue. Anyway, appt last week and my concern is re MS. He wasnt convinced and when i was trying to explain that some of what I thought would be put down to migraine, or was putting down to migraine, clearly is not I the mentioned the appt years ago and same claims and one discussion followed another and he concludes that I was right, and have Focal Epilepsy. He states no testing needed (though am to get MRI anyway for other issues) and my personal account is relevant and sufficient enough
It is classic i suppose - deja vu , nausea, headachy after (hence migraine claims I presume) and latterly metallic taste in mouth. They have happened in clusters of around 4 each day, for 3 days at a time at most and then stop. Last year there were 3x days on 2 occasions. This year it has been 2 occasions so far, again in clusters for a couple of days. Before that i haven't a note, so am not sure if they did happen or not
He has said he will send prescription to GP for Lamotrigine, if I WANT to take it. He didn't answer my questions on prevalence from focal to generalised, as preventing progression would be only thing to make me consider taking meds.. He did say 7/10 people become seizure free He also says he understands grey area as they are so infrequent no problems with consciousness but hasnt really made much comment on risk /benefits r if i SHOULD take them. I am fairly sensitive to medication, come out in hives regularly for no reason ad already have dizziness, headaches and nausea so keen not to replicate these symptoms
I am feeling so lost and upset just now , i am waiting for MRI to see if there is anything that may cause the epilepsy though to be honest, outcome is same unless its another issue that can be 'sorted' in which case i have bigger problems. Also upset i might now have 2 conditions if all goes unwell....
. Wider and immediate problem for me is that DLVA (am in UK) will want license surrendered and take dim view of those who appear non compliant with medication. I appreciate Neuro cant unknow what he knows and of course most doctors will take view to 'treat' if they can. He did say he cant influence DVLA but of course he has, by prescribing medication but then saying its up to me, and understands why i wouldn't. I have had probably around 15 days in more than four years but of course it only takes 2 seizure to be a problem and get diagnosed. In that time i have driven safely, and do recall having SPS whilst driving on at least 1x occasion when i think back
Its also happened in front of people and apart from pallor change people cant tell - i have asked them if have done anything funny (eg checking for CPS)
I suppose if Lamotrigine had no side effects I may take a punt but as i say dont want to make things a whole lot worse
Sorry for long post - hope your tea isnt cold. Am feeling a bit bewildered just now. Also wondering if ongoing light-headedness is now E related. Sometimes i wake up like that though see no sign of nocturnal anything. Also get it at times of day when awake so trying to not to get paranoid
Thanks for reading x
Feel so frustrated and am going to phone his secretary this week
Been lurking, mainly in the hope of course that I find something that says I don't have epilepsy but some other rare undiscovered but curable neurological issue!
As it is, following a telephone consultation last week with Neuro he has announced that I have focal Epilepsy- just like that.
Bit of background - might want to get a biscuit and a cuppa or something!
4 or so years ago , got funny turn which put fear of god into me as of course I knew they weren't normal. I wasn't great at describing them to my GP then - said I kept seeing 'something' in my minds eye, accompanied by intense nausea and weird feeling. I soon realised on reading/recurrence that it was deja vu which I was able to state by time of 1st ever Neuro appt and advised i was concerned then it was SPS (classification has now changed of course to FO aware). Had CT scan also then too
He said at that time, it wasn't, and just atypical migraine. I do get migraines and did question it at the time but he stuck to guns, and advised to come back if they get 'worse'. Now he didn't say what worse was, or would be in his eyes. All in all a crap appt in retrospect
Over last year or so, been getting other neurological symptoms - not epilepsy related (lightheaded, facial pain , altered and sensory sensations) and finally resulted in another referral this year to Neuro - appt last week. Blood tests have shown positive GAD antibodies - no idea why GP tested for this, but no significance given to it re neurological issue. Anyway, appt last week and my concern is re MS. He wasnt convinced and when i was trying to explain that some of what I thought would be put down to migraine, or was putting down to migraine, clearly is not I the mentioned the appt years ago and same claims and one discussion followed another and he concludes that I was right, and have Focal Epilepsy. He states no testing needed (though am to get MRI anyway for other issues) and my personal account is relevant and sufficient enough
It is classic i suppose - deja vu , nausea, headachy after (hence migraine claims I presume) and latterly metallic taste in mouth. They have happened in clusters of around 4 each day, for 3 days at a time at most and then stop. Last year there were 3x days on 2 occasions. This year it has been 2 occasions so far, again in clusters for a couple of days. Before that i haven't a note, so am not sure if they did happen or not
He has said he will send prescription to GP for Lamotrigine, if I WANT to take it. He didn't answer my questions on prevalence from focal to generalised, as preventing progression would be only thing to make me consider taking meds.. He did say 7/10 people become seizure free He also says he understands grey area as they are so infrequent no problems with consciousness but hasnt really made much comment on risk /benefits r if i SHOULD take them. I am fairly sensitive to medication, come out in hives regularly for no reason ad already have dizziness, headaches and nausea so keen not to replicate these symptoms
I am feeling so lost and upset just now , i am waiting for MRI to see if there is anything that may cause the epilepsy though to be honest, outcome is same unless its another issue that can be 'sorted' in which case i have bigger problems. Also upset i might now have 2 conditions if all goes unwell....
. Wider and immediate problem for me is that DLVA (am in UK) will want license surrendered and take dim view of those who appear non compliant with medication. I appreciate Neuro cant unknow what he knows and of course most doctors will take view to 'treat' if they can. He did say he cant influence DVLA but of course he has, by prescribing medication but then saying its up to me, and understands why i wouldn't. I have had probably around 15 days in more than four years but of course it only takes 2 seizure to be a problem and get diagnosed. In that time i have driven safely, and do recall having SPS whilst driving on at least 1x occasion when i think back
Its also happened in front of people and apart from pallor change people cant tell - i have asked them if have done anything funny (eg checking for CPS)
I suppose if Lamotrigine had no side effects I may take a punt but as i say dont want to make things a whole lot worse
Sorry for long post - hope your tea isnt cold. Am feeling a bit bewildered just now. Also wondering if ongoing light-headedness is now E related. Sometimes i wake up like that though see no sign of nocturnal anything. Also get it at times of day when awake so trying to not to get paranoid
Thanks for reading x
Feel so frustrated and am going to phone his secretary this week