Epileptologist: Has anyone had an app... - Epilepsy Research...

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Epileptologist

RR25 profile image
RR25
4 Replies

Has anyone had an app with an Epileptologist? If so....what should I expect at my appointment.

Thanks RR25

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RR25 profile image
RR25
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4 Replies
jules1973 profile image
jules1973

I am under an epileptologist the now and he is an amazing man expect lots of tests and appointments i only had this as i was going through epilepsy that was drug ressisant in the end i had brain surgery that was 2 yrs ago next month and have been seizure free since

zippytiptoes profile image
zippytiptoes in reply to jules1973

How do you get to see an epileptologist? Where is yours based?Our daughter has drug resistant epilepsy and we are now at a dead end having repeated the same cycle of on meds/off meds over the last four years. On meds she is very aggressive and they don't stop the seizures. Off meds she is much calmer but has many seizures in a day. We are at the end of our tether. Any suggestions would've gratefully received :)

jules1973 profile image
jules1973 in reply to zippytiptoes

I am under a neurologist and an epileptologist i am in scotland the neurologist was at a loss and could do no more so he referred me to a dr derry at the western general hospital in edinburgh he is amazing along with the neurosurgeon i no longer have seizures 2yrs now you are entitled to ask for a second opinion and ask to see one you are perfectly within your rights to do so x

RR25 profile image
RR25

My neuro is going to refer me as Ive been on 2 meds together now for a number of years and on the maximum dose. Although Im not totally seizure free with them, the number i do have has reduced significantly. He does not want to add a third med as he doesnt know which med would be best suited to the other 2 and because Im young and keen for a family in the future...the other meds available have risks during pregnancy and to unborn babies so he feels a referral to an Epileptologist is the next best thing to do for him/her to review my case. He said there is still a possibility to become seizure free and hasn't classed my case as drug resistant at present which was good to hear.

@Ziippytiptoes....you could ask your childs neuro to refer you to one considering there is no major change.