What's up with me - UPDATED BELOW
Hello all,
I have posted on here several times but for those of you who haven't seen me around i'm from Sydney Australia and i've had Epilepsy most my life. I was 14months old when I had my first seizure. I have PSE but my seizures haven't/aren't always related to photosensitivity and in fact only recently have my EEG's started to show photosensitive activity (although even as a youngster disco lights and such would always make me feel unwell).
I am currently in the process of preparing for a long distance move. The move is for a year so it's not forever and i'm not wanting to change my neurologist. He is great and I absolutely love him and given that the move is only temporary i'm thinking there may be a way around it.
I'm thinking i'll get in contact with him come Monday just to let him know that I am moving and that I am returning in a few months for a consultation that we had previously arranged. I am having Myoclonic jerks (at least that is what I think they are - just the individual twitches of arm/leg/head - most of the time just on one side of the body at a time but both sides have been effected) and I am also in the process of slowly decreasing medication. As I write this I think I must be absolutely bloody stupid to be moving at this time but i'm going where my work is. I haven't had any TC or other seizures but my dr did say that he didn't want me to decrease meds again if I was having seizures at all(the reason I am decreasing meds is because I had originally started to decrease Epilim and increase dose of Lamictal and then started to have side effects to Lamictal - i'm now going right off Lamictal and back to Epilim). The twitches i'm having whilst fairly frequent (from a minimum of 10 a week to maybe 20) are not a problem themselves in my daily life - I mean it's not like it stops me walking or talking or interfers with my eating (except maybe i'll have a slight spill) and it's not big enough for other to even notice most the time.So anyway i'm thinking I should let him know. We don't have long til we move but I suspect if he needs to see me then he will make a time to slot me in. At the least it will give me a chance to discuss what the plan is for when i'm out of Sydney.
Thanks for reading and sorry for the long and boring post.
Hello all,
I have posted on here several times but for those of you who haven't seen me around i'm from Sydney Australia and i've had Epilepsy most my life. I was 14months old when I had my first seizure. I have PSE but my seizures haven't/aren't always related to photosensitivity and in fact only recently have my EEG's started to show photosensitive activity (although even as a youngster disco lights and such would always make me feel unwell).
I am currently in the process of preparing for a long distance move. The move is for a year so it's not forever and i'm not wanting to change my neurologist. He is great and I absolutely love him and given that the move is only temporary i'm thinking there may be a way around it.
I'm thinking i'll get in contact with him come Monday just to let him know that I am moving and that I am returning in a few months for a consultation that we had previously arranged. I am having Myoclonic jerks (at least that is what I think they are - just the individual twitches of arm/leg/head - most of the time just on one side of the body at a time but both sides have been effected) and I am also in the process of slowly decreasing medication. As I write this I think I must be absolutely bloody stupid to be moving at this time but i'm going where my work is. I haven't had any TC or other seizures but my dr did say that he didn't want me to decrease meds again if I was having seizures at all(the reason I am decreasing meds is because I had originally started to decrease Epilim and increase dose of Lamictal and then started to have side effects to Lamictal - i'm now going right off Lamictal and back to Epilim). The twitches i'm having whilst fairly frequent (from a minimum of 10 a week to maybe 20) are not a problem themselves in my daily life - I mean it's not like it stops me walking or talking or interfers with my eating (except maybe i'll have a slight spill) and it's not big enough for other to even notice most the time.So anyway i'm thinking I should let him know. We don't have long til we move but I suspect if he needs to see me then he will make a time to slot me in. At the least it will give me a chance to discuss what the plan is for when i'm out of Sydney.
Thanks for reading and sorry for the long and boring post.
Last edited:
