What's up with me

[Trinity]

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 tonic clonic 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.

[Bernard]

Hi Trinity, it's good to hear from you again. Have you asked your neurologist if he has any recommendations on a doc who you can see in the area that you are moving to? Perhaps he can recommend someone.

[Birdbomb]

[RobinN]

Sounds like you have an exciting time ahead of you. I hope that you allow yourself to enjoy every minute of it.

[Trinity]

Well I spoke with my neuros office today and dr said that I need to hold off on cutting back my Lamictal for the moment. He said to keep going on my current dosage until I see him next (April)

[brain]

and good hearing from you again;
and please do keep us posted of the outcome!
I know it can be frustrating in Aussie Land,
for I have some dear friends who resides over
there, all over, and one especially in Sydney
who's husband has brain tumor; they actually
made him wait for months before they even
performed any surgery (and it was life
threatening). So my heart goes for you!

But there is help in case if you didn't know it,
just click on the Banner Below:

[Trinity]

Thanks. I'm sorry about your friend, that must be frustrating and upsetting. I have to admit though that i've never had a problem with my neurologist and the medical care i've received. I know there are some cases like your friends but all in all I think Australia has a wonderful healthcare system. But you know, nothing is perfect.