Epilepsy Forum - Desperate

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Q: Desperate

asked by: Yorkie on May 22nd, 2005

New User

Help! :(
i am desperate or some advice/help and don't know where to turn. I have been diagnosed as epileptic for 2 years but am still no nearer finding a good medication for me.
I am due to start keppra on tuesday and am already on rivotril.
I have just moved house - half a mile but it takes me outside my doctors catchment- so I need to change doctors, have just changed my neurologist as the first one simply saw me, did the test, told me I was epileptic (without explaining what type of epilepsy I have or what it is) and told me to come back in a year. Also ignored everything I said and laughed when I told him tegretol was increasing my seizures and then suggested he should refer me to london - just in case he had the diagnosis wrong!!
I've been told I have tonic clonic seizures and there just seems to be no end to it. Work are fed up but realise there is nothing they can do - I can't drive so have to be office based (i would sometimes work on/near water), I can't drink and i'm getting to the point where i'm scared of going out in case I have a fit.
Went out last night - had a bad nights sleep involving 3 seizures and have just had one again now. I can talk to my boyfriend but I just feel nothing is moving on.
Does any body have any suggestions of who I can talk to or idea of how long it normally takes to get things sorted out?
I know I sound self pitying but I don't know how much more I can take :cry:

Replies(2)

kayakmom

replied on May 24th, 2005

Experienced User

I am so sorry you have so much going on with little help!

Is there any way to seek a second opinion? Maybe it is time for a fresh look at things from someone new.

Some meds do make the seizures increase if they are not the right one for you. He needs to listen and offer real help.

Hang in there. Iknow it is so frustrating to keep trying meds to find one that works for you.

FRUSTRATED

replied on June 16th, 2005

New User

Re: Desperate

Desperate

I am new to the forum and I am 21 years old. My outlook on your
situation is to get a new doctor ( I know it's hard to find a good one
i'm on my 3rd one) . Then, get him to diagnose you and put you on a
medication, that is safe for pregnancy for in the long run. I have tonic clonic and absence seizures and i'm on keppra and lamictal. Just keppra
holds my tonic clonic seizures, but not my absence- although everyone
is different, keppra might work for you. By the way i've almost taken
every aed possible so if you have any questions, just ask. By the way,
if your seizures consist of you falling down, shaking, eyes rolled back,
and being very tired afterwards. That is tonic clonic. Take care.

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