Posted by headachequeen on June 16, 2005, at 22:39:01
In reply to Re: Kat and everyone » headachequeen, posted by ed_uk on June 16, 2005, at 9:10:07
> Hi Kat,
>
> Thanks for your reply :-)
>
> Is the clobazam working well to prevent your seizures??
>
> ~EdHi Ed, you are welcome and I hope the answer was of some help :)
Between the topomax and the clobozam the seizures are at bay right now and I hope things stay that way for a long while;
soon as I add the tegretol, which is supposed to be the main anti-seizure med, back into the equation, everything goes completely out of whack...
the latest experience being this 'progression' to the fall flat on your face unconscious routine...
twice with that experience was enough to last me for three life-times...
since then I have had two of the nocturnal seizures and LOL they were a relief, then the other morning, perhaps a week ago, I could not be wakened and when finally I 'came to' I had no idea where I was or who I was or who or what any one or thing was...
so that was it again for the tegretol and at that point I had tried taking 50 mg a day... supposed to be on 1200 mg a day....
but I cannot use it at all...
with the clobazam - 30 mg a day - and the topomax I have none well, hardly any, and very rarely, of the nocturnal seizures and none of the daytime marshmallow experiences (as if I am trying to fight my way through a room full of cotton wool or marshmallow to try and be heard or to talk or do anything at all..
someone described it once as a saran wrap state..
nor do I have fugue states..
so I think it makes more sense to increase the topomax and the clobozam although it does have a drowsy effect according to one of the neurology residents in the hospital...
although it doesn't seem to make me sleepy when I take it in the morning...
If I miss the topomax for any reason, I know it in very short order...
and if I skip the clobozam for more than two doses I suspect I would begin to realise it too..
kat
poster:headachequeen
thread:5053
URL: http://www.dr-bob.org/babble/20050611/msgs/514078.html