So confused

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Dale3_8fan

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I am a 39 year old female who was first diagnosed with epilepsy on march 21,2013. I am so confused by all if this. I have known all my life that something wasn't quite right with me but had almost always been able to deal with it. The latter part of 2012 I started having episodes that I said/thought was the flu because of the not being able to stand with out feeling like I was loosing consciousness, excessive tiredness, dizziness and lots of confusion. (It was flu season and it seemed to be going around). After about 10 days if this I got somewhat better. A couple weeks later this happened again with all the same outcomes. This contined all the same till January. In January it set in and it was all downhill from there. By feb I was at the dr twice a week. A MRI was ordered and it showed changes to my brain. I also was sent to a cardiologist because of uncontrolled blood pressure ( I was already on Bp meds). Everyone kept thing that my problems were blood pressure issues until it was stabilized an the problems went away. Was told I possibly had a mini stroke. Whil that was never confirmed it was also never ruled out. I then was referred to a neurologist. It took 6 weeks to get in to see him an in the meantime I was oaf nosed with possible MS. Within minutes of seeing the neuro he do a EEG and confirmed seizure activity. Lots of it is my understanding. I was aware if at least 400 of these episodes a day. I am just not sure hat I should be expecting from my neuro. I am not even 4 months into treatment and am on my 4th medicine. My dr doesn't do any kind of exam in visits and really doesn't even look at the "breakouts" I am having from what I think are the meds. I am still having seizures and I am scared. Any comments in where I should go with this/what I should be doing or expecting? Tha is in advance!
 
This is a copy of the actual diagnosis...

Localization-related (focal) (partial) epilepsy and epileptic syndromes with complex partial seizures, with intractable epilepsy
 
Dale3_8fan said:
This is a copy of the actual diagnosis...

Localization-related (focal) (partial) epilepsy and epileptic syndromes with complex partial seizures, with intractable epilepsy
Click to expand...

:ponder:
intractable epilepsy is only determined after three medications are not effective. i understand that you've tried four, however, in only four months? that is not a normal (or acceptable) timeline by any means. why so many so quickly? allergic reactions or side effects to all of them? really doesn't make sense. even if it is bad reactions, that doesn't mean the med was not effective, because in reality you would have gone off them too soon to give them a fair anti-seizure chance.
and if we're not talking bad reactions then would it be that you had a breakthrough seizure on each and b/c of it they took you off? that doesn't seem right either, not four times in four months anyway. more often than not if you have a breakthrough the neuro will up the dose for seizure control rather than take you off first time.
i would be asking ALOT of questions at your next appointment. receiving the label 'intractable' is life-changing, as it means the possibility of surgery or vns, and if those aren't an option, could be a med guinea pig forever.
make him answer to you, and don't leave until you are satisfied. not every neuro does their job, as many of us on here can tell you. the right doc in epilepsy is EVERYTHING.
hugs hugs hugs and good luck.
 
Tha is so much for replying to me. I know ABSOLUTLY nothing about all of this and the more I try to read the more confused I get. When I ask questions to my neuro he replays with its all part of seizures or you are just having a seizure. I have a feeling that I need to find a neuro! I have such confusion going on in my head that I don't even know where to start. I am positive that the diagnosis of seizures is correct but that is all I am sure of. As far as the meds, I really don't understand that either. I had severe depressive and increased seizure activity with keppra. Then on to lamictal and broke out in a rash and called to ask about it and they immediately took me off if it and started another(started with a z?) and a rash occurred on neck and face. The first of June I wa switched to vimpat. Most days are so confusing to me that I don't know if meds are working or not.
 
okay, so, these are allergic/side effect reactions. that does not mean intractable. as i said before, intractable means unsuccessful seizure control with 3 aed's (some neuros/hospitals will label it after two meds, but of all the research i've done and docs i've met, the standard across the globe is three).
as for the lamictal, that was in my experience unecessary as well. i got the rash day one as well, so my epileptologist (as we were trying hard for seizure control on a new drug combination), took me off it for four days, then when the rash was gone, went back on at half dose (12.5mg) for two weeks so my body could get used to it. then we upped to the standard start of 25mg. others on here have had the same experience, just half-dose until it was tolerable (with doctor's direction of course).
-was the z zonegran?
-i'm on vimpat now and can only handle small doses (if not i'm walking into walls). it has cut my partials down a bit tho. as i said, just b/c a drug causes side effects does not mean it doesn't work, you just have to stay on it to see, and if necessary work out with your doc a smaller dose than originally prescribed.
 
The only med that semi stopped the seizures was the lamictal. All the others have had no change. I was very upset over them taking me off the lamictal. From what I have been reading from you and others on here I just need to find a new dr. I hve had a bad feeling since 3 weeks after being diagnosed and went back for my second visit about this dr. In my opinion this is a serious issue and from what you have sai it sure don't appear that I am getting proper treatment. I guess I should have knew this but I have nothing to compare it to not do I know anyone that I can discuss it with.
Thank you for all your useful info.
 
I went through a good bit of meds through the years before I found some that worked for me, I am still having seizures though.

I was taken off of one because I was allergic to it but the others were from the side effects or that they weren't stopping the amount of seizures I was having.

The neuro would leave me on the med for a few months before taking me off of it to see if it was right for me. You won't know in just a few days if the med is going to work or not. You have to give it time to kick in in order to know. Sometimes they have to change the doses too before they know what will work for you.

I think you might want to start looking for a new neruo because this one doesn't seem to be listening to what you have to say about things.
 
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