What could I be experiencing?

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There is also zonegran I have already tried every drug besides nurontin and some aed that 1 and 100000 can die from last resort med
 
Nakamova said:
Phenobarb's considered as effective as newer anti-seizure meds drugs, but has a "scary" rep because it's a barbiturate. As long as it controls your tonic-clonics and you're not bothered by its sedative effects, then there's no particular need to go off of it.

In theory, Phenobarb should help with the partials too. Since it isn't though, ask your doc about the others out there. Maybe Neurontin or Vimpat if you haven't tried them yet? If you do go off of Lamictal make sure the taper is very slow to minimize any withdrawal side effects.
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Ok... I've been on Neurontin and had weight gain... but Vimpat doesn't sound familiar... is that the only name it goes by?
omg I HATE the sedative effects of phenobarbital.... it is a nightmare!!!! but yes, it has been controlling the Grand Mals. ...... only
 
Cint said:
I was wondering the same. Maybe you did wean off the Phenobarb too fast, but then again......:ponder:.



Are you seeing a specialist at an Epilepsy Clinic? An epileptologist or just a neurologist? Sounds to me like you really need a specialist at this point.

I've been on 10 or 11 drugs, to no avail, and had brain surgery and now the VNS.
When someone discovers a drug or something that covers BOTH CP's an TC's at the same time, let me know, too!!
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I see a neurologist he is really good... the best I have had thus far! I really like him
.. the Neurologist that I seen previously was the one who tried to get me off pheno... I think he did try too fast... because within a couple days I started having back to back Grand Mals ( I just realized that my auto correct tried to turn my "Grand Mals" into "Grand Meals " oh goshhhh... I made a post with that word a second ago.... I hope it doesn't say grand meals :/) omg
 
qtowngirl said:
Here is one very considerable reason why pheno isn't ideal to take with a secondary med (the same is true with carbamazepine, which I am on and was recently told that is why the level of lamotrigine (lamictal) I take isn't working properly anymore).
Shannon it's clear you need something that takes care of your partials, so though it's AWESOME pheno works for your t/c's, it will negatively affect whatever secondary drug you're on for those damn partials... which at any time can lead into a t/c so in my mind (and my experience), control of the partials is just as vital.
It's medically-wordy but understandable:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1885026/

Please keep in mind this is just my two cents but I do a lot of research and definately want to help :)
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Oh my! I'm definitely talking to my neuro about this!!!! Thank you so much for showing me this!!!!!!
 
Try not to be hun, there are SO many out there.
None of us like to be guinea pigs but sometimes that's what we gotta do to find THE ONE. Best of luck talking to your neuro!
 
qtowngirl said:
Try not to be hun, there are SO many out there.
None of us like to be guinea pigs but sometimes that's what we gotta do to find THE ONE. Best of luck talking to your neuro!
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I agree!! And I'm willing to do anything as long as it doesn't kill me .... :)
 
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