What could I be experiencing?

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ShannonD

ShannonD

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This is very hard to explain, but I will do my best. Alright... there are several times this will happen to me... say for instance I go into a grocery store... I will FEEL like I'm there, but I don't KNOW I'm there? It is so hard to explain.. I just am so confused about this!
 
It is very frightening!! Sometimes I am alone and it happens!! I always end up double checking my whereabouts !! And looking... did we actually buy the groceries or am we on our way home with nothing??
This type of experience just started withing the past year. So its possible my partials maybe changing or or getting worse? Guess I have to talk to the neuro about maybe a new Med that we can try for the partials .... my grand mals seem to be controlled... the partials definitely not!
Thanks for your idea... :)
 
Yes, Talk to your neuro and don't leave anything out. I have been there and it is scarey sometimes.
 
LW6279 said:
Yes, Talk to your neuro and don't leave anything out. I have been there and it is scarey sometimes.
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Oh yes! I will definitely talk to him further about it... why keep taking the secondary Med (for the partials) ... if it isn't working?
 
I see you're on phenobarb and lamictal? My guess is that you think the lamictal is the one that should go>
 
It definitely does sound like your partials are getting worse as E and seizures can/do change over the years. I've had TC's and CP's over the years, with my TC's being controlled now and I still have a SP or CP on occasion. I still take two meds, even with the VNS.

IMO, phenobarb should go and try a newer med.
 
Cint said:
IMO, phenobarb should go and try a newer med.
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:agree:

Not the best med to be on long-term.
However, like I was asking, it's a matter of which drug is doing what. If you were only having tonic clonic's and the phenobarbitol helped with those, but then started having partials and lamictal was added but it doesn't help them, then yeah the lamictal is pointless. TC's are the ones we need most controlled, so if phenobarb controls them there's no need to be on two. But, it isn't the safest drug by far so it would just come down to how comfortable you are weaning off that and trying one newer, safer drug that is made to control both TC's and partials.
 
qtowngirl said:
I see you're on phenobarb and lamictal? My guess is that you think the lamictal is the one that should go>
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I think that as well... I can't even guess what in the world I'm remaining on it for... the phenobarb seems to be doing its job for the t/c but I'm on Lamictal for the partials and its not working at all... the ONLY thing I get out of the deal is anxiety!
 
Cint said:
It definitely does sound like your partials are getting worse as E and seizures can/do change over the years. I've had TC's and CP's over the years, with my TC's being controlled now and I still have a SP or CP on occasion. I still take two meds, even with the VNS.

IMO, phenobarb should go and try a newer med.
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We have tried to trade my phenobarbital to a new one but I would have back to back t/c seizures everyday.
I just knew what is going on with me has to be related to the epilepsy... these feelings are just too odd to be anything other than. I see my neuro soon and him and I need to attempt a new plan
 
qtowngirl said:
:agree:

Not the best med to be on long-term.
However, like I was asking, it's a matter of which drug is doing what. If you were only having tonic clonic's and the phenobarbitol helped with those, but then started having partials and lamictal was added but it doesn't help them, then yeah the lamictal is pointless. TC's are the ones we need most controlled, so if phenobarb controls them there's no need to be on two. But, it isn't the safest drug by far so it would just come down to how comfortable you are weaning off that and trying one newer, safer drug that is made to control both TC's and partials.
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Yes I agree it isn't the best seizure Med... I want something that will do the trick! I am wondering if the weaning off phenobarbital was done wrong?? Maybe too fast???
I've been on so many anti convulsive meds and none have worked so far... I've been on
Keppra, Nueronton, Depakote, Lamictal, Tegritol, Phenobarbital.. that's all I can actually remember at this point... there is more ... I just can't recall all of them. The Nueronton and depakote made me gain A LOT of weight... wow... AND DIDNT EVEN WORK gees.
What is a good Med that covers both t/c and partials at the same time?
 
I haven't found anything that helps my partials (when I went on Topamax I didn't have a partial for 10 months, then when they did come back it was with a vengeance so I sorta recommend it but can't give it a 10/10), and also went over two years without a t/c on it (combo of that and Carbamazepine). It is used for partials and t/c's and recommended to be used as a monotherapy drug. If that's not one you've tried maybe give it a shot (it also promotes weight loss - not something that works for everyone but I know it sure kept my weight down for years).
 
qtowngirl said:
I haven't found anything that helps my partials (when I went on Topamax I didn't have a partial for 10 months, then when they did come back it was with a vengeance so I sorta recommend it but can't give it a 10/10), and also went over two years without a t/c on it (combo of that and Carbamazepine). It is used for partials and t/c's and recommended to be used as a monotherapy drug. If that's not one you've tried maybe give it a shot (it also promotes weight loss - not something that works for everyone but I know it sure kept my weight down for years).
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I am willing to try anything that might help me. I will bring it up to my neuro in our conversation. I know I don't want anything that can make me gain weight or prevent me from losing weight.... like this lamictal is doing :(
 
I get it (and of course our weight isn't as important as preventing seizures), but you'll have no worries about gaining weight on Topamax. Plus it's a lot newer than phenobarb (what isn't :), so less side effects and generally safer. Some people don't care for what it does (nickname dopamax), but it's different for everyone. I didn't have a dopey feeing on it, except for once when the dosage was increased but it only lasted for two months or so.
 
qtowngirl said:
I get it (and of course our weight isn't as important as preventing seizures), but you'll have no worries about gaining weight on Topamax. Plus it's a lot newer than phenobarb (what isn't :), so less side effects and generally safer. Some people don't care for what it does (nickname dopamax), but it's different for everyone. I didn't have a dopey feeing on it, except for once when the dosage was increased but it only lasted for two months or so.
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Yes that sure is true.... I would rather have weight than tc but... please no weight ... lol... I have had people ask me why would I stay taking the meds if I can't lose weight or if it made me gain weight.. ummm its called SEIZURES.... I DO NOT WANT THEM!
The dopey feeling is horrible! I wake up exhausted, I'm lethargic... nauseated... and I'm like that all day... I think its from the phenobarbital! Its why I stopped taking it when I was 13 ( I didn't even tell my mom) I felt horrible... so... then the Dr. Put me on Tegrital, I got taken off of them at 15 since I used them to try and commit suicide... then from 15-28 I was a guinea pig for many meds... then the last 8 years it has been phenobarbital plus other trials for the partials... but for some reason I'm stuck on lamictal .... I need to get this straightened out... I'm tired of the run around with meds... so bad..
 
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.
 
ShannonD said:
Yes I agree it isn't the best seizure Med... I want something that will do the trick! I am wondering if the weaning off phenobarbital was done wrong?? Maybe too fast???
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I was wondering the same. Maybe you did wean off the Phenobarb too fast, but then again......:ponder:.

ShannonD said:
I've been on so many anti convulsive meds and none have worked so far... I've been on
Keppra, Nueronton, Depakote, Lamictal, Tegritol, Phenobarbital.. that's all I can actually remember at this point... there is more ... I just can't recall all of them. The Nueronton and depakote made me gain A LOT of weight... wow... AND DIDNT EVEN WORK gees.
What is a good Med that covers both t/c and partials at the same time?
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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!!
 
Cint said:
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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ME TOO!!!!!!!!!!!!!!!!

Ah what a life-changer that would be! :banana:
 
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 :)
 
Yes, all the meds can potentially interact in tricky ways; as a standalone Phenobarb is realtively safe though.
 
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