Hey Everyone, It's Kaitie. I am writing mostly to vent (apologies in advance).
I just got off Topamax and at first I thought this was the greatest thing ever - and I switched to Lamictal. Two major problems...most important I'm having like a jillion Complex Partials a day. (Like 10 at least) and the other thing...I'm gaining weight - grrrrr....

The whole purpose of getting off Topomax was to increase my energy level and to make me a little 'faster' so to speak...school was suffering. Well I truly haven't noticed much of a difference - so now I'm wondering if I should just go BACK onto Topomax and get rid of the seizures.

I HATE taking ANYTHING quite frankly - so this really really sucks. I'm thinking now about all sorts of depressing things - like 'God, I'll be taking these stupid pills forever!' and then, I wonder what people think of me - when I'm talking to them and then I just stop, and do something else.

At a craft store the other day I had like 5 items at the checkout, then I had a CP and then before I know it I guess I was organizing my things on the counter and I'd decided already that I didn't want two of them, but apparently when the cashier asked if I wanted them I said yes. Then my friend tapped me on the arm (this part I know, the rest she told me about) and said "Do you REALLY want those???" and I'm like - no. But STILL I didn't know what was going on...and then I was just like - CRAP, no, no I don't want those...and then I felt like CRAP for so long afterwards.

I HATE THIS HATE THIS HATE THIS!
Join me in my rant if you like.

Love Kaitie

Vent away!! So hard when you do not have control! Hope you are having a better day today!!

Hey Everyone, It's Kaitie. I am writing mostly to vent (apologies in advance).
I just got off Topamax and at first I thought this was the greatest thing ever - and I switched to Lamictal. Two major problems...most important I'm having like a jillion Complex Partials a day. (Like 10 at least) and the other thing...I'm gaining weight - grrrrr....

The whole purpose of getting off Topomax was to increase my energy level and to make me a little 'faster' so to speak...school was suffering. Well I truly haven't noticed much of a difference - so now I'm wondering if I should just go BACK onto Topomax and get rid of the seizures.

I HATE taking ANYTHING quite frankly - so this really really sucks. I'm thinking now about all sorts of depressing things - like 'God, I'll be taking these stupid pills forever!' and then, I wonder what people think of me - when I'm talking to them and then I just stop, and do something else.

At a craft store the other day I had like 5 items at the checkout, then I had a CP and then before I know it I guess I was organizing my things on the counter and I'd decided already that I didn't want two of them, but apparently when the cashier asked if I wanted them I said yes. Then my friend tapped me on the arm (this part I know, the rest she told me about) and said "Do you REALLY want those???" and I'm like - no. But STILL I didn't know what was going on...and then I was just like - CRAP, no, no I don't want those...and then I felt like CRAP for so long afterwards.

I HATE THIS HATE THIS HATE THIS!
Join me in my rant if you like.

Love Kaitie


Sorry you had such bad luck w/Lamictal. I had a silmilar experience, then got the allergic rash, and had to go off it anyway. Back to topamax and trilieptal I am. Yuck. Hang in there. I have Complex Partial too. I hope you get a better med.

Angie

Angie - did you notice a major personality change on Lamictal? I mean, I'm moody as all get out! I'm grumpy and snappy and people ARE noticing...

Love Kaitie

Have you tried Zonegram? I am using 300 mg with Keppra and only some CP's. I am 46 and started having Grand Mals at 40 for no reason. Damn frustrating. So vent baby vent!

Angie - did you notice a major personality change on Lamictal? I mean, I'm moody as all get out! I'm grumpy and snappy and people ARE noticing...

Love Kaitie

Hi:

By the time I would have had enough in my system to be grumpy, I had alerady gotten that evil rash, so I had to stop the lamictal. I am back on topamax and trileptal. I was not crazy about Lamictal even before the allergic reaction...I felt really fuzzy. There's always trileptal or neurontin to consider....I am sure there are others, but I am to tired to think of any!

Angie

I had a neuro appointment yesterday and I asked him if I could go on Topomax again. He said if thats really what I want to do then I could. So onward ho! I'll take the side affects in exchange for seizure control. The only thing that REALLY bothers me about it is the tingly sensation and the fact that pop tastes like aaaaaaaaahhhhhhhhhh!

Love Kaitie

I had a neuro appointment yesterday and I asked him if I could go on Topomax again. He said if thats really what I want to do then I could. So onward ho! I'll take the side affects in exchange for seizure control. The only thing that REALLY bothers me about it is the tingly sensation and the fact that pop tastes like aaaaaaaaahhhhhhhhhh!

Love Kaitie


Do you mean the tingly hands and feet phenomena? Yes, it is annoying. But, what can you do? As for the pop, I can't really drink it anyway because I have bad reflux! I was just so glad to lose the baby weight! I love topamax for that lovely side-effect. I hope it works out better.

Angie

This is really strange. I'm on 50mg of Topomax now and so far no annoying side affects. The pins and needles in the hands and feet? Not there! And I can still drink pop. I remember way back when I first went on it the side affects were UNBEARABLE!

Could this be because I've already taken it once in my life, or is this because I'm on the Lamictal still?

Strange Strange Phenomena!

Love Kaitie
Oh, and I'm definately NOT complaining! :D

This is really strange. I'm on 50mg of Topomax now and so far no annoying side affects. The pins and needles in the hands and feet? Not there! And I can still drink pop. I remember way back when I first went on it the side affects were UNBEARABLE!

Could this be because I've already taken it once in my life, or is this because I'm on the Lamictal still?

Strange Strange Phenomena!

Love Kaitie
Oh, and I'm definately NOT complaining! :D


Who knows? It could also be because you're only on 50 mg up to this point. Or MAYBE we're both confused and what we THOUGHT were side effects are part of the seizure. HMMM. The brain is such a complex thing, how would you really know. The pins and needles/numbness phenomena, I believe is the topamax, but the pop thing you were referring to could have been anything. I wouldn't know because I don't get it unless my allergies are bad. I wish you continuing good luck!

Angie

Angie

I totally understand your frustration. They keep changing my meds. Topamax was the best I was on but I was still having seizures so they added Phentoin (the new dilantin) and immediately my memory went away and my speech went nuts speeking backwards etc. After a month they took me off the dilantin but it's been more than a week and my brain hasn't come back. It's like it's dead. I used to say the lights are on and no ones home. But the lights aren't even on. I have NO short term memory. Now I have to go off the topamax too. UGH!!!!!! I hope you have better success. It appears you do. :bouncing:

oops I misspelled and changed it right while it was posting -sorry! :nono: :confused: :o :eek:

Hi I am brand new here.Epilepsy in general is so frustrating! I am on 300 MG of dilantin twice a day plus I am now on Topamax 100mg twice a day I feel like a zombie. I hate it I never liked taking pills. I found out I had this problem the hard way by having a seizure and crashing my truck.

Hi I am brand new here.Epilepsy in general is so frustrating! I am on 300 MG of dilantin twice a day plus I am now on Topamax 100mg twice a day I feel like a zombie. I hate it I never liked taking pills. I found out I had this problem the hard way by having a seizure and crashing my truck.


Captain Kitty,
I am so sorry you found out by crashing!! Are you ok, was anyone hurt? The meds are very tough to get used to. Are they controlling the seizures as far as you can tell? Sometimes after 6 weeks or so of adjusting you feel less zombie like and not as tired. I truly hope that this happens for you!

Well I'm up to 100mg of Topomax now (along with the 300mg of Lamictal) and I'm feeling absolutely HORRIBLE...I'm sick as HECK but I can't tell if I'm JUST sick with the flu or if I'm sick with the flu AS WELL AS exhausted from Topomax. I don't have the energy to go to work. I've missed three days. I HATE THIS!

And from experience, I do know it takes at least a couple months to get adjusted - so give everything time! As for my own frustrated little self, I just somehow keep forgetting the light at the end of the tunnel (however dim it seems just now)

Love Kaitie :yawn:

Well I'm up to 100mg of Topomax now (along with the 300mg of Lamictal) and I'm feeling absolutely HORRIBLE...I'm sick as HECK but I can't tell if I'm JUST sick with the flu or if I'm sick with the flu AS WELL AS exhausted from Topomax. I don't have the energy to go to work. I've missed three days. I HATE THIS!

And from experience, I do know it takes at least a couple months to get adjusted - so give everything time! As for my own frustrated little self, I just somehow keep forgetting the light at the end of the tunnel (however dim it seems just now)

Love Kaitie :yawn:


Hi Katie:

Are you staying on the lamictal or weaning off? If you are weaning off, maybe you'll start to feel better once your topamax dosage is up high enough to get off the lamictal. I know what you mean about adjusting to being back on the topamax though...it isn't fun. If it's any consolation, I am up to 275 mg now, and I don't feel near as bad as I did at 100 mg. Plus, I felt HORRIBLE when I was on both lamictal and topamax, so I hope at least the worst of it is temporary for you too. BTW, a silly note, I think I finally noticed what you meant about the taste of pop. I hope you feel better soon.

Angie

Hi Katie:

Are you staying on the lamictal or weaning off? If you are weaning off, maybe you'll start to feel better once your topamax dosage is up high enough to get off the lamictal. I know what you mean about adjusting to being back on the topamax though...it isn't fun. If it's any consolation, I am up to 275 mg now, and I don't feel near as bad as I did at 100 mg. Plus, I felt HORRIBLE when I was on both lamictal and topamax, so I hope at least the worst of it is temporary for you too. BTW, a silly note, I think I finally noticed what you meant about the taste of pop. I hope you feel better soon.

Angie

Angie,

When I was first diagnosed my neuro put me on Topomax - I hated it, so new neuro, new med; lamictal...now I hate that too! It makes me horribly aggressive and moody. Grrrr! (watch out!) Oh, and little to no seizure control. So long story short, back on Topomax I go, and yes I am weaning off Lamictal completely.

And a few days ago I said goodbye to my memory! (I think ;) , I can't remember!) I forgot about that and Topomax, that is the WORST! Yesterday I couldn't even phone my boyfriend because I couldn't remember his number for the longest time. Then today at work someone asked me if the store was open on sundays and I had to think and think and then I was like - oh yeah, it is. The thing is, I work there every Sunday!

Gotta love it!
Take care everyone!

Love Kaitie

Captain Kitty,
I am so sorry you found out by crashing!! Are you ok, was anyone hurt? The meds are very tough to get used to. Are they controlling the seizures as far as you can tell? Sometimes after 6 weeks or so of adjusting you feel less zombie like and not as tired. I truly hope that this happens for you!
Yes I was hurt -thankfully no one in the other vehicle was. I was almost killed in a coma for 6 days and got a closed head injury thats what made the epilepsy worst I guess. I Broke most of the left side of my body, internall my leg and arm are all metal. So I am out of wor and now in my middle age back living with my mother not fun but I keep praying

Yes I was hurt -thankfully no one in the other vehicle was. I was almost killed in a coma for 6 days and got a closed head injury thats what made the epilepsy worst I guess. I Broke most of the left side of my body, internall my leg and arm are all metal. So I am out of wor and now in my middle age back living with my mother not fun but I keep praying


Glad to hear you keep praying! God can turn this into a thing that He can use. It is a huge change for you and not at all what you wanted at this stage in life I am sure. Hang in there. Try to take one day at a time. Do you qualify for SSI do you know? Is there something that you can do to stay busy? Even volunteer work a little each week when you are up to it can give you new purpose...

Hang in there. Hope things start improving a bit each week!

Angie,

When I was first diagnosed my neuro put me on Topomax - I hated it, so new neuro, new med; lamictal...now I hate that too! It makes me horribly aggressive and moody. Grrrr! (watch out!) Oh, and little to no seizure control. So long story short, back on Topomax I go, and yes I am weaning off Lamictal completely.

And a few days ago I said goodbye to my memory! (I think ;) , I can't remember!) I forgot about that and Topomax, that is the WORST! Yesterday I couldn't even phone my boyfriend because I couldn't remember his number for the longest time. Then today at work someone asked me if the store was open on sundays and I had to think and think and then I was like - oh yeah, it is. The thing is, I work there every Sunday!

Gotta love it!
Take care everyone!

Love Kaitie


Kaitie:

I may have mentioned this before, but here it is anyway. I hope the worst of the side oeffects are temporary. As you know I am topamax too, and it took quite a while, but the worst of the side effects did go away. I hope it works that way for you too. Hang in there,



Angie