Cutting back on a medicine

[valeriedl]

I've been on the same meds and dosages for at least 4 years now. My seizures haven't increased or decreased. I usually have on average 7 every month. They are normally simple and complex partial seizures. I do have grand mals but that's usually once a year.

I have damage to both sides of my brain so I am unable to have surgery so I got a VNS. He said that my epilepsy is very strong, he's foreign and that's the way he put it.

I've been on several different meds through the years, he said there's still 25 more to try, I don't know if that was a joke or not, but this mixture seems to be working the best. When I saw my neuro today he suggested I keep taking the same meds but try to decrease a dosage of it of at least one of them with the possibility of maybe going off it without it having any effects on my seizures because I'm on a good bit already.

Here's what I'm on:
Depakote 1500 mg - 2x times a day
Tegretol XR 1600mg - 2x a day
Keppra 3000mg - 2x a day
Lamictal 650mg - 2x a day

I also have a VNS and the settings are very high on it.

Two of the ones that I'd choose from would be either the Keppra because I'd like to get rid of some of the Keprage or the Tegretol because it's very expensive.

I know that everyone is different when it comes to medicines but does anyone have a suggestion?

 

[Fedup]

valeriedl

To be honest there is no question for me it would be the keppra, I know the tegretol is expensive but I still go with the keppra. The final decision is still yours though and only you will know best.

 

[valeriedl]

That's what I'm thinking too because I'm getting sick of blowing up on people in the grocery store for no reason.

I just wish that tegretol wasn't so expensive!

 

[lindsayschu2]

That's a pretty high dose of Keppra! But how long have you been on Tegretol? My neuro took me off tegretol because long term it's hard on the liver and causes osteoporosis (and I had been on it 20 years), so there's that to consider but if you have a better neuro than mine was, hopefully they are doing liver testing and bone scans so you would know. Keppra causes mood issues but doesn't really have many long term health concerns. Tough call it seems!!

 

[Belinda5000]

Valerie,
There is know way I'd take that many AEDs not anymore anyway.
There is to much I can't take anyway, I'm either alleric or med resistant.

I seem to have been on so much it's not even funny.I've tried I don't know how many different combos of drugs and tried about 23 different drugs.
I've had brain surgery,the VNS.

Here is what I take in just AEDs

Tegretol 900MG 3x day.

Topamax 200MG 2x day.

Phenobarb 30MG 1x day.

 

[AlohaBird]

Depakote 1500 mg - 2x times a day
Tegretol XR 1600mg - 2x a day
Keppra 3000mg - 2x a day
Lamictal 650mg - 2x a day

Two of the ones that I'd choose from would be either the Keppra because I'd like to get rid of some of the Keprage or the Tegretol because it's very expensive.

I have the same Rx as you for depakote plus a side order of phenobarbitol. The first med I was ever put on was Tegretol all by itself so I knew that the side effect were directly related to that Rx. It felt to me like living through the world's worst hangover but one that never ends. When I stopped taking it, I felt like a foggy veil had been lifted from my whole world. I don't have any experience with keppra so I can't help there.

 

[Belinda5000]

Valerie,

I'm allergic to Depakote
med resistant Tegretol XR
allergic to Keppra
allergic to lamictal

 

[valeriedl]

Valerie,

I'm allergic to Depakote
med resistant Tegretol XR
allergic to Keppra
allergic to lamictal

You sound like me in a way Belinda. I don't know how many different meds I have been on through the years before we found ones that worked (if you want to phrase it that way because I do still have seizures) and didn't cause any side effects or have problems with.

 

[Nakamova]

I agree with starting with Keppra for lowering the dose. It has a relatively short half-life, so you might be able to get a sense of how you feel on a lower dose sooner than with the other meds.

 

[MorganFree]

It seems a lot of folks are on multiple seizure meds. Is it uncommon to only have one low dose prescription (250 mg Keppra - however my neurologist ok'd me to only take 1/2 pill AM and 1/2 in PM vs 1 whole pill 2x's a day) I tried to cut back to 1/2 pill PM only this past week and it didn't fare so well for me.

 

[masterjen]

The lower the dose that works and the fewer medications that one needs to be on for seizure control, the better. It's just that over the years some people can sometimes become resistant to low doses or even to a particular medication, so another medication is added or replaced with another one. Also, some people experience side effects of a particular medication so need to use that one at a lower dose and add another at a low dose for adequate seizure control. But, of course, use of multiple medications can enhance side effects . . . It can become complicated, and is a careful balancing act with trial and error.
To return to your question of is it uncommon to be on a low dose of only one medication - if this forum is any indication I would say yes, especially for those who have had epilepsy for a long time or who have accompanying medical conditions.

 

[Nakamova]

I'm able to have seizure control with a single medication at a relatively low dose.

According to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2730009/

The majority of patients with epilepsy respond to treatment with monotherapy; 47% of patients become seizure-free with the first AED tried, and another 13% achieve freedom from seizures with the second monotherapy trial.

CWE's membership might represent a skewed sample since it might be more likely to attract folks who are in part frustrated by multiple meds, side effects and/or refractory seizures.