did I just have a seizure..?

[cpuerini]

Hi everyone..

It seems like 90% of my seizures are overnight, and most of the time I know because my boyfriend is with me, but he left for Florida and won't be back until next Wednesday. I woke up a few hours ago, slightly confused, thinking mostly clearly but couldn't talk right. I live with my mom because I was just diagnosed in October and this isn't insert control yet, but I didn't go to try to talk to her because I figured I was just half asleep.. and now I realize that was stupid. But I wouldn't know if I had a partial or general seizure anyway....

I'm laying here crying now, I'm so sick of this. I'm on 300 mg of lamictal, keppra, vimpat, clonazepam, and dilantin. In October, when I was first diagnosed, I went into status with grand mals. Since then I was having one a month, last month I had a grand mal then a partial. Last Sunday I had two grand mals during my sleep, but I figured it was because the pharmacist gave me the generic version of lamictal, so I got the real version. Now this.

:'(

 

[arnie]

Hi there! It sounds like you were kind of post-ictal, so you certainly could have had a seizure of some sort. I have had thousands of partial seizures (both simple and complex) over the last 32 years, and five tonic-clonics (grand mals) so I'm pretty familiar with post-ictal states! What really jumped out at me is your medication list. Are you actually on all of those at one time? If you are, it seems pretty out of the ordinary to be on that many meds so soon after being diagnosed. Usually neurologists will try one at a time and fiddle with the doses for a while to see how effective the med will be. If the first one doesn't work or if the side-effects are too bad they will then try another one, and so on. That process takes quite a while, and they will usually start combining meds only after several monotherapies have failed. Being on five meds four months after diagnosis seems really strange. Obviously, I'm not a doctor, but if your neurologist thinks that that many meds are OK, I would strongly recommend getting a second opinion. Best of luck with everything!

 

[masterjen]

Even if you have only been trying these one at a time, it's a lot of medication to have tried in 4 months! Especially given that it would take at least a month to tell how well one of the medications is working and then on top of that most of the medications still have to be increased slowly to a therapeutic dose and therefore meaning much longer than a month to determine true effectiveness.
This is particularly true for lamictal. Maybe my calculation is off, but the starting dose for lamictal is stated as 25mg per day for 2 weeks, then increased by 25 mg every 2 weeks. So it would take 6 months to get to 300mg. How did you get to 300 mg of lamictal in only 4 months?
Sorry, don't mean to sound like some expert in medication, because I'm not, but as arnie said, something is a little strange about all that medication in only 4 months.

 

[cpuerini]

I started at 50 with a blister pack, went up to 100 after two weeks, then 200 after another two. Then 250 after I think a week, then a week later (this past Friday I believe, or last Friday) went up to 300

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[arnie]

Are you on all of those meds at once, though?

 

[cpuerini]

Yup

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[cpuerini]

Sorry just saw one post not all of these- yes I'm on all of these. My doctor wants to decrease the dilantin after I've been better for a few months. I had to be put on all of these except the lamictal, for the seizures to be controlled when I was first diagnosed since I was in status and having them so frequently.. my neurologist says this is a lot too and that I'm not a normal seizure patient.

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[arnie]

I still think a second opinion is in order. I simply can't imagine putting someone on five seizure meds nearly simultaneously. I would like to see what an epileptologist would say about that. I'd also be interested to know what some of the other folks here would think of that. Keep us posted, OK?

 

[cpuerini]

He has a lot of good reviews, and even people my family has known has seen him and say he's really good... I dunno, he seems amazed at how many medications I'm on too and they they're not working. He also mentioned that some people have a seizure once a month, once a week, one a year, that everyone is different... so maybe this will be my normal thing? My next appt is in a few weeks..

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[arnie]

How can he be amazed at the number of meds you are on if he is the one who is prescribing them? If someone else prescribed all those meds he certainly has the power to change them. Something doesn't add up. I would not wait a few weeks to look into that.

 

[cpuerini]

The hospital I stayed at street having I dunno five grand mals then going into status prescribed them, that was the only way they were able to get the seizures under control after a week or so

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[cpuerini]

He wants to get me off so many but he wants the seizures to be more under control before he takes them away

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[masterjen]

Of note is that being overmedicated can also cause seizures . . .
For your own sake, seek a second opinion by an epileptologist.

 

[lindsayschu2]

Masterjen--Just curious--you said the usual would be starting on Lamictal at 25 mg for 2 weeks, then another 25 added for 2 weeks, then so on. What would be expect with that titration? A little improvement each time, or often no improvement, or sometimes actual worsening before improvement is seen? Do doctors expect patients to have little to no improvement during that waiting time until they get to therapeutic dose?

 

[masterjen]

From my understanding, the reason the titration is slow is to avoid the side of effect of a nasty and sometimes life-threatening rash. It is true that it may take a while for improvement in seizures to become obvious, but if someone gets this rash it is nothing to laugh at. Often the recommended dose of lamictal is 100 - 200 mg, so my guess is that signs of seizure improvement, if it is the right medication for someone, may become obvious after a relatively low dose for some people.

 

[valeriedl]

I've had seizures like you described. I know what I'm doing but it's not or saying but it's not what is coming out of my mouth. This happens a good bit when I am coming out of a seizure too.

When I was first diagnosed it took a few years to figure out what the right recipe of meds that I should be on. The neuro usually kept me on the med for a few months to see if it was working. Depending on what was going on while being on that med he may have upped/lowered the dose or took me off the med completely and tried something else. Some of the meds I was taken completely off of because I couldn't handle the side effects or they weren't working at all.

I know I was on a good bit of different ones too through those years but taking as many different meds at the same time as you are right now seems like it's way too many. You may want to get a second opinion.

I never had a problem switching from name brand to generic, but not everyone is the same when it comes to this.

 

[cpuerini]

I'd say that my neurologist is actually a second opinion... I was first put on all of these in the hospital, as I've said I was in status for a day or so then had uncontrolled seizures for at least a week (I was heavily medicated and dont remember most of the 2.5 weeks I was in the hospital), so all these meds (minus the lamictal) was what they were finally able to control my seizures with. Then I saw a neurologist in the Neurology clinic, then finally saw my own private neurologist... so really this is my third opinion

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[valeriedl]

I was on a med at one time, don't remember which one, that was causing me to have seizures.

 

[cpuerini]

I don't think they put me on all of these at once in the hospital, that's why I was sick for so long cuz they kept trying different things

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[Nakamova]

The particular 4-med combo may have worked to control your status seizures, but given the emergency context for their use, it probably wasn't the most scientific approach to finding what works best.

I agree with the others that if 5 meds at 300mg per day aren't fully controlling your seizures, it's worth asking your neuro to take a closer look and consider reducing one or more medication or slowly tapering off altogether. More meds and higher doses don't necessarily = better seizure control. In the same way that individuals can have very different seizure patterns, they can also react very differently to anti-seizure meds. For some folks some meds can make seizures worse. And some meds are good for generalized seizures, but not so good for partials, or vice versa.

There are also interactions between all those drugs that can influence how potent they are. For instance, Dilantin can increase how quickly your liver processes Lamictal. This means that increasing Dilantin can make Lamictal less effective -- unless its dose is also increased at the same time. Your neuro should discuss that with you if he plans to up your Dilantin. Another concern of course is side effects. For me, Dilantin started to affect my gums after less than two years at a fairly low dose, so I had to switch. I hope you aren't experiencing intolerable or problematic side effects from all the meds, but if you are, it's another thing to consider when evaluating their efficacy.