HELP- seizures all of a sudden after none for awhlie

[appsandsuch]

So I started Vimpat a little over a month ago, titrated slowly, and it's now included to my daily drug mix of Carbatrol, Zonegran, and a little bit of Klonopin.

Before I started Vimpat, I was having trouble where I was having a ton of anxiety and auras, and some seizures, though not any grand mals. But even when I have seizures, I have auras as a warning.

After I titrated up to a decent amount of Vimpat, I stopped having any sort of activity- no seizures, no auras, nothing. It's been a month since anything at all. I was thrilled about it.

Yesterday, during the day, I had a partial seizure, which I was bummed about- it lasted about 1h30min. I had some warning beforehand, so it didn't strike me as too odd, I just figured I was dealing with a lower threshold due to my upcoming period, even though last couple of periods nothing happened.

So last night I was out, feeling much better, and all of the sudden I had a seizure without any warning. I don't know if it was a grand mal, as I don't know how much convulsion there was (my boyfriend was with me and confirmed that,) but I do know that I lost consciousness all of a sudden and my bladder as well. I got home, eventually felt a just a bit more normal, and went to bed.

I just woke up about 20 minutes ago with no clue what was going on, and having lost my bladder again, so I'm fairly certain I had another seizure, without any warning.

Two of these types of seizures without warning in 12 hours. I'm worried- I have no clue what's going on. What the hell do I do? Why is this going on?

Sarah

 

[Nakamova]

Is there anything at all that might have been a trigger? You mentioned your period which might be one suspect, but is there anything else like fatigue or diet? Even if you can't come up with something, write down what's happened, and contact your doctor.

 

[appsandsuch]

I honestly don't know what could have triggered these aside from my period, but even at that a) the last few periods haven't has any activity associated with activity and b) I haven't had unexplained grand mals in forever. Even if my period is a trigger, it usually triggers partials. The Carbatrol has been controlling the grand mals extremely well.

Diet-wise, I can't say that I'm extremely sensitive in that way, but I did just adjust my diet the other day in a healthy way. I don't think, after looking at food triggers, that there's anything I'm eating now that would induce a seizure. In fact, if anything, I should have been having seizures previously if food was a trigger for me.

I guess I'm just extremely bummed that my activity has disappeared completed and then I had three severe seizures within 24 hours.

I called my doc's office, but given that it's Sunday, I only got to speak to the on call doctor who isn't that familiar with my case, and I have a doctor's appt tomorrow (luckily!) so I didn't push the issue about them treating me today in any way.

Sigh. I really hate this post-ictal depression more than I thought possible. When I was younger, seizures were just an annoying part of my life, but they didn't affect me beyond the actual ictal phase itself. Once I came to, I was fine. I wish that were still the case.

 

[Nakamova]

Any chance you have an infection? That can lower seizure threshold. Or maybe there's some sort of interaction going on between your meds. I think Carbatrol is supposed to lower Vimpat's blood serum level; presumably your Vimpat dosage takes that into consideration, but it's possible that it needs to be a bit higher.

The two subsequent t-c's are probably "caused" by the first one. Do what you can to rest, and try to eat well and stay hydrated. I hope you feel better. I think the seizures we have after a stable stretch can be tougher emotionally -- just when you think things are going in the right direction, you're thrown a curveball.

 

[stilldancing_98]

Vimpat is a very different acting drug. Its purpose if you don't already know is to enhance the drugs that you are already on. It's also very picky on who it decides to who work for. Maybe 1 out of every 3. You may need to up your vimpat by 50 mlg. But you also might have to up your meds just durring your period. What are you taking for that, and what kind of siezures are you having?Because my myoclonics still are bad during my period. I think I just might get an ablation.Fix the whole thing.

 

[appsandsuch]

I'm not even sure what types of seizures I'm having anymore- I'm just not used to having them in clusters, and certainly not used to having them without aura. Stilldancing, can you tell me your success story? I could really stand to use one.

 

[Molly97]

In my experience, seizures do not "just change" out of nowhere. There's always a reason, just one I may not be fully aware of.

I encourage you not to write of dietary triggers. I'm learning more about mine all the time and I've been on the GARD for almost 2 years. In another post here I said that control in one area or type of seizure makes others more noticeable. I've found that has happened with me.

 

[stilldancing_98]

I think I have a lot of stories. From the time I was ten, my seizures changed throughout the years. Siezures spread. Mine have changed over the years by themselves by just changing meds. Then when I had brain surgery that stopped my gtcs for one year. Now, after everything else, and every medication.And a silver bullet my Dr. said we needed, We tried Vimpat with the meds I am already on. I am on Keppra,Zonigran,Lorazepam,Acetazolamide.And compared to how I was doing before. I could not stay on this computer. At least one GTC a month and myoclonics a month.Attitude helps, diet helps. My son has one kidney so eating good is not that hard.It has taken a lot of years with the same Dr. who has been through everything with me. You can do it to. Now I am in College on line. I don't pass out anymore!You can do it.I believe in you. Teresa

 

[valeriedl]

I don't know too much about having your sezure and your period. I am taking depoprovara the birth control drug that you don't have a period. I may go a few moths with out having a sezure (which is a long time for me) and if I get stressed out about something I may have 3 or so in one day.

Is there something going on that is stressing you out?

 

[appsandsuch]

I can't think of anything that stressed me out more than normal, or anything that changed other than my diet (for the better) a few days before. (I decided to stop eating junk food and eat healthier, as I wanted to lose a little weight.) However, I change my diet all the time without it affecting my seizures.

The more I think about it, the more I realize that these weren't grand mals that I had the other night, they were complex partials, but I'm not sure I've ever had one of those before, let alone two within 12 hours! I rarely lose consciousness during my seizures-even during the more severe ones, I just feel like I'm stuck in my head with a lot of ictal fear, and when I come to, there's no more confusion, no more fear- the fear has always been preictal and ictal.

This time, there was no preictal or ictal anything- just a lot of immediate postictal terror and confusion. And then days of postictal depression, a deep depression I had never felt before. Now I'm pretty sure that whatever after effects I'm dealing with now aren't postictal but side effects of the Ativan I've had to take on and off.

I'm the kind of person that always needs to know why, regardless of the situation, so I'm practically freaking out trying to figure out why this happened- why I didn't get an aura (like I always do,) why there were two of them (when i don't normally cluster with anything beyond auras,) why it was a different type of seizure than I've ever had, why it happened after so many weeks of nothingness (when, previously, I had dealt with months of aura clusters and simple partials.)

Mostly, I'm just scared out of my mind that this postictal state, that seemed to last forever, will now be a regular occurance whenever I have a seizure. When I was younger, my seizures weren't anything major to me at all- there was no pre-during-or-post ictal emotion involved, and they didn't really interrupt my life. In the last few years, fear and anxiety has become involved, making this less than pleasant, but to have more than half a week of suicidal depression is too much to deal with. It's going to make the time that I'm not seizing all that more awful because I'll be fearing seizing.

I apologize for complaining, I'm just scared and frustrated and not sure what to do. I just want to feel like myself again. And Vimpat was working so well. I was amazed- I didn't have any auras for 5 weeks...nothing. I was beginning to feel normal again. I know I was still on a starter dose, but could it be the meds that changed my seizures? That gave me that postictal depression? If that's the case, I don't think I can deal with that.

Okay I'll stop now. But thank you all for helping me and talking to me. My doctor, as technically good as she is, isn't the best for helping me mentally, if you know what I mean.

 

[Nakamova]

I agree that the "not knowing" is a huge stressor all by itself. The seizures themselves aren't always the biggest deal. But when whatever pattern you've gotten used to suddenly changes, it's feels like the very first time you had a seizure, with the same fear and confusion.

It could definitely be the Vimpat that has changed your seizures. Sometimes the body changes its reaction to meds (by building up a tolerance for instance), or the body changes (for example, hormonally) and the meds need to be altered in response. It sounds like the Vimpat may be the culprit, with the Ativan exacerbating the post-ictal depression and fatigue. Does your neurologist have an opinion on this?

 

[cjole]

I apologize for complaining, I'm just scared and frustrated and not sure what to do. I just want to feel like myself again..

I can empathize with that. Just about the time I think life is "normal" another curve ball hits me. Feel like myself again, oh what a wonderful thought that is! But, I know that my "self" has changed for forever, and now I have to learn to live with this new one.

And, once again, my job is on the line. After about 9 months of doing this job, seizure free, I had one here at work. Now, they aren't sure if things are "safe" for me here. And of course, they are worried about their liabilities as I work in an environment that could get hazardous for me, or for others. My biggest frustration is that I don't think my seizures are any worse than other peoples diabetic trips, and there are plenty of diabetics working here that no one seems the least bit concerned about. I have seen people in diabetic shock who are as completely "out of it" as I am. Except for the fact that they probably don't lose conciousness, but they are as looney or loonier than I am after a seizure. GRRRRR!!

 

[stilldancing_98]

I thought those anxiety. and then feeling depression...were just what you said anxiety. they were siezures. They fixed them. And I am so much happier.I had to go into the Dr. fast they were happening all the time.And hon your brain has changed.A lot of Dr.s think that those siezures are aniety.Teresa

 

[alivenwell]

Did you switch from brand to generic or vice versa recently? That's a hot topic for people with epilepsy.

It sounds like stress is a huge factor. This is a catch 22. The more seizures occur, the more we worry about the next one...a vicious cycle occurs.

Have you tried stress busting exercise?

 

[stilldancing_98]

I exorcise a lot. But deppression happens a lot after siezures. Either way it should be checked. And the med thing is a must!