Concerned, what should I do?

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resaebiunne

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In the past few weeks (yes, it's been that long already), I've noticed that my focal seizures have returned. For those of you who are unaware, I had a very bad generalized tonic-clonic seizure about 6 weeks ago that landed me in the hospital for about 4 days with surgery involved (on my shoulder which I broke). As a result of the hospitalization, I started seeing a local neurologist and was put on Keppra. So far I have not had any more generalized seizures, but that's where my concern comes into play. If I'm starting to have focal seizures what are the chances that the Keppra might not be doing what it is supposed to? I'm not surprised that I'm starting to have focal seizures again, as I had focal seizures even while I was on Depakote when I was younger. My concern has really nothing to do with the focal seizures. I honestly could care less. If all I had were the focal seizures I would be happy without medication. The problem is that I'm concerned about having more generalized seizures or going status epilepticus (which I've been 3 times before, having had back to back focal seizures nonstop).

The way I see it, I have a choice. I can continue as is just taking the Keppra that my neurologist has prescribed and continue living life without making another appointment. Or, I can make an appointment and let my neurologist know what is going on and that I think I'm having more seizures. I'd honestly rather not, as I don't see making more neurologist appointments as necessarily helpful. I've had these focal seizures now for almost 20 years and considering them as something that just happens. I've been able to drive and live my life normally up until now when the tonic clonics started and changed things "for the worse". Is it possible that the Keppra could keep the generalized seizures at bay while not helping the focal seizures? The best scenario is that my medication controls my seizures 100%, but somehow I'm starting to think that's not possible. Ultimately I'd just like to not have the generalized seizures and get my life back the way it was.

I know I should probably just talk to my neurologist, but I'm curious what everyone thinks about my situation. What would you do?
 
I my opinion I'd see the neuro. It could be a chance that you need the dosage of your meds changed or it's possible that the med it's self might not be working or even causing the seizures.
 
my questions after reading your post is if you know, or did they explain, why the choice was keppra? and were you asked if you were okay with that being the new drug in your system?
 
qtowngirl said:
my questions after reading your post is if you know, or did they explain, why the choice was keppra? and were you asked if you were okay with that being the new drug in your system?
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I do not know why they put me on Keppra. All I know is that this was the drug that the hospital put me on and for the first few weeks it seemed to be working 100%, so my neurologist kept me on that medication at the follow up. I was never asked if I was okay with this drug, but I never had any concerns about it either, and still don't at this point. I honestly haven't done too much research about it, though.
 
seizures aside, are you having any side effects?
 
Well I called my neurologist today and they had me speak to a nurse who asked me "what's up" (literally). I told her my concern and she said she would speak to the doctor. Well, they called back to setup an appointment (tomorrow). So we'll see what's up. I'm really hoping not to get put on any more medications or have my Keppra dosage increased because I suspect that is what will happen.
 
Just an update, if anyone cares. My neurologist increased my dosage of Keppra from 1000mg twice daily to 1500mg twice daily, which apparently is the full dose. Not sure what context "full dose" is in, but thought that was interesting. If I still have seizures, she is going to do a video EEG.

Anyone want to place bets on whether I'll have more seizures? My money goes on yes, because I had seizures while on Depakote when I was younger.
 
Yes, we do care.

Keep track of not only your seizures but also your side effects. If you have an uncontrollable urge to strangle someone right through the keyboard, it may mean you are spending too many hours on the net, or it could be the keppra. That is a pretty big bump up in the dose.
 
My neuro's receptionist is very friendly with me on the phone. I don't know if it's because I've been going to him for so long or if she's like this with everyone. But I don't think she's ever said 'What's up?'

I take more Keppra than that a day but everyone is different when it comes to meds. That might just be the max dosage he wants to put you on.

If you start to become angry very easy it could be because of the Keppra, not you. We call it Keprage.

Just because you're taking meds doesn't mean that it's going to stop your seizures. It could just reduce the amount that you are having and make them not as bad.
 
valeriedl said:
Just because you're taking meds doesn't mean that it's going to stop your seizures. It could just reduce the amount that you are having and make them not as bad.
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Control of the seizures is the goal and in this case that means stopping them [as much as is practical]. I was explained the reason for this: It was made abundantly clear to me that she (my neurologist) has too much pride to allow me to continue having seizures [while on medication under her watch]. (And this BTW, is a perfectly good explanation, as the first ER doctor didn't do anything medication-wise even after I'd had a tonic clonic seizure right in front of my own family). Anyway, I tend to agree. "Control" doesn't mean having 2-3 seizures a day (at least), even if they are minor focal seizures with no consequence. The risk has become too high that a focal seizure could lead to a general seizure, and as I know too well from the few general seizures I've had, the risk of injury is just too great, especially after I've just had surgery on my shoulder.

I fully understand the limitations of the medication and that some seizures may still happen, but 2-3 per day is too much. The increase in meds seems warranted even though it's undesirable. So far I've not experienced any particular side effects from the Keppra at the new dosage other than general tiredness, but that I can deal with.
 
Thanks Bidwell.

I realize its only been 2 days since starting the increased dose of the medication (as well as Magnesium Taurate and a week on coconut oil), but I just had 2 seizures while in the shower (not back to back). That makes three seizures today and one yesturday (that I'm aware of). Not looking good so far.
 
Yikes. That doesn't sound good at all. Are you still on any pain meds from the shoulder injury? I'm thinking there might be a reaction or cross reaction there.

I notice you are in Florida. Michael (also here on CWE) believes that electrical charges including lightning make his seizures worse.

In any case, I wish you well with the hurricane heading your way. Stay safe.
 
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The hospital gave me hydrocodone for pain but I haven't taken any recently. My shoulder hasn't really ever been in pain, even with the surgery.

One thing I've noticed is that I tend to have a seizure around lunch time every day. Not necessarily before lunch, or after lunch, but I always seem to have one around that time. I've started using "My Epilepsy Diary" on my phone to keep track of the seizures, but so far I don't really like the interface.
 
That's good that there is not another pain med in the mix and I'm glad your shoulder is healing up well.

Does your "lunchtime seizure" usually happen before you get a chance to eat? I'm wondering if there could be some blood sugar issues going on there. Have you had an HBA1C test done lately?

Anything else particular to lunchtime? Do you go outside? It's pretty hot in your neck of the woods this time of year. Some people find heat triggers seizures or changing from extreme heat to cold or vice versa. That could also be related to the shower seizures.
 
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I don't think my seizures have any particular triggers. After nearly 20 years I would've figured it out by now if there was one. Blood sugar, temperature, it just doesn't make any sense. The only thing I can think that might've caused the seizures I had in the shower was the bag of munchies that I ate for dinner. Yes, not very healthy, but there's not much food in my apartment at the moment.
 
Well, you say your seizures have changed type and you have also had some med changes, right? Perhaps triggers can change too.

What kind of "munchies" are we talking about here? If it's anything salty that could have MSG in it, that could do it. MSG hides under lot of sneaky labels such as "natural flavorings".

Sounds like you need a trip to the store for some real food. :) (I know, I'm sounding like your Mom. I'll stop now.)
 
Well, I'm up to 5 seizures today. I had three this morning while I was lying in bed, and two while I was out just now to have dinner and a cigar.

The last seizure I had got me thinking. I'm not sure if this counts as a trigger, but often I have noticed that when someone approaches me to talk to me, I'll have a seizure right when they start talking. Case in point, when the bartender approached me to ask if I wanted another drink, I immediately had a seizure right when she started talking. This has happened to me countless times. It even happens if I'm already talking to someone and engaged in the conversation. Right when the other person starts talking I'll just have a seizure. Fortunately since they appear to be simple partial seizures, I'm aware of what the other person said so I don't miss any of the conversation even though it takes me a second to react.

Well, make that 6 seizures (at least) since I just had one.

I'm not surprised at all that I've had so many seizures today, since I slept most of the day and took my meds and supplements late. This is the usual scenario for me on the weekends, since I like to sleep in very late.

Anyway, I wouldn't say my seizures have changed type per say. I have a very typical focal seizure that has been the same since I started having seizures. When I've gone status epilepticus, it is the same focal seizure back to back over and over again. What has changed is the recent generalized tonic clonic seizures that I've had. Up until recently I've never had a tonic clonic seizure before. This is the change that concerns me, and concerns me more with each seizure I have.

I really am concerned that if the Keppra isn't doing it's job that I'll have another generalized seizure and wind up in the hospital again. My shoulder is healing but if I have another tonic clonic seizure it'll probably mean another surgery to put my arm back in place.
 
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