Myoclonics: How many, how often, do you have?

[lindsayschu2]

For those of you who have myoclonic seizures, have you gone through periods where you have them all day, multiple days on end? I need to decide what to do--at my last neuro appt, we decided I would stay the course with my base meds and treat my current increase in seizures due to illness/electrolyte imbalance with clonazepam, but I can't go around on clonazepam all day and I'm having some degree of seizures all day now (sometimes just face or hand, to absences followed by much more major full body convulsive myos that need to be stopped by clonazepam in the eve and that continue off and on all night anyway). She left it open to me to increase Keppra if I feel I need to but that's a long-term decision what may be a short term problem. Electrolytes are normal now so not sure why this continues. It's a pretty severe short term problem though, I've never in my life seized like this and I'd really like to hear from others if they have had some degree of myos all day and not stressed it too much. Sorry to lean so much on everyone, not sure where to turn since the decision is really on me right now and I'm scared. Ive never even had absences before, much less clonazepam resistance myos or face and hand ones. I'll be talking to my GP again tomorrow to see if we should reassess just what my stomach virus was that may have caused this kind of reaction. Any thoughts hugely appreciated.

 

[masterjen]

I am very susceptible to a significant illness making my seizures (tonics and myoclonics) worse as well, and once was sick enough that the medications had to be increased and they never were able to be put back to their previous levels.

As for the myoclonics, at times I have had them off and on throughout the entire night and in the day as well. Fairly low dose Keppra (500 mg AM and 1000 mg PM) almost completely controlled the daytime ones, and substantially improved the night ones. Now I get no more than 3 incidents of jumps in the night, and at that only a tolerable few of times a month. I'm more than willing to put up with this, since no side effects at this keppra dose. Also, I found lamictal worsened the myoclonics for me, and so did going beyond a certain level of tegretol.

 

[lindsayschu2]

Thanks so much Jen, seriously, amazingly helpful. I'm only on 1000 keppra right now, and 200 topamax, which we are beginning to think further challenge my electrolytes on a regular basis so have a longer term plan of weaning that down. I also can't do lamictal or tegretol (or especially gabapentin) since they all add to myoclonics. I think I will add 500 keppra today--I was too afraid to do it last night because i had to take a good dose of clonazepam to stop an absence/myo and was afraid upping keppra and that big dose would be too sedating in one night. I'll try adding 500 keppra midday to spread it out. Your story is similar to mine and just what I needed. I'd add a hug icon but have never been able to figure out how

 

[masterjen]

Good luck, and let me know if you also have better control on slightly higher Keppra. I also am susceptible to medication side effects, so when I was starting on (and then increasing) Keppra at added 250 mg at a time every 5 days.