Cluster Seizures

[Shelley3297]

So i had cluster seizures yesterday for the 3rd time I believe, but it was the first time i recognized these new-to-me seizures, and actually used my rescue med (clonazepam). Several questions for the community here, as i have found you all to be so knowledgeable about so much. Mine were very short in duration, focal aware, but definitely followed a pattern that i was able to see from my health journal. I know the half life of clonazepam can be up to 50 hrs, but is anyone else wrecked for an entire day following the use of this recue med, like I am? Do you find that the recue med completely stops the seizure activity, or does it just dull the feelings some? I feel today at times, like i have had a few of my warnings but they don't seem to grow into anything more. Also, have any of you found that your cluster seizures grow more frequent in occurrence? The first two times I had these, they were a month apart, now this third time, it was only 2 weeks since the last episode. I should also mention that i just weaned off one med, and have increased the dosage on another med, could this be contributing to the increase in frequency?

 

[Sabbo]

Hello. Changing meds can affect your seizure frequency until you reach the clinical blood level of the medication you're switching to.
I have simple & complex partial seizures & have used nearly every AED out there that I can. I currently take 400mg each of Topiramate & Zonisamide, but still average 1-3 breakthrough seizures per month. I also keep a record of all of my seizures--which type they were, when they occurred, how long they lasted, & what happened during them. For the complex partials, I need to rely on witnesses, because I don't get any aura, & unless I injure myself or do something to my surroundings, I don't even know that I've had one.

 

[Porkette]

Hi Shelley,

Every month I had 1-2 days of cluster seizures and it was all related to my hormones changing. I would have the cluster
seizures the first and the 3rd week of each month and I would have 8-10 seizures a day. Then I started eating peanuts
or almonds and that helped a lot because they have progesterone oil in them which helps calm the nerves.

I later found out that I was having "seasonal seizures" which means I would have more seizures in the fall and winter
compared to the spring and summer and that was due to the lack of serotonin in the winter months. My Epileptologist
told me all about this.

Also take note what the weather is like because sometimes a low pressure in the weather can affect some people
and it will trigger seizures for the person. As long as you are keeping track of your seizures and the time they happen
you will see a pattern in them and so will your Dr. and that will be a big help to the both of you.

Wishing You the Best of Luck and May God Bless You,

Sue

 

[Shelley3297]

My current neurologist says "episodes as described could be consistent with focal seizures, but i am not yet certain of that" he wants to up my keppra yet again, from 1500/day to 2000/day, and monitor the event frequency until next appt (Feb 22), or i could start taking .5 of the clonazepam daily. He said it's my choice. I said no to the clonazepam, cause it took me out for a full day and a half. I def cant do that again unless its absolutely needed. I am going to add the weather to my journal, as i think there was a low pressure thingy this last weekend. Right now, i am just drained with it all, I am at an all time low, so just responding here to keep my mind active and stay engaged as i cant seem to do much else. i tried to make an appt for a second opinion with another neurologist, but i need a referral to do so. Just keep swimming.....actually i am just treading water at this point, but i am still afloat for now. Does Keppra mess with a person's mind at all, or is this just the stress of our lovely disease?

 

[Nakamova]

Keppra can affect mood -- not just anger ("kepprage") but also depression. Definitely keep track of how you are feeling and reach out to any of your docs if your mood gets worse. Being knocked out by seizures and/or meds can also make you feel lousy, so be gentle with yourself. And reward yourself for putting up with it! If there's something that makes you happy (rocking out to a favorite song, emailing a friend, ice cream, whatever) go ahead and treat yourself.

I hope you feel better soon.

 

[Porkette]

Hi Shelley,

I know when I was on Keppra I was wiped out and I was taking 500 mg. a day but then I saw an increase in the seizures not to
mention I got a hot temper to the point I couldn't stand it so I went off the drug and started taking vimpat instead and that has
helped me a lot.
In regards to keeping your journal be sure you do it on a calendar and make up your own little key for everything. Ex.

A- Absence seizure, CP- Complex Partial seizure, TC -Tonic Clonic seizure and so on. When there's a Low Pressure in
the weather -LP and then write down if it's rain or snow, I also write down when I'm sick because if I take any over the counter
meds it sometimes throws off my seizure meds. Also write down when your are more tired and stressed out and when you
start and stop your monthly cycle.

When you do find another neuro ask them to do a DNA test on you to find what's the best seizure med for you with the
least side effects.

Wishing You Only The Best and May God Bless You,

Sue

 

[Shelley3297]

I feel much better today (at least right now in this moment), thanks for all the suggestions and words of comfort, it helps ALOT!.
Nokamova, i plan on doing something for me tonight, and it is so important! I also was able to get my PC doc to put in a referral to the new neuro i want to try, so that made my day.
Porkette, i do use a calendar, but i like the key idea....i was using a key of sorts, but it wasn't that specific and i was unsure how to define the different types of seizures i think i was experiencing, this will work for me, and i plan to update tonight with stuff still fresh in my mind and using all my long-hand notes. And my first question to the 2nd opinion doc (if I like him, he may become my new neurologist) will be for the DNA testing. The more i read about this suggestion you have mentioned before, the more i am seeing that it is the way to go. Not only for the med targeting, but also to try to better understand my form of the disease. I have little to no family history available to me, so i have no way of knowing if this is something that i could potentially pass on (even just some of the gene types) to my sons. My youngest son is very worried, and like me, wants to know everything he can about it.
I have indeed felt the Keppra rage, but because of all the folks here, and my reading (I read alot!), i was able to recognize it for what it was. It doesn't always help to calm it, but it certainly puts it into perspective. I did not know that keppra could aggravate depression, just the knowledge helps some, but i am also now noting this in my journal. Thanks All!