Another new kid in town just needing some feedback

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

EDBRAD

New
Messages
41
Reaction score
0
Points
0

Hey folks
I been hanging around here for several months, kinda lurking in the back of the room - somehow that don't sound quite right, lets just say ive been doing a lot of reading and no posting. There that sounds a little better maybe.
Ive had seizures since '92 or '93, started out just complex partials, was completely controlled with various medications up until about 10 yrs ago - started having simple partials for a period of 2-3 days about every 4-5 wks.My little time of the month, my wife called it.I would have my aura, a very strong deja vu feeling rooted in depression and extreme confusion, then a feeling like a strong surge of electricity running thru my whole body, in all lasting about 2-4 min. and usually leaving me with that feeling of confusion and generally just a real bad case of the stupids.
I have been on 3750 mgs Keppra & 200 mg zonisamide for a while now and all of a sudden seizures started changing & coming more frequent. No aura for a while, then aura is back & no surge. Now I have my spell about every 8-10 days. My neurologist had me do a new EEG & MRI & sleep study- didnt find any rat nests or tumbleweeds up in there. Just a wide open expanse of prairie from ear to shining ear.
Now I am being ramped down on the zonisamide and up on Aptiom. Anybody have any experience with this stuff?
So now I start having these spells of my aura trying to start but lasting only 1-2 seconds and being nipped in the bud. Short enough to where the surge never happens yet just long enough to plant that seed of extreme confusion. The 2 days I had these I was having dozens of them per day some as many as 2-4 per minute. Those have tapered off to having only a few per day and the level of confusion not being near as bad.
I guess I have kinda rambled on a bit, but just wondering if anybody has experienced anything similar.
Nakamova, I am extremely interested in hearing more about your blips as you call them.
I really feel like Ive hit the mother lode in finding this site. So many good folks and so much great information. Its hard to process all this on a keppra-addled brain.
Thanks so much in advance
Ed
 
Hi and welcome to CWE!
I haven't been on aptiom, nor have I had the type of of seizure symptoms you are having, however I can relate to that sensation of an aura or seizure "almost happening" and then the sensation going away without progressing to something worse. In some ways this could be indicating the medication is not at a high enough level (yet), so I would suggest keeping track of these if you aren't already so you can give your neurologist an idea of how often you have these "almost" sensations with progression to a seizure and how often the sensations do not progress. This might give your doctor an idea as to whether the dose should be increased or that a new medication should be considered.
 
Hi everyone! I'm not a newbie. I lost touch with the site. Got busy. I'm glad to be back.
 
Hi Ed and welcome!
You're right about this being a wonderful place with lots of good people and great information. I've had a lot of simple partials, among other things, but that's what I seem to have the most. I can't understand what is said and I can't speak except gibberish, and they are usually short lived. I'm on Keppra XR after being controlled on Dilantin for centuries.
Keppra XR didn't control me completely and they'd added several different meds, one at a time, and it hasn't done anything but give me more side effects. I'm hoping to just go back on Keppra and eliminate all this other stuff.
It sounds like your "blips" happen a lot more than mine. Mine seem to come in clusters and I may go days without having one. One thing I've noticed is our seizures have many similarities but are very individualized as well.
Best of luck and welcome!

Cindy
 
Hi Ed, welcome (officially) to CWE!

Below are some links (if you haven't already seen them) to CWE threads about Aptiom/Zebinix (Zebinix is another of its trade names):
http://www.coping-with-epilepsy.com/forums/f20/updates-about-aptiom-25308/
http://www.coping-with-epilepsy.com/forums/f23/aptiom-24382/
http://www.coping-with-epilepsy.com/forums/f23/life-after-work-new-meds-update-
http://www.coping-with-epilepsy.com/forums/f23/zebinix-22009/

It can be tougher when you are on more than one med to figure out what is doing what. Some meds are better for partials than for generalized seizures, and vice versa. Some folks have even found that an AED increases their seizures. They all work in slightly different ways.

Aptiom (like Lamictal and Dilantin) works on the brain's sodium ion channels. My understanding is that the way they work is analogous to dampening an area around a potential fire so that the fire won't spread. So it's possible that you are experiencing the start of the "fire", and then the abrupt "halting" of that spread.

Keppra is believed to target the calcium ion channels. Other meds target the GABA system and receptor agonists and/or glutamate receptor antagonists. (In other words, they work to inhibit the "excitatory" neurotansmitters, or to excite the "inhibitory" neurotransmitters. None of them are fully understood...

As far as my "blips" go: I believe that they are very brief generalized "breakthrough" seizures. If I have one while in the middle of a conversation, I lose my train of thought -- but I can "fake it" by calling it a senior moment. I definitely know when one has occurred. My neurologists take them as a sign that my medication dose needs to be increased, and that tends to do the trick. Aside from the blips, I've only ever had full-on tonic-conics, no auras/partials beforehand.
 
Last edited:
Thanks everybody for the feedback & valuable info.
Cawhitern I too was on dilantin-first AED, on it for 6-8 yrs. It did control the seizures but turned me into a blithering idiot. I don't think my brain ever recovered from that. So you have something similiar to these little blips too?
Nakamova, I really appreciate your response. After reading about your "blips" in another thread, I had to know more. Senior moments are more the norm than the exception for me and I know what you mean about losing your train of thought. I think mine left the station and jumped the tracks a long time ago
So far the keppra has been pretty good to me, not to say it does not have its own set of side effects but I guess that all comes as a package deal no matter what seizure drug you are on. I dont know what I would do with a good memory if I had one- probably just abuse it by trying to think or read or some other such silliness.
Thanks again. You folks are great
Ed
 
Welcome to CWE EDBRAD.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

My first medicine was Dilantin, too. I was only 6 years old. Then I got Steven-Johnson's Syndrome from it.

I have no problems with Keppra, Lamictal, clonozapam, Gabapentin (Neurontin) and primidone. One of my meds is causing me to have kidney problems. My neurologist told me that it is either Keppra or Gabapentin. She is tapering me off of Gabapentin first.

I am 72 years old now. :cheers:
 
Welcome to CWE EDBRAD.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

My first medicine was Dilantin, too. I was only 6 years old. Then I got Steven-Johnson's Syndrome from it.

I have no problems with Keppra, Lamictal, clonozapam, Gabapentin (Neurontin) and primidone. One of my meds is causing me to have kidney problems. My neurologist told me that it is either Keppra or Gabapentin. She is tapering me off of Gabapentin first.

I am 72 years old now. :cheers:
You say having kidney problems my doc just told me the same I wondering if the lam 250 twice a day could be doing it
 
seagull, my neurologist said it is not the lamictal. I will check later on anyway on the internet. Maybe, it's all of our medicines? We are going to have rain tonight. Our electricity already went out today.

So, I will get back to you tomorrow. Thank you for telling me.
 
seagull, this is today. I have the information. Either my neurologist does not know it or does not want to tell me.

I chose this article because they have Personalized Health Information. How we can help ourselves.

http://www.ehealthme.com/ds/lamictal/kidney+stones

Personalized Health Information

1. Diet for kidney stones
2. Kidney stone prevention
3. Kidney stone Remedy
4. Kidney stone causes
5. Kidney stone symptom

On Oct. 26, 2015: 37,663 people reported to have side effects when taking Lamictal, among them 71 people (0.19%) have kidney stones.

That is a small amount but if you are in the few people who have it, that is too many.
 
EDBRAD, the "blips" that Nakamova described sound very similar to the ones I had when I was on Dilantin. I still have them but they are slightly different, mostly because they now last longer. Sometimes they are pretty intense and other times they aren't. You're exactly right about how each med has its own set of side effects, and Nakamova is right on with the comment about how difficult it is to zero in on which med is causing which symptom or symptoms when you're taking more than one medication.
It's certainly frustrating.
 
Thanks for all the welcomes everybody. I always liked your special welcome, Ruth, it all feels official now. Just appreciate everybody here taking time to offer up some sorely needed advice.
Settleing in for a big thanksgiving with family and planning on eating way too much, since there aint no calories on Thanksgiving. Then a nice long turkey-induced coma. ahhhh Its the little things.
Yall have a great Thanksgiving
Ed
 
Back
Top Bottom