I am a newbie to this. I need answers if you have them.

Peggy

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I am so happy to have found a group of people who are so knowledgeable about seizures. I was just diagnosed this past April with seizures. I am 67 years old and have had seizures for the past 40 years but until recently they were few and far between so I never went to a doctor until now. When I explained my history to him he is the one who informed me that what I thought were anxiety attacks were actually seizures. I like my doctor and he has put me on Keppra starting with a low dose that has now grown to 1500 in the am and pm. I was having too many side effects at that dose so we decided that I could decrease to 1250 in the am and pm. I am on day 4 of decreasing. I am having some small seizures in the mornings. I want to ask if that is normal? To be honest, I would rather deal with small seizures than the depression and irritability that I was having at the higher dose. Can anyone tell me how to know if a medication should be changed? And do all the seizure medications act the same? I was told I have focal seizures which, after reading some of your stories I feel blessed. I have been praying for those of you who have had such a hard life with this terrible condition. My focal seizures make me weird but I am aware the entire time. My eyes get spacy and I can't talk so I space out and stay still until it passes. I have had only 3 seizures in the 40 years that have made me fall and be really weird. I read about a VNS. At what point would someone choose that? If no medication worked?
Thank you for your time and tolerance in reading this. I am just so naive about this. The last few months have been hell. Trying to find which medication (I have only tried one) and at what dose I can tolerate. This could easily take years. Am I right?

Thank you for any insight you can give me. I truly appreciate it,

Peggy
 

CQ:)

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Hi Peggy
Welcome, I believe it must be hard to be diagnosed at an older age and I understand you must have so many questions.
I personally don’t give too much medical advice, just share my experiences with epilepsy but what I will say is if you are uncomfortable with a medication don’t be afraid to speak to your neurologist in regards to trying something else.

Everyone is different, some may find the right medication combination to help control their seizures, others will have to try a combination of medications and sometimes try other options whether it be surgeries, medical marijuana or diets.

For me I’ve had it since I was 9 months old but it’s been a bit of a roller coaster 😉. I think I have my full history of my epilepsy in my bio. I currently have partial seizures (focal), mainly complex partials where I space out and don’t remember or might do odd things.

if you have any questions or not sure, feel free to ask I’ll do my best to answer. You can also send me a private message
 

CathyAnn31

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Hi Peggy, welcome to CWE! You're at the right place. I'm not much help as far as meds go, I was put on Lamotrigine and it's worked well and I've never had to change.
 

Sabbo

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Hello & welcome to CWE. I recall complaining of "weird feelings in my head" since I was around 5--nobody could understand what they were.
After I had some tonic-clonic seizures at the age of 14, I had one of the feelings during an EEG. That is when they diagnosed all those "feelings" as simple partial seizures! A little over 20 years ago, I began having complex partials as well. Those have been extremely troublesome & dangerous for me.
What's annoying is that I've tried all the medications out there for these types of seizures, & the ones that I'm not allergic to seem to work for a short time. Then I begin getting breakthrough seizures again, averaging 1-3/month. I'm currently taking 400mg/day each of Topiramate & Zonegran.
 

Nakamova

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Hi Peggy, welcome!

Each person reacts differently to seizure meds, so there is no "normal" reaction. If you are having questions about meds and treatment options it's a good idea to chat with your neurologist. That said, I know it can sometimes be hard to get appointments and answers from a doctor, so hopefully CWE members can help fill in some of the blanks. :)

Keppra is well-known to cause mood-related side effects (called Kepprage), so it's not for everyone. It has a short half-life, which means that you can get up to a working dose very quickly (which is nice), but that also means it exits your body quickly as well -- so changing the dosage can have rapid results (such as reducing side effects and/or lowering seizure control, as you've experienced).

There are lots of different seizure meds out there, they don't all act the same, and they affect different individuals differently. The goal is to find one that maintains seizure control while minimizing your side effects. It can often take trying one more drug to find what works best. Quality of life is key -- but each person measures that differently.

Usually something like VNS (a pacemaker-like implant) when meds don't seem to help, or help enough. As with meds there are pros and cons, and there are no guarantees. My guess is that it's probably too soon for you to look into something like that.

Best,
Nakamova
 

CQ:)

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Keppra is well-known to cause mood-related side effects (called Kepprage), so it's not for everyone. It has a short half-life, which means that you can get up to a working dose very quickly (which is nice), but that also means it exits your body quickly as well -- so changing the dosage can have rapid results (such as reducing side effects and/or lowering seizure control, as you've experienced).
Thanks Nak
I’ve been on Keppra since 2008 and apart from the Keprrarage I didn’t know some of that info 😉.

When my original neuro put me on Keppra he was very quick to get me up to a high dose to 1500mg AM/PM.
Thankfully no issues with Kepprarage or any other known side so I call myself one of the lucky ones.

When I had my pre surgery Video eeg in 2010 the epiologist in the city lowered my Keppra from 1500mg AM /PM to 1000 AM / PM and they haven’t touched it since.
 

Sabbo

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I keep track of all my seizures in a notebook. I record the time they occurred, and how long they lasted--easy to do for my simple partials. With the help of any witnesses, I also note what I did to myself/my surroundings during complex partials. I take the notebook with me to all of my neurologist appointments. I haven't noted any pattern to either type of my seizures.
 

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Hi Peggy, welcome to CWE.

There was a preliminary study done in 2008 that seemed to indicate that taking a vitamin B6 supplement helped mitigate the Kepprage (moody side effect) from taking Keppra. See here:


I don't know if there was ever a more comprehensive study done, but in the years since, folks who have heard about it word of mouth and tried it have reported (in forums like this one) that it helped. You might try taking a small amount (50mg/day was the low end dosage used in the study) and see if it helps.
 

Peggy

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I can't thank you all enough for your thoughts and experience with different meds, etc. I will try Vitamin B-6 and see if it helps.
Does anyone know anything about Gaba helping? It was suggested by someone but I have never heard of it. After researching it a little is seems to be a supplement that calms the nerves. If anyone knows anything about it please let me know.
Also, do any of you drive? When first diagnosed in April my doctor told me that I shouldn't drive until 6 months after my last seizure. Well, that would be today because I have not had too many days completely free of a seizure. Any hope I will get to drive again? It's difficult to change my life all-around at my age. I told my husband we may have to move to a house in town so I can walk to places and feel connected. This seems to be a lonely illness so far.
God Bless you all,
Peggy
 

valeriedl

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I'm on Keppra and I had serious kepprage. I started taking B6 and it's helped a lot. I do still have some kepprage but it's nothing like before I started taking it.

I have a VNS. I was diagnosed with epilepsy in 2003. I was having a ton of seizures, to many to count and meds really weren't working well. In 2007 my neuro suggested a VNS. The VNS worked great, I am still having seizures but not nearly as many and they aren't nearly as bad. I still ended up having to take meds with it and it took some time to figure out what meds/dosages and settings on the VNS worked well together. We still adjust the VNS and meds from time to time depending on how many seizures I am having. I've been able to lower the dosages of my meds and stop taking some of them because of the VNS. I'm on my second VNS, I had to have a new one put in 2013 because the battery died on the first. A new battery can't be put in a VNS, a whole new VNS has to be put in.

I don't drive, I had to stop when I started having seizures. I live in the country and there's no bus service here so I have to rely on others to take me places, it's very frustrating. Different states have different time periods before you have to be seizure free before you can start driving again. Also your neuo has to approve that it is ok for you to drive.

Things can be hard to deal with when you have epilepsy. Ask as many questions and I hope we can help.
 

Nakamova

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I can't thank you all enough for your thoughts and experience with different meds, etc. I will try Vitamin B-6 and see if it helps.
Does anyone know anything about Gaba helping? It was suggested by someone but I have never heard of it. After researching it a little is seems to be a supplement that calms the nerves. If anyone knows anything about it please let me know.
Also, do any of you drive? When first diagnosed in April my doctor told me that I shouldn't drive until 6 months after my last seizure. Well, that would be today because I have not had too many days completely free of a seizure. Any hope I will get to drive again? It's difficult to change my life all-around at my age. I told my husband we may have to move to a house in town so I can walk to places and feel connected. This seems to be a lonely illness so far.
God Bless you all,
Peggy
You might want to check out this older CWE post about GABA:

I drive -- I'm fortunate that my seizures are fully-controlled at this time. But when I wasn't sure if that would happen, I moved to a neighborhood where lots of things are in walking distance. I hope you can find the right resources to stay connected with others. You might look into social groups that do walks or hikes.
 

CQ:)

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Also, do any of you drive? When first diagnosed in April my doctor told me that I shouldn't drive until 6 months after my last seizure. Well, that would be today because I have not had too many days completely free of a seizure. Any hope I will get to drive again?
I personally don’t drive but that’s more out of choice then the epilepsy as I’ve never been interested in driving.
I live close to shops and public transports so walk everywhere, my work takes me 50 mins to walk so I get the bus to work (the bus stops are right near my home and right in front of work) and walk home. If the weathers nice or I finish on time I walk, other wise I get taxi home.

As I mentioned earlier my seizures started when I was 9 months but I had tonic clonics until I was 3 1/2 then 21 years seizure free until the seizures returned in 2002 when I was 24. So when they returned my neurologist said no driving , I can’t remember how long but it was a while and I wasn’t able to have any seizures including simple/ partial.

Then I had my surgery in 2011 and was 2 years, I could’ve got my licence during that time but had no interest. Then the seizures returned but wasn’t confirmed until they did a video eeg and again told no driving which I was fine with.

I’m in Australia so I’m sure the rules are different for every country , area.
 

Porkette

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Hi Peggy,

Welcome to CWE! Everyone here has been a great help to me and I've learned a lot from others.
This is the best forum I've been on to get help and to learn about epilepsy.
Wishing You Only the Best and May God Bless You!

Sue
 

Plasticmask

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Also, do any of you drive? When first diagnosed in April my doctor told me that I shouldn't drive until 6 months after my last seizure. Well, that would be today because I have not had too many days completely free of a seizure. Any hope I will get to drive again? It's difficult to change my life all-around at my age. I told my husband we may have to move to a house in town so I can walk to places and feel connected. This seems to be a lonely illness so far.
Hello Mrs. Peggy, Welcome! I just saw this, wanted to put in my opinion for what it's worth at least:
I voluntarily stopped driving years ago and will never drive again. In my State, I don't even know if it's a year or six months or how long after a seizure it's 'legal' to drive but I feel that we are epileptic and therefore are a MORTAL danger to ourselves and everyone with whom we are sharing the road, be it in a car, on a motorcycle or even a bicycle. All it would take is a few seconds of blanking out (or any other manner of seizure activity) and that would be that. Boom. SOMEONE might die. I can't bear that responsibility, that guilt if I'm not the one who dies or gets injured, I don't want to be "that old man".
YOU know, for instance: "You see that house? 'That old man' lives there. YOU know, the one who had a seizure in his car last year, the car went over the curb and killed the little girl who was playing in her yard in THAT house over THERE. Yeah, I KNOW. I think he should be in prison too, but he's not."
Not me. I couldn't take it. Couldn't handle it. I'd probably top myself. Truth.
We actually donated my car to a local charity FOR the disabled; they do what they can to fix them up, sell them, and use the money accordingly.
There is no public transportation system in my area either. I don't care. Just because a handful of months (or even YEARS) have gone by does not mean that I'm not epileptic any longer, nor does it mean that I'm out of danger of having another episode at ANY given time.
Again, this is my opinion, not meaning to push it onto anyone else. Just the way that I feel about the "driving" thing.
 
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