New to Forum

[kSQ]

I had my first seizure just before Thanksgiving of 2021. I've had 8 more since then. Nothing over the last month. I'm on 1500 mg Keppra daily plus CBD as needed. Since maybe my 3rd seizure I've been reading various threads here to gain knowledge and get a feel for how people deal with their epilepsy, etc. After my first seizure (tonic-clonic and loss of consciousness), at the ER I had a CT and 2 MRI scans of my brain (one with a dye)--reportedly no tumor, scarring, etc. that might have caused the seizure. I had an EEG soon after my 2nd seizure. It was "normal." I understand that isn't unusual. A few comments:

1) I have found the various threads in the forum quite interesting and it's been nice to see the mutual support provided by participants. I've also checked out some of the music identified in one of the threads and found a couple good songs I hadn't heard before. Thanks for that.

2) There is a fair amount of discussion about different anti-seizure medications or combos of medications. Am I correct in saying that much of dealing with seizures is about getting the right drugs to "control" your seizures? What do you consider "in control?" Is it all about the frequency and severity of the seizures? How long without a seizure is long enough to feel in control? Does anyone ever really feel in control? Anything else involved that evokes control versus out-of-control?

3) In researching the drugs identified. I find that there are several anti-seizure drugs that identify side-effects that include seizures and/or depression. It doesn't seem odd to me that anyone with epilepsy would be prone to depression. I've been depressed off and on ever since my first seizure this past November. It does seems odd to me to include as a side effect the illness your trying to bring under control. Is it really a drug side effect or more of a breakthrough seizure? Can those be the same?

Anyway, I guess this is my way of saying hello.

KSQ

 

[Porkette]

Hi KSQ,
Welcome to the forum! Everyone here has been very helpful to me and I've learned a lot even though I've had epilepsy for 50 yrs.
I've had 2 brain surgeries to help reduce my seizures and I have found out that I'm drug resistant by having a DNA test done.
If you get a DNA test done it will show your body chemistry and the amount of enzymes in your liver and then the Dr. can match
all of that up to the best seizure med for you with the least side effect. Just like you I use cbd oil and I have found that has helped
me very much.

What I consider control for my seizures is when I have at the most 2-4 seizures in a month but I have absence and complex partial
seizures and they happen more frequently. Before surgery I would have at least 20 seizures a month and that in turn caused more
brain damage. The longest I've gone without a seizure is a little over a month because hormones changing each month have a lot
to do with my seizures. The 2 main things that trigger seizures for me is stress and lack of sleep. Also if I'm sick with a cold or stomach
bug and then take an over-the-counter med to help me that triggers seizures for me. A few yrs. ago my Dr. realized I was having
"Seasonal seizures" which means a person has more seizures at certain times of the yr. and that can sometimes happen. I have more
seizures in the fall and winter due to the lack of serotonin that time of the yr.

As far as feeling depressed sometimes this can happen and it's do to the epilepsy and the medication a person takes. I have found
taking vitamin B12 1000 mcg. once a day has also helped me but as crazy as it may sound I started taking 2 Tablespoons of apple
cider vinegar with mother in it to lose weight and as time went on I noticed I was having fewer seizures. I found out that the mother
which is a protein and a good antibiotic reduces the amount of carbs and starches in my body and that helps reduce my seizures.

If you have a calendar at home write down what time you had a seizure and the type of seizure. Also take note if you were sick
or taking a new med. By doing this your Dr. may see a pattern in your seizures as to what time of day/night they happen and
what day's of the month.

I wish you the best of luck and May God Bless You,

Sue

 

[kSQ]

Thank you for all the good information, Sue. I have utilized apple cider vinegar before for fighting allergies, etc. I will start using it more regularly. It's funny how some of the old remedies used by our parents and grandparents are still applicable--sometimes healthier (fewer side effects) than the drugs of today.

Since the seizures started I've had to use a cane much of the time. Balance issues are known side effect of Keppra so I'm unsure if my sudden lack of balance is from the epilepsy/seizure disorder or from Keppra (the seizures begin in my feet and calves, then usually generalize). I've got a new neurologist I'm going to see in a couple weeks. The first one wasn't really interested--a referral from the ER. Doctors are like people in any other profession. Some care about helping their clients; for others it's about generating cash. My experience with the first neurologist reminded me of a fencing contractor I hired through Home Depot.

Almost daily I think about how I was back in October, and get depressed. Then I read about folks like you who have had seizures for most/all of their lives, and then I feel like a wimp and/or a whiner. I've always endured/fought through health issues. About 12 years ago, I had stage 3 lymphoma--which responded well to chemo. Then about two years later I had a triple bypass. Ironically, I've always stayed in good shape and never smoked. I'm headed back to gym this week (I think) to start working out again. I'll go slow at first and not push any weights over my head--a bad time for a seizure. I'll take my cane.

Thanks again.

 

[Nakamova]

Hi KSQ, welcome [officially] to CWE!

2) There is a fair amount of discussion about different anti-seizure medications or combos of medications. Am I correct in saying that much of dealing with seizures is about getting the right drugs to "control" your seizures? What do you consider "in control?" Is it all about the frequency and severity of the seizures? How long without a seizure is long enough to feel in control? Does anyone ever really feel in control? Anything else involved that evokes control versus out-of-control?

3) In researching the drugs identified. I find that there are several anti-seizure drugs that identify side-effects that include seizures and/or depression. It doesn't seem odd to me that anyone with epilepsy would be prone to depression. I've been depressed off and on ever since my first seizure this past November. It does seems odd to me to include as a side effect the illness your trying to bring under control. Is it really a drug side effect or more of a breakthrough seizure? Can those be the same?

Anyway, I guess this is my way of saying hello.

KSQ

I've been lucky enough to get my seizures under control with medication -- no tonic-clonic seizures for over a decade, and after that, one or two mild partials that were fixed by upping my medication dose. I do feel in control -- I don't worry about living alone, or swimming, or driving. I am still vigilant about taking my meds, of course.

Regarding side effects: I think that whenever you have a drug powerful enough to cross the blood-brain barrier, you can get unexpected side effects, especially because reactions are so idiosyncratic. That and the fact that scientists still don't completely understand how they work! In addition, there are many different kinds of "epilepsies" and the drugs don't effect them in consistent ways. With anti-seizure drugs, that means they can cause seizures, especially of course if you stop taking them abruptly or miss a dose (in which case it IS more of a breakthrough seizure), but also if your dose is too high, or if your brain just...doesn't like the med.

Depression can be situational (epilepsy's a bummer) or neurochemical (seizures can happen in the "mood-related" parts of the brain), and it can be correlating (reflecting underlying brain chemistry that causes both issues). And it can be a med side effect, because brain meds can mess with neurotransmitters in unpredictable ways. Many anti-depressants come with a suicide warning (WTF!), for that reason. And anti-seizure meds (some of which, like lamotrigine are also used for bipolar disorder), can affect the neurotransmitter balance. Unfortunately, epilepsy research isn't at the point where they can predict which meds/doses/combos will do what. A lot of meds work like humongous hammers for tiny nails...

 

[Sabbo]

Hello & welcome to the site. I have simple and complex partial seizures. I had 3 or 4 tonic-clonics in 1987, but none since. I am taking Topiramate and Zonisamide--400mg/day each. I still average 1-3 breakthrough seizures per month. For me, that seems to be the best control I can get. I've tried every AED out there for the types of seizures that I get. Those that I wasn't allergic to would work for a while, then the breakthroughs would begin again.

 

[valeriedl]

It's nice to meet you kSQ!

This forum is great and you do get a ton of support. You can talk to people about epilepsy and seizures and they know what you are talking about and can relate to it. You don't have to try to explain things it to someone without epilepsy and try to have them understand what you are talking about, which is pretty much impossible.

With me I consider in control is the number of seizures I have a month and what type of seizures they are. At first I, 19 years ago when I was diagnosed with epilepsy, was having around 1 seizure a day. They were mostly focal seizures, complex and simple, and they'd last a long time and I'd have horrible migraines after. Now I'm having on average 3 seizures a month. They are still focal seizures, mostly complex right now, but they don't last as long and I'm not getting headaches. I still don't consider myself as having my seizures under control.

Most medicines, even over the counter ones, come with a whole list of side effects. Everyone is different when it comes to side effects, Just because it's on the list doesn't mean that you'll get them. If you get a side effect from a med that you can't handle then you might want to talk to the dr about changing the med.

Just because they are a 'Neurologist' doesn't mean they are the one that you need to go to. Finding one you like, who will listen to what you have to say and work with you, will be the best.