New here: Once a month seizures - Controlled or uncontrolled?

[nocturnal0703]

Hello Everyone,

Nice to forum meet you all.


About me: I'm a 32 year old female with nocturnal epilepsy. I was diagnosed as a teenager and take 450mg per day right before bed. I was first prescribed Tegretol but had symptoms of Stevens-Johnsons Syndrome. Then I tried Epival for 3 years but that didn't control them. So now I've been on Lamictal for 12 years. I get Tonic-Clonic and Complex Partial seizures.

My question: I get nocturnal seizures about once a month (the ones I remember! I live alone!)......would this be considered controlled or uncontrolled in your opinions? Is this something I should worry about or does this mean my medication is working?

My doctor has suggested adding another med on top of my lamictal. Though, I don't want to start a new medication because I don't like the idea of having side effects!! I don't get any side effects on Lamictal which I like very much.

Any thoughts would be appreciated. Looking forward to it!!

Thanks

 

[N Sperlo]

Hi nocturnal. Welcome to CWE.

The only thing I consider "controlled " is 100%. No seizures. If you are ok having seizuresin your sleep, that is up to you, but I wanted no more seizures, and that's what I got.

Every medicine will have side effects. It sounds like your doctor is willing to try, but you're the boss when it comes to what you will take. If it were my decision, I would give additional medicine a try. Do you know what medicine your doctor would like you to try. I bet someone here has tried or is on it!

 

[Belinda5000]

I haven't had a seizure since August and I refuse to go on POtiga in January, I'm not able to find anything that covers my Tegretol and Topamax after January.I've been on Topamax since 2003 and Tegretol since 1975.I'll never be controlled.

 

[nocturnal0703]

Thank you for the welcomes! Wow!! It's great to communicate with people who also have this disorder. I used to volunteer at an Epilepsy foundation, but I've since moved cities and I'm considering it once more.

N_Sperlo: That's true....that zero seizures would be considered "controlled"...however, I feel like that is extremely rare? Do you mean that you don't have any seizures any more? How long has that been for?

What meds are you on? Do you side effects?

Belinda: Hello How often do you get your seizures on average? Do you know what triggers them? I'm not sure what triggers mine. I've tracked it with my monthly cycle and there is no pattern. Lack of sleep can cause it...but sometimes not. It can be frustrating! We don't have a family history that we know of.

Thanks!

 

[masterjen]

The definition of "control" is different for everyone. For some it is as Sperlo wrote: 100% control and no seizures whatsoever. For others who have very frequent seizures, one a month might be considered "control" in their eyes. That's how it would be for me. I'd be happy with one per month (I have 3-10 per week) but then mine are nocturnal complex motor, not TC and I don't wander or injure myself. I am, however, wiped out for the next 1-2 days.
I think it depends on the type of seizures you have and how significantly you are affected by them. For instance if you tend to injure yourself during a seizure, get out of bed and wander about in the night, or are unable to function for days afterward, you might want to consider increasing the medication and aim for better control. If your seizures do not significantly affect you (ie. no injuries or other safety issues) and medication side effects are a concern, then maybe your neurologist will agree to keep your medication where it is.
It would be worth checking with your neurologist to find out why he wants you to have better seizure control: is there concern for the seizures causing damage or other structural changes in the brain, for example, or is he/she worried that a pattern of increasing seizure frequency may develop. These are important things to find out.
Lastly, not everyone has side effects from medication and whether or not one has side effects is very dose-dependent.

 

[nocturnal0703]

masterjen - You did raise a good point. I generally function fine the next day and often don't even realize that I had a seizure unless I'm with someone. Perhaps a slight headache.

I had 2 tonic seizures last night (my new boyfriend said my only symptom was stiffness...though, I could have gone into a clonic state. It is his first time witnessing any type of seizure.). But I felt relatively fine this morning. I would not have suspected a thing if he didn't tell me. Even though I'm sleepy, if I wanted to I could hit up the gym.

 

[N Sperlo]

I think hearing about 100% control is more rare than it is. Many just do not talk about it. I have no idea when my last was. Fora while I thought I had control, but was having partial seizures in my sleep. It has been probably 8 months since we got things under control. I agree with masterjen, though. Control is different for everyone. I'm lucky. I don't have seizures, but if I were to stop taking the medicine, they would come back.

Right now I'm on 4000 mg of Keppra a day along with 300 mg of Vimpat.

 

[Fedup]

nocturnal0703

I have nocturnal seizures as well, I agree with both N Sperlo and masterjen. I am like you still getting a seizure but they are controlled enough for me to live a life, but its not something to get worried about for me, do not get me wrong I would love to be controlled 100% but its just not going to happen. Yes I keep trying to get better control but I am happy enough to be able to live a life.

Are your seizures controlled in my eyes not 100% but you seem to have the will and strength to live a life so maybe you consider that you are fairly well controlled but only you know that. If for any reason you have an idea something is wrong or should be better, make sure you say it to your doctor and neurologist and tell them how you feel.

 

[lindsayschu2]

I was under what I call complete control for over 30 years. Occasionally, if i skipped meds for a couple of days in a row (I wasn't great about med compliance because my seizure activity was so rare), i might have the most fleeting deja vu sensation--a super mild simple partial. it was so mild and so fleeting that I barely noticed it, yet I know it was a type of seizure activity. Still, I consider this complete control, since it interfered with my life not at all and was, after all, my fault for not taking meds. Now I have seizures a lot (never ever missing a dose of any of my meds). If I get to the point where I only have a couple of very mild nocturnal myoclonics one night midcycle and one night before my cycle, and a few very mild deja vus the day I get my period, i may well consider that good enough. It would be a vast improvement from where I've been. I'm not sure there's that much value to the label '100% control,' but I do understand the desire to determine where you need to consider med increases or changes. I wouldn't be comfortable experiencing tonic clonics and would keep trying for better control until you feel your options have been exhausted (That would be my approach).

 

[Chris_Escobar]

Hi,

I am new here myself, I actually started this account because I just had a seizure this evening (about 2 hours ago) so I wanted to document what I am feeling right away while it is still fresh in my mind.

To answer your question, I would say no your seizures are not "controlled" if you still have them, even though they are nocturnal. But I do understand your reasoning. In the past 10 years I have only had 6 seizures (this one was number 7). I started having them after being addicted to Xanax at some very high doses for about 3 years. If I could go back and change that I would give anything. 10 years later and I still have a seizure. But I never go to doctors or get on medicine because in my mind it's "controlled" because I have them so rarely. And that may be false logic, but it's what I tell myself, so...

As I am typing this I am finding it difficult to construct the words. I know the words themselves, it's the order that I notice I am straining more on than normal. In fact i'm not sure if what I am typing right now makes sense, but I think it does. My tongue is completely chewed up on both sides and is hurting like hell right now. Looks like it went through a meat grinder. Also, my muscles are extremely tense. Like the way you feel the day after getting into a car accident. I am also noticing that my motor skills have been affected. I'm finding it very difficult to grasp objects with my hands and my legs feel about twice as heavy as they normally would. I also am straining to walk right now.

But, I think what is most bothersome for me at this time is the mental feeling I have which usually persists a few days. Everything around me, my house, my car, my room, etc. all seem like the way they would look to you if you have been gone for a long time and then came back. Does that make sense? Like nothing is familiar. And I don't like the feeling. It in turn causes me to feel depressed or sad, gloomy, gray....you know?

At least I am past the panicky, hyperventilating phase that always happens right after I "wake up" and lasts for about 30 minutes or so. That is probably the worst part of the seizures for me.

Anyway, I just wanted to share my story with you all. I look forward to settling in here as I always feel like I have some sort of "connection" with other people who have had seizures.

 

[George__]

For myself controlled would mean zero seizures

 

[valeriedl]

I also consider controlled would be 100% no more seizures. If you are having at least 1 a month then you are having seizures.

My very first seizure, 11 yeas ago, was a notional seizure. I don't know if I've had any more nocturnal seizures since because I sleep alone, I think I have though.

During many of my seizures I black out and don't know that I've had it unless there was someone there to see it happen or if I have a very bad headache. I don't always get headaches after them however. There have been a few times that I've been in one part of the house and next thing I know I'm in a completely different part of the house and don't remember at all going there. I know this means I've probably had a seizure.

I have on average 7 seizures a month, I don't consider myself as controlled. I could be having more though because as I said unless there is someone there to see it happen I don't know it did. I know there are people who can go years seizure free then bam out of no where they have a seizure.

There are two major thing that will usually cause a seizure for me - stress and lack of sleep. Too much caffeine is also another big one.

When I was first diagnosed I was having probably over 20 seizures a month. I can't even begin to name all the different meds that I've tried through the years. I had to stop taking some and change to another because the side effects were just too bad or the med wasn't working at all.

I had surgery, a VNS put in, and I'm still taking meds. It took a few years to figure out which meds worked right with the VNS after I got it because the VNS wasn't working just by itself. After all this was when my seizures went down to about 7 a month.

Two side effects that are from the meds that I'm on now are tiredness and I'm very irritable, which is from the Keppra. These I can live with compared to some of the side effects that were from other meds that I tried. On one I was going days with out eating, my parents pretty much had to force me to eat. I got off that one pretty quick and started eating normal again.

It's nice to meet you and you will get a lot of good advice on here!

 

[AlohaBird]

Yep, I agree. Infrequent seizures=/=control.
I too have nocturnal seizures only. I was at about one a month and thinking that was about as good as it gets for years until i changed meds from Tegretol to a combo of Phenobarbitol and Valproic Acid. Every medication is different for every person. Play around with dosages (with your neurologist of course) and combinations til you find something that works 100% for you.