How much should I worry?

[Kgartner]

I'm about to ask a question that I know that none of you will have the "answer" to! But I am hoping that maybe some of you have seen a seizure/epilepsy pattern like my daughter's and would be able to give me the benefit of your experience and some idea of what the future might hold.

My daughter's first seizures (at age 15), and the seizures she had for about a year all followed the same pattern: a brief aura, followed by a complex partial (fixed stare + head turn) which then immediately generalized into a tonic-clonic seizure. During that first year she maybe had 2 or 3 occasions in which she just had an aura. About a year ago she had a week in which she had 5 of those "big" tonic-clonic seizures within 6 days. Because of that, her medication was doubled (she was on Onfi, and went from 20mg/day to 40mg/day), and the tonic-clonics stopped for a while.

However, after that week she started to have very frequent (on average 3-4 times a week) 30-60 second simple partials/auras that didn't progress. At first we weren't sure what was going on, and her doctors thought that the episodes might have been anxiety (some of you might remember us going through that last summer!). However, after lots of conversations, testing and a few more tonic-clonic seizures, they became as convinced as I was that they were indeed simple partial seizures.

After a video-EEG in November (in which she had 4 cp/t-c seizures within 48 hours of a medication reduction), she started taking Vimpat, first at 200mg/day, and at 300mg/day since December. She has not had a tonic-clonic seizure since then.

But the simple partials continue. For some periods of time they have been daily (often having 2 or 3 at a time), and from April through late June she was only having them 2-3 times a month. They've worsened again this month - but while the frequency and intensity ebbs and flows, they have never completely stopped - her longest period of time without one was 3 weeks. For her, the aura/simple partial is a disorienting feeling that things are really "weird" or off, often with a racing heart and pallor as well, and while they don't impair her awareness and she can still speak, they can be very intense and frightening. She will often feel confused and anxious afterwards, particularly when they are very strong. She can basically "live" and function with things the way they are, but of course it's not ideal. At her last meeting with her neurologist we decided to try upping the Vimpat again to 400mg/day, hoping to reduce her partials and also wean further off the Onfi (she's currently at 35mg/day). I am willing to give that a try (as is Annika) but I am concerned that the increased side effects may be bigger than any gain in seizure control.

These are my questions. Again, I am not expecting that anyone will be able to give me the answer or predict the future, but I am open to any thoughts:
- Has anyone else had this type of pattern of seizures? i.e. where medication was able to eliminate the "big" seizures but the partials continued
- What are the chances that we are eventually going to eliminate the simple partials with medication?
- Should we just give up on 100% seizure freedom and she should just learn to live with this?
- And if the partials continue is it very likely that eventually the big seizures will come back again?

If it helps, her seizures all originate in her left temporal lobe, although the precise seizure focus is unknown (her MRI is unremarkable). Thanks in advance for any thoughts or insights.

 

[masterjen]

My plan has been to take a break from replying to forum posts for a while, but wanted to reply to yours about your daughter's situation because it does sound a bit similar to my own. My seizures are frontal lobe.

I have had a similar pattern of seizures, but tonic with myoclonic rather than tonic-clonic for my strongest ones. I am on Fycompa, and have just moved up from 6 mg to 8 mg, and I have noticed that for the past 2 weeks on 8 mg (knock on wood) that I have had none of these strong ones when before Fycompa I was having an average of 5 per week. I'm not saying this to "advertise" Fycompa at all; just further relating to your daughter's situation as I think we both started our newest medications around the same time.

Because I also have dystonia and ataxia, it has been very difficult to determine if I have partial seizures as well, or if these "seizures" are in fact sudden brief attacks of worse dystonia and ataxia. They have improved on Fycompa, so one of my doctors wonders if my anti-seizure medications are helping the movement disorder (which they can) or if these dystonia episodes are in fact partial seizures. For whichever it is, these episdes were decreased before the tonic/myclonic seizures (confirmed to be actual seizures on EEG video).

I think 100% seizure freedom is always a possibility. If not right now with the current medications available, then perhaps with a future medication.

I do think it is possible for my bigger seizures to occur, and they have. I see it as something has lowered my seizure threshold enough to cause one to occur. For me one large seizure leads to a few more, as if there is a "recovery lag" or something.

 

[Cint]

- Has anyone else had this type of pattern of seizures? i.e. where medication was able to eliminate the "big" seizures but the partials continued

My meds and the VNS eliminate my "big" Tonic/Clonics, but the partials still come and go.

- What are the chances that we are eventually going to eliminate the simple partials with medication?

Have the docs mentioned your daughter's hormonal fluctuations and how they could mess with her seizures? For females, sometimes hormones do play a huge role in seizure fluctuations. No One knows for sure if the med(s) are going to work or not.
Has the neurologist not mentioned surgery yet? Not that I'm suggesting it, just curious because a lot of times if meds don't work, that is their next option.

- And if the partials continue is it very likely that eventually the big seizures will come back again?

Not always. When I first started having seizures 30+ years ago, they started out as TC's and Cps. I haven't had a BIG TC now in over 10 years. But have had many Cps.

If it helps, her seizures all originate in her left temporal lobe, although the precise seizure focus is unknown (her MRI is unremarkable). Thanks in advance for any thoughts or insights.

Mine start in my left temporal lobe, deep down in my hippocampus.

 

[Kgartner]

Thanks to both of you!

Masterjen - Annika also seems to have bigger seizures in groups or clusters. For instance, the group of seizures she had last summer was initially set off by a missed dose of medication. Even though she then took that missed dose, and increased her med dosage (and since she was in Thailand at the time, they also gave her Valium and for some reason Lyrica!) she still went on to have a bunch more. That happened again in October. This is one reason I am so worried about a recurrence of the more serious seizures: when one happens, more are generally right behind it.

Cint - It is reassuring to know that you can have partial seizures for years without it meaning that tonic-clonics will inevitably come. I would still LOVE to eliminate those partials (I'm sure you would too!). I think Annika may be unusual in that, except for one time during her video EEG, we have never observed her having a complex partial that did not immediately generalize. She seems to either just have a simple partial seizure with no loss of consciousness, or it progresses to a CP which then immediately generalizes. I haven't heard of many other people with epilepsy who have that kind of seizure pattern.

Thanks for the suggestion about a hormonal pattern - however, I have never seen any correlation between her monthly cycle and her pattern of seizures. I have charted it carefully, and there does not seem to be any relationship there. The only triggers we have identified are stress and lack of sleep. Otherwise her seizure pattern is pretty random.

She has been evaluated for surgery, and is considered to be a good candidate. All of her seizures originate in her left temporal lobe, and any epileptic discharges also come from there, both on EEG and in her MEG. She would need grids/depth electrodes before surgery because she does not have a clear lesion and her auras do not show on EEG with scalp electrodes, so the precise seizure focus is unclear. We put the surgery conversation on hold in March because she was having such bad depression and anxiety that her doctors did not want to put her through that until she was feeling better.

Moreover, I am not sure we would pursue surgery right now since she is only having simple partial seizures - that just doesn't feel like the right choice. Technically, since she continues to have auras she has failed Vimpat; she has also failed 3 other medications for various reasons. If the tonic-clonics return, or if she starts to have complex partials that don't generalize, then we would probably look at the surgery option again.

 

[valeriedl]

When I was first diagnosed I was 27, about 12 years ago.

I was having a seizure almost every other day, sometimes more often and sometimes more in one day. These were all complex partials that were very bad and lasted a long time, I very rarely had a grand mal. I'm not sure how many simple partials I was having because epilepsy was all new to me and I thought a seizure was when you blacked out or shook.

I had tried several different meds but nothing really seemed to help much or I couldn't take the side effects. A med may have for a few weeks or months but then stopped. This is normal for some people.

We couldn't find any meds that seemed to help much and I wasn't able to have brain surgery so my neuro suggested a VNS. When I got mine it decreased my seizures to an average of 7 a month, simple and complex combined, and they aren't nearly as bad and don't last as long. I will have a grand mal but only once or twice a year. I'm still taking meds along with it.

Most of my seizures are brought on by lack of sleep, stress and caffeine. I can have them for no real reason though when none of these things are happening.

Now I might have a simple partial before the complex or I may just go into the complex with no warning. If I have a simple partial and use the magnet it will almost always stop it from going into a stronger seizure. If I don't catch the seizure in time or have a simple partial someone will use the magnet on me and it will bring me out of the seizure pretty quickly.

Over the last year I've noticed that my seizures are starting to come in clusters, I know there is nothing hormonal about this. Other months they are spread out all through the month.

There is no guarantee that something is going to stop her seizures. She will always have epilepsy though, seizures or not, because there is no cure for it. For some people if they find the right meds or have surgery they can get their seizures to stop or lessen.

 

[Kgartner]

Valeriedl - thank you so much for sharing your experience.

While none of us know what precisely the future holds, it is so useful and helpful to me to hear from each of you about your journey.

 

[lindsayschu2]

I'm going to answer this probably differently than some others might, but it's coming from my own personal path. I would probably ask for a very in-depth blood panel if they haven't done it--I'd ask for a CBC, full electrolyte panel, and B vitamins (B12, B6 and folate), vitamin D, and make sure you see the results and compare to a number of reference ranges, since the US can have much broader ranges than some countries find acceptable. This could have nothing to do with her seizures at all for sure. But my experience has been that being on high dose AEDs caused me to become deficient in electrolytes, vitamin D and some of the B vitamins. This caused me to have more seizures. Electrolytes, D and the Bs play a big role in seizures if they are off, and all can be affected by AEDs. Certainly may NOT be her case. But it definitely can't hurt to know. I was able to achieve much better seizure control by stabilizing these levels. Drs will push back on testing these sometimes but I am very glad I pushed--I was low on potassium for a long time before anyone tested and I was pretty sick by the time they tested and finally corrected. It's one more avenue for you to check into.

 

[Kgartner]

Lindsayshu2 - When your vitamins/electrolytes were off, were you just seeing seizures as a symptom? Or did you have other symptoms as well? Other than the partial seizures, Annika's health is excellent - better than she's felt in a few years I think. She's been attending a very rigorous ballet program for the past 3 weeks, dancing 3-5 hours a day, doing a lot of walking, eating really well and feeling great. When she's having a lot of auras they will really throw her off - she has trouble thinking, gets extremely tired (she took a 2-hour nap during the day after she had a bunch last week), and she even looks pale and unwell - but when they are not happening she feels very healthy. Is that similar to what you experienced?

In any case, thanks for the excellent advice! I will definitely bring this up with her doctor.

 

[Cint]

--I'd ask for a CBC, full electrolyte panel, and B vitamins (B12, B6 and folate), vitamin D, and make sure you see the results and compare to a number of reference ranges, since the US can have much broader ranges than some countries find acceptable. This could have nothing to do with her seizures at all for sure. But my experience has been that being on high dose AEDs caused me to become deficient in electrolytes,

:agree: My epileptologist used to do a CBC often, especially when I was on meds like Tegretol, Phenobarbital or Dilantin along with newer meds. Several times my electrolytes were off. Wish I could remember what meds I was on at the time.

Also, I forgot to mention in my previous post, has Annika had her blood sugar tested? Sometimes low blood sugar fluctuations cause seizure-like symptoms.

 

[Kgartner]

Also, I forgot to mention in my previous post, has Annika had her blood sugar tested? Sometimes low blood sugar fluctuations cause seizure-like symptoms.

She has in the past - when she was first admitted to the hospital for seizures, and when she was dealing with some abdominal issues a number of years ago. Nothing ever showed up at that time, but we haven't had it checked recently.

Another thing to add to the list!

 

[lindsayschu2]

When they were VERY off I had a ton of symptoms--muscle cramps everywhere, muscle twitches everywhere, tingling/numbness, diarrhea or constipation, dizziness, shortness of breath, lots of stuff. But because of all of this long struggle I can now tell when things are slightly off. I get more muscle cramps (neck, shoulders, feet), my weight fluctuates more with fluid retention and loss, etc and I get more seizures. Vitamin D was obvious to me in that I got a lot of muscle aches at night. I start sleeping really badly. I think you can have these levels be off and barely notice it--but it could play a role in seizure stability. Just one thing to check off so you know it's not that, you know? Besides--a good neuro absolutely should be checking these things occasionally. My old neuro never checked anything and these drugs can seriously deplete certain things.

 

[valeriedl]

When she's having a lot of auras they will really throw her off - she has trouble thinking, gets extremely tired (she took a 2-hour nap during the day after she had a bunch last week), and she even looks pale and unwell - but when they are not happening she feels very healthy. Is that similar to what you experienced?

Usually after a seizure I'm tired and have to sleep. Depending on how bad the seizure the more I will sleep. If it's a very bad seizure I may even be tired the next day and sleep most of it too. Other than that my sleep schedule is normal.

I do normally take a nap each day but I'm pretty sure that is because of the meds that I'm on and they make me tired.