Simple Partials - how tired do they make you?

[Kgartner]

We have been dealing with a lot in the past few weeks with my 16-year old daughter. Either there's some new trigger in her environment that we don't know about, or her epilepsy has gotten worse: she had 5 seizures between July 18-24, more than all the seizures she has had since her diagnosis in September. All complex-partial with secondary generalization.

With 2 med increases and change in dosage schedule, we've had no more T/Cs thank god! But she is now having several short (30-60 second) episodes a day that may be simple partials - they feel a lot like her pre-seizure aura, although somewhat less intense. If they continue, her doctor will likely order a VEEG so that we can see if they are really seizure activity or not.

This whole week she has been absolutely exhausted and unable to participate in the summer program she was supposed to do. Some of that is probably due to the number of seizures she just had, and some to the med change (since July 18 her dosage of Onfi has been doubled). But I'm wondering if at this point it's the "episodes" that are the real problem.

We have never experienced her having simple partials before - they have always become CPs and then T/Cs. Do simple partials make you super tired as well? She's having 2-5 a day. It seems to me that she will be doing OK, then will have one of these episodes and after that it's like the life has been sucked out of her again. Thanks - I would love any input as we try to figure out what is going on.

 

[arnie]

I've had mostly complex partials, which really wear me out, but I have also had simple partials and even, I'm pretty sure, subclinical seizures. Those last two seizure types can also knock the stuffing out of a person. The chemicals or hormones or whatever that the seizures release must cause those feelings of fatigue. Of course, medications can also cause those feelings, too. I hope you can get some answers and the right dose of the right med.

Onward!

 

[Cetacean]

My auras (=simple partial seizures), -stereotyped fleeting phantom smells, don't leave me particularly fatigued. They simply come and go.

My complex-partials, on the other hand, leave me profoundly exhausted and confused for at least 7-10 days, often longer. (Your nicely turned phrase "it's like the life has been sucked out of her" fits my fits well.)

I am dismayed and a little confused by this. I've never heard of anyone taking so long to recover. I've seen people have full-blown T/Cs and they feel normal after a few hours.

I suspect maybe I'm having serial seizures, thus the persistant fatigue. Might that be your daughter's case? Maybe it's like lightning during a thunderstorm that comes, you get a lot of flashes, and then the storm goes.

BTW strangely it seems my smells don't come and go with my complex partials. I thought simple partials were supposed to precede complex-partials. Clues anyone?

I wish I had some solution or at least greater to offer you Kgartner. I do wish you and your daughter the best of luck.

 

[Kgartner]

Here's how she has described what she's feeling (to the best of her ability):
- it starts really suddenly
- she feels "separate and detached with all of her senses" - like everything is just weird
- then she has a feeling of panic in her diaphragm/chest, and her heart races
- she can talk through them, but she can talk through her pre-seizure auras as well
- I've seen her have really intense ones, where she closes her eyes and needs to hold onto something (usually my hand), but some are milder than that.

They last about 30-60 seconds, so they are more than just fleeting. But she is aware all the way through them.

For instance this morning she was reading one of her books for school, and she had one; afterwards she had to stop reading for about an hour and just lay with her head down.

Thanks for the input so far! It sounds like everything else with this disease - it really depends on the individual.

 

[N Sperlo]

In my case, drowsiness would trigger simple partials.
Is it possible that the drowsiness is triggering the simple partials, not the other way around?
Just a thought.

 

[Kgartner]

In my case, drowsiness would trigger simple partials.
Is it possible that the drowsiness is triggering the simple partials, not the other way around?
Just a thought.

She's been getting 9-11 hours sleep a night, and she's still exhausted all day. That's why this has been so frustrating .

It may be more meds than anything else. Her last dose increase was a week ago - I'm hoping she will start to feel better in a few days. I'm just curious if people who experience only simple partials find that they can wipe you out.

 

[N Sperlo]

Well, you said the meds have been increased. What meds is she on? I used to sleep 13-16 hours on Depakote.

 

[Belinda5000]

simple partials which is just one seizures type I have of many.

my simple partials can really wear me out and I usually have 2-5 at a time.
mine last for 2 min's and I use all my muscles which wear me out.

 

[MAB]

I have only simple seizures as far as I know. I've had a couple that could possibly be complex. The SP's have lessened drastically since starting meds in Oct. I used to get weakness/heaviness in my left arm and sometimes my left leg. I was also plagued by phantom odors. Sometimes these symptoms would come in waves for hours or days, usually brought on by illness (sinus infections especially). They would leave me totally exhausted for days. The very brief ones ( to me that is anything under 10-20 minutes) leave my tired but not for as long. The 10-20 second PS's don't have much effect at all. Since starting lamictial I think I have only had 1 phantom odor seizure. I have also had 1 SP with the weakness in my left arm that went status for so long I called the doctor, left me exhausted and with a horrible headache. I don't call her if they only last 10-20 minutes, I have had so many of those over the last 4 years that they don't seem like any big deal to me. She finally gave me rescue meds to help with the longer ones and to help me sleep at night. Even when I am exhausted, without meds I can remain awake for 36-48 hours. I now take 2 different meds for sleep, cut down from 3 meds.
I have had insomnia much of my life even before the seizures started.

 

[Cint]

My auras (=simple partial seizures), -stereotyped fleeting phantom smells, don't leave me particularly fatigued. They simply come and go.


I am dismayed and a little confused by this. I've never heard of anyone taking so long to recover. I've seen people have full-blown T/Cs and they feel normal after a few hours.

I suspect maybe I'm having serial seizures, thus the persistant fatigue. Might that be your daughter's case? Maybe it's like lightning during a thunderstorm that comes, you get a lot of flashes, and then the storm goes.

BTW strangely it seems my smells don't come and go with my complex partials. I thought simple partials were supposed to precede complex-partials. Clues anyone?

You're correct in your first sentence by saying that simple partial are auras. Therefore, they do precede complex partial seizures. A simple partial seizure is an aura. I've had SP (an aura) before my CP seizure and it is always a fleeting moment, like someone or something is approaching me, then they disappear. And when I go into the CP, it is like I am starting to drift away and things move in slow motion. People may speak to me, but I do not understand and I may speak gibberish to them. And I've been told I have a faraway stare. I've never experienced any "smells" with my seizures. With me, it's always been "hearing" things. I usually recover from a CP within about 30 minutes.

And before I had the VNS, I used to experience TC seizures. Depending on the severity, sometimes I would recover within an hour, sometimes it would take several days. But they definitely always made me tired.

 

[masterjen]

You're correct in your first sentence by saying that simple partial are auras.

My understanding of simple partials and auras is that an sp is an aura only if it precedes a complex partial, tc, etc. But if the sp occurs on its own, it is not an aura and is a simple partial seizure.

 

[Cint]

My understanding of simple partials and auras is that an sp is an aura only if it precedes a complex partial, tc, etc. But if the sp occurs on its own, it is not an aura and is a simple partial seizure.

According to the pros, here is what happens in the simple partial:

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

If the simple partial seizure is an aura (a warning) a stronger seizure with loss of consciousness may follow. No first aid is needed for a simple partial seizure.

How can I tell if someone is having a simple partial seizure?

Because the person is fully alert and able to interact, someone may not be able to tell when a person is having a simple partial seizure unless the person tells them.

 

[bentwanderer]

We have been dealing with a lot in the past few weeks with my 16-year old daughter. Either there's some new trigger in her environment that we don't know about, or her epilepsy has gotten worse: she had 5 seizures between July 18-24, more than all the seizures she has had since her diagnosis in September. All complex-partial with secondary generalization.

With 2 med increases and change in dosage schedule, we've had no more T/Cs thank god! But she is now having several short (30-60 second) episodes a day that may be simple partials - they feel a lot like her pre-seizure aura, although somewhat less intense. If they continue, her doctor will likely order a VEEG so that we can see if they are really seizure activity or not.

This whole week she has been absolutely exhausted and unable to participate in the summer program she was supposed to do. Some of that is probably due to the number of seizures she just had, and some to the med change (since July 18 her dosage of Onfi has been doubled). But I'm wondering if at this point it's the "episodes" that are the real problem.

We have never experienced her having simple partials before - they have always become CPs and then T/Cs. Do simple partials make you super tired as well? She's having 2-5 a day. It seems to me that she will be doing OK, then will have one of these episodes and after that it's like the life has been sucked out of her again. Thanks - I would love any input as we try to figure out what is going on.

I agree with Arnie. I have complex partials and simple partials and sometimes I don't know if what'm having are auras or the real deal. But in all the those I get snockered-life sucked out of me. I tell my husband that my life switch has been turned off. Sometimes my life switch is off for 24-36 hours. sometimes just for 6 +/- hours.

I can truly empathize with your daughter and with you. I was diagnosed about a year ago.

 

[saleen]

My complex partials some times make me sleepy or if I have more than one a day, I'll get a headache. My simple partials don't cause fatigue, but some times headache. I think it could be the Onfi. Ever since I was put on it it wiped out any energy Keppra wasn't already draining out of me. I started taking fish oil and I noticed an increase in energy. I don't have proof that it's the fish oil, but I know I'm no longer as tired and wiped out as I used to be.

 

[Kgartner]

Thanks everyone! I am beginning to think that the bigger issue is the Onfi - which stinks . She was having no issues whatsoever on the lower dose.

And it's not even totally working, although the higher dose and changing to 3x a day have eliminated the secondary generalization thank god. But she is still having partials, almost on a daily basis. I count at least 8 in the past week, possibly more, with one REALLY strong one this past Saturday. That isn't helping with her tiredness or her mood. We are starting the process of scheduling a VEEG to see if we can verify that is what these are. Maybe they'll go away on their own before then . . .