Feeling 'seizure-ish' disrupting my day

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Hi! I'm brand new here, and was hoping to get people's perspectives on some things, if that's ok!

I've had epilepsy since I was 4, and I'm now 30, but I've rarely had the chance to meet other people with epilepsy and compare experiences. I've only had a handful of grand mal seizures; most of the seizures I've had have been clonic, but partial seizures. I've been on Tegretol since nearly the beginning, which partially controlled the seizures all through my teens and early 20s.

Amazingly, it's now been about seven years since I've had a seizure. However, I still have days where I feel 'seizure-ish'. Is this a common thing? I'll get feelings just like those that normally used to precede a seizure. For me, it's a pulsing feeling in my left hand (which is where the convulsions always used to begin from), a sense of anxiety, and some clumsiness and brain fog. That always used to be my warning sign to lay low and stay someplace safe. However, it can persist for hours and not result in an actual seizure. These sensations often come when I've experienced things like sleep deprivation, dehydration, or major stress, which have always been seizure triggers for me.

I still have days like this a couple of times a month, and I'm starting to wonder if I should consider changes to medication, or if this is even epilepsy-related at all. I've seen my neurologist in recent years (he's great, and specializes in epilepsy), but because I'm not actually having seizures, he doesn't seem worried. However, I'm getting tired of the disruption it causes to my life.

Any thoughts would be much appreciated! It's really encouraging to see such a helpful group here.
 

valeriedl

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I'm going to assume you're a woman? Sometimes seizures will happen around your time of the month. That is something that can happen with some women. Seep deprivation, major stress and large amounts of caffeine are huge triggers for me too.

My sister-in-law has epilepsy. Her seizures will last a few seconds but she'll have a lot of them at one time. Then again later, maybe a few minutes or hours later she'll have more like this. The first time I saw it happening I didn't realize she was having seizures, I asked my brother if she was and he said yes. I just noticed that she's stare, get a little bit confused, then like I said it would happen again a few more times shortly together all through the day. In a way what you described sounds like she has them.

How long ago was your last appt with your neuro? Is it your neuro or you that thinks you aren't having seizures? I'd see your neuro and talk about it.
 
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Thanks for your reply! Yes, you guessed correctly - I am a woman. I have noticed how the seizures tie in to the menstrual cycle as well - it's really interesting.

I've read about absence seizures and other non-clonic seizure types, but it doesn't seem to match up with what's happening to me. I never 'zone out', stare, or any of that. Because the sensations I described can persist for hours or days, I've always thought of them as a kind of extended aura. Have you heard of seizure activity that doesn't manifest itself with that 'zoning out'?

I last saw my neurologist a few years ago. I've mentioned the sensation in my left hand to him, but we've never talked about the brain fog, since that's something I've only really been able to describe in the past year or so. He's never seemed very concerned about the sensations I've talked about, because they don't result in clonic seizures, but maybe I haven't emphasized how much they impact my day-to-day life. I'm probably due for a visit again soon, so it would be worth talking about! I was just hesitant because I don't feel confident in explaining it to him.
 

Porkette

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Hi queenofpies,

I've had epilepsy for 48 yrs. I have both absence and complex partial seizures and take my word every month when hormones are
changing the seizures would start up and that's do to the estrogen level increasing while the progesterone level decreases. I started
using cbd (med marijuana) and since then the seizures have decreased to the lowest in my life.
When I started going through my change in my mid 30's the seizures also decreased, my Dr. told me that often people
with temporal lobe epilepsy will either find an increase or decrease in their seizures when they go through their change.
One thing I started to do that worked really good is eating peanut or almonds they have progesterone oil in them and
that also helped reduce the seizures.
The next time you start to feel a possible seizure start tighten up all the muscles in your body and make your hands into
tight fists for a few seconds and see if it stops the seizure feeling. I was taught to do this back in the 1970's and it has stopped
many seizures also do the cold water therapy and put a cold washcloth on the back of your neck and on your face for a few
second 3 times a day and it will calm the neurons down reducing seizures. I was in a medical study a few yrs. ago where Drs.
asked me to do this and it does work. I wish you the best of luck and May God Bless You!

Sue
 

toro

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This has happened with me since I was diagnosed, and I'm a man. For about 3 - 4 days a month I'll have migraines and a bunch of feelings of a seizure onset that subsequently fizzle out.

I would just hazard a guess that it's hormone levels, I apparently have a number of other medical things that are common in women, but rare in men.
 

Nakamova

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Howdy QOP, Welcome to CWE!

Do you have any other health issues that might relate to your symptoms? Do you take any other meds other than seizure meds?

Since the symptoms seem to be tied to sleep deprivation and stress, do you have a way of tackling those things? Fatigue is the #1 seizure trigger, so improving sleep quality in particular might help reduce or prevent them.
 

Sabbo

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Hello. I've had epilepsy since childhood--mostly simple partial seizures. Now, I have simple & complex partial seizures (those began about 20 years ago). I had a few tonic clinics when I was 14, none since. That's when the feelings I often complained about were diagnosed as seizures. Mine occur at any time. Recently, I had a complex partial 2 hours after taking my morning AED dose--200mg each Topiramate & Zonisamide! Although seizures are more likely to occur if I'm stressed or overtired, I may have breakthroughs for no obvious reason despite taking my meds.
 

bdhshakes

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I experience something similiar to what you're describing sometimes. It's really hard to explain, but I just get this feeling in my arms and back that kinda of feels like lightning shooting through my arms in these weird light pulses and then just a weird feeling in my head. It's not painful at all but it just feels like a pre-cursor to seizures but for me it typically never leads to actual seizures. I've always assumed that I was experiencing a very mild seizure since I've never had any kind of warning for my seizures, or trigger (aside from missed doses, and sleep deprivation).

That feeling has always been super annoying to me though because it really feels like i'm about to break out into a cluster of seizures and so I always want to just stop what i'm doing and relax but, that's usually all it is for me just that "seizure-ish" feeling.
 
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