What's E, What Isn't~?

[Endless]

I'm still figuring out what's a seizure, and what isn't. Some it's pretty obvious, like twitching, or finding myself out by the mailbox and not knowing how I got there, not recognizing my should-be-familiar-surroundings, feeling a big warm hand on my back when there's no one there, among other things. But some things, the origin is not so obvious to me.

Can you all enlighten me - some things that I have been blamed on other causes I'm beginning to suspect are seizures or the aftermath of seizures. They are intermittant: muscle spasms on the left side of my back (to the point where the muscles on the left side of my back are now "bulked up" bigger than the right side), stomach pain, ringing in my ears, achy painful muscles all over, headaches and migraines, not being able to get words out, getting freezing cold all of a sudden (my feet suddenly feel like they've been plunged in ice), and my body shaking/shivering/trembling all over, stuttering.

Can anybody comment on these? Possibly a seizure, or something else?

I am highly suspicious of the stomach pain and muscle spasms in my back. I missed a dose of my meds and realized that during the day, those two things had reappeared.

I think it would really help us newbies in here if people could describe all the flavors of their seizures, in their own words. We might recognize ourselves in them. The sterile descriptions on the websites are really confusing and don't mean much, in my opinion.

One last thing. My home has been becoming increasingly messier and disorganized over time. I like a clean organized house but just can't keep it that way. The worse my E symptoms got the worse my house got. Now it's gotten to the serious stage. As my meds are getting straigtened around, I'm hoping my house will get straigtened around, too. Has anybody else had that problem?

[occb]

The messy house thing sounds like my partner, big time. Although he doesn't have an official diagnosis yet, we're pretty certain he's experiencing seizures. When he was first placed on lamotrigine, the apartment was immaculate, as his body became accustomed to the dose, and other meds made him sicker, the apartment began to disintegrate. Since I'm not much of a housekeeper, it kind of stays that way.

All those things you described above could be seizures, could be med side-effects, could be migraine-related, or all of the above. It's kind of hard to tell what's what sometimes.

[Zoofemme]

I've got some similar issues myself which have me bamboozled and which sent me hightailing it back to the docotor so the only one I will attempt to address is the stutter...

Is it a constant thing or intermittent and can you link it to one of your meds or does/did it occur following a seizure, etc??

My stutter was the monkey wrench in the works. My first neurologist had NEVER encountered it and my 2nd had only encountered it as an intermittent problem following a seizure or as a med side-effect. I stuttered non-stop for 4 yrs. Initial onset was after I had a seizure. I was checked to ensure i did not have a stroke at the same time and that was negative. THe 1st neurologist thought the stuttor was pschosomatic, they psychiatrist negated that. THere was no response to meds or speech thereapy although I could SING without a stutter (trust me, I was not going to sing my way through life ). My 2nd neurologist posited that my seizures were occuring/spreading close to my speech center and since the seizures weren't under control my speech wasn't under control. Trileptal started to finally reel my seizures in but my speech still ticked; add in the lamictal and voila...within 6 mos no more constant stutter. Now, if I have a seizure, I stutter post-ictal. Friday was pretty bad in the speech department for that...makes me wonder just how long the seizure lasted. Could be the topamax contributing though too because I am having problems with aphasia there right now.

NOt sure how much that helped but that is my experience.

[Nakamova]

Zoo -- There definitely seems to be a link between stuttering and epilepsy. It can be a form of reflex epilepsy, and can also indicate an area of the brain that has been damaged by seizures. It also seems to be more common among people with E who are also ambidextrous or lefthanded. That doesn't necessarily rule out the meds as a cause, but since the Lamictal helped that seems to make an epilepsy-related cause more likely.

[Endless]

I only stutter once in a really great while - like once every few years, so that was a curiosity to me, but not a big concern.

The rest, progressively worse over the last few years. The fear seizures were the worst of all. Weird smells, unexplained bruises, saying nonsensical things and zoning out didn't really bother me. Those just freaked out everybody else that was around me.

Hey, good news. I think the Topamax is finally starting to do it's job. The dosage was upped yesterday and today I feel better. Is that possible already? The side effects still suck in a big way, but no seizures today (I was having them on an almost daily basis before). I'm beginning to see a possibly better life. Hope is a wonderful thing.

I am going to clean one of the bathrooms today. I think that's the first step in shoveling this house out. I still feel like a bump on a log but maybe if I set a goal I'll be able to get something done. I'm just so darn tired. Is that the Topamax, too? I see up above I used a big word today. At least my brain is starting to come back.

[Nakamova]

Yeah the fatigue is probably Topomax-related too. But it's great that you're feeling better! That will go along way to giving you energy in the days ahead.

[Zoofemme]

I'm ambidexterous...go figure...seems they've uncovered things that I had no clue about, but living in the backwoods of Indiana and talkign to chickens for so long then moving out of the ocuntry will do that to ya I guess, lol.

[dfwtexas]

I am so glad you mention the messy house...I use to keep a sparkling clean house and it has gotten so bad it is embrassing!

[Endless]

Really - I walk into a room and I know it is messy, but I can't tell you what's wrong with it, specifically. Nor can I seem to clean it up. I have no idea where to put things away, and even if I did, I don't have the motivation to do it. I don't know why. I don't know what's wrong with me. It would help if I knew why I'm this way. I never used to be. It seems to be getting worse along with the E.

Now that I'm on a medication that's started to work, I actually picked up a few magazines today and put them in the recycling bin. It's not much, but it's a start. It's not the bathroom I planned, but it's something.

One thing I know, I'm going to be hiring some help to get things cleaned up. But I feel like I need to straighten the house up first, before the cleaning person gets here! So I guess it'll be never!

[tam bam]

Hi Endlessea,

I don't know if this helps but I have been told by two neurologists that I have one shoulder higher than the other (don't know if this is seizure related or not. One neurologist thought that I have one leg slightly shorter than the other.) I do have stomach pain with my seizures. It is apart of my epilepsy. The medication seems to help with that issue I have found. What kind of stomach pain are you referring to? I had vomiting, diarrhea, and nausea it was awful. The headaches were a different story they are related to my particular epilepsy I have found. I have frontal lobe epilepsy so the headaches are not really migraines but kind of an aura for me. The not being able to get words out happens to me quite often. My husband points this out to me all the time. I will try to carry on a conversation and then all of a sudden I cannot get a certain word out. I know what it is but it is like it is stuck in my brain and will not come out of my mouth. It is weird but it happens. This is one reason I do not like to get out in social settings because it is kind of embarrassing.

tam bam

[Endless]

Can somebody tell me if they think this is a seizure or the medication?

In the past I've had fear or euphoria seizures. Lately I've had periods of deep sadness and crying. And by deep sadness I mean bottom of the grand canyon, can't stop crying, done with everything, don't want to deal with anybody, flat out tired to the bottom of my being sadness. Really intense. Then in minutes to hours I'm fine. The last couple of episodes it was many hours.

This is new for me. I'm usually a pretty happy, even person.

I'm tapering up on Topamax. On a low dose 50 mg morning and night.

Any comments would be welcome. Seizures, or topamax? It's getting worse. If it's the topamax I've got to get off this stuff ASAP.

[Nakamova]

Depression is one of the side effects of Topomax, so I would tend to suspect that first. It is the case that certain kinds of epilepsy, like temporal lobe epilepsy, can show up with intense emotional symptoms, so I guess you can't rule that out either. But since this is a new experience, my vote is for the Topomax. Keep an eye on it, and definitely let your doc know if it progresses or is intolerable as is.

[Endless]

I really need some help on this one. Seizure? Lamictal? (I'm still on a tiny dose, 25 mg 2x per day) Aura?

My vision is extra-sharp, but the world doesn't look real. It's feels like I'm looking at something related to the world, but a different one. I am disconnected. There is terrible pressure in my head and my head hurts. This is really different from my usual headaches, which are like a cleaver chopping into my head (migraine).

I have an aura - for me the same feeling I have for about 50% of my seizures, it's physical and mental, like something is terribly wrong but it's really a strange feeling not quite like that with something really weird in my stomach. I'm feel trembly, but I'm not trembling.

I'd say seizure, but it's lasted over 45 minutes and not gone yet. If it's a seizure 45 minutes is not good. What is this, and what do I do with this one?

[Endless]

Update: About an hour and a quarter, and I can type fine now. The weird feeling (aura) is gone. The way I'm seeing things still isn't right, and the headache is getting worse. I'm feeling kind of scared - an hour+ seizure would be not so good. Tell me this was the lamictal.

[RobinN]

Tell me this was the lamictal.

It was the lamictal....



... or not.

Did you ever have it prior to being prescribed the drug?
I had to tie Rebecca's symptoms finally to each drug she tried because she had never had them prior, and has not had them since. It is very strong medication.

[Endless]

I"ve never had lamictal before these last 2 weeks or so. I'm thinking it might be part lamictal, part seizure because of the aura, plus after my post I curled up and slept a deep sleep for a couple of hours, which is what I do sometimes after a seizure. But a seizure wouldn't have lasted an hour+, so I bet lamictal side effect is in there somewhere.

All this is so hard to sort out. I"m still learning. But it is important to know what's what, to be able to get the meds right.

Ah, added: I've had this before I ever had the anti-epileptic drug's, but not this strong, not this long.

[ktbuttons]

i was having really low moments just like you described a lottt just around the time when my seizures were at their worst. i always notice that my emotions turn very.. extreme, high or low, when i start to have seizures more often. it is definitely out of character for me.
i'm not on any medication so i think it's very possible what you're feeling is related to the seizures? or maybe it is a combination of both?? i don't really have much experience with this,so that's just my 2 cents, but i've been wondering the same thing. hope ya figure it out & start feeling better

[Endless]

Hey, kt, Robin,

Good points.

Hey, does anybody know... wouldn't a 1-hour seizure pretty much have incapacitated me? I don't think I'd be walking around right now, so that couldn't have been it. Or can it be a seizure plus intense post-ictal? <still trying to figure it out.>

I'm back to normal now. Whew. It only took about seven hours. lol.

[ktbuttons]

yay, good thing you feel normal again!
i wish i knew the answer as well, but personally i feel like it is sort of.. something that just comes along with the seizures? like a side effect, almost. but again i really don't know for sure. i'm going to ask my doctor when i see him in a week or so.. hopefully he'll know what's up!!

[Nakamova]

I think whenever you transition on or off an anti-epileptic drug med, unpredictable things happen as your brain and body try to re-calibrate in response. For some people anti-epileptic drugs can provoke seizures or unusual side effects, or side effects that cause seizures (which was my experience with Zonegran). While it seems likely that Lamictal is causing these new symptoms based on the timing, the symptoms may change as you get used to the med. Or not! Keep tracking what happens, so that you and your doc can figure out whether the Lamictal is the right drug for you.