Hi! New here, and new to seizures. Lots of questions

[Literophile]

Hi there! I'll give you a little background (and I mean seriously condensed because it's a long story) so my questions will make more sense.

I have never had any serious health issues, but there's a family history of migraines, psychological disorders (though nothing more serious than bipolar), and seizures (according to my dad, who never had them tested).

I'm a junior in college. In November of last year , during the H1N1 scare, I got a stomach bug which my doc told me was H1N1. (During the school year. Yipee.) After six hours straight of violent throwing up, it was pretty much over except the recovery stage. Within 12 hours of stopping, though, I started getting these weird headaches. They were extraordinarily painful, but they only lasted a few seconds. I thought they were a side effect of the stomach flu, but after a few months of having them, I had them checked out by the doctor due to the fact that I was having up to 30 a day. Long story short, I was diagnosed by a neurologist with icepick headaches, a variant of migraine.

At about the same time as the headaches, I was having odd experiences that I call "yellow attacks". They mostly happened during choir performances. (I think that's because of the heat from the stage lights and the body heat and the thickness of the dresses we had to wear. Heat makes them worse.) I would be standing there singing, and then everything would get far away and yellow, starting with the right side of my vision. Bright, zig-zaggy spots would appear and I would find myself being supported by the ladies around me. I could usually carry on with the concert, but I eventually quit choir because I'm on the third riser up, and I didn't want to fall off.

Then I started having seizures. Little ones at first, but then they got worse. Within three months I've had over 100 seizures (and yes, I was counting for a while because I had nothing better to do). EEG, MRI, CT all came up clean so my neurologist said I have Psychogenic Non-Epileptic Seizures (PNES). The problem with that diagnosis? I've never experienced anything traumatic in my life. So I switched doctors, I'm getting referred to an epileptologist, and I'm going to have MORE tests done.

I have since been re-diagnosed with epilepsy. I have more than one type of seizure, though I'm not certain what they are. One LOOKS like myoclonic, one LOOKS like absence or partial one LOOKS like clonic (not TC), and I had my first secondarily generalized seizure yesterday. The weird thing is, I haven't ever been unconscious through a seizure.

I'm currently on 750mg of Depakote (250 3 x day). But I'm still having at least one seizure every day and sometimes at night, so I want to try something else.

So here are my questions:
Can I go directly from being on Depakote to being on a different medication?
Is it unusual that I've never passed out during a seizure?
Does anyone have similar symptoms?
Does anyone else wake up when they have an aura at night?
Is there anyone else out there who has just clonic seizures without the tonic (or the gin? fft? I can't find very much info about them...

 

[Nakamova]

Hi Literophile, welcome to CWE!

Good for you for being persistent about getting a proper diagnosis. One of the major frustrations reported here is with doctors who don't listen or take their patients seriously.

Ordinarily if you're going from one AED to another you need to taper slowly off the one while tapering slowly onto the other. The recommended time of taper may vary from med to med depending on the half-life in your system. My experience is that it's worth tapering (both on and off) even slower than recommended in order to minimize the stress on the brain as it adapts and the risk of certain side effects. The more time your brain has to adjust at each level, the better.

Many folks remain conscious during their seizures, depending on the type of seizure. It's also possible that you may be losing consciousness very briefly (for a second or two) without being aware of it.

A number of CWE members have mentioned being triggered by heat and lights (photosensitive epilepsy), and many also have nighttime seizures that wake them up. You can search using the tab at the top for other threads about these topics, and I'm sure folks will chime in with their details.

A few recommendations: Adding a magnesium supplement may help with the migraines. Keeping a seizure journal may help you isolate any triggers -- lights, diet, hormones, fatigue, physiological and emotional stressors -- and potentially avoid them. In addition a journal can help track any medication side effects, and monitor your seizures to see if they are changing or escalating in any way.

Best,
Nakamova

 

[Ann T.]

Welcome, Literophile!

Adding to Nakamova's info, if you can, please have a family member keep track of your seizures when you 'zone out' during your small seizures when you are conscious, yet unconscious @ the same time. Also, keep track of your seizures during your period /menses cycle. By keeping track of my seizures, I've learned that my worst seizures come 2 days before & 2 days after my menses cycle. And, do your best to control your stress level. Negative stress is another trigger for my partial seizures. Take care, stay safe, and once again, welcome to CWE. I hope that you find CWE a valuable source of information, interest(hobbies) & friendship. Best Regards!
Ann T.

 

[Endless]

Hi, Literophile,

Welcome to CWE! This is a great place with a lot of knowlegeable people. It's been a great help to me.

So here are my questions:
Can I go directly from being on Depakote to being on a different medication?
Is it unusual that I've never passed out during a seizure?
Does anyone have similar symptoms?
Does anyone else wake up when they have an aura at night?

If there is a serious problem with the Depakote (like allergy rash), some doctors take you off cold turkey and start you on a new one right away. But if the problem isn't serious, then you should be weaned off the Depakote very slowly, while you ramp up on the new medicaiton. Trust me when I say cold turkey isn't fun. I've been removed from 3 anti-seizure meds that way because of serious side effects, and it was rather hellish. Gradual is much better.

Similar symptoms...
Having everything get really far away is sometimes called "Alice in Wonderland Syndrome." Things get big, things get small, time warps, space warps, speed warps. It's mighty weird. I myself don't have things turn yellow when it happens, but I bet someone in here does.

I get the zingers across my eyes both from seizures, and postictal migraines.

I am also woken up by auras at night. For me they are like an electrical feeling like a bad chord, plus a feeling of forboding. I usually can't go back to sleep after them. They feel really icky.

No positive results from MRI, EEG, CT? That's not unusual, except for the generalized seizures. If you have one of those while you are hooked up to the EEG, they should pick it up. Have they done a video EEG yet?

Partial seizures are often not picked up, As I understand it, some of the reasons an eeg can not show epileptic seizures (when they are really happening) are:

- A seizure isn't happening at that moment.

- The seizure is happening in too small a part of the brain to show up. That's why they try to trigger a BIG seizure when in the hospital for monitoring. When the seizure spread from a small part of the brain to more of the brain, it can be picked up.

- The seizure is happening in a very deep part of the brain. The seizure has to be within a certain depth from the skin/skull, or the eeg might not pick it up. (Those of you with fear seizures, those may be coming from the amygdala, which is often too deep to be picked up)

- The abnormal waves are either very low or very high frequency, which traditional eeg's can't pick up. There are new gold leads that can pick these up, but they are only used at some leading-edge epilepsy research/teaching centers.

- The person has recent onset epilepsy, or long standing epilepsy with very few seizures. That means fewer permanent changes to the brain so there are fewer or no abnormal waves that would show up between seizures, and there may not even be sufficient abnormal waves during a partial seizure to show up on the eeg.

In other words, eeg's aren't perfect. far from it.

Hang in there, Literophile. I bet your doctor's next move will be a 5-day Video EEG, to try to pick up readings on some of your seizures. It's really boring but it doesn't hurt.

 

[Literophile]

Hi, Literophile,

Welcome to CWE! This is a great place with a lot of knowlegeable people. It's been a great help to me.



Similar symptoms...
Having everything get really far away is sometimes called "Alice in Wonderland Syndrome." Things get big, things get small, time warps, space warps, speed warps. It's mighty weird. I myself don't have things turn yellow when it happens, but I bet someone in here does.

I get the zingers across my eyes both from seizures, and postictal migraines.

I am also woken up by auras at night. For me they are like an electrical feeling like a bad chord, plus a feeling of forboding. I usually can't go back to sleep after them. They feel really icky.

No positive results from MRI, EEG, CT? That's not unusual, except for the generalized seizures. If you have one of those while you are hooked up to the EEG, they should pick it up. Have they done a video EEG yet?

- The person has recent onset epilepsy, or long standing epilepsy with very few seizures. That means fewer permanent changes to the brain so there are fewer or no abnormal waves that would show up between seizures, and there may not even be sufficient abnormal waves during a partial seizure to show up on the eeg.

In other words, eeg's aren't perfect. far from it.

Hang in there, Literophile. I bet your doctor's next move will be a 5-day Video EEG, to try to pick up readings on some of your seizures. It's really boring but it doesn't hurt.

Thank you for the welcome! I feel at home already!

That's what my auras feel like, too! I sometimes wake up in the night with one, and I'll be awake for hours. Sometimes I get four or five in a row and I can't get back to sleep. Very upsetting, to say the least. I already have sleep troubles that far predate these seizures.

When I had the EEG done (it was 3-day ambulatory) I had only had one small seizure, plus several "yellow attacks". I'm planning on getting another ambulatory EEG and possibly a V-EEG, but I dread it because the cement they use made me break out in a rash in the spots where the electrodes were. I had angry red welts for days after I washed the cement out. :|

Thank you so much for your advice!

 

[Westwind]

Can I go directly from being on Depakote to being on a different medication?

That's usually not a good idea. Generally it's best to slowly wean off one while slowing starting the replacement.

Is it unusual that I've never passed out during a seizure?

I don't know how unusual that is. I think I'd hate to be aware during a generalized seizure though.

Does anyone else wake up when they have an aura at night?

Once in awhile yeah. Recently I started having a scent aura, and that's woken me up a couple times. Once was the smell of fresh brewed coffee, the other was of a fireplace fire. I'm pleased they were pleasant odors.

But if I have a generalized seizure in my sleep, I don't remember having had any aura. And I'm awake if I'm having partials. Can't sleep like that.

Having everything get really far away is sometimes called "Alice in Wonderland Syndrome." Things get big, things get small, time warps, space warps, speed warps. It's mighty weird. I myself don't have things turn yellow when it happens, but I bet someone in here does.

Wow, never heard that one before. I've had the those symptoms since 3rd grade. Sorry, no yellow though. I remember sitting in the classroom, and the teacher seemed so far away at the front of the room. I 'knew' he wasn't far away, but I perceived it that way.

Speed warps? I had to keep my eyes closed when riding in a car for about a 1 1/2 years due my speed perception. 25 mph seemed like 60. Highway speeds were frightening.

Spots and tracers before my eyes....had started in 5th/6th grade.

 

[Aicila]

Speed warps? I had to keep my eyes closed when riding in a car for about a 1 1/2 years due my speed perception. 25 mph seemed like 60. Highway speeds were frightening

You shouldn't drive with your eyes closed...thats kinda dangerous. :banana:

 

[Zoofemme]

I am also woken up by auras at night. For me they are like an electrical feeling like a bad chord, plus a feeling of forboding. I usually can't go back to sleep after them. They feel really icky.

I'm still not sure I fully understand this one. Smell, taste, visual and sound I can wrap my brain around but this one perplexes me. It just may be that I don't understand auras very well at all since I STILL think of light and color when I hear the word :roll:

 

[Literophile]

Okay, so here's an update. I'm sorry I haven't been on to check all the replies, but for the last couple of days, I've been in the hospital for "SE"(you'll understand the quotations in a minute).

Sunday, I had two "TCs" in a row without coming out of it between. Half an hour later, I had another. Then, on the way to the hospital, I had another which they gave me a shot of some medication that begins with a v, but I don't remember. It stopped the seizure, at any rate. When I got to the hospital, I had two more in a row, which they gave me a different type of medication for--something that starts with "ad". The specialists weren't there, so they had to wait until the next day to hook me up to the V-EEG monitor. I think I had a TC before they hooked me up--some time before seven. I vaguely recall the nurse telling me I'd had one, but I don't remember it. After that they hooked me up. I had several attacks because they took me off the medication. I also had several "petit mals".

None of them showed up on the EEG.

So now I'm back to the diagnosis of PNES. :clap:

But here's my issue: The day before I went to the hospital, I had a "TC" (much milder than the ones they sent me to the hospital for, but still pretty nasty). I had just filled my drinking glass and sat down again, then I had it. When I eventually came to, I looked at my drinking glass and said, "Oh, who filled my drinking glass while I was seizing?" I've also had them in my sleep. And I've had several different types of the "Alice in Wonderland" things. Friday, I was writing a list for Costco (isn't Costco great? *siiigghh*) when the list shrank and I couldn't see the words anymore. I had to sit down for several minutes until it was gone. At the hospital, I was laying in bed (woohoo) when I suddenly felt a jolt downward and then I felt like I was falling very slowly through the ground and I saw pink and purple stripes flying past. Not to mention all the other things that have happened, like the headaches and the partials and just.... EVERYTHING!!!!!!

Does anyone have any insight into what might be going on?

(EDIT: I have a huge bruise on my arm where they first tried to start a line, and I have no less than 5 scabs from each time they poked me for various reasons. Not to mention the crick in my neck and the aches all over from having so many "episodes". )

 

[Nakamova]

They probably gave you Valium and/or Ativan at the hospital to stop the seizures.

Just because your tonic-clonics don't show up on the EEG, doesn't mean they aren't epileptic in origin. Although PNES is a possibility it's also possible that you're having temporal lobe seizures that originate deep in the brain.

Any guess as to what your triggers are?

 

[Literophile]

Any guess as to what your triggers are?

A little photosensitivity. If I play videogames or watch TV too long, I start having lots of auras.

 

[sandi]

Sorry

Sorry your not well, and you had to go to the hospital. Hope your better.
Did they change any meds?
Hey I've never had a real DX and never had a EEG, MRI, CAT shown anything

When I had a grand mal that lasted 3 minutes -hubby was there and watching
I couldn't see or respond to him for a few seconds - but I could fully HEAR HIM and KNEW EVERYTHING THAT WENT ON!

I Wondered if they sent you home with a rescue med? In case you clustered again!
That was a Bad Day! Again Feel Better

 

[Literophile]

Sorry your not well, and you had to go to the hospital. Hope your better.
Did they change any meds?
Hey I've never had a real DX and never had a EEG, MRI, CAT shown anything

When I had a grand mal that lasted 3 minutes -hubby was there and watching
I couldn't see or respond to him for a few seconds - but I could fully HEAR HIM and KNEW EVERYTHING THAT WENT ON!

I Wondered if they sent you home with a rescue med? In case you clustered again!
That was a Bad Day! Again Feel Better

Thanks! ((hugs))

No, they didn't change the meds. They told me to stay on the Depakote.

I can hear things when I have them too! What have you been officially diagnosed with?

No, they didn't send me with any rescue meds. Like they said, these are PNES. They usually don't give rescue anti-seizure drugs to people who aren't having seizures. (insert sarcasm here)

 

[sandi]

depakote

I have been officially Dx with everything and nothing Panic and Anxiety disorder,Depression, Menopause (LOL)
I was on Depakote for the first 1yr + after my accident - I couldn't handle it,
I was too sedated, too fat, almost suicidal.
Doctors assured me at the time that since I had been treated - and no seizures showed up I just needed to adjust my brain chemistry suppressed supposedly by my panic disorder.
That was also why I couldn't drive .
I was then placed on Paxil and had 2-3 grand mals in a week and then put on Xanax with that and told that I needed to suck it up nothing wrong that I couldn't get over if I worked on it.2-3 doctors told me the same thing.So what was I to know. I stopped talking about It, I hid, shamed that no one know I had issues like oh not being able to ADD- or Not remembering things with my kids.

I would add I have never had surgery or been ill enough to be hospitalized since Rheumatic Fever as a child- Gave birth to 4 children naturally and was as stubborn and strong as a horse until that car accident.

 

[Literophile]

How awful to be told that. That's basically what they told me, too.

I've never been diagnosed with panic disorders, never experienced anytihng traumatic, never been seriously injured... It's just so weird. It's like these are out of the blue.

 

[sandi]

Dx's

Yea I know what you mean, With some of the things they say -you wonder Where they got their shingle.
I am learning and getting so much more ammo and confirmation from this site than I ever have before-
When ever I would ask Dr's they would brush off .

Also I have a bit of Damage and so I can't always use the right words,terms or remember when I go to the Dr.
I thought about the Journal- because If I could remember to keep it up It might be helpful-I have a few slips of paper laying around where I jotted notes - but I usually can't think to do such things -just like I can't remember the stove sometimes
I Lucky the dog to reminds me!(LOL)

 

[Literophile]

So, I'm probably overreacting to all this, but it's rather scary and very new to me. Thank you to all of you for putting up with my ignorance.

I have another question (gee, what a surprise, lol) but like I said, I'm ramping down off the Depakote. So yesterday, I only took two and this morning, before I could even take my first one, I had a "seizure". It was shorter than usual, but it still felt like forever! So here's my question: Do you think the Depakote was working like a placebo or was it actually reducing my seizure activity?

I probably read too much, but I came across something that seemed interesting to me: "Sometimes a person remains fully aware during a frontal lobe seizure while having wild movements of the arms and legs. Because of their strange nature, frontal lobe seizures can be misdiagnosed as nonepileptic seizures. In many cases of frontal lobe epilepsy, brain wave tests (electroencephalograms) may not show the changes characteristic of epileptic seizures."

 

[occb]

Hello Literophile,

I haven't been on the forum much the last few months, but taking a peek back in, your post caught my eye.

My partner has had similar experiences to yours (minus the tonic-clonic activty), and is still undiagnosed at the moment, but we suspect that he may have frontal lobe epilepsy. I started a thread in the library for reasearch about frontal lobe epilepsy here: http://www.coping-with-epilepsy.com/forums/f22/frontal-lobe-epilepsy-research-8849/

You can look through and see if any of it sounds familiar, and even add information you might find online about FLE.

 

[Literophile]

You can look through and see if any of it sounds familiar, and even add information you might find online about FLE.

If I could press the "thanks" button more than once, I would. Instead, I'll just say thank you, thank you, thank you for these resources!

Hugs for you and your partner and I hope you can come to the right diagnosis!

 

[occb]

You're welcome, welcome, welcome! This isn't a particularly well understood or known type of epilepsy, so any information we can get is golden.

We'll get to a diagnosis at some point, and I hope you do too! *fingers crossed*