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

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Literophile,

Ramping down from your meds? A decrease can trigger a seizure. In fact, any change in meds cause seizures for me. It can be a change in dosage, a change in my medication schedule, a change to a new medication, or even taking my meds as little as an hour late. My body HATES changes of any kind in medication, and does not react well.

So, get ready for perhaps a bumpy ride while you switch your meds. Or, maybe it was just this time, and the rest will be a piece of cake. Everybody is different.
 
Lit, I just read up a little on your history -- it seems this issue came on suddenly in your life. Aside from the flu, I was wondering if anything else changed in your life around that time; for example, has your diet or lifestyle changed, have you changed your method of birth control (assuming you're a woman).

The reason I ask is because I have met one person whose sudden and severe FLE was brought on by the Mirena IUD (peaking a few years after getting the device), and a few others whose change in diet and activity level have brought on seizures. It's bizarre stuff.
 
Endless said:
Literophile,

Ramping down from your meds? A decrease can trigger a seizure. In fact, any change in meds cause seizures for me. It can be a change in dosage, a change in my medication schedule, a change to a new medication, or even taking my meds as little as an hour late. My body HATES changes of any kind in medication, and does not react well.

So, get ready for perhaps a bumpy ride while you switch your meds. Or, maybe it was just this time, and the rest will be a piece of cake. Everybody is different.
Click to expand...

Since I've been taking less, I've been miserable. My auras have been lasting for hours, sometimes all day, like they did before I started taking the medication. I sincerely think there is something organically wrong with me, and that PNES is at least partially a misdiagnosis.

The petit mals have been getting worse. Last night, I was watching an old episode of Dr. Who when I had one. When my sis noticed I "wasn't there" (a few seconds after I zoned out) she paused it, but when i came around and she started it again, I didn't know what was going on in the episode because of the part I missed. She also told me I shuddered once during it, like it was going to turn into a secondarily generalized seizure, but I don't remember doing that. After that, she went to bed, but I couldn't sleep, so I stayed up and played rummy with my sister in law. I had another like that, and I couldn't remember whose turn it was.

So today, I'm taking my regular dosage of Depakote.

Thanks for the warning about the meds change! I hope I can retain my sanity long enough to enjoy the benefits... :banana:
 
occb said:
Lit, I just read up a little on your history -- it seems this issue came on suddenly in your life. Aside from the flu, I was wondering if anything else changed in your life around that time; for example, has your diet or lifestyle changed, have you changed your method of birth control (assuming you're a woman).

The reason I ask is because I have met one person whose sudden and severe FLE was brought on by the Mirena IUD (peaking a few years after getting the device), and a few others whose change in diet and activity level have brought on seizures. It's bizarre stuff.
Click to expand...

Nope, just the flu. Never had any problems before that, but twelve hours after it, the headaches started. And yes, I am a woman, but not on BCPs of any kind. :)

About the diet, no I was eating the same college cafeteria food as I have been since I started college.
 
meds

I'm glad your okay- Do Drs what you to go off or you want to ?There are side effects on withdraw as well. I was worried.
Depakote pretty nasty for withdrawal. I managed to get help withdrawing from the health food store and slowly going off .
I'll try to remember what I used-Believe it or not Dr said oH just stop taking it!
Melatonin for sure Kava,, Magnesium There was more I'll try to remember
I weaned down little by little and then used the natural stuff to get off for good.
I think it took 3 months.I was on for 1 1/2 to 2 yrs roughly.
 
Fortunately I've only been on it for a couple of months, so I hope it won't be too bad. What they told me over the phone was that they wanted me to go off it, but I have an appt with them so I'll wait until then.

Thanks for the advice!
 
quick reply

Hello! Welcome to cwe. Since this is coming via phone I have to make this quick. :) Here's my 2 cents...
1) keep a journal...see if you can figure out all you triggers
2) invest in filters to put over your tv screen, computer, etc...
3) try taking magnesium (i'm 5'3" and take 1000 mg per day split into 2 doses) helps with migraines and seizure control
4) if you think kids may someday be in your future tell yyour neuro now. it may effect the meds your given.
5) start taking folic acid now (some of the meds can cause deficiency and it helps protect against birth defects)
6) keep track of your periods....you may find you have more seizures near or during your period.
7) dont be surprised if your body changes over time. I went years with no aura and now after having a baby I get auras.

hope this helped!! :)
 
Hi, Literophile! Hope you are doing better. Y'know, when I was on Depakote, it did some strange things to my brain & I was a true happy camper to get off it. I just finished reading your post about the strange effects that Depakote has/had on people. For instance, I'd be up walking around, then WHAM! I'd drop to the floor, head hitting the linoleum like a round watermelon rolling off the countertop, then my whole body would twitch uncontrollably while I watched it twitch uncontrollably. I'd try to get it to stop, but most of the time I'd fall asleep on the kitchen floor, only because I was too terrified to move. Then, after I 'tossed my cookies' on my mom's beloved car interior, my neuro @ the time weaned me off it, saying very non-chalantly, "The lamotrigine taken in combination with the Depakote raised your Depakote to a poisonous level." So, in a nutshell, Depakote wreaked havoc on my system & I'm so happy to be off it. I'm happy to hear your neuro's weaning you off it, too.
 
I'll be happy when I get off it, too. I just hope we find the right solution! :/ Right now, they want to take me completely off medication, and I'm worried that'll make me have more, like I did before when I was having up to five or six a day.
 
Hey everyone! I made a video of what my "seizures" are like, if anyone is interested.

 
I checked out your video -- very interesting! Everything you describe sounds like seizures, or at least abnormal neurological phenomena on the spectrum with seizures. Do your docs suspect that the swine flu led to the seizures? There are a number of cases where that has happened.
 
Viruses have been known to cause seizures.
Also you say you eat the same college food.... from my experience, college food is largely refined foods. Lots of gravies, and they even put something on the lettuce to keep it fresher longer. We all had GI symptoms from eating the salads. It doesn't have to be a quick response to nutrition. One can be sensitive and it takes years to see symptoms.
 
Nakamova said:
I checked out your video -- very interesting! Everything you describe sounds like seizures, or at least abnormal neurological phenomena on the spectrum with seizures. Do your docs suspect that the swine flu led to the seizures? There are a number of cases where that has happened.
Click to expand...

Nope. I brought it up and he brushed it off immediately. Acted like he didn't even hear me except a wave of his hand.
 
RobinN said:
Viruses have been known to cause seizures.
Also you say you eat the same college food.... from my experience, college food is largely refined foods. Lots of gravies, and they even put something on the lettuce to keep it fresher longer. We all had GI symptoms from eating the salads. It doesn't have to be a quick response to nutrition. One can be sensitive and it takes years to see symptoms.
Click to expand...

:agree:
I KNEW there was something fishy about their salad.... Never ate it because it just looked... suspicious. Like it might bite back or something.:roflmao:
 
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