HELP! Random Grand Mal Seizures
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lyns87 posted:
Hi,
I just wanted to see if anyone was in a similar situation, since I haven't really gotten any good answers for this.
I'm 24/female. When I was 15 years old I had what the doctors tell me was a grand mal seizure. I was reading at night before bed and it felt like my jaw was trying to "unhinge" itself (very hard to describe so sorry if its a poor analogy) and I made a weird groaning sound. Next thing I know, I wake up with paramedics in my house. I had these 3 nights in a row, all times, i was reading (connection?). The doctor did all sorts of tests, you know the drill. What he came to the conclusion of is that it was an anti-depressant (wellbutrin) that I had recently been put on. They changed my medicine, I had more tests, saw more neurologists, etc. But the seizures went away. I eventually stopped taking anti depressants altogether. I didn't have another seizure until a few years later. out of the blue. Talking on my porch with my fiancee (at the time). the same weird jaw sensation and groaning noise and I fell forward next thing I knew I woke up in the living room. I had bitten a huge chunk out of my tongue, could hardly remember my daughter, and any of the events of the day. After these seizures my memory feels out of sorts...like all the pieces of the puzzle are there, I just can't put them together. I am told I jerk quite a bit, stop breathing now and then, bite my tonge, etc. I have never had one recorded on monitors so I have never been officially diagnosed with epilepsy therefore never on any anti seizure medications. My concern is that I wonder how it could be the medication if I haven't been on ANY medications in several years, and also at the time of my last seizure. Also, I have a daughter now who is 5 and the constant fear of me getting into some kind of accident, or the pure stress of not knowing if/when I may have another seizure again. What will I do if my daugher is home alone? should i even drive? Have these types of random grand mals happened to anyone else? Please help, any advice would be greatly appreciated.
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anthonybrownii responded:
I would say see a nuero who specialty is epileptology and like you said they tested and my guess is they were normal I've had various sz's for 43 yr's and they've comeback ok. I also went a period of time not know I was having petit mal or complex partial sz's which you stare into space but know everything is happening but you can't move stress is a trigger for mine and are you using flourescent lights when you read you could be experiencing Photosensitve sz's they can also happen on very bright days so get checked out please. and only drive when necessary until they can atleast treat it in some way.
 
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dancer86442 responded:
Hi Lns,

There are lots of things that can trigger seizures. Like anthony said "It may be the lighting". Best way to figure Any of this out is to keep a Daily Journal. Seizures or Not! (See Journals under Tips? Then if/when one hits, you or DRS may be able to figure out what triggered it. For a list of Triggers visit epilepsytalk.com & use her Search for the article she wrote on this subject. You don't have to join her site to read the info. Only if you have questions. OK? Site is listed in Tips &/or Resources. Keep in mind: Triggers are Not the same as Cause! For now, don't worry about Cause! Just Remember: Triggers Can be Avoided!

As for your daughter. My daughter was 5 when she witnessed my first Gran Mal since early childhood. But, she didn't tell me at the time. I found out after I joined the AF. Clik on my ID for my Profile/story. So what to do? Visit efa.org &/or epilepsytalk.com for a list of books for All ages. The books will help her understand & can teach her what to do & what to watch for. You can use hand puppets as Visual Aid, to Help her, too.

Should you Drive? NO! Not until you are seizure free for at least a yr. efa.org, also, can tell you what the DMV Laws are in your State. Driving can be restricted for 3-6mths to a YR depending on the State you live in. But, Research has shown it is Best to wait at least a YR.

OK, a DR hasn't confirmed you as having Epilepsy. Did you know that 2 or more seizures Qualify you as having Epilepsy? As for medications. Well, once you start having seizures, it is said your brain trains itself to have More. Seizure activity can be Random. Mine were. That's why All my tests have been 'normal'. Except for the most recent EEG. It was a Portable 48, maybe 72hr, EEG & showed Wavy Line Syndrome. Which my Neuro neglected to tell me was a 'seizure'. There are no symptoms/activity during Wavy Line Syndrome & they occur in your sleep. This has been noted mainly in infants/children. But, I am, obviously, not a child anymore. Suggestion: try to schedule your EEG's during Hormone changes. Week B4, during Or after?? menstruation. These are called Catamenial Seizures. More Info under Resources.

BTW: What you have experienced B4 & after your 'episodes' is perfectly 'Normal'. Dazed, confused, sore/stiff, chewed tongue, etc. Try to Sleep after your episode. You will wake up & most of the side effects will be Gone. As for chewed tongue: Rinse w/ warm salt water several times a day, especially after meals. Preferably Soups or soft foods. It Helps heal faster. Recovery Time is different for each of us. Used to take me a week, at least, to get back to 'norm'. Others are OK after a few minutes, others' a few hrs.

Another idea to consider, since you aren't on meds yet, is try changing your Diet. epilepsytalk & coping-with-epilepsy (also in Resources) has Lots of Info about 3 different types of 'Diets' that have been proven to be effective in controlling seizures. You may need a Nutritionist or Homeopathic MD to help you get started.

Hope this Helped. Please keep Learning & keep us posted if you have More questions/concerns &/or activity. Keep in mind: You Aren't Alone! Epilepsy affects over 5 million people world-wide & Researchers expect/claim there are 500,000 new diagnoses, just here in the States, every yr.

HUGS & Love, Candi
 
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hula_dancer73 responded:
hi my name is nancy or hula_dancer.

Sometimes in rare cases reading can actually bring on szs.

So can writing and music and even thinking can all bring on szs that are rare.

You need to get a journal going to document EVERYTHING that goes on around you before during (that is for someone else) and afterwards.

What were your surroundings, what was going on, what were your emotions at the time etc. SOme people will even put their foods and driinks in to it as well 'cause sometimes that can fire off a sz.

Wellbutrin is known for triggering szs in people with or without a hx of epilepsy or szs. after it gets to a certain dose it will start causing problems. I used to take it as well and was removed from it after it started causing non-stop Migraines, I was not on a high enough dose to cause szs. All anti- depressants have the potential to cause szs. some more than others.

You may have a sz disorder and you best get it checked out before it is too late. You have that wonderful child to take care of.

You need to go and get a referral to a neurologist from your PCP and then he will run tests on you like an EEG to see what is going on and if you are really having szs will try the first-line drug for that sz type.

EEGs show the electrical activity in your brain and can be recordered digitally, in the office, at home or in the hospital.

with what you have said is going on then you probably have a convulsive sz disorder and I am NOT a doc but that is just my opion of what you wro te.

you need meds for szs so you can get relief.

I live in Hi in Honolulu and they are having probelms with several of the anti-depressants and are wanting to pull them and not have them but are waiting to do it. They still help people.

hope that helps some.

hula_dancer
 
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lyns87 replied to hula_dancer73's response:
Thanks guys for all the responses.

I have been to several neuros, had many EEG's MRI's, sleep deprivation eegs, portable, 24 and 72 hour, was even at the Mayo clinic and kept the damn things on for 3 days. No luck.
I really hated the last neurologist I saw before I stopped going to Dr.'s completely. She wouldn't put me on meds because she didnt feel comfortable putting me on anti-seizure meds or diagnosing me with epilepsy since it wasn't a regular occurrence.
I have been seizure free for over a few years and I do drive, but worry I shouldn't.
Recently I've had a few small moments when I have been reading or driving that I feel a sort of weird feeling that makes me think I might be about to have a seizure. I didn't but it makes me nervous. It just brought all this fear and uncertainty to the forefront of my mind and I don't know how to deal with it. I've only had 4 or 5 seizures in the past years so I don't want to overreact, but it definitely impacts my life. Makes me nervous, scared, feels like I have no control over my life.
My husband recently asked me "Do you think there will be a time when you won't worry about having another seizure or will you always worry about it?" And I felt immediate sadness. Although these are not daily episodes and they're not completely ruiining my life...the fear and uncertainty is. I dont think I'll ever be able to put that worry out of my mind forever
 
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dancer86442 replied to lyns87's response:
Hi Lyns,

I fully understand. Which is why I suggested trying a 'Diet'. The Diets used for people w/ Epilepsy do work. So, please chek it out.

As for your tests. That's to be expected. If you aren't having seizure 'Activity' at the time of testing, nothing will show. A Clear MRI is Good, though. That Means there are no Cysts, tumors, &/or lesions causing the seizures.

I'm sorry I don't have the link recently posted on FB about Seizure detecting Watches. I believe they are now available in the UK. But, not here in the States, yet. That I know of. Use Search w/ This Community toolbar to see if I posted Info about this, previously.

Honey, you can Live in Fear. Or you can Face your Fears & be rid of them. Yes, you Can! Education Is the Key! That & communication w/ others' who know how you feel. As I suggested earlier: Note your Odd Feelings & keep up w/ your daily Journal. Seizures or Not! Continue to educate yourself. There are over 40 Epilepsy Types & thousands of causes. (Also a Subject posted in epilepsytalk.com.

A Fav Logo from a children's EP Summer Camp: It takes Brains to have Epilepsy! If kids can overcome their Fears, so can You! Think Positive!

Another suggestion: You never Know when you mite have another 'episode' so ask Hubby to keep a Video device Charged & Ready! My Daughter was in an EMU (Epilepsy Monitoring Unit) 3 times over 10 yr period. First time activity was recorded. Second time: None recorded. So, they set the 3rd time to coincide w/ hormone fluctuation & sure enough there was Activity w/in 3 days. Some emu's will keep you up top 10 days. I think/Know a Personal Video is Much Cheaper & Easier.

Love Candi
 
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hula_dancer73 replied to dancer86442's response:
hi Candi,

I have more szs around the time of my menses, but have never been dxd with catemanial szs.

HE said mine are too active and unpredicatable to be dxd as having that type of sz type.

HE keeps saying TLE on the leftside.

I saw the paper he gives me to turn in to get scheduled for anoterh appt.

He writes Complex Partial Szs and Migraines.

my first VEEG I was kept for 9 days.

The second one I was kept for 6 days,actually is was about 5.

Teh good news is that I got the resuts of those 2 EEGs I told you about. They came back clean. I am finally responding to my AEDs. It has taken LONG time for this to happen. All my o ther EEGs of various kinds were ALL abnormal.

HE has me 200 mgs over the adult dose of both Lamictal and Vimpat. So I am taking 600 mgs of both,and then 3 mgs of Klonopin.

He added the one mg in the am to try adn stop t he nocturnal szs I was starteing to have. He added that to the other 2 i had. i have only had 2 or 3 since that and that was about 9 months ago.

just thought I woudl let you know.

THe sx came out well and had only one complications was running high fevers while I was in there and had a sz as a result, but what a better place to haeve one than in a hospital.

My RNs were in there when it happened and my mom had to use the magnet on me to get it stopped and it did and only swept me once and it only lasted less than 2 mnutes.

The RNs had only seen it in their textbooks and on DVDs and never saw in done on a living person and they thought is was intersting and cool. NOT the sz just the VNS part.

So my mom left and left the magnet with them but I was so doped with Morphine pump and opther stuff i was sleeping.

Ihad fevers that ranged anywhere from 100.4 to 103. 5.

NASTY!

But the sx pain is still there and my face is still VERY swollen.

He had to stitch up thru 4 layers of skin and I had 25 stitches on the outside in front of my left ear.

in case you are wondering what sx means. It is the abbrevioation for surgery.

I have all kinds of short hand stuff due to my training.

Just thought Iwould let you know.

I am back in Hawi'i now FINALLY!

I got so sick of PHX and was run into the ground with all of my appts.

Well Ibetter gett going for now.

hula_dancer