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wschroud

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Good Morning Everyone! :-)

I suffered my first grand mal seizure on Saturday June 7th in my living room in front of family and friends. I had bent down to get a pin out of my pants for my mother in law to hem them, when I stood back up I tried to talk. The only thing that came out of my mouth was a very loud groan (don’t know how else to describe it, but I was trying to talk and words didn’t come out, just some odd noise), and at that point I blacked out. My mother-in-law, husband and good friend saw it all happen. They said my face drooped, my eyes rolled into the back of my head, I fell and hit the coffee table and then basically bounced onto the floor. I bit my tongue so bad I had blood coming from my mouth and I had turned blue. They called 911 (obviously). By the time I finally woke up the firemen (first responders) had already come and gone and I woke up to two EMT's at my feet looking down on me telling me I had a seizure. I started crying, then they walked me out to the ambulance, all I remember is seeing my daughter sobbing by the swing set (she is 7) while being consoled by my good friend. We went to the hospital. Blood work and CT came up clean. I had my 48 hour EEG last week (6/17/14) and my MRI is this Saturday (6/28).

I believe I have had other "smaller" seizures since then but have been able to control them to the point where I don’t completely black out and lose control. Basically, I go to talk. And I get that same feeling I had last time, I can't get the words out. I feel that if I "force" them out of my mouth and try to talk that I will basically short circuit my brain and I will collapse again.

I am a 33 year old, I work full time, proud mama of 5 children (2 are my step children and 3 are mine) and a doting husband that is VERY worried about his wife. I don't have any answers at this point from any doctors, I don't see my new neurologist until 7/9 (the first guy I saw was a complete quack at some horrible clinic). They did not put me on any medications until I had my EEG & MRI. There is no family history of seizures or epilepsy.

Thanks everyone for reading! :-)
 
Hi and welcome to CWE,

Sorry your 7 year old had to see you in that condition, but glad adults were with you at the time, as seizures can be very scary. The 'smaller' ones do sound like SP/ CP seizures. I have CPs, where I cannot speak for a few minutes and reality is a bit altered for me. They used to go into TC seizures, or grand mal. And there is no family history of epilepsy in my family nor any head injuries, no brain tumor, no encephalitis or meningitis, for me either. With your MRI coming up, they should be able to get some info and let your neuro know.

Hang in there.
 
Sorry to hear about your episodes. I'm 58 now and my first episode was status epilepticus 1.5 years ago. I blacked out at work and woke 3 days later in ICU. Have been on meds ever since with 1 other time when I ended up in the ER. I felt like parts of my memory were blacking out the 2nd time. Besides that I feel normal, tired sometimes but more energy lately. I have been thru 5 doctors so far but I think I will stick with the last one even if he's arrogant. I'm having a cognitive test this friday too since I feel my memory is not as good as it was before....maybe just getting older but we'll see.
Hope all goes well for you....keep us updated.
 
You found the right place. Yours is similar to my story. I began having seizures early this year. They are under control for now with drugs. I have a good neurologist and the folks here help keep me calmed down. Peace Tracy
 
I was diagnosed with epilepsy 11 years ago when I was 26. My first seizure was a tonic clonic. No I only have partials, semi and complex, and I may have one tonic clonic a year.

My drs still have no idea what caused them. I also have no brain injury and there is no history in my family.

I've had 2 drs through the years. I had to switch from my first to second because the first moved. I've loved both of them. When you find a good dr who's there to help you it makes things easier. I was occasionally seeing my neuro's nurse practitioner but she was a real, I don't think there's a word to describe her. She didn't listen to my questions or ask any. She just told me what was going on and said that everything that was happening was because I wasn't taking my meds. I yelled at the office about her and haven't seen her since.

With the meds I'm on now I have on average around 7 complex partials. I'm not sure how many semi complex I have because at times I don't quite realize they are happening.

You've come to the right place. You'll beable to get and give good advice here. Nice to meet you!
 
You have to go to the appropriate section once signed in to the forum and click post new thread. You would need to go to The Kitchen.
 
Hi and welcome! I too suffer from grand mal seizures. As i have been told I let out a blood curddling scream and then go into the seizure. My first was in '04 at the bedside (I was an ICU RN), way to show my pts' confidence right? Next was in spring of '05 and then put on meds. The little bastards come and go at will whenever they want. On top of that I now have fibromyalgia. Like you all tests came up negative and they can't determine where they are coming from. It's frustrating I know and makes you want to scream. I have medicaid and it's hard to find a decent neurologist that truly cares. I was lucky somehow. The only fun part out of all of it waking up to find EMT's and police in your house and asking you (in my case once "can you tell me who the President of the U.S. is?), I was like dude, 1 minute ago I was making shepards pie and now I have 10 people standing over me, I don't know if I peed my pants, I'm not sure who I am, and you want me to tell you who our President is? Are you f-ing kidding me? When you wake up do your ears ring and do people sound far away? Anyway, welcome aboard you've come to the right place.
 
Welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I too for a long time would make noises from my throat, just before a seizure. It finally went away.

Welcome again.
 
Hi, I'm new here too. I well remember the first time, with my brain coming back online in the ER and some doctor asking me who the president was.

I feel so bad for my husband--hearing the epileptic shriek, seeing me with my face all bloody from biting my tongue, not knowing who he is...I really wish my disease didn't have to affect him.
 
Hello and welcome! I'm 56 now and I was first diagnosed in 1982 when I had a tonic-clonic seizure (the "proper" term for grand mal) in the middle of the night. My wife saw it and called the paramedics. In retrospect I probably had had seizures for many years before that, but they had either been partial seizures and unrecognized, or tonic-clonics in the middle of the night that no one saw. Since my diagnosis I have had four more tonic-clonics and probably 10,000 complex-partial and simple-partial seizures and countless subclincal ones. Here's a link to help you with the various seizure types:

http://en.wikipedia.org/wiki/Seizure_types

It's been kind of a roller-coaster ride, but overall I have been able to do pretty much whatever I want during these past 3 decades, including getting a couple of college degrees, having a for about 15 years, starting and running my own business for almost 15 years (there was some overlap with career and self-employment), raising a family, etc.
The seizures are far more frightening for my wife than for me. I think I may have finally gotten a handle on how to control them, though, and will start a thread on it when my busy season winds down. I own a bicycle shop and it gets really busy in the summer.
My advice to you is to learn all you can about epilepsy, to realize that your doctors don't know everything, and to keep track of every seizure you have, date and time, and to use the seizuretracker website to analyze the patterns. That was one of the things that helped me get control of my seizures and my docs did not know about the site. I have been seizure-free for 6 weeks now which is the longest period of time for that since I was diagnosed. Here's the link:

https://seizuretracker.com/

Best of luck and keep in touch with us.

Cheers!
 
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Hello and welcome to CWE.
I was dx'd at the age of two and I'm now 52 years old.I'm sorry your having seizures now.
My nephew who grew up with me saw me have plenty of seizures.
I've have absence,generalized,tonic clonic,complex partial,simplepartle sz's.
There doesn't have to be any history of epilepsy in your family for you to develop epilepsy.
 
Hi wschroud, welcome to CWE!

I'm sorry you are dealing with the aftermath of a new-onset seizure. It is normal to feel scared -- seizures are so strange and disorienting, and tonic-clonics (grand mals) look scary to everyone else.

Everything you described is "normal" for what happens during a grand mal seizure. The "groan" is a sharp intake of breath as the body sends oxygen to the brain. You "turn blue" because blood is sent to the brain and away from the extremities. The drooping and eye rolling occur as consciousness is lost.

Since you've only had the one, it's too soon to diagnose epilepsy (which basically means having had two or more seizures). Hopefully the different tests will provide information that can give you a sense of what is going on.

I hope you feel free to check back in here -- information and empathy can go a long way in helping cope with epilepsy.

Best,
Nakamova
 
Hi welcome to CWE. I am almost 57 and have been dealing with this beast since childhood. Keep your appointments with doctors, but more importantly be proactive with your own care. Take care of your physical, emotional, and spiritual self. The task in and of itself of coping with our fears is a daunting task. Have a good support system, and the grief process of accepting this condition comes and goes, so be vigilant with yourself. Best of luck with your treatment...don't forget your sense of humor
 
Garland said:
Hi, I'm new here too. I well remember the first time, with my brain coming back online in the ER and some doctor asking me who the president was.
Click to expand...


My memory is very bad after a seizure.

After my very first seizure I had no clue who the guy was that I had been dating and nothing at all about our relationship.

No I might know the person and who they are in general but I can't think of their name. I may know who my husband is, why he is in the room with me but I can't think of his name. Sometimes I'll know other people's names but not one persons name but who they are.
 
RE: Thanks Everyone!!

Thank you everyone for the very warm welcome! I wish my email would give me notices when someone replies!!

I had another tonic/clonic on 6/30. I finally saw the neurologist on 7/9, he diagnosed me officially with epilepsy (just having the 2 tonic/clonics).

When I was in the ER on 6/30 they started me on Keppra. My mood immediately changed about 24-48 hours of being on it and when I saw my doc on 7/9 he prescribed me Depakote. 1,000 mg per day.

I have damage to Wernicke's area in my brain, its a smaller part of the speech center. That explains why my issues speaking were trigging not only my tonic/clonic seizures but also my partial seizures. I fell this past winter while 35 weeks pregnant with my daughter (now 6 months) and hit my head on the corner of our cement garage. My doctor thinks the damage to my brain is from when I took that fall. I did go to the ER the night I fell, but all focus was on the baby as contractions were starting from the fall.

Its good to know I finally have some answers! But now on the Depakote I have the horrible side effects of the non stop drowsiness and no energy, not to mention the excessive hair loss (I am also blaming post-partum hormones), the ringing in my ears and also the moodiness. Not to mention from time to time, I cannot talk. I sound like the damn Swedish chef. No joke. We are trying just like everyone else to make the best of all of this, but now I am off of work and I feel horrible.

I see my neurologist (finally) again today. Not sure how they think I am going to go forward living my life feeling like a total zombie, with no hair, sounding like the Swedish chef? We shall see!!!

Thank you again to everyone for your kind words and support network!!
 
HAHA! I feel ya there!! After my last tonic/clonic it took me over 4 hours to remember what year it was!!
 
I have wrestling matches with my brain and memory. Exhausting!! People say I am a good listener...that's because I am trying to contribute to the conversation w/o sounding moronish!! I think my self esteem took a beating early on from this condition. I work on that constantly...this is the card I was given. Sigh...
 
seizures due to unknown cause

I am responding to the woman whose 4 and a half year old has seizures for an unknown reason. Seizures due an unknown cause are called 'Idiopathic'. I have idiopathic seizures, they are usually easier to control for some reason. I did research on it. My seizures are way easier to control. One reason may be that I have learned that getting enough sleep, and living a relatively regular life despite to my resistance to such a thing.

If medical interns can are allowed to get 8 hours of sleep, we might even have some doctors with epilepsy.
 
fyredeer said:
I am responding to the woman whose 4 and a half year old has seizures for an unknown reason. Seizures due an unknown cause are called 'Idiopathic'. I have idiopathic seizures, they are usually easier to control for some reason. I did research on it.
Click to expand...

My seizures are "idiopathic" also. Mine started out of the blue when I was 22 years old and they have NOT been easy to control. I've had CPs and TCs and have been thru brain surgery, many meds and now have the VNS because we haven't found anything to fully control my seizures. I've done lots of research on it, too. Depends on what type of seizure(s) one is suffering from whether they are easy to control. If they are only TC, they can be easier to control, but with mixed types, it is much more difficult to get control of seizures.

And with only partial seizures, they can usually identify the location of seizures.
They are the most common type of adult-onset seizures.

http://emedicine.medscape.com/article/1186635-overview#a0101
 
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