Tonic Clonic ( Grand Mal ) Seizures / Epilepsy

Tonic Clonic ( Grand Mal ) Seizures / Epilepsy

  • Affects me occassionally

    Votes: 66 40.2%
  • Affects me frequently

    Votes: 23 14.0%
  • My Tonic Clonics ( Grand Mals ) are controlled

    Votes: 59 36.0%
  • My Tonic Clonics ( Grand Mals ) are uncontrolled / poorly controlled

    Votes: 50 30.5%
  • Restricts me from doing things I would like to do

    Votes: 63 38.4%
  • I've been declared intractable / refractory

    Votes: 10 6.1%
  • I am on too many / too little medication(s)

    Votes: 19 11.6%
  • I feel that Tonic Clonics ( Grand Mals ) isolates me

    Votes: 43 26.2%
  • I feel Tonic Clonics ( Grand Mals ) have ruined my life

    Votes: 36 22.0%
  • I am undergoing alternative methods

    Votes: 16 9.8%

  • Total voters
    164
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T/C while awake

I had been lucky (I guess) that for the first ten yrs of have T/Cs that it was while I was asleep and would happen either as I was waking or just as I was falling asleep. I the sleep state that is after you fall asleep but before you are in the REM state. Two yrs ago though that seemed to change and I started having seizures while awake. The first one I had was frankly the scariest thing I have ever been through and I hate every time it happens.
I was sitting in a chair across the room from my husband and daughter, we where all watching t.v., I suddenly started having the usual sensory partial that I commonly have several times a day, but this time it was different. Instead of being on either the right or the left it was on both side at the same time. At the same time my heart started to race and I could hardly breath. I looked across the room at my family and tried to rise from the chair and to cry out for help, but could do neither. I was paralyzed and forced to just watch as my brain did to my body what it wanted totally without my permission. My chest was hot from the increase in heart rate and the lack of air. When I could not speak or stand I really began to panic. (the really weird thing was that this all seemed to be happening like in "movie time" I knew it could of only been seconds or at most a couple of minutes that this whole thing took to take place, but to me it seemed to take for ever) I finally managed to force myself over and fell to the floor. At that time the people in the room realized that something was wrong and came to my aid, just as I went out. The last thing I heard as it all went black was my daughter asking my husband what was wrong and him replying "Oh God." I woke up later, still on the floor, but on my side and with a pillow covered in my own blood under my head. I could not hardly stand to look at my family cause they had the typical after seizure look on their faces but their eyes had a look of true fear, a fear they would not voice but that I could see. I had a horrible headache and could hardly move. It was one of the harder seizures I had had.
For awhile I did not have another one at least not awake, but then one afternoon while in the shower I had the same sensory partial I had had before, on both sides and before I lost all control of my body I managed to hit the shower handle and the floor so that the water was off and I was on the ground and some what safe.
I also have found, and my doctor has no idea how I can do this, that if I can catch myself during the first few seconds of the sensory partial and I can ina sense "distract" my brain fromthe seizure with lots of movement, especially walking and hand rubbing, then I can stop the seizure from progressing into a full blown T/V, but the window is so small that I don't always do it. The doctor tried to catch that on tape and stuff while I was in the hospital at a video eeg but I wasn't able to even try because the only seizure I had was while I was asleep.
I have watched lots of horror movies and been through a lot of scary things in my life, but I have to say that a fully awake T/C is the scariest thing that I have ever been through and I would never ever wish it on any one.
 
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I had my first case of Grand mal (tonic clonic) Seizures in front of everyone at wal mart. I had everyone telling me to take my meds, I kept putting it off, and putting it off. I also was hitting the diet cokes left and right. On June 4th, 2007, @ 11:00 to 11:20 am, I just started my shift at wal mart as a janitor, I usually clean the bathrooms in different order. I started in front of everyone at the family bathroom. I got me some paper towels. I was in the process, I started rotating twice with my finger pointed at everyone, then I went blacked out. I disconnected from my own body, I could not hear nothing, see nothing but blackness, and could not hear anything, I also forsaw my own boss telling me I had seizures before coming out of the seizure spell. I asked my boss after this happen, I said what am I doing on my back. I recalled seeing different people looking me in the face. I was asked tons of questions. I replied honestly to my paramedics and my boss. I refused to ride in the ambulance. I rode in the car with the boss of mine. I arrived at emergency room. I was still disoriented.

I went on about my business. then June 6th. Approx 8:30 to 9:00pm at night. My live in girlfriend come running over to where I was during the seizure attacks. She called 911, then she called my sister,my brother in law, and my mom to have them meet me at the apartments. My own mom told me I did not knew her when she saw me and I saw her. Then upon arrival to emergency room, I was not have any oxygen hose on or any medical devices hooked up and operational. My mom looked at the dr at the small town. And demanded that he call Scott & White in Temple texas. Then I had no choice but to ride in the ambulance to Temple. The lady named Ryan was my paramedic at the time. She kept me calm and collective. I was crying a little bit because the seizures hit me. Then upon arrival at the hospital er. I had several tests done on me, the doctors at the Temple emergency room did not know what was going on. I have vomited violently in front of everyone. I kept on and on. It is an experience I will never forget. I stayed in the hospital for almost a week.

based on the stay at the hospital. I was lost. I had to find out on my own. I found out I consumed enough aspartame that caused me numerous problems with my epilepsy. I looked for everything that had sweet and low and diet. I told my girlfriend we will switch the diet plan. After doing so, I lost over 80+ lbs in my body weight. I went down from almost 300 to 220 in a period of 2 to 3 months. I lost my double chin I looked almost like I took off 20 years off my life. I started sleeping better, then I started having sleep apnea. I have no problems since I have the treatment for it. I am pretty well now.
I take alots of meds though, I am pretty stable, DPS wanted to take my license away from me, I contested it and went to a hearing. I told the judge that I am stable with no re-occurence of seizures. If you want to check out how many meds I take. You will be surprised.


Please check about me on my pro.

Have a wonderful day everyone. :pop::bigsmile:
 
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I have had 2 Tonic Clonic Seizures, as I am aware of, I'm adjusting medications right now. Mostly Partial Complex.

Billy :)
 
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May sound strange, but Klonopin actually stops my Tonic Clonic Seizures, yeah I'm on Valium, but Klonopin does it quickly, it's odd, a medicine that caused me T/C's, Paxil, Effexor, Seroquel, also Xanax, really odd.

I say a good diet helps, though I still haven't found a really good diet, hopefully I will, Oatmeal helps it seems :)

Billy :twocents:
 

Cinnabar

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Billy, Klonopin has anti-seizure properties so that's most likely why it stops your Tonic Clonic Seizures. I take it in combination with Lamictal and have been seizure free for a year.
 
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Hi All!

I have epilepsy for 19 years (will be 20 yrs come August). All my seizures have been tonic clonics. For the 1st 17 years or so I didn't get any warning at all - however in the last 2 years or so I've been get a warning before them - buzzing in the ears - unfortunately the warning doesn't give me any time to get myself to safe - as it only gives me about 1 to 3 seconds then the tc.

Luckily for me my epilepsy is controlled :) however, not as controlled as it once was!!! :-(

Susan

Miss Choccy
 
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as much as i hate to put the mockers on all this i think epilepsy has altered my life for the better sure id love to be without it but hey if it wasnt for epilepsy id probably be stuck in a 9-5 job that bores the pants off me instead of this i spend days on end out on markets with 12-15 big birds of prey aroud me teaching the public about them and i love it
 
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Hello
Forgive the rambling .
In reverse or at least what I can remember of it I must have had a major gmal on wed. night hitting the wood floor the table and the edge of a wall .
I "feel" it must have caused a concussion and left me with a bad headache some vision trouble a little numbness here and there and an ever changing postictal state ,confused,short minded,a slight fever for 3 days a lot of partials ,no appetite ,all the other things that you have heard before the soreness etc. I have been much worse actually .
I did some quick math a while back and figure I have had over 1,000 gmal type szs. I think I can safely say that I have been status numerous times
I was discussing this with several long time e.r. workers and a ambulance e,m.t. who is also epileptic and 2 of their mouths stayed open in AWW while I was describing just a few of the times I have had szs and length and what I did and the others have done etc.
ALL of them said they would have signed off on me being "status" . a little scary.
I honestly "feel" I have had auras all my life ,that head rush we all get is a lot longer with me all the funny little things that I have come to understand are different than most other people .
My first gmal was very long and the effects from it resembled a stroke
leaving the left side of body limp and numb ,my lip drooped, my speech slurred, fingers and foot numb. WOW it did not scare me at all and like a good drunk I just got drunk again . lol "stupid"
I went over a year without even being treated because doctors just saw it as alcohol withdrawl and even though I was only 30 something it was just assumed I was drunk.
I got sober and the szs got worse and I had between 1 and 5 gmals a mo for many yrs never letting them slow me down a bit I thought of them as an annoyance more than anything . lol.
In that time I had them during the day ,in the morning, in the evening, when over heated, I know every type of sz except "drop" szs .
I used to have long warning signs ,the whole list applies to me ,loss of speech,tingling, slight fever , one eye twitching , the whole list. But I did not understand it and would move around ,try to tell others and geneally look like I was freaking out BEFORE I had a gmal.
For about 3 years I have had clusters of szs and I will have 3 gmals in succession with a small break in between . most of those earlier szs were between 15 and 30 min long .
The meds I take now have reduced this time to just a few min. and I am usually not as sore but my mind is fried for a longer period.
I think the meds I take now are causing the partial szs I have .
My gmals are nocturnal and usually in the sleep pattern right before I wake up . I sleep walk now also and that scares me because I am afraid if I do the wrong thing someone would assume I can not care for myself OR my daughter . Rick :e:
 

Aubrey

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I am so frustrated. I seem to "honeymoon." And seemingly that may be over. Had quite a dandy breakthrough in the neighbors' yard last week Thursday. Then I took a nap in their yard. It still hurts to eat. The upcoming job interview and taking care of my other, elderly neighbor at unpredictable intervals was just stressing me out, I guess. I keep hoping that something is working, you know. But, of course, no.
 
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I have only had Tonic/Clonics, and they only occur when I am asleep. Luckily, that usually means I am in bed when they happen, but not always... I really don't know if the medication I take is doing anything, as after my first seizure, I went 4 months with no meds, then had another one. They put me on meds, and I again had a seizure 5 months later... After doubling my dose, I am waiting to see if I make it 6 months this time...
 

Ori

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After reading some of the above, I'm so glad I'm unconscious through my tonic-clonic seizures. I started out having them mainly during the day, but now they happen most often at night. I did come back into consciousness at the tail-end of one recent seizure just in time to see my arms shaking. Normally I experience just the aftermath - gasping for breath, feeling disoriented and extremely tired.

Vimpat seems to be working for me. Fingers crossed. Frequency has been between once a week and 4 times a week. So far this week, none. :)
 

C0urt

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had a serious grand mal lasted about 45 minutes in my favorite indie coffee shop, was very embarrassing. has been hard to go back.

spent the past couple of weeks just sitting around the house wallowing around the house feeling sorry for my self.

it is kinda sad

also been dealing with a med change. and a weight change, I am 20 pounds lighter in the past few weeks. just starting tegretol and topamax, and been hallucinating something fierce past few weeks.
 
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I had a tonic clonic while crossing the street. My friend siad I did a little turn.and then fell straight to the ground. I can't chew either. Stitches on my chin. I'm so lovely now. I should be a model. lol I have not had a grand mal in over a year and now this one has me down for a week.I'm sorry forcomlaining. I really havn't been up much.
 

C0urt

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I had a tonic clonic while crossing the street. My friend siad I did a little turn.and then fell straight to the ground. I can't chew either. Stitches on my chin. I'm so lovely now. I should be a model. lol I have not had a grand mal in over a year and now this one has me down for a week.I'm sorry forcomlaining. I really havn't been up much.
model, :)
you are probably still the kind of person I wanted on the cover of ever magazine I purchased :)
 

C0urt

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i was trying to be nice, and my spelling sucks this time of night.
post several several several partial seziures later.
 
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tonic clonics

Yes,

I suffer from them too....had one last night may have had a few complex partials or absences yesterday as well don't remember most of yesterday at all! Mine only come about every few months and I a mfairly sure it is somehow homaonally realte since they always come during my period. Although usually it is on day 2-3 of my cycle not the last day of my period. I did recently go through an increased dosage in my meds would that have any affect?

Thanks,

Tina
 
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My main seizures have been tonic/clonic. My epilepsy is genetic & has a name I can't remember. Its adolescent onset something. I don't experience most of my seizure. Usually, I have warnings, but my brain isn't working well so I don't have the sense to stay down. I do remember a few times having a terrific fear as my body stiffened, I couldn't breath, & my head is pulled back (muscle spasm) & falling backward. I don't normally remember that much. I had a couple of strokes 1999-2000 & my seizures since then have become much more violent. I got menapause a couple of years back & seizure activity has decreased considerably, PRAISE THE LORD, JESUS! The description of T/C seizures equals my husbands description of mine almost exactly, but since my strokes, I only seize on one side & lose all feeling on the other side for hours. My seizures last at least 15 minutes now (which I have a hard time believing, but my body feels like that's true!) & the stress of such a long time really wears my husband out, too. I have had at least 3 times status epilepticus & died at least once. This last summer my husband walked me over to the drs office (1/2 block away) & that dude couldn't believe I was walking! My dilantin level was well over 20 & my eyeballs were jiggling. Didn't have a seizure though. Sorry so long.
 
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i used to know a woman who had siezurers many years ago and was just about to have one on a large open laminate floor so i made the biggest mistake of my life and tried to stop her hurting herself by diving across the floor to get my arms under her to stop her from hurting herself nearly winding up with two broken arms myself i swore id never try that trick again i didnt realize at that point how we fall just like a dead weight as i say never again unless its a life or death situation
 
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