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

Elsie

Stalwart
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Had to add my vote to this one. I feel like I am one of the blessed ones, the meds work to keep me from having these t/c seizures. I have never seen one, and none of the people who have seen me have described them to me. All I know is that I drop like a rock, I'm unconscious and wake very confused. Oh, someone said I make a sound and grind my teeth back and forth. I have never bitten my tongue, but I have thrown up. I have pulled an old metal typewriter over on myself, fell off a piano bench, fell next to lots of furniture a few times. Never bruised that I can remember, never cut, never broke anything. And if I take my med like a good little girl I don't do this stuff. I consider myself very very lucky.
 
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Thanks for replying!

Yeah me too. As long as I take my keppra I seem to be pretty well controlled however i am not sure if this is enough medication for me. Currently I am taking 1250mgs 2x a day. My seizures always seem to happen during my period or when I am ovulating which makes me think there is a hormonal connection. But here is the thing about that it does not happen every month and lately my periods have been like clockwork. My husband and I think that there is also a sleep connection as well. The thing is I am very dilligent in taking my medication and with my sleep schedule as well. Next I am thinking of trying to see if it is something nutritional so I am trying to get in touch with a nutritionist to see if I have any food triggers as well. I would be interested to see if anyone has anymore suggestions to add for me. My nuero who I saw last month does not want to see me until March which is frustrating in itself as he does not wish to add more tests unless I have another seizure as far as I know i only have gran mals except i think i may be having partials as well. The last documented seizure I had was on the 10th of this month (day 5 of cycle usually it happens on day 2 or 3) and I was very tired all day and possibly had one before the one my husband witnessed when he came home from work. The resason I think this is because when I came to I don't remember anything that happened before and I had bitten my tounge a little bit and I was sore which usually happens when I have one. so Then I went into my bedroom (I was on the couch) and went to sleep as usual after I have an episode. I then had one around 6pm after husband came home stopped breathing lasted about 5 minutes or so. But I did not go into status no ER visit thankfully. Anyone else have any experience with this type of thing happening to them? So far all tests have come back normal CT's ,and MRI's all clean no abnormal growths. I have had 3 EEG's in the past 4 years 2 normal and 1 abnormal a few months ago where there was generalized activity but no seizures about 14 times in a 45 minute period. Any advice is welcome and your thoughts are appreciated. I have been trying to get a sleep study done or an exteneded video EEG but my neuro does not want to order it yet. I think that I am having breakthrough seizures. Sorry this is so long winded but would love your thoughts.

Tina
 
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Just following along as my 4 1/2 year old has primarily T/C seizures and has had a couple atonic seizures. He doesn't seem to remember them afterward and for right now, they have limited his activities quite a bit(he can't ride his bike, use playground equipment, can't be in a room alone, etc.) He's only been having seizures since February 23 (although the doctor thinks he had 1 on January 19) so we are still discovering things. He hasn't had a seizure at all since March 13 at which time they upped his med dose.
 

RobinN

Super Mom
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Tina - just shedding some light on Rebecca's situation. Her's were for the most part hormonal, at least that is what my journaling told me. It didn't happen each time that way, and when she was taking meds there were more seizures, and odd/different seizures than the norm that I tracked.

Nutritionally, you are correct that certain foods can trigger seizures in some. It can also cause reactive hypoglycemia, or other blood sugar imbalances. For Rebecca this was not caught until they did a glucose tolerance test on her. The typical blood sugar test came back normal. Some food sensitivities don't show up for hours, and even days. There is also a connection, though not being a chemist, it is hard for me to explain. But if you are fueling your body with foods that are being converted to sugar, the body makes insulin to counter act this. There is a connection between this and hormonal balance. When the liver is overloaded, it becomes congested Toxins are not able to be eliminated, and problems occur.

If you see other minor medical issues, such as sinus problems, rashes or eczema, there can also be a nutritional component. Eliminating dairy helped Rebecca with this, and it is one of the foods we have removed. At last cow dairy. We do occasionally use goat.

Experimenting and taking notes was very helpful for me.
 
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Thanks Robin, Again any information and shared knowledge I find is useful since my husband and I are just beginning this journey pretty much even though its been about 3 years we feel sometimes like we are constantly starting over all the time every time they change a medication doseage or we have a setback with a seizure with me. its just frustrating. A test will come back and we have no new information to go off of we really are thinking of going to a level 4 clinic to see if they have anything more definitive to say about it.
 

RobinN

Super Mom
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Never once did our doctors spread out the test results and compare them. Frustrated me to no end. I would highlight any that I questioned, and occasionally they would be stumped. Tests didn't always give me the answers. In fact most were far too generic.

Seizure setbacks always were another frustration, but it became a challenge to me. Like a puzzle, and then we would tackle the common thread and slowly, slowly we began to see results. It was one reason I wanted her med free, so we could see what actually her body was responding to, and not have the meds to confuse the issue.

Let's pray that your little one responds well to the recent increase.
Give him a hug for me.
 
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My Grand Mals really scary...like I can feel them although I can't control my body at all. I start out feeling funny my head spins, my chest starts to burn and I usually smell marshmallows. I take the time to get to a safe place I usually have about a minute to do so. My knees move up and my toes clench, then my arms bend and go near my chest straight up and down then my fingers clench. My head turns to the left and my breathe starts catching in my throat. Then my body starts to jerk violently and I can no longer breath. My hearts starts to race as I begin to panic and since I am unable to breath. Someone comes in the room and calls me asking if I can hear them and if I'm okay. My lip is starting to sting from biting on it so hard and I'm still shaking and still can't breath, but I so desperately want to respond to the voice asking if I can hear them. Finally after anywhere from 1 minute to 20 minutes my body goes limp and I finally can catch my breath. I am in so much pain then everything goes dark. Sometimes I sleep for 20 hours unable to wake. I have went status 3 times in the 2 years since I started having Grand Mals. I have broke ribs on my left side twice, partially dislocated my left shoulder twice and sprained party parts so many times. The grand mals are very scary and I wish I didn't have to feel them.
 
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