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nikki

Experienced Poster

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My Mom has MM

Posts: 195
southside, USA, usa, 396, 219, AL, Alabama
Gender: female

Seizures!!!!!
Dec 31^st, 2004 at 5:36pm

Hey guys. Momma had two seizures out of the blue yesterday, so we were back at the hospital. She's okay now, but can anyone tell me if she will always have seizures and problems like that? And if not, when will they go away? It's just so scary. You never can feel comfortable, and when you do, you get a call saying"We are going back to the hospital" Can anyone help me with this? Smiley

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rdrjudi New Poster Offline Posts: 35 reading, USA, usa, PA, Pennsylvania Gender:	Re: Seizures!!!!! Reply #1 - Jan 20^th, 2005 at 4:34am when i was like 8 years old i started having seizures but they didnt know were they was from never got diagnosed with seizures and got alot of eeg's finaly when i was 17 is got diagnosed with moyamoya then they told me i had ms i got a 2nd opionion and i got a angiogram 2 times and they definetly diagnosed with moyamoya. Judy
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tracy New Poster Offline Tracy Posts: 7 san francisco, USA, usa, 22, 158, CA, California Gender:	Re: Seizures!!!!! Reply #2 - Jan 20^th, 2005 at 1:46pm what are the seizures like?
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Rena

Senior Poster

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Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Re: Seizures!!!!!
Reply #3 - Jan 20^th, 2005 at 3:05pm

Try documenting everything your mom is doing when she has a seizure. Tyler had 5 over a one month period 3 months after surgery, we realized he always had them right after blowing. (eg. birthday candles, blowing excercises at speech, and such) he didn't have to blow much either.
Also, not to scare you, but his got worse every time till the last one left him unable to control his body from the neck down. What was weird about this one was the fact it was the only one he could talk through. Luckily they were all under 5 minutes, even though it seem like they lasted forever.

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I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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CarasMOM

Old-Time Poster

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female

Re: Seizures!!!!!
Reply #4 - Jan 20^th, 2005 at 3:23pm

It'll be a good idea to do what Rena said. Cara had an extreme case of over 140 in a six week period !!!! Starting a week after her second surgery....two weeks into that six week period she was put on Trileptol....then four weeks later it ceased.....hasn't had any in two months. Almost seems we can't really predict what's going to happen. Cara's neurologist here said that Cara is more protected than she has ever been in her life now that she has had the surgeries ...he said that during that six week period..and I was terrified...the continuous blow of the seizure/TIA or whatever it is as the neurologist says it isn't really seizures....was weakening her physically, mentally..and overall was tough for us to take. It may stop forever for some people but it may also continue on unexpectally for others. Hang in there. CarasMOM

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Warm Hugs and Prayers, CarasMOM (Carol)

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dannye

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I love YaBB 1G - SP1!

Posts: 4
Rainbow City, USA, usa, 396, 218, AL, Alabama

Re: Seizures!!!!!
Reply #5 - Jan 20^th, 2005 at 8:15pm

The siezures were limited to right side only, lasted 40 to 50 seconds each and never lost continence through either. ( By the way this is nikki, I'm posting under my dads name. He just joined our family!) She never had a siezure until after the surgeries, she had one 2 days after the first surgery and didn't have another til three weeks ago. My dad thinks stress from breaking her toe the day before might have contributed. Any thoughts? The docs said it might have been the stress of her urinary track infection. Thanks for the replies.

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CarasMOM

Old-Time Poster

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female

Re: Seizures!!!!!
Reply #6 - Jan 20^th, 2005 at 9:59pm

Hi Nikki....got to be from the urinary tract infection as my dad who doesn't have MM but has had quite a bit of strokes over a 10 year period, diabetic...only has one leg...and every time he gets urinary tract infection it sets him off...mom thinks he is having a stroke but by the time 911 comes and take him to hospital, they find out it is the infection....and stress does that too for him. Cara never had seizures before her two surgeries either....at least your mom doesn't have as many as Cara did...but I'm sure all that is happening could set off a little alarm. I do notice when I finally got Cara to just stay on the couch and relax more often....it got less and less while the body (brain) got stronger and stronger and able to withstand "excitement" of any kind...then she can handle anything now..even falls and jumps and all those little things that used to set off the seizure..doesnt anymore. So glad your Dad has joined the MM family...that is GREAT !!!! ; Grin

CarasMOM

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Warm Hugs and Prayers, CarasMOM (Carol)

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mark

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I love YaBB 1G - SP1!

Posts: 86
cato, USA, usa, 468, 87, NY, New_York
Gender: male

Re: Seizures!!!!!
Reply #7 - Feb 1^st, 2005 at 9:48pm

Hi Nikki,
I just saw this post. Has your mom had any more. You said she has MM. Has she been treated. My son has had seizures since surgery. Never had anything prior though. Drs. seem to have it under control now. They said it's from blood left that is irritating things and will take some time to go away. They feel a couple months. So he's on meds for a bit.
ron

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freckles

Junior Poster

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Moyamoya Survivor!!

Posts: 86
Lakeland, FL
Gender: female

Re: Seizures!!!!!
Reply #8 - Feb 2^nd, 2005 at 1:48pm

Hi

I am so glad that I am not the only one going crazy about getting seizures after my surgeries. It's odd, that's for sure. My doc actually said that it may be caused to the shock the brain receives when it finally gets the blood flow back. But he's not sure.

My doc put me on trileptal too. And it works to the point that seizures are no longer attacking me everyday. However, I think that stress does bring them on. Just last week I couldn't sleep at night for some reason and during the day I would get seizures/episodes. So it seems staying stress free is the key Wink

. Anyways, it's nice to have someone to comiserate with,

Jesenia

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nikki

Experienced Poster

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My Mom has MM

Posts: 195
southside, USA, usa, 396, 219, AL, Alabama
Gender: female

Re: Seizures!!!!!
Reply #9 - Feb 3^rd, 2005 at 6:20pm

Hi everyone! No more seizures ; Grin

It's so odd that she just popped up with two siezures out of nowhere and then disappeared just as fast. To answer your question Mark, yes, she was treated by Dr. Steinberg and had surgery on both sides I guess about six months ago. It's kinda hard to keep her stress free because she has major mood swings. She will be as happy as she can be one day and then the next she will be just totally pissed for no reason that we can figure out. Sometimes nothing we do will cheer her up at all. I guess it's just from all the injury to the brain she has suffered messing with her emotions. Undecided

Talk to yall soon! Nikki

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Nancy_N. Old-Time Poster Offline My daughter Mandy Has Moyamoya Posts: 664 Jasper, USA, usa, 436, 230, GA, Georgia Gender:	Re: Seizures!!!!! Reply #10 - Feb 11^th, 2005 at 12:51am It is kind of strange Mandy had just that one seizure also and nothing since, not that I'm complaining but I wonder sometimes if she needs the medicine. I'm sure she does but I just hate all the meds. She was sleeping when she had it so there was no stress in her particular situation. Nancy
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rdrjudi New Poster Offline Posts: 35 reading, USA, usa, PA, Pennsylvania Gender:	Re: Seizures!!!!! Reply #11 - Mar 3^rd, 2005 at 2:21am how dioes a seizure feel not sure but when i had them they are very scary they feel like death is comeing u have no control of what u doing when i have them i loose my breath i cant hardly breath even talk it svery scary thats the best detail i can say
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