Seizure Salad Update

[Squash Cop]

On Monday afternoon we drove to UMass Memorial Hospital and checked Cara in to the Neurodiagnostics department for a week long EEG. We were asked to arrive at 2 pm, but the rooom wasn't ready untill 8. Everyone was very apologetic and helpful though, and I talked to the guy who attached the electrodes about Heroes and BSG. (He wasn't too impressed by the second season.) While we were waiting we did get the chance to see Cara's MRI from the last trip out. It was a little strange and a lot cool to actually see inside her head.

She hasn't been on her meds since Monday morning, and the nurses have been told to keep her awake untill at least 2 am and to wake her up by 7. We're hoping she has enough auras and small seizures to give them what they need by Friday, but the docs might need a grand mal.

[doc]

Good luck to her and give her a friendly hug of encougment from me will ya ?

[Janos]

Good luck and all our best to her. The whole process sounds pretty grueling.

[Dawnstar]

I will keep her in my thoughts for the week. Hopefully they will get what they need to help her out.

[Blue Eyed Frau]

Good luck to her and give her a hug and tell her she will be in my thoughts and prayers. :hug:

[Xavier Lang]

I hope all goes well. Would you mind telling us what they are trying to find out? Are they looking for better treatments? Gathering data for something? Is something wrong recently they are trying to diagnose?

[Squash Cop]

I hope all goes well. Would you mind telling us what they are trying to find out? Are they looking for better treatments? Gathering data for something? Is something wrong recently they are trying to diagnose?

They are trying to pinpoint what part of the brain is responsible for the seizures. For a while after her surgery she was fine, but then she found out that auras are considered seizures. There were med changes and a winter of mood swings and depression. The neurologist didn't listen to her and just kept upping the doses on her meds.

She's at a different hospital now, so they need to do their own tests. The new neurologist is much more personable, and has found a combination of pills that seem to be mostly working.

For the week leading up to and the week of the EEG she's been wearing a bracelet that monitors movement. It's part of a study to see if physical exertion has an impact on her epilepsy. I belive it's a student project, this particular hospital is part of the University of Massachusetts.

[Trainz]

Give her my good wishes bud.

[doc]

What are Auras, in the context you used anyway

[FeatsofClay]

All the best to both of you through this. Please, keep us updated as you can.

[PWD]

Thinking of her and wishing you both well. Bring us good news.

[Squash Cop]

What are Auras, in the context you used anyway
Seizures can cause involuntary changes in body movement or function, sensation, awareness, or behavior. A seizure can last from a few seconds to status epilepticus, a continuous seizure that will not stop without intervention. Seizure is often associated with a sudden and involuntary contraction of a group of muscles. However, a seizure can also be as subtle as marching numbness of a part of the body, a brief loss of memory, sparkling or flashes, sensing an unpleasant odor, a strange epigastric sensation or a sensation of fear. Therefore seizures are typically classified as motor, sensory, autonomic, emotional or cognitive.

In some cases, the full onset of a seizure event is preceded by some of the sensations described above. These sensations can serve as a warning to the sufferer that a full tonic-clonic seizure is about to occur. These "warning sensations" are cumulatively called an aura
She calls it being 'fuzzy', blurry vision, disorientation and a feeling of seeing things that aren't there.

Yes, only a feeling of seeing things, she doesn't actually see things.

[doc]

Ok I understand now, her vision blurs, is the petite/ grand mals daily or just when strees happens

[Squash Cop]

They are more frequent as her period approches and her hormones do their thing. She has only had about half a dozen grand mals in her life, before the surgery she had 7-10 petite mals every day. The surgery was very successful even though it didn't eradicate the epilepsy.

[Xavier Lang]

Thank you for the update, I hope they find out some useful things with the tests and can keep helping her.

[doc]

I had seizure's in high school after a fall for awhile and they came back while I was in the Army (the shapenal was the cause of those) time cured the first and surgery the second. Hope they find out what causing SS's brain to short circuit, too bad you can't put a new breaker in the brain.

[Snatch]

All the best you two.

[Ancalagon]

I hope that they manage to find what's going wrong and how to fix it.

[Mr SmokeTooMuch]

I hope that they manage to find what's going wrong and how to fix it.

Ditto and my best wishes.

[Squash Cop]

It seems she'll be home Thursday, she had several seizures last night including a grand mal in her sleep. When she woke up this morning she had a saline IV, dried saliva all over her face and had bitten her tongue.

[Snatch]

It seems she'll be home Thursday, she had several seizures last night including a grand mal in her sleep. When she woke up this morning she had a saline IV, dried saliva all over her face and had bitten her tongue.

Ouch. :(

[GreyOne]

Best of luck.

[cnath.rm]

Best wishes and prayers for both the two of you, and for the doctors who are going to be looking over the info.

[Black Angel]

Good luck with it all. Hopefully that is enough information for them!

[Freedom Canadian]

I'm going to do the "Get Better, Brain" Madagascar Voodoo Dance in your direction tonight, guys. :)

[PWD]

It seems she'll be home Thursday, she had several seizures last night including a grand mal in her sleep. When she woke up this morning she had a saline IV, dried saliva all over her face and had bitten her tongue.

Jesus, I hope it all ends up being worth it. That's just gotta wipe her out.

[Varaj]

Hope they are able to find out what they need to.

[Glass]

Hope things get better soon, man.

[doc]

Good luck to you both, it's scary when your brain misfires

[Northcott]

Belated best wishes to you both.

[Utrecht]

Do you know if they are considering deep brain stimulation?

[Squash Cop]

A large piece of her prefrontal cortex has already been removed. There were two surguries, one to insert electrodes to find the problem and a second to remove the damaged section of brain. This was about 4 years ago. I don't think the new doctor is going to want to take out any more.

[seizure salad]

i got home this afternoon at 4, and slept untill 7. i am definitely still a bit brain fried. i will probabley take a few days for all the glue to come out of my hair. i fell off the comode yesterday morning. i had pressed the nurse call button and had been yelling 'help' 'someone' and by the time the nurse said 'can i help you' from the wall i was on the floor and could not reply. i shortly there after blacked out and slept the entire day. it will probably take a few days for my memory to get back to its not so perfect self. the purpose of this EEG was to see where the seizure activity is comeing from post surgery. apparently it is a spot just a little further back than they removed. i am going to be looking into a somewhat experimental depth electrode. when i was born my mother happened to be in the hospital for a stress test because she wasn't putting on enough weight(2wks before due date). while they were looking at her my heart stopped. they cut her stomach open before the meds kicked in. i was scrawny and blue with the cord around my neck twice. this lack of oxygen caused a dead layer/area in my R temporal lobe.

[Freedom Canadian]

You sound like you need a hug, SS. :)

:hug:

[seizure salad]

You sound like you need a hug, SS. :)

:hug:

thanks :hug: i'm actually in good spirits. i have a great appreciation for how f*ing lucky i am. i am really happy to know my meds are definitely doing their job.:) lately i havent been having full blown seizures, mostly just auras. those are kinda weird feelings; sometimes some mild visual stuff, a head in fog feeling, difficulty concentrating. often accompanied by hot flashes and nausea.

[Blue Eyed Frau]

:hug: I am glad your back home and hope those meds help you :)

[King Vyper]

Glad to see your doing OK SS, I Hope things work out for you.

[Xavier Lang]

Glad your back and doing well.

[Glass]

Glad you're doing well and back home, SS.

[Dawnstar]

I am glad that you are home and that you are feeling better. Make sure to take it easy. And keep us updated. I am also very glad that your meds are actually doing what they are suppose to do.

[doc]

1 hug for SS coming up

{{{hug}}}

and 1 for SC for the waiting room BS

{{{manhug}}}

[Utrecht]

while they were looking at her my heart stopped. they cut her stomach open before the meds kicked in. i was scrawny and blue with the cord around my neck twice. this lack of oxygen caused a dead layer/area in my R temporal lobe.


Eeek - well that explains a alot. My wife and I are in a somewhat similar situation with our daughter - when she was born, the forcepts slipped and crushed part of her skull causing bleeding on the brain. So, the ended up doing an emergency c-section and brain surgery on her.

The fortunate thing for use was that she was literally a newborn and the damage that she suffered *should* have minimal long term affect since she will be able to rewire her brain (something that adults are rarely capable off)

So, we have to watch her for seizures (she was on anti-seizure medication for her first year) and track her developmentally.

Good luck!!!

[Scarbonac]

Yow.


Good luck. :fingerscrossed:

[Kastil]

Wow. Best of luck, SS. I think you're a wonderful gal. :hug:

[seizure salad]

i just got off the phone with my neurologist. she is done going over my EEG stuff with the epilepsy team. aparently in the AM of 10/03 i had a total of 3 Grand Mal seizures, each preceded by a seizure, and had a fourth seizure earlier in the morning as well. the first one that turned onto a grand mal started at 3:58AM, lasted 3min10sec, then the GM part was another 1.5 min. the second biggie started at 5:21AM lasted 5min 43sec; the grand mal then lasted another 70sec. i woke up a few hrs later unable to move or pee, and with dried spit all over my face. the third one started while i was on the toilet on wheels. i fealt the activity 1min 46sec before the seizure started (another 6min5sec). the grand mal then lasted another 2min28sec. i was poked and prodded, asked questions throughout the day but i dont remember anything untill late afternoon.

[doc]

Good luck to you and SC.

[Xavier Lang]

Ummm...is this good news? Is that the kind of data they wanted? Are you back on good meds? Sorry, I don't know much about seizures.

[Varaj]

I hope they learned enough to be able to help more. My thoughts and hopes are with you.

[seizure salad]

back on meds as of last wed afternoon, as soon as i started having the major seizures. the neurologist was not expecting me to have so much activity, but it ended up being a good thing because it clearly showed the location (near my visual cortex) the seizures are starting(the locus of the seizures). currently jsut experiencing aura's daily(what i feel at the begining of an actual seizure, like a little brain fart:grey:) i will be increasing one of my meds by a half pill over the next 2wks. with the results fo the EEG it helps to determine if this newer med is good enough and if not what my other options are. (maybe more surgery of soem kind, or hormone therapy)

[Pigs in Space]

It's kind of cool that they can find this stuff out and treat it!

Good luck!

[Atropine Mama]

Holy shit, SS, I'm glad you've got a better neurologist. I hope things improve for you, and this hospital stay proves fruitful for your treatment. Damn, that's gotta be hard to go through. You're one helluva strong woman and you have my utmost respect!

Sounds like your current meds are pretty old school, have they tried any of the newer meds like Lamictal? I don't know if it would even benefit you, but I know the newer classes of anti-seizure drugs are fantastically low on side-effects.

Keep us posted, we're all pulling for ya, baby. :glomp:

[Priss]

Wow, I missed all of this. Good luck with eh new meds and doctor, this one sounds like she's listening to you at least. Teaching hospitals can be good things.

Take care and keep us posted.

[seizure salad]

howdy all:) i haven't been online much as of late. about 6 wks ago (5wks post hospital stay) i checked in with the epilepsy specialist and told her of some unpleasantly strange things i was experiencing. i had a few multiple hour long experiences, slightly seizure like feeling, very dizzy, serious double vision, unable to walk without assistance. she quickly said (insert technical term) that i was over dosing on my new med, and since then i have decreased by a pill a day. i immediately noticed a difference and can think much clearer most of the time. YAY! still trying to figure out what is the best cocktail,and haven't been missing too much work.

[Ancalagon]

That's great!

It's very fortunate that you have very competent people following you. A hundred years ago, you would have been more or less screwed...

Ancalagon

[Scarbonac]

Huzzah!

[Hatter]

Good news, SS! Hang in there!

[Varaj]

Hope things continue to improve. Your strength amazes me.

[Blue Eyed Frau]

Oh my , sorry to hear about all of this SS you take care and keep us posted on how you are doing ok :hug:

[Kastil]

Here's to hoping you keep on having breakthroughs. :D

Be well!

[Hastur T. Fannon]

All the best

[Scutisorex Shrewlord]

Good luck to you, SS.

[Cat of Ulthar]

Hope things continue to improve. Your strength amazes me.

Ditto. You seem so equanimous and cheerful despite all this, it's amazing. You're a great girl, hope they can help you clear this up as much as possible!

[Trainz]

Ditto. You seem so equanimous and cheerful despite all this, it's amazing. You're a great girl, hope they can help you clear this up as much as possible!

She's extremely energetic and joyful. A little ray of sunshine in fact.

I hope all goes well now.