Author Topic: Possible seizure post treatment  (Read 4477 times)

ppearl214

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Possible seizure post treatment
« on: April 12, 2006, 06:22:18 am »
Well, folks, not sure what occurred but was laying in  bed, wide awake (darn decadron) and at approx 1am, felt almost like an uncontrollable shake/jolt in my head.  Lasted for approx 5 secs. Got me a litle nervous so am going to place a call to BI to follow up, but wanted to know this.

I've never had any kind of seizure before. Regardless of what kind of treatment you have had (micro-surgery or radio-surgery), have any of you had post-treatment seizures? What do they feel like?  How do you know if you have had one? As you can see, I'm a virgin to this now and will take all steps to check with the team at BI, but wanted your thoughts on it as well. Maybe it was just a muscle spasm or such but figured I'd ask you all.

Thanks!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kathleen_Mc

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Re: Possible seizure post treatment
« Reply #1 on: April 12, 2006, 07:12:46 am »
Phyl: I have had seizures, the first was about 2 years post op and I do not have any recollection of the event, I apparently fell to the floor and twitched about then fell into a deep sleep. The person who witnessed it didn't realise what was happening and I didn't get seen by a doctor until the next day....no particular problem found. The next one occured in a doctor's pres., I again fell to the floor and flopped around, just prior I felt faint, I was having some tests done at the time and had been given medication to challenge my glucose tolerance and my blood pressure, it was supposed that it was the combination of this that caused the seizure.( that was about 5 years post-op). I had two events recently where I became numb on one side of my body.... it is supposed this was either a TIA or more likely a seizure of a particular central nerve. All tests I have had have been "normal" in regards to tests for an actual "seizure disorder".
What you descibe doesn't sound like the typical seizure bout it should be looked into by your doctor.
We no longer have "normal" neurological systems and anything out of our "norm." need to be looked at for now on.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Battyp

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Re: Possible seizure post treatment
« Reply #2 on: April 12, 2006, 07:18:12 am »
Oh NO!  Phyl I have to agree with Kathleen.  They thought I  had a seizure post surgery that I do not remember but have worked with kids who have seizures in all instantences they do not remember what happened to them but they all have gotten very sleepy afterwards.  Either way I'd call the doctor...I've had strange pings and zings and sharp shooting pains that last a few seconds since sugery. When I asked the doctor how would I know if I had a seizure they assured me I'd know.  Doesn't make sense to me.  Take the day off, eat some choccies and get some rest today!  That's a wench order which we all know superseeds any doctors order ;D :-*

nannettesea

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Re: Possible seizure post treatment
« Reply #3 on: April 12, 2006, 10:37:49 am »
Phyl, m'dear-
Definitely call a doc, but in my non-expert opinion and having seen my brother have seizures, his was throughout his entire body, not just the head.  Unless there is such a thing as a brain seizure limited to that area.

Please keep us posted--we'll be thinking only the best!
Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Captain Deb

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Re: Possible seizure post treatment
« Reply #4 on: April 12, 2006, 11:36:15 am »
I certainly hope it was that little booger in your head keelin' over and DYIN'!  Like Batty, I had zings and pings, and what sounded like a 747 flyin' in one ear and out the other.

No, but seriously, let us know what the docs said, sweetie.  Hope you feel better soon.
 Huggles and Kissies :-* :-* :-*

Capt Deb 8)
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Battyp

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Re: Possible seizure post treatment
« Reply #5 on: April 12, 2006, 11:50:36 am »
Deb do you think this is a ploy to get more choccies out of us?  :-* :-* Hmmm...She was sounding so perky on the phone yesterday... 

Phyl you know i'm just funning with you.  You know we take side affects and worries very seriously!  Now did you call the doctor yet?  Are you at work?  What are you doing you've been too quiet today!


Vincent87

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Re: Possible seizure post treatment
« Reply #6 on: April 12, 2006, 07:11:12 pm »
Hey Phyl:

My mom was told that a seizure could be something as simple as a leg twitch.  And you're already on Decadron?  Geez-Mom was on it too-she never really slept.   We truly hope that Decadron works its magic on you.  Best to call BI as soon as possible.  The weekend is longer than 2 days/48 hours.

ppearl214

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Re: Possible seizure post treatment
« Reply #7 on: April 12, 2006, 10:18:28 pm »
thanks gang and not trying to worry you all.... been the day from "you know where" and overdid it today.. just now heading to bed (sleep.. now that's another story!)

Spoke to Oncol nurse at BI this am... described the episode to her. She said it didn't sound like a typical seizure but since I was on very low dose Decadruge (as I lovingly call it) and doing the "taper" off, she's also aware of the head pressure I've been having so now is having me combine Ibuprofen in with it. Told to monitor to see if it happens again... so, day by day, inch by inch. Whereas I'm not even 1 week post treatment, they are lingering the taper off Decadrudge but confirmed that my scan on May 8 is MRI (not CT as I originally thought).... so, will keep fingers crossed that it doesn't happen again but... I'm no fool either. Doing all I can to take care of myself (ok, well... except I blew it today).

So, off I tottle to the 300 count-cotton sheets and hope that I get at least a couple of hours of sleep.

BTW, you all were topic of conversation tonight with PapaPearl.... you all have touched him in such a way... I think he's ready to adopt you all... but, I'm still executor of the Will... remember that! :)

xoxoxoo for all of your advise, concern, insights and love!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Raydean

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Re: Possible seizure post treatment
« Reply #8 on: April 13, 2006, 03:40:57 pm »

"So, off I tottle to the 300 count-cotton sheets and hope that I get at least a couple of hours of sleep."

Phyl

Only 300 count? Geeeeeeezzzzz  You deserve better!!!!  maybe try 400 count Egyptian Cotton.  I feel like a pampered princess when I put the 400 EC on my bed.  I swear I sleep better.   

Thinking of you
Raydean
Do not go where the path may lead, go instead where there is no path and leave a trail.

Battyp

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Re: Possible seizure post treatment
« Reply #9 on: April 13, 2006, 03:44:21 pm »
I"m a big fan of pima cotton but they quit making my favorites  ...hoping mine last a long long time!!


ppearl214

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Re: Possible seizure post treatment
« Reply #10 on: April 13, 2006, 03:55:15 pm »
ya know, Raydean, I am partial to the 300 Egyptian count..... will see if my CB will bring  me some from London.. :)

Batty, I'm with you on that! :)

Not doing so hot today physically but mentally, doing great!  No episode last night and hoping that it remains that way! :)

xoxoxoxo
P
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

thecakes

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Re: Possible seizure post treatment
« Reply #11 on: April 26, 2006, 08:00:19 am »
   Now back to the seizure thing.  I had 3 of these things. i was told one lasted 25 minutes????  I thought that was'nt possable.  I did'nt know it though, because I was in a comma.  I slept well no matter what sheet count I had!

ppearl214

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Re: Possible seizure post treatment
« Reply #12 on: April 26, 2006, 08:08:51 am »
thanks cakes for sharing this with us... a 25-min seizure? wow!  What did the dr's attribute it to and what kind of meds did they put you on for the seizure control, if I may ask?

xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

thecakes

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Re: Possible seizure post treatment
« Reply #13 on: April 26, 2006, 01:22:23 pm »
   Phyl, seizures are like a mystery to me too.  how do you act after you had one?  Does it affect your balance?  How do you know if you had a seizure?  I kniow little about seizures.  My husband told me I had several and one 25 minute one.  I can't imagin that.  Iwonder if I shoke all over (like you see on tv) My Mom said I would just shake a little bit. I'v never seen a person have one before.  I now take4-100mg. of phenytoin a day.