Seizure symptoms other than the normal ones

I am curious to find out experiences with other people and seizures.  My mom is on 500 mg Keppra in AM and 750 mg in the PM.  So far as I know there hasn't been any activity that I have recognized as a seizure.  I tend to think of the normals...convulsions, loss of consciousness.  But I have done some reading to find that there are many, many other symptoms that appear.  My dad had seizures with his GBM of which I never witnesssed, and my mom has determined that she is having some seizures with her GBM as well.  She said that she has had a couple of occasions where she had some slight jerky motions in one of her arms and a little twitching in her face...and then today she said that her mouth was very very dry and she felt "slimy" inside.  I talked with her this afternoon and she recalled this smell that my dad would have when he had a seizure and she said that she tasted this taste that was like the odor my dad had in her mouth earlier today.  She is also having these eipsodes of nausea and then gets unbearably hot.  We have had three falls this week and she cannot remember at all what caused her to fall.  

I plan on talking with the neurologist tomorrow, but I just thought it would be helpful to find out what other families are experiencing with their loved ones and seizures.

Mom is 6 weeks post radiation and temodar and has seemed to get slowly worse instead of better.  The oncologist said today that he would have expected her to be "kicking up her heels" a little...but that's not the case.  

Any insight you can share will be greatly appreciated.  I have traveled this road of GBM IV before and know a lot of things that I saw with dad, but the seizure thing is new to me since I was not dad's full time caregiver and never experienced a seizure with him.  

God bless~ Cris 

Hi Cris,

I don't know much about seizures because my son's tumors are on his left side, affecting memory and speech, but I DO know about radiation and how long it takes to feel like "kicking up your heels".... MUCH longer than 6 weeks. I read on the Am. BT Association website that radiation side-effects are short-term, medium-range, AND long-range. It's never going to be over, essentially. The exhaustion typically doesn't even reach its peak until 8-10 weeks post radiation. I know this doesn't sound like good news but if you know it, then you don't feel like there's something wrong and get worried, and your mother won't feel like her therapy isn't working. Whew, this whole thing is just so hard.

Hope things start to go better for her.

All the best,

Sarah

mother of Andy 27 dx gbm/pnet 1/09

Thanks Sarah, I never really got to see that with my dad because he had such a severe seizure 2 days post radiation that he never walked again so we could not really tell if he ever over the exhaustion phase or not.  I know age plays a large part as well with her being 75.  We also have the added problem of  extreme renal insufficiency that we battle with.   I appreciate you giving me that information...it does help to know that the exhaustion is there as a normal part of the journey and there is hope that it will get better.   It just breaks my heart when she just cries about being so tired of this part of her life.  I know you know how that feels.

Another question, I have just started using this site and I do not really understand some of the abbreviations used...I understand all of yours except the "pnet 1/09" Thanks for sharing.

Cris

Hi

Sorry, because that one is a very unusual abbreviation and almost nobody knows what it means! Andy's cancer is a weird combination of GBM and PNET which is primitive neuro ectodermal tumor. The PNET. By itself it's not uncommon, especially in children, but in combination with GBM in adults it's very unusual... just a few cases a year. They're both completely awful. We can only hope for time.

Sarah

 

Oh, and he was diagnosed in January 2009. 1/09

All those symptoms you describe have seizure written all over it.  My husband has had grand mals only which are the type where you convulse and lose conscience. He has had all these symptoms before or after the seizure.  There are many types of seizures tho.I am sure the Dr. will check her out tomorrow.

Call the doctor ASAP. What seizure meds is she on? Ask the doctor about Vimpat and see if he can order an EEG. My mom had both of these things done and it made a big difference in her quality of life. The yucky taste in her mouth could be chemo/radiation effects.

Thanks I have a call into him now.  The interesting thing about the taste in the mouth is that it has only happened that once...when she said she was feeling really weird...so that's what made me wonder since it really did not happen during the radiation or when she was taking chemo.  She is taking Keppra.

My daughter an almost 7yr survivor has learned to identify somehow when a small seizure is coming....but on the big ones- total collapse and drop, maintaining conciousness, but sort of spaced out hit with no warning. At first it was when startled by noise, or anything surprising, but now those all but have gone away.  Now its the no notice and just quick with no warning or apparent cause.