Introducing a question!

[musiclady]

Hello...new to this forum. Am being investigated for Epilepsy after having a huge and sudden "deja vu" aura followed by what appears to be two complex partial seizures, that involved complete loss of awareness, flushed face, and nystagmus. Loss of about 10 minutes of memory, some odd behaviour as reported by the person with me, sitting upright and did not fall down. Had an urgent first MRI to rule out brain metastases (I had metastatic melanoma 5 yrs ago), and this MRI ruled out a brain tumour, but has shown two venous angiomas....I have been told by neuro that these can cause seizures, and thus have just had an EEG (no results yet), and am waiting for a second more specialized MRI to look for seizure foci in the brain.
Although I ended up being seen by a neuro for this crazy singular event, I am now wondering if I have been having simpler seizures for a few months now...I have been experiencing a type of crawling or extreme tingling (not as mild as pins and needles), of my left foot that quickly spreads up the back of my left leg to my thigh. It is quite unpleasant, confined to a few moments, and is like a "rush" feeling like you might get after a "fight or flight" reaction to something. Occassionally it is just at the back of my thigh and not as far down as my ankle or foot. I have once in a while experienced this in both legs, but primarily this is in the left side. I have not said anything to any doctor, as I did not think about it when I was there...just as I have been reading about all things "seizure" since my visit to him.
I had febrile seizures as a young child, some further strange sensations for a period of time in my teenage years, and then again for a short period after the birth of my first child(I have four children), which involved a consistent feeling that involved my left hand (sometimes my right), and moved up my arm, but have not ever thought that these feelings in my extremities might be anything but my own personal quirkiness....but now as I read and think about things, I wonder if I was having seizure like activity those times as well.
I have not discussed this with my doctor....prefer to just keep it simple and sticking to investigating the event earlier this month, but wonder if others have had such feelings in their extremities as I am describing, and whether I should report them to my neuro, or just not worry about them at all.
Thank you for your input here!
D.

 

[Nakamova]

Hi musiclady, welcome to CWE!

Tingling, tensing, flushing, etc. can be simple partial seizures. Assuming there are no likely neuromuscular causes (say, a shoulder or neck injury), then it would make sense that the unusual sensations are related to seizure activity.

When I had my first seizures (grand mals), I felt that they came completely out of the blue, with no other kind of seizure activity in my history. But in retrospect, I realized that there were small incidents of "personal quirkiness" that were most likely seizure-related: migraine-like flashing lights in my vision, occasional hand jerking, one moment where I lost the track of a conversation I was having as if someone had flipped the power switch... these were so very rare and so tiny that I dismissed them at the time.

So... I would say go ahead and mention them to the neuro. If possible write down all the unusual sensations that you can recall, with your best guess as to how frequently they occurred in the past. And keep track of unusual sensations occurring now -- that can help see if there are patterns to them, and if they are progressing in any way. The fact that the symptoms increased in your past during your teen years and also after a pregnancy suggest that there may be a hormonal component playing a triggering role.

Best,
Nakamova

 

[musiclady]

Thank you!

Thanks for your reply, Nakamova! I think I will also keep track in a journal, my sensations.
This week I had my EEG and last night I had a second MRI, 3D imaging. So now I will have a follow up appointment to hear any results this testing has yielded.
I am hoping for an easy answer...something significant certainly happened, and so far I know I have 2 venous angiomas that were displayed on the first MRI that the neuro said could cause seizures, and I wonder if anything more specific will have shown. My understanding is that EEG's are often normal? Even if a person has been experiencing seizure activity, is that correct? I am anxious, and although I do not wish for something terrible to show up on tests, I am hoping that there is indeed an easy explanation! I have had them tell me I cannot drive, and they had to report my case to the licensing ministry....now I am hoping that the explanation and solution are straightforward enough to be able to work on getting my license returned again in the future.
I thank you for your information and advice in your previous email....will keep you posted. Take good care, D

 

[jyearta]

Hi.

It is understandable for you to be anxious, not knowing just what is going on. The unknown is a scary place to be.

You are correct that EEG can come back normal, sometimes the seizures are so deep in the brain. I had a least 4 or 5 EEG all came back normal until 2005. I went to Emory and finally it showed. I asked for a copy of the disk and now I take to any new Dr. appt.

Hope you will be getting the information you are needing so you can take proper care.