New to TC and this week had 2 frightening episodes

[Loveshorses]

Hello Everyone and I look forward to being part of this understanding forum!

I am 49 and a Mom of 2 and a Grandmother of 1.
I had my first seizure early one morning when my daughter found me on the living room floor unconcious, foaming from the mouth and she called 911 as I did not recognize anyone when I came to. When the paramedics, police and fire department came I also gave them a run for their money apparently :lol:
The police officer insisted I was either drunk or on drugs!!!
Later at the hospital I seizured again and was sedated and restrained. I don't remember anything that had happened since I had woken up in the morning. I had a CT scan and was released with Dilantin and sent home to my husband who I still didn't remember?
Once I was home I started recognizing everyone and was pretty normal except for no memory of the day at all and being pretty tired. I was filled in on the details by my daughter and husband.
I saw an neurologist the following week and was switched to Tegretol as my experience with the Dilantin was that I felt drugged and confused.
I just had an MRI and am awaiting the results as well as an EEG which isn't until June.
My concern is with 2 experiences this week, one on Sunday past and again yesterday.
Basically the only way to describe it is my head suddenly shuts off like a switch. It is like my brain becomes a blank sheet of paper and I cannot talk or process any thoughts. I can nod my head and walk but there is no thought there at all. I am aware there are people around me but I struggle to understand them and to absorbe what they are saying to me. I know WHAT they are saying and I hear it but don't know what to do with the information they are giving me. I hear them say " I have a ball " and I know I heard them say that and I struggle to process it further and within a second it is gone.
I don't know any other way to describe it ~ sorry I can't do a better job of explaining it.
This usually lasts at least an hour with gradual return to communication as I struggle to understand and communicate. And I am like an toddler learning to talk and I have to ask what words mean and what word I need and what people are saying to me and what they are saying for at least another hour. Thank goodness for their patience as they repeat things to me over and over and try to help me understand.
It is terrifying. Afterwards I feel nauseated and exhausted.
It hits suddenly and I had to signal both times to my husband by waving to him as my cognitive brain shuts down.
Has anyone experienced this??
I called my neurologist and she is waiting for the MRI results to schedule an appointment. In the meatime I'm dreading another episode.

Thanks for letting me vent to people who understand.

 

[Loveshorses]

Sorry forgot to mention my first seizure was on February 9th.

 

[Nakamova]

Hi Loveshorses, welcome!

I send a big hug to you -- this must be a very scary time for you. When the brain misbehaves it can feel like a particularly nasty nightmare until you get a handle on what's going on.

The "brain shutdowns" you describe sound like seizure activity. When there isn't total loss of consciousness it's a kind of seizure called a simple partial or a complex partial. You should definitely mention these episodes to the neurologist -- it may mean that the Tegretol isn't working, or that you need to revise the dosage.

I'm so sorry you are having to go through this. Any chance they can move up the EEG? When do you get the results form the MRI?

Best,
Nakamova

 

[travel bug]

Hi Loveshorses:hello:

Welcome to CWE!

Sounds like you had an especially difficult introduction to epilepsy. My first seizure was my only tonic clonic seizure (knock on wood). I was sort of in and out for a few hours and there's a fair amount of missing time, but luckily, after the first 10 or 15 minutes I recognized everyone and remembered the time leading up to the seizure.

Your more recent experiences sound like simple partial seizures centered in the area of your brain that processes language. There are many, many different kinds of seizures, and many variations on top of that depending on where in the brain the activity is. I normally have simple partial motor seizures that cause my right arm and leg to twist and contort and forces my head to the side. I'm conscious and can communicate, but I'm otherwise helpless to move until it passes. However, I have experienced something like what you describe only involving math processing: all of a sudden I can't figure out very, very basic math. For example, at Christmas I was buying a dress for my friend's daughter who had been born in June the previous year, in other words 18 months, DUH! But I couldn't for the life of me figure it out at the time. I wanted to cry, I felt like I was losing my mind. Of course that isn't nearly as frightening or frustrating as what you've experienced! Language is so much more a part of us; and not being able to communicate makes you feel so helpless. But I really do understand what you described: your brain feeling like a blank sheet of paper, unable to process what you want to process.

Hang in there! Let us know what you find out at the neurologist

 

[epileric]

Welcome Loveshorses

I know exactly what you're talking about. My seizures aren't convulsive but during the larger ones my mind does go blank like you described. I have trouble talking but can understand things as well. Sometimes I think I can talk but apparently I'm just babbling words but not making sense.

I've also had the same issue with people thinking I was drunk or stoned. Actually, when I had my long hair people would think I was stoned after a larger seizure, and now that I look "respectable" everyone seems to assume I"m drunk.

Well, welcome to the club & to the website. Do check the different rooms out here & make yourself at home.

 

[Loveshorses]

Releasing a HUGE sigh of relief!!!!!

I have been thinking tumour, brain cancer, every worse possible senario imaginable. Seizures I'm pretty sure I can deal with.

My MRI was on April 10th so just waiting for my Neurologist to get the results which I assume will be after the Easter weekend.

It's been pretty scary but I have an amazing support system in friends and family.

The first which I now know is a simple partial (thank you so much for the clarification) was at a horse show. Fortunately I was done competing and was just watching eating fries LOL. The second one was at home.
Should I be watching for triggers or auras etc?

Thank you and so glad I this forum!!!!

 

[Nakamova]

It can be really helpful to keep a journal where you track any seizures, plus anything that might be a trigger. The more comprehensive the better -- triggers take a wide variety of forms, and sometimes more than one can be at work. Some sample triggers: fatigue, low blood sugar, food sensitivity, nutritional imbalance, electrolyte imbalance, dehydration, hormonal fluctuations, fevers or infections, flashing lights/patterns, sudden noises or movements, temperature or barometric changes, physical or emotional stress. Not everyone is vulnerable to all of the above, and not everyone ends up being able to identify their triggers. And triggers can change over time too.

Yiu might find this list of "journal" resources helpful: http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

Also this: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[epileric]

It would be a good idea to watch for things that might trigger your seizures.

On a spreadsheet I keep track of when I sleep, take my meds, have seizures,when/what I eat, move my bowels & even keep notes at the bottom for unusual things I've done or happened that might effect my seizures.

I've even started sleeping with a pen & paper beside the bed to mark down nocturnal seizures.

Also-great that you have a good support system.

 

[Endless]

Hi, Loveshorses,

Welcome to the forum!

You've had a scary ride of it these last few weeks. I'm glad you found us, too. This forum has been a lifesaver for me. The people in here told me all the things my neurologists didn't, and that I really needed to know.

Your seizures where you don't understand people - I get those, but only for about 3-5 minutes at a time. Remember the Charlie Brown movies on TV, and the teacher said "Wah wah wah wah?" That's kind of like what things are for me. I hear them, but their meaning is completely beyond me. Or, I can tell what they say is words, but they go rushing by me at 150 miles an hour and I can't understand them. I also get one where what I'm hearing them say sounds garbled. Or what I'm saying sounds garbled to me. But we are both talking perfect sense, according to the other party.

It's a simple partial seizure in the temporal lobe. My neurologist explained that if you say something during a seizure and it makes sense the seizure is probably in the right temporal lobe, if it's nonsense it's probably in the left temporal lobe (where most of the speech is located).

I also have seizures where I don't remember a thing that happened or was said to me. I look and sound normal to the other person, so they just think I'm a dingbat. Sometimes I'll say stuff that is very rude or nonsensical, and remember nothing about it.

Sometimes I also get really confused - listening to speech, what I see, where I am, who I am.... This is after a complex partial where it is a partial/focal seizure, but I lose consciousness. It usually passes within 10 minutes or so, sometimes as fast as a minute.

I've heard the confusion after a TC can sometimes last a very long time.

I have a bunch of other types of seizures, too, but we'll leave it at this for now.

Yes, it's a strange world we live in. Everything is okay. You aren't crazy. You just have epilepsy.

BIG HUG

 

[Loveshorses]

Endless ~ I think I want that on a Tshirt "I'm not crazy - I just have Epilepsy" LOL

I feel so much better if that is possible to just have Epilepsy. I have been reading this forum for a while lurking and I see people with great attitudes and outlooks and I know I can do this ~ thank you just for being here.

 

[tase37]

I hope your seizures will stay under control on the meds..wishing you lots of strength..