Scared and confused

[moxiecat74]

Hi,

My name is Heather and I just had my first visit to the neurologist the day before yesterday. He asked why it took me 2 years to see a neurologist when I was having seizures. I had to tell him that I thought they were panic attacks. After all, that is what my Dr. said they were.

My seizures occur from at least once a week to a few times a day, but they seem to be increasing in frequency. They seem to happen more if I am tired or stressed out. From what I have gathered on the Internet, I seem to have complex partial seizures. They go something like this...

Going about my day just fine when I get a funny feeling (could be nervousness or certainty that something is wrong) or sometimes I don't even get the funny feeling. All of a sudden I'm VERY confused. Either I am just disoriented or I start talking about crazy stuff, like that I'm going to Canada to dodge the draft with Clyde (who is Clyde?) or yelling at my husband that we left Shelia (who is Shelia?) at the rest stop during vacation. I don't know these people; they don't exist. Scary. Sometimes I start shivering like I'm naked at the North Pole but most times I don't have any physical symptoms. My friends and my husband all say that if you look into my eyes you can see that I'm "not there" and that my voice gets a strange timbre to it. They also say that I get very apologetic. I have to trust them because I usually can't remember what happened. Toward the end of an "episode" I am either nauseous or I have to run to the bathroom for the other reason. Then I'm just exhausted. Sometimes I can barely keep my eyes open.

I'm going in for my first ever MRI in 2 weeks and 2 weeks after that I'll have an EEG done. I'm terrified that I have a brain tumor. I'm angry that my driver's liscense is to be suspended and my independance limited.

I am a high school Biology teacher and I have to go in on Monday and confess all this to my principal. He is not the warmest or cuddliest of all creatures and I'm scared he will suspend me until I am medicated and stable. I'm sorry to be so verbose but I just needed to vent.

Thanks for listening.
Heather

[Birdbomb]

Welcome Heather,

Can I ask why you need to tell your principal? Are you having seizures at school?

Some employers do not understand much about epilepsy and think it some type of contagin. At this point I would inform those based only on the need to know. Like you are seizing in front of students.

Loss of independance had to have been the hardest aspect of epilepsy for me. I surrendred my licence before the DMV was even notified. Asking others to carry me to the store and doctor appointments was humilating to me. I HATE to ask for help. So I utilized our mass transit system. Somehow I think standing in the hot desert sun 1 1/2 hours in 110 temp waiting for a bus cannot be the healthiest of situations. Can we say space cadet?

Seizures do funny things to people. I used to do this lip quiver, head bobbing Elvis imatation once in a while but mostly it was just being spacy. And like you, it can be seen in my eyes. Lights on but nobody home.

[moxiecat74]

Hi,

I am having seizures in front of the students. They haven't noticed as of yet, but the seizures are getting more frequent and I can never tell how severe they will be...so, I think that I should tell my principal. If I should have a severe seizure in front of the kids and I didn't tell him, I can't see the outcome being very good. I would rather just be up front about it.

I live in the west end of East Jesus and there is no mass transit. I'm going to have to "get along with a little help from my friends".

THANKS!!
Heather

[Stacy]

Hi Heather,

I agree with Birdbomb. Tell your principal only if necessary. There's no law that says you HAVE to. That's your own business. I suggest the following to many people as it helped me in many ways. Read "epilepsy; a new aproach", by Richard and Reiter, M.D.s.

My favorite part (and the most helpful) is the directions to keeping a journal. Get a Black Lab book (being a biology teacher, you know what those are), and make several columns. Record the date, (every day), time you get up, what you do afterwards, what you eat, how much of it, pills you take, how you feel, and what your #2 looks like (ha ha...I had to say it.). Of course note, your seizures, how you felt just before, and what they were like ASAP, because you might not remember after.

Note your feelings after certain foods, as certian foods are big instigators toward seizure activity. Most people have trouble with sugar, stress, caffeine, acidic fruits, white flour and white rice. Look at this as an experiment. Know at least some of the results before the EEG. They'll make you eat lots of sugar and fall asleep...beware. Get more exercise and take up Yoga. It helps.

I say, if you feel up to it, keep up teaching.... just stay out of the cookies in the teacher's lounge!

[Bernard]

Hi Heather, welcome to the forums.

I understand the sentiment that BB & Stacy offered, but I agree with you, you should be upfront about the seizures. There are bigger issues at play here and the folks you work with need to know how to respond if your seizures generalize into grand mal (tonic clonic) seizures. Seizure patterns can change.

I'd suggest notifying them in writing though. Have a written record of it just in case you end facing discrimination.

What you described sounded like complex partial seizures to me.

I'm sure the neurologist will prescribe one of many possible drugs for you to try soon. Hopefully you will respond to it quickly (and without debilitating side effects).

[brain]

Hi Heather!

I suffer from Intractable Complex Partial Epilepsy,
and from what you are writing is some of the unique
things about Complex Partials (complex partial). They are strange
experiences. Sometimes you can be aware of what's
going on, and sometimes you aren't aware of it.
And you feel like you're loosing your mind and you're
trying to control it, but instead, it's controlling you.
And after when it's all over with it leaves you totally
confused, bewildered, in a complete daze, and often
times totally embarrassed that you end up apologizing
to everyone. It is not unusual not to make any sense
at all. But please do heed Bernard's posting.

complex partial's has a very wide range of interesting things,
and some can be very mild to very wild.

complex partial's has no "age barrier" - it effects anyone; young
and old.


NOW - I can understand why your Doctor would have
stated them as "PANIC ATTACKS" because people DO
mistaken some complex partial's as Panic Attacks. NOW for your
Neurologist to ask YOU why it took you 2 years was
in the wrong; but you did the right thing in responding
that your Doctor had remarked them that he thought
they were Panic Attacks.

SECONDLY - You can inform your boss (Principal) that
"You can't remember if you had to him/her this, or if
it had slipped from your mind, but you just wanted to
remind him/her that you have epilepsy, and that you
had been so busy with the school, but you just wanted
to be sure that they're aware of it." And leave it at that.
And act like it's no big deal, and go on your way. If
you act like a normal chit-chat, your usual self, then
he/she isn't going to over-react in likewise manner, but
if he/she does - you can always head right smack to the
SCHOOL BOARD ADMINISTRATION!

[Stacy]

I forgot to add that almost EVERYONE I meet knows I have epilepsy. It's no big deal to me. I've got nothing to hide. Some people have a stigma attached and will consider you handicapped. That sucks. Brain has a good idea with just making no big deal of it. It's worked for me for many years.

Bernie is right too that people should know what to do in case they need the information. Some people get scared though so watch how you say it. I scared the living (sh_T) out of my chemistry professor, by telling the class I felt really rotten and if I had a seizure to call my brother (taking classes down the hall). Aside from the one chick that thought I was faking it, all went well. I was on two or three meds, and the Dr.'s weren't understanding why my hands were shaking and I couldn't complete a sentence. I now have an MS in Environmental Science on my wall... and I'm a mother of my two boys full time, and my nephew part time.... and my husband sometimes.

Don't worry. It'll work itself out... all for the best.

[POSITIVEPERSON]

Heather how about getting your union rep invovled with telling the Principal so you have protection . You never know how pple will react, I myself have never lied about the epilepsy anywhere. But still pple go from super understanding to stupid. Having the union rep with you when you tell the principal can give you added protection.

Wishing you the best lof luck with the principal and your meds !!!!!

Riva

[moxiecat74]

WOW! Thanks for all the responses! I haven't been near my trusty 'puter for awhile. My husband was installing a ceiling fan & I took the opportunity to have my buddy Shelly run me up to Wal-Mart (since I can't drive myself) to get a journal like Stacy suggested. I will start it tomorrow morning.

I will think about typing up some kind of notification statement for the Big Dog (my boss) but I think ya'll were right about just mentioning it casually. I don't have a union rep. VA is a non-union state for teachers. We do have an association but they are fairly powerless. Anyway, thanks again for the great advice and support. I really feel better about it all now. I'll keep ya'll updated as to the test results as they come in. I'm sure that I will have some questions regarding the meds they will put me on.

P.S. My 'puter blocked the message that Bernard sent me. I have turned of the pop-up blocker. Could you send it again?

THANKS EVERBODY!! YA'LL ROCK!

Heather

[Bernard]

The forum will only create pop-ups to notify you of private messages. You already found and replied to it, so no biggie. You can leave the pop-up blocker on if you like or, if it's like the one on the Google toolbar, you can enable it just for this site and receive instant notifications when someone sends you a PM.

THANKS EVERBODY!! YA'LL ROCK!

[Nancy]

"complex partial's has no "age barrier" - it effects anyone; young and old."

My complex partial seizure started at age 46 - 17 ( good grief !!) years ago.
None of the idiots treating me knew they were caused by a tumor but finally it was found and removed in 2006 and I had another surgery in May of this year hoping to stop the seizures.

Talking in a forum like this - even dumping and whining - is one of the best things you can do for yourself when you hit a rough spot. You're welcome here and we all understand.

We're happy to meet you.

[moxiecat74]

Hi Nancy,

I am awfully afraid that I have a brain tumor. I think that that is what my neurologist thinks. He has ordered an MRI with Gado and witout Gado. This makes me think that he feels that there is abnormal (tumor) material to look for in my BRAIN!!! OMG!! I have always been very intelligent and I'm terrified of losing myself to brain surgery. Some poeple have brain surgery and their entire personality changes. What if my husband no longer knows me? I'm freaking out and imagining the worst possible scenario. I guess I just need to back off, calm down and wait ofr the test results before I start totally losing it.

Thanks for your reply,
Heather

[brain]

OK Ok before you go on a panic spree.

Gadopentetate Dimeglumine aka Magnevist
is via Injection.

It's just a MRI with contrast and it enables
a better view of your brain. And yes, it's
radioactive tracer, but very small amounts,
and I've had this performed numerous times.

The USUAL manner of the way it goes is:

1) They run a normal MRI of your brain first
without anything

2) The Tech comes in and inserts an IV and
then inserts the Magnevist / Gadopentetate
Dimeglumine and removes the IV and puts the
bandage or cotton ball and tape and puts you
back into the MRI machine and then runs the
MRI again. It does not take very long.

They usually call this MRI WOW or W/OW.
(with and without contrast).

This does not necessarily mean you DO have a
tumor, you can, but it can also mean you could
have other issues as well.

There is a reason why they've done this a lot
with mine because of multiple reasons which
they are monitoring closely and it's not a tumor.


HERE is a website that gives you all the info
(and there's pages with details and specifics)
Magnevist

[Nancy]

When surgery was suggested to me for the first time, of course, I refused. I was terrified and old - 1990 MRIs - proved that the tumor was not growing. It HAD started causing me problems but I WAS doing OK ... WHY on earth take the hideous chances of BRAIN SURGERY?

I did go ahead and take the hospitals tests from August 2005 to Feb. 2006 and was finally convinced that surgery was the best thing I could do for ME. It was MY choice and I went into that unafraid ..... well, almost unafraid. The tumor rested against my hippocampus so it was a "deep" surgery. It was performed on a Tuesday morning and I went home Thursday morning.

Since Aug. 2005 I have a 45 minute MRI with/without contrast every 3 months because of the tumor and because the May surgery was so clean we've dropped to every 6 months for 2 more years. (the completely removed oligodendroglioma is an unpleasant tumor).

I talk too much .............. I'm just trying to say that "brain surgery" is a terrifying thought that is not SUCH a terrifying thing to happen.

And like brain said .... Everyone diagnosed with E should have MRIs. MRI does not mean a tumor or even looking for a tumor. It's a wonderful thing to happen for any diagnosis. God bless your doctors.

[Blessed]

Hi Heather and Welcome!

I am also a teacher. I work at a church so it is a little different as far as being in the private sector rather than public. I told my supervisor I had epilepsy and she was cool with it. I also told the Director of the Preschool (I teach the music during the week) and it turned out she had a niece with epilepsy so she was very understanding. I guess it is always in the back of my mind that I might have a seizure in front of the kids but I try not to make an issue of it.

When my oldest son was in the 4th grade, his teacher told the class that she was diabetic. She explained why she had to eat frequently and why she sometimes got weak. I think she did pass out a couple of times in front of the class. She is still teaching at that school and this is public education. I am simply passing this on to let you know that there is hope. Most people are more understanding than we realize.

I hope everything turns out well with your test results.

Blessed
25 mg. Zonegran
Homeopathy
Juvenile Myoclonic Epilepsy since 1982

[j.j.]

Hi Heather,I have just been diagnosed with simple partial seizures and had to give up my driving licence which has meant big changes.I'm sorry to here your employer not very approachable ,but I think honesty is the best policy.Try to stay positive there are lots of people here who can offer support and advice.I still am trying to learn about e and have loads of questions.
Look after yourself, Janet

[brain]

I still am trying to learn about e and have loads of questions.
Look after yourself, Janet

Janet, glad to have you here too!

We're all trying to learn about "E", and we're
all full of questions - zooming around looking
everywhere for answers, doing anything and
everything to stop those E's from happening!

[moxiecat74]

Hi Ya'll,

Well, I sucked it up and went into school today and spilled my guts to my assistant principal and the Big Dog. They were great! My assistant principal has 2 children with Sickle Cell Anemia and so was very understanding about chronic illness. The Big Dog actually hugged me and said that whatever I need, I can have. He said not to worry about time off or if I need to leave early some days. They were both so supportive! I feel bad for having doubted them. Anyhow, I'll keep you updated.

Thanks for listening,
Heather

[brain]

Glad it went awesome Heather!

[Bernard]

Great news Heather.