Hi :) first time posting, scared

[Marissa121]

Hi there, my name is Marissa. I'm new to the site and am looking for some support as I am very afraid of what has recently transpired in my life!

I'm 35 years old and have never had a seizure before... here is what happened to me:

April 9th was like any other day until about 1pm when I experienced what my neuro now believes was a simple partial seizure. I had an INTENSE and sudden feeling of fright, anxiousness, and panic for no reason at all. It was so PHYSICAL. I'll never forget the feeling I had. It lasted about 30-45 seconds when I was just sitting on the couch with my son reading a book.

The remainder of the day I was very tired, took a little nap, and felt ever-so-slightly nauseus. I had a dinner party to attend that night and decided to be the designated driver for myself, my mom, and sister. I did not socialize much at dinner, felt very "blah" and out of it. We were in the car and driving home by 10:00pm.

From what I've been told, this is what happened next: Around 10:15, going 40mph on a straight and flat road, I began to veer to the left. My mom jokingly said "Cut the crap Marissa" thinking I was playing around. A split second later she realized that it was no joke and I was "gone"... completely unconscious and "twitching" . We continued to drive on the grass on the side of the road for about 10 more seconds until I finally crashed into a tree. Air bags deployed, car was totaled, thank the lord everyone was ok. I still did not "wake up". My poor mom and sister thought I was dead. Police and ambulance were called. Although I stopped twitching, I remained unconscious for about 10 minutes. My mom said drool was coming from my mouth. I woke up just as they were loading me onto the ambulance and remained in a confused state for approximately 5 more minutes. I have NO recollection of anything except leaving the restaurant.

CT scan at the ER came back normal and EEG showed "abnormalities". I currently am scheduled for an MRI, additional EEG, and a consult with a seizure specialist on May 26th. I'm a veteran and have insurance through the VA so it takes some time to get appointments. My General Neurologist believes I had a complex partial seizure and my earlier feeling of panic was a simple partial seizure.

I'm very afraid that I have a brain tumor as 2 other family members (aged 81 and 57) have passed away in the last 4 years from brain tumors. Or, maybe I've developed epilepsy at 35 years old? Is that even possible? Or can someone just have one random seizure?

Another note, I'm bipolar and have taken Lamictal as a mood stabilizer for over 5 years. How could I have a seizure when I'm already on this anti-convulsant? (a pretty hefty dose)

Other weird symptom I have are numbing of my arms and legs at random points in the day, not every day, but at least once a week. The numbness lasts a few minutes, up to 5 minutes each time.

Ugh, any advice or kind words are appreciated! I'm so nervous for May 26th and so fearful that this may happen again. Doctor has not increased my Lamictal dose or put me on any other medication. I did have my drivers license suspended for a minimum of 6 months of being seizure-free. this has been extremely difficult as I am a working, single mother of two young kids... fortunately I have a very supportive family.

Take care everyone!
Marissa

 

[Frink]

Hi Marissa,
Welcome to CWE.
Sorry you had a couple seizures. Many people with TLE have fear based seizures and nausea and fatigue are common post ictal symptoms (post ictal means after a seizure).

Yes it is possible to have a seizure out of the blue and never have one again, but you describe having 2 seizures and 2 or more unprovoked seizures is usually called epilepsy (unprovoked as in not caused by a fever or withdrawal or reaction to a very recent head injury.)

Try not to get too far ahead of yourself with worrying about cancer.
There are many reasons to develop seizures/epilepsy without having a tumor, head injury (even mild one), viruses, genetics, hormones, mineral imbalances, medication reaction, withdrawal, fever...

Yes it is very possible to have a seizure while taking an anti seizure medication. Different types of seizure can respond to different medications and for some people, like me, we do not respond to any seizure medications, at least not a positive response.;-)

 

[opusde1988]

Hi Marissa, welcome to CWE.

I hope everything goes well regarding the MRI. It's a frustrating situation, but the people on this site are amazing. Just keep your head up and think positive thoughts.

 

[ln1]

Hello Marissa,

I'm so sorry to hear of your experience and completely understand your frustration and fear.

I'm in my late 30's and was diagnosed with epilepsy last year. My sister who is in her mid 30's was diagnosed with epilepsy a few months ago.

I learned that I actually started having seizures as a child. They were absence seizures. Although I remember thinking "these are strange", it never occurred to me that something medical was going on. In my teens and early 20s, I had no seizures. I gave birth to my son at 24 and was fine. After giving birth to my daughter at 26, I started noticing quite a few things. I suddenly became (and stayed) depressed, started having panic attacks, along with other things. In my early 30s, I blacked out while driving and crashed into the curb. Last year, I had a tonic clonic while watching TV. This is when I saw a neurologist and learned I have seizure activity in my temporal lobe.

My sister who I previously mentioned, had major headaches when she was a child, but I guess my parents didn't view it as something to see the doctor about. They just treated it at home. She didn't have anything else until a few years ago. She had an episode...one doctor said she had a seizure another said she fainted. Since she decided to go the "I fainted" route, she wasn't medicated. She had four more tonic clonics, was seen by a neurologist, had an EEG done, and learned she too has temporal lobe epilepsy.

Sorry, I know this was a long story. I said all of that to say it is possible that you've been having seizures longer than you know. It is also possible that it recently developed, like a 65 year old I know who previously had no history of seizures or head injuries.

Please know that there are a lot of excellent members on this forum, and always feel free to post what's going on / how you're feeling.

I wish you the best in getting all of the answers you need and peace as you go through this journey. :hugs:

 

[Porkette]

Hi Marissa,
Welcome to CWE! It sounds like you may have had a complex partial or absence seizure and right before that a simple partial seizure also called an aura sz. Many times lack of sleep and stress are the two main things that can trigger seizures for a person.

Sometimes a seizure can happen only one time in a persons life but then there's been times in my family when people have had tonic clonic (grand mal) seizures for over 20 yrs. and then they just stop.
Often seizures happen do to hormones changing each month. Keep track of any seizures write down on a calendar what time they happen and describe them by doing this it will help the Dr. see if you have a pattern in the seizures meaning if there are certain times of the day/night you have seizures or certain days of the month. I always have seizures the week of the 11th of the month.
I found taking vitamin B12 and putting coconut oil on my skin a big help reducing seizures. The B12 calms my nerves and the coconut oil builds up ketones in my system which helps reduce a persons seizures sometime. Whatever you do stay away from diet soda or anything with NutraSweet in it they have proven that nutra sweet causes more electrical activity in the brain and can trigger seizures for many people. I wish you the best of luck and May God Bless You!

Sue

 

[seagull]

That was scarey experience.When mine first happened about your age it boink on head cause mine but each person have e be different things or even no cause just happens..The panic you mention is very common and quite awful but when you recognise it and talk to others with same thing I not saying it get easy but you not alone...Yes it very physical but try explaining that to someone who don't understand can be problematic so you in good company many on here get the panic feeling then you panic because you don't understand why you panicking.
Try not to think of the worse senecio I know it not easy but brain tumour not common sometimes you may never know why but everyone has sz tolorence anyone anytime can get it.Possible never happen again nobody knows.Get Mir scan done first and go from there and best not drive until you know for sure and go by what nuro doc tells you at this stage.Try try relax

 

[acshuman]

Can IT Really Be Epilepsy?

Marissa,
Welcome to CWE! We will try to answer any questions that we are able to answer!
It is possible for a person to have a seizure for the first time at any age! There is no set age that E starts or ends. I had severe head trauma when I was 2, but I was not diagnosed w/E until I was 11. When the neurologist did an EEG he found a very small spot of scar tissue on the surface of my brain, right where I had hit my head when I was 2.
I had my first absence seizures when I was in school. I got up out of my desk and went to the bathroom. When I got there I would sit down on a stool until the seizure was over. Luckily, I have never had any type of tiredness, headaches or nausea after a seizure.
I have now had E for 50 years. It can be very difficult to understand that you have E right after you have been diagnosed! If your tests on 5-26-2016 give the doctors any more information that they can use to tell you what is happening, it could be very eye-opening for you.
I know that you will have many questions to ask, so feel free to ask away because we have many years of experience living w/E and we want to help a newly diagnosed person as much as we can.
Don't withdraw within yourself! You will need to talk about your diagnosis as much as you can as often as you feel you need to. The support of other people can be what feels like a life-saving thing when you feel like you truly need that support! :hello:
I am sending you a friend request so that you can ask me anything you want to in private.

ACsHuman

 

[Nakamova]

I'm very afraid that I have a brain tumor as 2 other family members (aged 81 and 57) have passed away in the last 4 years from brain tumors. Or, maybe I've developed epilepsy at 35 years old? Is that even possible? Or can someone just have one random seizure?

I had my very first seizure at age 35, so yes it's possible to develop epilepsy at any age. A certain number of seizures are "one-offs" and I hope that's the case for you. But the EEG abnormalities do suggest that perhaps you have a lower seizure threshold. I hope you get some answers soon.

All sorts of things can be seizure triggers -- fatigue is #1, but they can run the gamut from hormone fluctuations to emotional stress to food sensitivities. If you can, keep a "symptom diary" tracking anything unusual you've experienced in the last days/weeks/months -- it might be relevant and helpful to your neurologist. Be sure to write down all the questions you have for your neuro and have someone with you to take note of the answers -- sometimes it can be quite overwhelming.

Another note, I'm bipolar and have taken Lamictal as a mood stabilizer for over 5 years. How could I have a seizure when I'm already on this anti-convulsant? (a pretty hefty dose)

As odd as it seems, some people have had their seizures triggered or exacerbated by anti-seizure medications. Perhaps you've developed a sensitivity over time? Another possibility: Estrogen spikes can lower Lamictal levels, so if you have wonky hormones (or are pregnant) that could lower your seizure threshold do to the fluctuating Lamictal.

Other weird symptom I have are numbing of my arms and legs at random points in the day, not every day, but at least once a week. The numbness lasts a few minutes, up to 5 minutes each time.

One possible cause of peripheral neuropathy (or numbness) is Vitamin B12 deficiency. B12 is also very important for brain health. If you suspect that your diet may be lacking, ask your doc about changing things up, or adding a supplement.

 

[Marissa121]

Thank you all for the warm welcome! I will keep you posted after I have my next tests on May 26. Thanks!! Marissa

 

[seagull]

Nakemova....I so disappointed I have for ages thought your name exotic Native American princess name.it Deep South sort of hillbilly accent knock them over.or I maybe wrong are you native Indian princess would you prefer that..

Sorry Maritsa high jacking thread but got know if nak princess or hilli Billy's maybe newyork American.

 

[Belinda5000]

Hello Marissa
welcome to CWE
Anyone can have a seizure and meds don't always stop seizures either at any age anyone can have one I've had them all my life.
In most states you have to be 6 month seizure free before you can drive.

 

[Nakamova]

Nakemova....I so disappointed I have for ages thought your name exotic Native American princess name.it Deep South sort of hillbilly accent knock them over.or I maybe wrong are you native Indian princess would you prefer that..

Sorry Maritsa high jacking thread but got know if nak princess or hilli Billy's maybe newyork American.

Seagull, some people have said that I could pass for Native American, (long dark hair, strong nose, coppery tan in the summer), but my true ancestry is relatively common...I chose "Nakamova" for multiple reasons. Here are a few:
A. I LIKE that it sounds exotic. And that I might be an exotic-looking knock-out. Unfortunately this isn't true, but an old lady can dream.
B. I was once a member of a bowling league. We would often yell encouragingly at the bowling ball: "Knock 'em ovah", (i.e. knock the pins over). We would yell other things too, but this is a polite forum.
C. When I have a seizure, I will knock myself over, and I may knock other things/people over too. My name is a warning.

..and now back to our regularly-scheduled programming.

 

[Justice035]

Good Morning Marissa,
Although our story is not the same, it does bare similarities. I am 42 yrs old, never had any seizures but was recently diagnosed with Temporal Lobe Epilepsy in February 2016. I too was terrified that I had a brain tumor or brain cancer (common on both sides of my family). I have had 3 MRI's; the last showed that I have a herniated lesion and an abnormality on my Pituitary gland but its not related to my seizures...I don't understand that. I will also have my 4th MRI on May 26th, fingers crossed that it will reveal helpful information and not just something to add to my file. It has been frightening, stressful, isolating, on-edge, patronizing, and absolutely life changing.

My advice to you is to write down your concerns and ask questions, be your own advocate, research and be open to others experiences and wisdom; get a second and third opinion if needed. There may be times that you feel depressed, alone, angry, overwhelmed and afraid; its ok....scream, cry, bang your fists if you want too but just don't give up. A lot of friends and family won't understand and you may answer their same questions over and over with the same response, over and over; daily; weekly; and people will constantly ask "how do you feel?...you look fine....are you ok?" They don't understand that we don't feel bad and we may not convulse; just try to keep in mind that they care but don't know what to say or ask.

I absolutely can relate to how you feel; I'm still learning, waiting, wondering and still need to follow my own advice. Positive energy, prayers and good thoughts to you.

 

[N Sperlo]

Hey Marissa.

I haven't read the responses, but wanted to say, sorry to hear this has happened to you. It is scary.

You were already on one anticonvulsant, but many here are on many. I am on two myself and they do well, but others here are on many and can't find anything to prevent seizures. Follow your doctors directions as to what to do with your meds.

Since your MRI has come back normal, put the idea of a tumor to the back of your head. You don't need that stress. There is no proof anything is wrong.

There are many reasons people have seizures. Many of us don't know why. I sure have no idea what's going on up there.

It is completely possible to live a normal life with a seizure disorder. I am luckily able to drive again. When I'm not able to, I find a way to work. I have had family members drive me to work. I am blessed to have family and friends to help me out.

I'm back to normal now and the people I deal with and work with would probably be amazed with what I have dealt with. I don't want them to have to know, though.

Good luck!

 

[klewlis]

It's June now--any updates? How are you doing?

 

[Zolt]

Sorry, I'm a little late to this party.

"Since your MRI has come back normal, put the idea of a tumor to the back of your head. You don't need that stress. There is no proof anything is wrong." - N Sperlo

I think what N Sperlo means is CT not mri, since we do not know the results of the MRI yet or at least we haven't been told in this post. I had a baseball size tumor in my head and it was the CT scan that first caught it. So i agree, you should not worry of a tumor since the CT scan of your head would have shown it.

"an INTENSE and sudden feeling of fright, anxiousness, and panic for no reason at all " Your description of a seizure Marissa is the same way i feel when one is starting.

Keep us posted,

Cheers

iano: op:

 

[Hunter Dave]

I am glad that you're ok , I know it had to scare you when you crashed into the tree . Once they have you 100% in control of your seizures I don't see why you can't resume your driving . The tumors you mentioned , you may need some genetic testing if that can even give you a result . Time may be what tells as far as that goes . The one thing that can cause a seizure is STRESS so don't worry about anything , just one day at a time . I have seen people with normal eeg's that have Epilepsy so that doesn't mean anything either . Listen to what your body tells you ok , it will let you know when you can do something and when not to . I hope you will stay in touch Marissa . I got Epilepsy from Boxing many years ago but I've done well thank GOD . Stay away from alcohol and see if lights affect you in any weird way too . I am photosensitive , I just have to wear Shades in stores a lot . You said you were already on an anticonvulsant medication, does the Doctor know about the numbness in your limbs ? If not let them know . Marissa , you're going to be just fine , you're not alone just stay in touch . You have a big Family here .
D

 

[Hunter Dave]

Marissa , I know that seizures can be scary but don't be afraid to live .

 

[Hunter Dave]

Forgive me for the numerous posts Marissa but I read up on something for you . They may have to add another antiseizure med to what your taking now in order to completely control what's going on . You want that to be under control if your going to be driving Marissa , make sure you're ok and well rested before getting behind the wheel .