Hello - new here!

[fifi74]

Hello,

Just over a week ago I had my first ever tonic-clonic seizure, whilst at work. This resulted in me spending a night in hospital, undergoing blood tests and a CT scan. The blood tests and CT scan did not reveal a possible cause for the seizure, so it was recommended that I make an appointment to have an EEG and see a Neurologist. A few days later, while a passenger in a car, I had another tonic-clonic seizure. This again resulted in a number of hours spent in the emergency department, again with no immediately obvious cause for the seizure.

Since having these seizures and doing my own research and speaking with doctors, I think I may have been having partial seizures and experiencing auras for a couple of years. For example I have had many occasions where I have tried to read something and the words make no sense, however a minute or two later I am able to read and understand the sentence. I have also been accused of "being able to smell earthquakes" because I smell things (eg. burning) that no one else can smell. I think I have been having some partials since the tonic-clonics, which is making me feel fairly confused and foggy at the moment.

The doctors have put me on sodium valproate until I can meet with a Neurologist and be properly assessed. This medication has been making me feel quite nauseous and I think tired.

I'm a 35 year old female and live in Melbourne (Australia). I came across this site and forum and have found it, and all you wonderful moderators and contributors, to be a wealth of information. I'm finding this whole experience a little bit scary, so it has been great to come across a community of people going through similar things and willing to share their experiences and hard earned wisdom about epilepsy with others. Thank you!

Anyway, I just wanted to introduce myself and would welcome any advice you are able to offer as I begin on this journey...

Cheers,
Fi

 

[epileric]

Welcome Fifi

Sorry to hear about your recent seizures. They definitely can be a huge change in lifestyle.

I would recommend you start keeping track of your daily living habits... when you go to sleep, wake up, when/what you eat, when you move your bowels etc. One of the other moderators has a great list of things to keep track of.

Hopefully this will make it easier for you to track what might trigger your seizures.

Also be aware that there are ways of controlling seizures than pills that many people here have tried. All pills have side-effects so it's a matter of finding what ones have the least side-effects but the most control. I'd find out what opinions your neurologist holds on the alternative treatments for epilepsy. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Meanwhile, welcome again.

 

[hawke86]

Welcome to CWE!!!!!!!!!!!!!!!!! Everyone here is cool and friendly. Again Welcome. Everyone here looks out for each other. I know cause evryone was getting concerned about me, cause I haven't been on here for a long time. I hope you enjoy it here.

 

[dfwtexas]

Welcome!
This is a wonderful place, it has been a godsend for me.
Keeping a journal is helpful. I have found lack of sleep, stress and certain lights are triggers for me. But just when I think I have figured out, I can still have a seizure that doesn't fit into the triggers I thought i had identified.
I have both simple and complex partials
jenn

 

[skillefer]

Hi Fi! Welcome to CWE. My first suggestion, is to keep a journal. There's some specific stuff you want to jot down, because it will be very helpful to your neuro.

1. Sleep= how much, and is it interrupted or not
2. Food and drink= what, when, how much
3. Stress= what kind of stress are you going through (and that includes physical stresses like having a cold, migraine, illness, etc...)
4. Medications= What, when, how much
5. Supplements= What, why, when, how much
6. Odd feelings= odd sounds/smells/tastes/feelings/sights, migraines, deja vu moments, etc... (when, where, how long, and what were you doing prior to it)
7. seizures= when, where, how long, what were you doing prior
8. Your cycle = If your a woman, seizures can be triggered by fluctuations in hormone levels. And if your a guy, guess what, your hormone levels fluctuate too!



Here's what the doc will be using the info for...He/she is trying to figure out what might be triggering your seizures. Here's some basic info to help explain...

Everyone can have a seizure. Most people have a pretty high threshold. They can deal with alot of stress and stuff without having a seizure. For people with epilepsy, that threshold is lower. It doesn't take near as much to trigger a seizure. What the doctor will be looking to see is if there are any particular things that cause you to have a seizure. If they can find them, then you can avoid those triggers and hopefully you won't need meds, or if you do, at a minimal amount.

You want to make sure that between now and the neuro appt, that you start jotting down any questions that you think of and jot them down. Most of the meds, as well as the seizures, are good at scrambling up our memory. If you can, have a loved one go with you. That way, they can help you remember just what the doc said as well as any additional questions that you or they have. While waiting for the appt, you might want to make some lifestyle changes. Here's what we most often suggest.

1. Get 7 hours of sleep minimum. (sleep deprivation is the most common trigger for seizures)
2. Eat 6 small meals a day. (I know, sounds huge but it isn't. Your meals should fit on a dessert plate and contain a protein as well as a carb. Drops in blood sugar levels can trigger seizures.)
3. give up caffeine ( I know it's hard...But it's a stimulant. And stimulants like caffeine can trigger seizures.)
4. Cut down or completely give up drinking. (Alcohol messes with the meds anyway...)
5. Find a healthy way to deal with stress. (walking, exercise, prayer, meditation...etc.. Stress is one of the most common triggers.)
6. Avoid OTC medicines for colds. (They usually have stimulants in them...And stimulants can trigger seizures)

While you wait for the MRI and EEG results, don't be surprised if your EEG results come back normal. I've had plenty of EEG's in the 30+ years I've had seizures, and only 2 came back abnormal.

If you are wanting to have kids someday, make sure that you tell the neuro that. That may definitely influence which med they choose for you.

If you don't want to take meds, check out the info on the alternative treatments here. Many of us use the alternative treatments to complement our medications. And others use the alternative therapies alone.

Start taking folic acid if you are a woman of child bearing age. Even if you aren't "planning" on getting pregnant...folic acid can help protect a baby from birth defects.

Start jotting down important medical info about your relatives. For example, were any of them diabetic or have a history of seizures? Do you or they have migraines? Those are important facts that the neuro will need.

And, if your on any medication, take the bottles with you when you go to the neuro's appt. That way, he can see exactly what your taking and how much.
Hope this helped.

 

[fifi74]

Wow - thanks to all of you for the warm welcome and terrific tips and advice. I have been feeling really strange today - fuzzy in the head, warm/tingling in my scalp, funny metallic taste in my mouth and a little panicy. This is the first time I have spent any time alone since the seizures and I think I am a little scared that I am going to have one with no one around to help me. So, it has been great to hear back from others "who have been there before" and can allay my fears somewhat.

I'm going to start my journal today, because you are right I have been forgetting things and getting very confused about when incidents have occurred.

Thanks again everyone, you have been really helpful. Hopefully, once I've got my situation sorted, I might be able to repay the favour...

Cheers,
Fi

 

[Meetz1064]

hello!!

--> TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG. Why? You might be triggered by certain colors and patterns. That can be helped by using blue tinted glasses, glare-screens for computers or other aids.

--> Exercise is another issue. Some people can have what's called a reflex seizure from exercise...be it from overexerting, or from the type of exercise or whatever. So, it's important that you don't do things like biking, swimming, hiking, mountain biking and bungee jumping--if you do them, you MUST have a partner. Reflex seizures can be partials, tonic clonic or whatever........but it happens in response to the exercise or a specific trigger....

--> Smoking and alcohol are also neurotoxins for our brains, in addition to MSG and other assorted goodies. Get rid of them.

Hope that helps.

And welcome to CWE!

Meetz
:rock:

 

[dfwtexas]

when doing your journal, make a note if you think of a question and mark it so when you go to your neuro appointment, you will have your list of questions, as well as having your journal notes to answer any questions he might have. My doc always to tell him what I remember before the seizure and after, if I know how much time I lost in the post seizure period, if I wet my pants, did I injure myself, etc. I have found I have some short time memory loss either from seizures or meds and other say the same. So writing notes is very helpful.
I have 3 dogs and an adult son that lives with me due to health issues prior to getting seizures. His work hours are very different, however after having the seizures last week, he changed his work hours to mine so he can be home with me. Dogs are very comforting and help to ease my nerves and the 3 of them are very entertaining too!

 

[Nakamova]

Hey Fifi, welcome!

You've gotten some good advice from the other folks here, which I heartily agree with. I would just add that after my first seizures I felt incredibly lousy and sick -- I just assumed it was from the seizures, and while some of it was (like my back pain and sore mouth) it turned out that most of what I was suffering from was from way too high a dose of AED medication. I wish I'd known to ask about that at the time, it took a while to get that figured out. Be persistent about asking questions from your doctors. Write down the answers, so you have a record to refer to.

Best,
Nakamova

 

[danjor]

Everyone has given great advice. So Im just going to say welcome!

 

[moonchild1970]

Welcome Fifi! It's great to have you here.

You sound like me. I too have been having the same kinid of seizures, and the same symptoms and also have been just recently diagnosed.

 

[RobinN]

Hello Fifi - Welcome to CWE
I hope you are able to use some of the info here to make this journey a little bit easier.
We have been helped by making nutritional changes. I say we, because it is my teen that I have been caring for. It has made a world of difference.

 

[fifi74]

Hi Everyone,

Thanks agin for all the warm messages of welcome and absolutely brilliant advice. Keeping the journal has been brilliant, as I am now starting to identify regular feelings that occur around the same time each day after taking the medication - so must be related to the medication.

One thing I have noticed is that I've had a couple of occasions where I can't understand what someone is saying to me and have had to get them to repeat it a couple of times. Then, usually within 30 seconds to a minute, I understand what they are saying. Does that sound like a seizure or a side-effect of the medication?

I've just booked my EEG appointment, and appointments with two neurologists - which will start to take place in the coming couple of weeks. Very much looking forward to it so that I can start to have some of my questions answered and develop a plan of attack for the future.

Again, thanks to all of you for your kind words and feedback!

Cheers,
Fiona

 

[epileric]

One thing I have noticed is that I've had a couple of occasions where I can't understand what someone is saying to me and have had to get them to repeat it a couple of times. Then, usually within 30 seconds to a minute, I understand what they are saying. Does that sound like a seizure or a side-effect of the medication?

Actually that describes exactly what happens to me during a seizure, at least most of them. I often have to find ways to procrastinate for that minute or so since I often can't talk either or can only say certain words.

 

[Nakamova]

Hi Fifi --

I recommend you write down any and all questions you have about epilepsy, and bring them to your neuro appointments. And then write down the answers too.

 

[Baileyjane]

Hi Fiona and welcome. I do hope you have success with you neurology appts in a couple of weeks. I hope life goes smoothly for you till then. I am from Melbourne also. I have complex and partial seizures from an injury to my brain I sustained last year. This site is very informative and really supportive, so try to stay relaxed and not frightned!

 

[Cinnabar]

Welcome fifi, you'll find nothing but solid information and support here. Glad to have you here!

 

[fifi74]

Hi Everyone,

Thanks again for all your support, advice and welcome!

I've been a little silent as I didn't really feel like I had much to contribute to discussions, given that my seizures are such a new phenomenon. Instead I've been sitting back and reading current posts and past posts to learn more and familiarise myself with the site. What a fantastic site it is too!

Anyway, I have a bit of an update on my condition. I recently saw a neurologist (epilepsy specialist) and had an EEG. I got a phone call from my neurologist today to say that "there was alot of epileptic activity in my left temporal lobe", which is what she suspected after hearing my seizure witness accounts and learning about some of my language/speech processing and comprehension issues.

As a result she has asked me to increase my dose of Tegretol and continue taking the Sodium Valproate. I think the main reason for this is to try and prevent any more tonic-clonics before I see her again in a couple of weeks.
I'm also booked in for an MRI before I see her.

I'm just wondering if anyone else with left temporal lobe epilepsy has language / speech processing and comprehension issues. I also think I am having memory issues as well, but I guess that could be as a result of the medication?

I have to say that I am feeling both happy and sad about the news. I know it is good that the doctor has been able to isolate the epilepsy, so I can get more targeted therapy. But I'm also sad 'cause it basically confirms that I do have it. But trying to remain positive, and realise that things could be so much worse!

Thanks again everyone!!

 

[Nakamova]

Hi fifi --

I think temporal lobe epilepsy is more closely associated with memory issues, although the meds can definitely play a role as well. You might want to ask your neurologist about doing a neuropsych exam in order to get a baseline measure of where your cognitive skills are now. That way it's easier to track the effects and get a handle on whether they are seizure-related or med-related. (I'll be having a neuropsych exam at the end of this month. I wish I'd had one done when my seizures first started, because then I'd have a clearer sense of how my brain has changed over the last ten years.) Better late than never I guess.

 

[skillefer]

Glad to hear that you have an answer...but I agree...in a way, it's a sad moment too...Just think though, with an answer comes a plan more targeted for you.