Helloo!

[mandyxox]

Okay so my name is Amanda, and I'm 16. I'm here because I've been dealing with epilepsy since I was 4, and would have grand mal seizures. I was taking dilantin and it really helped, eventually I started taking fewer and fewer pills a day until I stopped taking it completely. I haven't had a seizure in about 6 years now.

But lately I've been twitching and I'm wondering if this is a sign of my epilepsy coming back? My father had seizures when he was a kid but he outgrew them. I thought I did too but I'm not so sure anymore. It seems when I wake up in the morning the twitching is the worse. It just randomly happens throughout the day. Yesterday I was loading the dishwasher and felt kinda..seizureish, and my head was spinning. That passed and awhile later I blacked out. It wasn't long, but it still freaked me out.

It may be nothing, but then again it could be something. Help?

[epileric]

There's a lot of people who've had epilepsy since they were very young & a lot that have been on Dilantin (me for one).

Be aware of how you feel but try not to stress too much about it, remember stress is a common trigger.

[Rae1889]

Hello Amanda!

I am havent been on Dilantin, I am on Lamotrigine (generic Lamictal) and this is my first anti-epileptic drug. I have those early morning twitches, and they sometimes happen randomly throughout the day. These are called myoclonics. And they are one of my types of seizures

The other one you described after feeling "seizureish" in my opinipon, could be an atonic seizure. it is a seizure where your muscles go slack and you fall down unconscious. This is usually for about 30 to 60 seconds.

What was the feeling you got that you described as seizureish? just the head spinning or anything else too? as this may have been an aura.

[Meetz1064]

Mandy. How's it going? It's nice to meet you. Welcome to CWE!!

Well, it's time for a trip back to the neurologist, and get hooked up to the EEG machine again, darlin'. Sorry, but you really need to.

The twitching you describe sounds a LOT like myoclonic activity (either jerks/twitches or possibly seizures depending on what's going on). The fact that you had some spinning going on, felt "seizureish" (this was probably an aura of some sort) and then blacked out, really also indicates that something neurological--and probably a seizure of some type--has occurred.

Did anybody else witness what happened?? If so, what did they tell you? If not, did you happen to notice any particular injuries?? Did you bite your tongue badly? Wrench your neck? Bruised badly anywhere? Write down anything, and EVERYTHING that you can possibly remember.

Do you remember anything from when you had your grand mals before? (They're also called tonic clonics now.) Like--auras--did you have those?

Have you started your menses recently? Believe it or not, there is such a thing as CATAMENIAL EPILEPSY, and it is tied to a woman's menses. Hormones can play a big factor in seizures. They really can.

Ask all the questions you want here, we're here to help. Check out the Library and the Kitchen, there's LOTS of information in both of those wonderful nooks in this AWESOME home that Mr B built for us.

Take care, and holler if you need anything!

Meetz

[mandyxox]

Hello Amanda!

I am havent been on Dilantin, I am on Lamotrigine (generic Lamictal) and this is my first anti-epileptic drug. I have those early morning twitches, and they sometimes happen randomly throughout the day. These are called myoclonics. And they are one of my types of seizures

The other one you described after feeling "seizureish" in my opinipon, could be an atonic seizure. it is a seizure where your muscles go slack and you fall down unconscious. This is usually for about 30 to 60 seconds.

What was the feeling you got that you described as seizureish? just the head spinning or anything else too? as this may have been an aura.

It was just the head spinning and the light headedness. I really didn't think anything of it :/ I didn't fall at all, just felt nauseous and everything just went blank.

Mandy. How's it going? It's nice to meet you. Welcome to CWE!!

Well, it's time for a trip back to the neurologist, and get hooked up to the EEG machine again, darlin'. Sorry, but you really need to.

The twitching you describe sounds a LOT like myoclonic activity (either jerks/twitches). The fact that you had some spinning going on, felt "seizureish" (this was probably an aura of some sort) and then blacked out, really also indicates that something neurological--and probably a seizure of some type--has occurred.

Did anybody else witness what happened?? If so, what did they tell you? If not, did you happen to notice any particular injuries?? Did you bite your tongue badly? Wrench your neck? Bruised badly anywhere? Write down anything, and EVERYTHING that you can possibly remember.

Do you remember anything from when you had your grand mals before? (They're also called tonic clonics now.) Like--auras--did you have those?

Have you started your menses recently? Believe it or not, there is such a thing as CATAMENIAL EPILEPSY, and it is tied to a woman's menses. Hormones can play a big factor in seizures. They really can.

Ask all the questions you want here, we're here to help. Check out the Library and the Kitchen, there's LOTS of information in both of those wonderful nooks in this AWESOME home that Mr B built for us.

Take care, and holler if you need anything!

Meetz

Hi Meetz!

Oh goodness more EEG scans..greaat. No one was home when I blacked out, but it wasn't too serious, I didn't bite my tongue or fall or anything it was more so everything went blank for about a minute.

I don't recall ever having an aura when I had my grand mals. One minute I'd be watching TV and the next I'd wake up in the hospital.

I've had my menses, and they've been regular for the past two years, haven't had any problems with epilepsy until now. I just finished on Friday and that's 2 days before I "blanked out." Maybe that has something to do with it? But the twitching has been going on for a couple of months.

Thank you all, I really haven't met anyone else who goes through these things.

[Meetz1064]

then, let me ask you this. Have you changed anything in particular in the last few months that may have aggravated things?? In other words, has your sleep pattern changed, your diet changed drastically, or anything like that???

I personally think it's time you need to start keeping a journal--by doing that you can possibly find what may be triggering the myoclonic events that are evidently going on. I'm going to post a list of what I tell people to put in the E journals so that they have a good idea of what to look for. You can then take this with you to the doctor, and it can help them figure out any triggers/patterns to the seizures.

Here it is. Please don't be overwhelmed. Feel free to take things out if you want. Also, some people do track their bowels, too, as they know that is one of their triggers.......

*****************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.

***************************************

Responses To The Above List

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

*****************************

I hope this helps you out some.

Holler if you need anything.

Oh, and before I forget. I was on Dilantin, too. For 35 years. It helped me quite a bit.......but I still had breakthroughs on it, and had to have another anti-epileptic drug all the time.

[RobinN]

Hi Mandy - Welcome to CWE
My daughter Rebecca began having seizures when she was 14. She just turned 18 last week, and we are controlling her seizures with nutritional changes, and vitamins and minerals. We tried meds but they made the seizures worse. She has been tested and has hypoglycemia, so I am working with that knowledge to figure out how to raise her seizure threshold. Her's tend to happen around her time of the month TOM but not always.

I hope you can find the support you need and answers to figure out how to improve your situation here at CWE. Lots of different stories to tell.

[Nakamova]

Hi Mandy, welcome to CWE!

As we age, are seizures can change too, especially in response to altered balances of chemicals and hormones in the body. You're also at an age when there's a spurt in growth of nerve cells -- you're brain is changing too. I agree with the others above, that it sounds like you're having myoclonic seizures, and perhaps absence seizures as well. In addition to checking in with your doctors, I recommend that you make sure you're getting a balanced diet, and consider supplementing with B Vitamins, Omega 3 oils (like flax or fish oil), magnesium and other brain-friendly nutrients.

Best,
Nakamova

[Bernard]

Hi Amanda, welcome to the forum.

Your story seems familiar... Early childhood epilepsy treated successfully appears to disappear... reappears during puberty...

I would highly recommend seeing a neurologist/epileptologist and getting some testing done. The hormone changes that accompany growth at your age can trigger seizures.

Are you keeping a diary/journal to track when these events are occurring? Is there any pattern to them?

FYI - Stopping drugs when seizures have been controlled for years

[BuckeyeFan]

Welcome Amanda. As I read this post, I found everything I was going to say. I agree with it all, but don't be overwelmed. You don't sound like it is serious yet, so take it one step at a time.

CAUTION: If you get the 'seizurelike' feeling, do not drive (assuming you already have your license).

Anyway, make yourself at home and I will get you a hot cocoa.

[mandyxox]

Are you keeping a diary/journal to track when these events are occurring? Is there any pattern to them?

I'm not keeping a diary/journal, but I definitely will start doing that. I don't know much about epilepsy because when I had seizures I was too young to understand. So now that it's coming back I have no idea whats going on.

Welcome Amanda. As I read this post, I found everything I was going to say. I agree with it all, but don't be overwelmed. You don't sound like it is serious yet, so take it one step at a time.

CAUTION: If you get the 'seizurelike' feeling, do not drive (assuming you already have your license).

Anyway, make yourself at home and I will get you a hot cocoa.

Oh good, I was hoping it wasn't too serious yet. I do have my license but I know not to drive when I get the seizurelike feeling.

And again thank you all(:

[NomedArt]

I think we should make the text smaller on here oh and hey amanda, so much was said took me awhil to read it all

I agree to the journal, oh and what you described happened to me last week and usally happens.

The seizurish feeling is just a reminder to you, from your body and yes you can go into one when you feel like that

When ever you feel like that again just focus that feeling to something you like doing. When it happened to me last week i was already drawing but couldnt concentrate.
then i felt like you said, but i focused it all in my art instead of it taking over.

Since it was a reminder from my body i just reminded it that i do have controll. But do not do this foolishly , due the journal first find out what makes them tick