Do you guys think this sounds like epilepsy?

[Katarn112]

Hello, all. I'm posting here because there's a chance I might have epilepsy, because of some recent events that have happened to me. I really need your opinions, and this is all pretty scary. I'll start from the beginning. About a month ago I was just sitting in class during a lecture when I started feeling really dizzy. I started getting this feeling like someone was squeezing my head in on either side like it was being squeezed in a vice. Then the next thing I know I'm on the floor, with my entire class staring at me, and my teacher kneeling next to me saying my name. I had a pounding headache, and I was so confused, I had no idea what was going on. Everything felt dreamlike for the next hour. I was immediately taken to the hospital in an ambulance, of course. They said they didn't believe it was a faint, and that I should have immediately had a follow-up with my doctor. I never did. I had no memory of when I "fainted", and a friend of mine who was in class at the time said that before I collapsed, I was staring straight ahead of me with my eyes glazed over. The horrible headache from this lasted for a few days.

Since then, I've had strange random jerking and twitching once in a while. For example, I was watching TV, and one of my legs just started jerking left and right a little bit, for about 10-15 seconds, then stopped. Things like that. Well, a couple nights ago was the biggest of all. I was in bed, when I started hearing this noise that sounded like loud machinery turning on or something. (aura auditory hallucination, maybe?) Then a few seconds later, the convulsions hit. These were no minor twitching, these were full-body convulsions, like the kind you'd see in a tonic-clonic/grand mal. Yet the strange thing is, I was conscious through the entire thing. It wan't short, and seemed to have lasted around 45 seconds to a minute, but then again I have no idea how badly my sense of time was distorted. After this was over, I had very sore muscles for the next couple days. It felt like I was hit by a truck. Every muscle I can think of was sore. I also had bitten into my tongue pretty bad, which still hurts.

I'll admit I'm pretty scared, it's weird that this sort of thing that can just pop up out of nowhere. I'm 19 years old, by the way. Do you guys think this might be epilepsy? I don't want to go to the doctors over nothing. Thanks!

 

[Meetz1064]

I'd have to

say YES. The twitching that you speak of sounds like MYOCLONIC jerks/seizures. You DO need to get in to see a neurologist ASAP!! He/she will probably want to order an MRI (to check for physical abnormalities in your brain that may have caused this), and an EEG. PLEASE insist that the EEG be an ABSOLUTE MINIMUM of 24 to 48 hours--this will make it more likely for the doctor to catch an incident. If you can get one that's 72 hours or more, that's even better.

The pounding headache you speak of after the first incident, the "faint", is common afterwards.....it's called a post-ictal headache, and you were suffering post-ictal confusion. And yes, the "faint" was PROBABLY a seizure of some type.

The auditory hallucination probably WAS an aura.......they vary person to person and some people (like me) don't have them at all. Wish I did. Auras, by the way, are also a form of seizures--simple partial seizures.

SOME people DO go through convulsions (tonic clonics or grand mals) while awake. Not often, but some do. And YES, being sore is to be expected, because EVERY limb and muscle in your body is contorted and contracted in strange ways, and there is a LOT of power involved, too.

Start an E journal. Document EVERYTHING. Here's what I typically suggest for anyone to put in their E journal. Yes, I know it SEEMS overwhelming. BUT, in the long run, the E journal will help you and your doctor eventually track down what may be triggering your seizures......

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

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. Some people do also keep track of their bowels, too...

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.

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).

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.


Hope this helps you some.......

Take care. Oh, and btw, welcome to CWE!!!

Meetz
:rock:

 

[epileric]

I agree with Meetz, it does sound like epilepsy. Do as she says (she knows what she's talking about) but I would suggest that you also start looking for a neurologist to see, even better it they specialise in epilepsy.

 

[RobinN]

Welcome - something that took me a while to understand but I am going to jump right in here and attempt to explain it:

Epilepsy is only a label. It is a label they put on you when you have have two or more seizures. Seizures are only a symptom of some other cause. It is up to you (and hopefully your doctor) to find out what that cause is. Most of the time conventional doctors don't have the time to go searching with you to find the cause. I believe that most insurance companies tie their hands as to how extensive they can be when doing that search.

That is where CWE was born. We share and support each other while on this roller coaster ride. I am one of the rebels here going the alternative route. My daughter is med free, and her seizures are controlled by nutrition and neurofeedback.

Bernard, I need a new sweatshirt that says "Nutrition and Neurofeedback"

 

[darcness]

It certainly sounds like E to me.

Please do as others have said and see a neuro as soon as you can. If you don't know where or how to find one, go to your GP and get them to suggest one for you. That's how my wife did it.

Also, don't get too worked up about things yet. Yes, it's a very scary thing to find out you have E, but in most cases it's something that can be helped or even fully controlled with meds, diet changes, or nutritional/alternative methods. It's important to talk with a doctor about it and figure out what if any cause can be found. Don't be alarmed if they can't find anything, because in many cases a cause isn't clear.

There's a ton of information and support to be had here at CWE. Stick around, do some reading, and post if you like. I know when I found out my wife had epilepsy I had a nervous break down. Now though, she's been seizure free for 4 months and we're both doing much better. I wish we would have made it to the doctor sooner because we struggled with this for over a year before getting to a neuro. The sooner you get some answers and educate yourself, the easier it is to deal with E.

 

[Katarn112]

Thank you for the welcoming everyone, and for all the info. I have another question, I bit my tongue during the seizure, how long does it usually take on average for the tongue to heal itself? It hurts. :S

 

[Meetz1064]

Mmmmmmmmm, that

depends. Mine takes quite a while, as I usually bite all the way through it on both sides. Try gargling with salt water, and alternate with water, with a capful of hydrogen peroxide mixed in. You can always have the doctor put you on antibiotics if you want to....put it WILL eventually heal, it just takes time.

Usually eating soft foods, that aren't spicy and not too cold....that can usually keep you from starving. But man, do the really salty/spicy/cold things drive you UP A WALLLL!!!!!!


PS. I LOVE the avatar!!!

 

[darcness]

Do you smoke cigarettes? Just figured I'd ask because I do and I've learned in my research that smoking causes things to heal slower in the mouth. It also irritates any sores. If you smoke, try to cut back and things should go a bit easier.

Unfortunately I smoke so I know this is true first hand.