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[jenny_ewing]

hi i'm Jenny. I'm 20 almost 21 and i have had epilepsy since i was 15. i've had 1 EEG scan and 4 MRI scans which didnt help either of my neurologists i see. i had 3 MRI scans and the EEG scan at stepping hill and then got transferred to Salford royal because my neurologist didn't know whether i had epilepsy or a movement disorder even though when i got diagnosed with epilepsy just before i was 18, in the same year i had an epileptic fit which scared me. the MRI scan i had at salford royal they focused on the left part of my brain because i my epilepsy only effects the right side of my body and sometimes my neck. They think i have scarring on my brain but are not sure so i'm still scared of my epilepsy because i don't know which type of epilepsy i have.

 

[jyearta]

Hi and welcome,

It's not unusual for most people who have Epilepsy EEG and MRI to back normal.

Most people Never know where or why they have E.

I have Right side Temp. lobe E.

I take Dilantin and Clonazepam.

 

[travel bug]

Hi Jenny, :hello:

Welcome to CWE!

You said that your seizures only affect your right side, and that doctors thought you might have a movement disorder instead of epilepsy - there are many different types of seizures, but it sounds like you might have the same kind (or similar) I have. I haven't had an actual seizure since my brain settled down after brain surgery, but when I had them, they were simple partial motor seizures. I'm actually just going by what I've read here. My seizures were caused by a brain tumor so, once doctors saw that, they didn't worry much about figuring out what type my seizures were. BTW, don't worry! I'm not in any way suggesting you might have a tumor. MRI's would have shown that by now. But what you said about scarring could be true, especially if it's on or near the motor cortex (aka motor strip)

But here is what my motor seizures were like: They happened when I was doing something physical with my right arm. My first was when I was opening a sticky door, the second when I was practicing tae-kwon-do (punch, punch, kick; punch, punch, aaaahhh, down I go) the third time sweeping leaves...and so on. Anyway, the first time I felt my arm twist up behind me as my neck was forced to the right, the seizure then generalized and I had my first and only tonic clonic. The others never turned into TC's, I just ended up twisted like a pretzel on the ground with my arm up behind me, my head twisted to one side and my leg drawn up under me. I was concious, but unable to move for a couple of minutes.

Since surgery to remove the tumor, I've only had mild myoclonic jerks in my lower right leg, and some vague but awful feel-like-i'm-going-to-have-a-seizure feeling that never results in anything. I think they may be auras.

Sorry for the long post :embarrassed: But maybe you found something helpful in it?

 

[aliciagrange]

Hi, I'm new here too. Actually, its my spouse who has epilepsy, but its under good control right now. I hope I'll hear more from both of you!

 

[DadofTwins]

Welcome Jenny!

I am the parent of a 16 year old who has had six seizures since May. Please know that you have found a haven with many knowledgeable and compassionate members. You are among friends. Don't hesitate to ask questions. Someone here has probably been there.

Good luck as you continue on this journey.

Tom

 

[RobinN]

My daughter began having seizures at 14. Hormones can push many over their seizure threshold. I didn't realize when we began along this road that everyone has a seizure threshold. Epilepsy is only a label for two or more seizures.

Long story short, my daughter tried 4 meds, and finally we discontinued them, as they made the situation much worse. She is controlled by making nutritional changes. Hers appear to have been related to reactive hypoglycemia, which is managed by keeping her blood sugar balanced. She also takes vitamins and minerals which support brain and body health.

She has not had a seizure in almost two years.

 

[valeriedl]

After reading your post I just realized that I don't know what type of epilepsy I have either. I'm sure that the neurologist has told me but my memory is horrible so I don't remember. The neurologist has no idea what caused the epilepsy. They've made a few guesses but arent positive about them.

I have damage (which is how the drs described it to me) on both sides of my brain and I'm unable to have surgery because of this. My seizures effect my whole body. I think if you can name the type of seizure I've probably had it.

Most of my seizures are partial seizures. During these I'll black out and not know what I'm doing. I'll just stare, do nothing and stay in one place during some. I might try to talk but what comes out of my mouth is just babble and it doesn't make sense, I can be conscious or unconscious during these. If I'm conscious I know what I'm saying but that's not what's coming out of my mouth.

Other times I might be unconscious and do things and not know that I'm doing them. I may keep doing the same thing over and over again. I've walked around the house with my husband chasing after me trying to get me to sit down and stay in one place until I came out of it. Once I even loaded the dish washer, you should have seen what it looked like.

Sometimes I just won't feel right, I really don't know how to describe this. I might feel light headed, my stomach won't feel good and my lips will tingle.

I have had grand mal seizures where my whole body will shake until I come out of the seizure.

You'll find alot of good information on here and it's nice to meet you!