Hello Julie,

My appointment is on Mon. with Dr. Costello?? I have all tests to date to bring with me. Will let you know how it goes.
Have a good night

Hello Ellie,

I have been on Dilantin for about 3 weeks. I had my dose lowered last week, because my blood test indicated that it was toxic in my system. Have asked my Dr. if the rash could be from med, she said no it was shingles. I will still bring this up on Mon. with new Dr.

Thanks

Had my app. yeterday with Dr. Costello. He talked with me and husband 2 hrs. No knew answers. Looked at all my tests up to date, all look ok. Asked if EEG was done during an episode, no. Wants another MRI in 6 weeks to see if change. Wants me to get to E.R. when have another episode ASAP to try an capture on EEG. If not will take me off dilantin, hook up to long term EEG and hope for seizure. Wants a definate diagnosis. Are these epilepsy, or something else? Said it is catch 22. Is dilantin stopping seizures, or is it not even seizures?
Said I had definate right sided weekness, obvious right handed tremor. My husband informed Dr. that he has noticed an obvious loss of memory over last yr. This is very frustrating. I was hoping for an answer to all going on, but I guess not that easy. Oh well

Today i was put on both Dilantin and Keppra. Have had break-through seizures on both, so dr. decided to combine. Will not go to work tomorrow, because don't know how it will effect me. Having Dilantin level checked in am. Have a kind of feeling before seizures coming. Right sided weakness after, along with tiredness. Next day will have hard time with word retrieval and mixing up words when speaking. Also have trouble when typing, mix up order of letters. The word is correct, but letters not in order. Getting very frustrated. Why would seizures start in mid forties??? Oh well, hope to hear from people. Have a good night

Garney

Hi Garney,
One reason why you might be having sz. in your forties is because you are beginning to go through your change which can in turn effect the hormones and lead to sz. Some women have fewer sz. after their change but others increase in sz. I've noticed that I've had an increase in my sz. since going through my change.
With everything that you have mentioned about your sz. they sound like mine when I have an aura sz. that leads into a complex partial sz. where I see many different colors, stop talking, and then blank out. When I get the warning I'm going to have an aura sz. I tighten up the muscles in my body and make my hands into tight fists for a few seconds by doing this it stops the sz. Here's wishing you well and May God Bless You!

Sue

Garney - My seizures started in 1990 when I was 46
A CT showed something appearing to be a mass in my left temporal lobe but the follow-up MRI was misread as "perfectly clear" so I was diagnosed with idiopathic epilepsy.

An MRI in July 2005 showed a brain tumor and we managed to retreive the old MRI and the tumor was perfectly clear on the old one too.

VEEG, PET, many more MRIs and that sort of thing showed that my seizures were caused by the tumor and it (with a bit of my hippocampus) was removed Feb. 14, 2006.

I did not have another seizure - not a single one - until last Friday.

The reason I wrote this long thing is because I think it's SO VERY important that you have those "white spots" on your MRI expained and then explained by a second opinion .... then a third opinion. But no one have ever accused me of being smart ~sigh~

Thanks for the update and I really hope this 'mix' works for you. Although it is tough at the start, once you get more familiar with your seizures you can work on focus type of techniques. I've heard of it working for some, not for others - but as Porkette mentioned, it works for me about 7/10 times (I know it's not a perfect score, but even once is good).

I don't know why I do it, but I have a tendency to eat a lot when I feel an aura coming. My auras mimic low blood sugar sensations, so I eat.

I can certainly understand your frustration and suggest that you try your best to stay calm and relax. It's much better for you if you avoid any type of stress and even more so when you feel a seizure coming.

I really do hope things start to look up for you as soon as possible. Thanks for keeping us updated and I hope you continue to do so. Sometimes I have quiet bits, but I keep my eye on everyone and like to know they are OK.

*Hugs*

Porkette,
Thanks for responce. I have been told again my seizure sound like complex partial. Dr. still talking about doing VEEG at Ma General, but says it is very invasive and would like to hold off to see if new med combo works. Trying to keep positive. Go to work every day. Can't keep eyes open after 5:00 pm.
Could be worse.

Have a good weekend,

Garney(Cathy)

Jingle,
Thank you for the information. I have really wondered about those spots. Have been told they are just from age! I really have not felt comfortable with that explanation. I am so sorry to hear that you had a seizure after so long. I hope that you can control and not have another. Let me know how it goes.

Garney

Ellie,
When i feel funny and know something is going to happen, I have tried telling myself over and over, "this is not going to happen, keep calm." I think it may have worked a few times? I also tend to suddenly be starving. I am putting on weight (my family is thrilled with this), but I don't like it. Trying to stay very positive, things could be so much worse. I think about other people that are really sick with things they can't control. Feeling sorry for ones self is not an option. Happy to hear from you, and take care.

Garney(Cathy)