seizures

[Lourie]

Hello to all. Today is a rough day I haven't done anything but sleep and watch a little tv and more sleep. I feel horrible and very dissoriented. I went to the nuero yesterday and my eeg was fine but I told him about the seizures in detail and he said he suspects epilepsy. I don't understand how I could have something like that without the tests showing what is going on. The mri was good too. Last night I had a seizure bit my tongue and couldn't get oriented enough to talk to anyone for quite a while afterward while all my family stared at me like I was some alien being. Could be me over reacting but there is no doubt I am scared and just want to know what's happening to me. The eye twitching thing has calmed down with the prednisone at 60mg. Thank goodness but the seizures always begin with my eyes going nuttso. Does anyone know anything about this seizure thing and the nuero said it's common to get these with lupus and he isn't surprised. I thought it was rare. I am just so confused. Please someone help me understand what's going on.

Thanks to all my friends in cyberworld (smiles)
Lourie

[hurley]

Hi Lourie

Gee, I'm sorry to hear you are still having problems with the seizures. I would keep pressing the docs to find out what's causing them. You might have to find a new doc. I just don't know. I do want you to know that I'm thinking about you and I hope they will find out what's going on soon.

I have a question for you. I know you said you had blood clots on your lungs before you were dx'd w/lupus. It seems to me that at some point you stated that you had been taking coumadin and then at some other point the docs said your blood was too thin.

I bring this up because I think you said they never figured out why you had the blood clots. I was wondering if you ever had you anticardiolipins tested because if they are elevated they can cause clotting problems (APS, antiphospholipid syndrome). Coumadin, I believe, thins the blood and when you take it your doc should monitor your INR (???? not sure on this) to make sure your blood isn't too thick or too thn. If your blood is too thin I think your meds might need to be adjusted. Just a thought.

I am also wondering if your thyroid has been test. Your thyroid can cause all kinds of crazy problems.

Well, sweetie, take care, keep researching and let us know how you're doing.

Big Hugs.

:love:

Julie

[Lourie]

Thanks so much for the concern and for the thoughts. They are greatly appreciated. I am not on the blood thinners anymore. I have seen so many doctors it's seems unreal and now I have to go see an epileptologist. Still no seizure medication has been given and now the seizures are waking me up at night. I guess when they are ending. It feels like a bolt of electricity going through me. I just don't know what to do and why the docs are taking there time. It is so scary and I have never heard of someone having seizures and getting worse with each one. The docs wanna know what is causing it but I don't care I just want them to stop. Can't they just give me the meds and then worry about the rest? I try and stay calm but it's so hard out of it before and after the episode that I almost feel brain dead. Is that even normal. I can't believe I have all this going on but yet I am so uninformed. Thanks for listening.
Lourie

[hurley]

Hi Lourie

:hugbetter: Just sending a cyber hug for you.

No, what is going on with you is not normal. I don't understand why your family didn't take you directly to the ER during this last seizure.

It sounds like your docs are trying to find out whats going on. I think they probably need to determine what is causing your problems because different meds are used for different disorders. When do you see the epilepsy doc?

Are you requesting copies of your medical records?? I would recommend it.

I'm sorry you have to go through all this right now. Please go to the ER if you have another episode and keep us informed on how you're doing.

More hugs.

:love:

Julie