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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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crsty78

crsty78

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Found this site while I was goggling my medications, lol...I thought it would be nice to talk to people who are going through things that I go through as well. Had never thought about there being a forum about epilepsy! Wish I would've known about this years ago, it would've been great to have been able to talk to people then as well!!!

I've had a Vagus Nerve Stimulator implanted and brain surgery and now on 3 seizures meds and still have seizures...just would like to talk to people who go through what I go through and understand what it feels like, that is all!
 
crsty78

You are welcome to C.W.E. and I hope we can help you but you will help us. Sit back and relax.
 
Hi crsty78,
Welcome to CWE, you have come to a great place.

I'm sorry you are still having seizures even with the VNS & Surgery.
There are other members who have had the VNS, surgery or both.
I have never had the VNS but I did ave surgery on my left temporal lobe in March 2011 which was a success as I haven't had a seizure since surgery & am currently in the process of coming of one of my meds.
 
Hi crsty78, welcome!

I'm sorry the VNS didn't work out for you. Based on CWE members who have tried it, it seems like a very mixed success. I hope you are able to find a treatment that gets you some relief. In the meantime, there's a lot of good cheer here at CWE to keep you company!

Best,
Nakamova
 
Hi crsty,

You have come to the best forum for epilepsy.

It was created by Bernard out of love for his wife Stacy. That love has permeated throughout the whole forum.

I have not had the VNS or surgery but others have had one or both. I am sure that you will hear from them.
 
Been on Vimpat (200 mg 2x day) for 9 months now and am adding zonegran back in currently at 200 mg at night...I used to be on 600 mg of zonegran for many years which worked great but I lost sooo much weight. My face has been turning bright red and warm on and off for quite some time now...is this from the Vimpat?...any help would be greatly appreciated.
 
Hi onedayatatime, Welcome to our Forum, lovingly called CWE.

Maybe I should try zonegran, I need to lose weight. I have never been on it or on Vimpat. I cannot help you there.

Crsty, what medications are you on?
I am on Clonazepam, Keppra, Clonazepam, Lamictal and Primidone.

What medications are you on crsty?
 
Hello and welcome! Cookies and milk at my place :)

This site will help you and everyone else who is here. You will never have to worry about finding someone to talk to.
 
I currently am taking Vimpat 150mg 3x day Lamictal XR 300mg 2x day and Topamax 100 mg 2x day..The lamictal has made my insomnia worse! All these drugs together plus my surgery I feel like I have no memory whatsoever which drives my husband crazy...and my kids!! I feel like this is so much medicine and its not good for me! I worry about it constantly! So not only do I take something for insomnia, but also for anxiety...its just insane...its a never ending day of pill popping it seems. This one is for that and this, but then that one causes this...ughhh!!!!!!!!
 
Welcome to CWE crsty
Perhaps if you read through the library, some info there might be helpful to you.
My daughter was helped when I learned about nutrition and neurofeedback.
 
It is one of the rooms. I am on my iPad right now and it is one of the topics such as The Kitchen, The Back Fence etc. check in the menu bar, you should find it as a subheading.
 
crsty78 said:
I currently am taking Vimpat 150mg 3x day Lamictal XR 300mg 2x day and Topamax 100 mg 2x day..The lamictal has made my insomnia worse! All these drugs together plus my surgery I feel like I have no memory whatsoever which drives my husband crazy...and my kids!! I feel like this is so much medicine and its not good for me! I worry about it constantly! So not only do I take something for insomnia, but also for anxiety...its just insane...its a never ending day of pill popping it seems. This one is for that and this, but then that one causes this...ughhh!!!!!!!!
Click to expand...

I have insomnia, too. I drink Sleepy Time Tea around bedtime. Even though I do not always feel tired, I just go to bed and I am asleep.

My memory is getting worse. I forget what I read. That is from my seizures and falling down and hitting the dishwasher door with my head.

Do you put your meds in a pill box? Also, have a list of when you take your meds and what meds you are on kept on the refrigerator door. I have lots of magnets.

It is a good idea to have a Medic Alert bracelet or necklace at all times. I do!!

You will find Robin's library by pressing on the blue underneath her message. It starts from the time Rebecca started having seizures. Rebecca is now a young lady who is ice skating. Robin started with nutrition and then went on to Neurofeedback.

You will learn a lot from the experiences that they both went through. The nutrition is ongoing for the rest of her life.
 
I will have to try the tea, thank you! Im always running into things, feel like such a klutz! I have a pill box and set my alarm on my phone as a reminder to take my meds which helps a great deal. I dont have a medical I.D. bracelet, but just tried to order one yesterday, so we'll see if I get it. I found the library, thank you everyone, this site is so awesome, so informational I really love it!!
 
Did you get the Medic Alert or another one? The doctors and hospitals can call up and get whatever information you give them from Medic Alert. Like your doctor's and people who need to know if you are in the hospital. You can give Medic Alert the medications you are on so the doctor's will give you the right medications when you are in a seizure.

When you change medications, doctors, move or insurance plans you call them. they will change your records.
 
OH well hmm I think its just one that says I have epilepsy, it might have my meds on it, but im not sure...the place I ordered it from they were suppose to call me yesterday but never did so Im not sure now?
 
cristy78
I would have to agree with you 200% it does give you leeway to be able to talk to people that have the same medical condition and know EXACTLY how you feel and what you have been going through any and every time that you have a sz. People do not understand and I don’t think they are even trying they simply attribute it to a mental condition and they do not want to be infected. As if it were something that you could catch that way they compare our medical condition to AIDS. How stupid of them they just show how narrow minded and ignorant they are.
Take care
Jose
 
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Yes! I've actually been called "mental" before, have been "let go" from a job having seizures, so to have somewhere to go and relate to other people is definitely an awesome feeling. I dont know anybody in my area that has epilepsy, so I dont get to talk to anyone! Thank you Jose! :)
 
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