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Judeola2013

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Hey everyone! I have been reading posts on this forum for about a week and thought I would join instead of just stalking you all :-). I have had epilepsy for about 12 years and it has been a journey to say the least! I have about 4-6 grand mal seizures a year, and numerous petit mal and simple complex seizures a day. I have been a multiple medicines including Depakote, Topomax, Keppra, Dilantin and now Trileptal with a sidecar of Vimpat just started this week.

I was diagnosed with Left Temporal Lobe Epilepsy recently, by the only doctor who has put in the work to find out whats truly happening in my noggin. I have had countless EEGS, including one ambulatory and one video EEG. I am up for a PET scan in a few weeks to confirm if surgery is a viable option. I want to thank everyone who posts here, it is nice to have a place to go to share what is going on with me. I have an amazing woman who is super supportive and understanding and is on her way to becoming my wife soon. I have an amazingly supportive family, but I hate having to put them through all of this.

Sorry for the novel...I just feel that you should know me before I start picking your brains about what to do and how to do it. I have been afraid to admit this is truly a problem...it makes me feel weak, but I am finally coming to grips with everything and realize this is not going away. Thanks again and I look forward to talking with as many of you as I can!
 
Hi, Judeola and welcome to CWE! Glad you decided to join. There are lots of great people here to get opinions from and bounce ideas off of. Good luck with everything and see you around the forums.
 
Hi, Judeola,

Welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.
 
Hello,Judeola and welcome to CWE.I hope to get to know you.
Wow you take a lot of AEDs.I take Topamax and have tried rest of the drugs you take.
 
I currently dont take all of those medicines I have taken them over the years. Right now its Trileptal and Vimpat. I have started the Vimpat recently and have had a few issues with exhaustion and mood swings. But other than that the seizures seemed to have decreased!
 
Welcome, I have found great support here. I'm in the same boat left temporal lobe about 18 months ago I had 5 seizures unconscious for 5 days then came to without 12-13 years of my life gone amnesia. It's nice to find people who understand because unless you live it you can not truly comprehend the trauma. My wife has taken years to come to grips with what I'm going through but then I do something to upset the balance and I find out how little she truly understands. So I've haven't been able to work I have terrible memory and have become introverted and isolated due to the fact that family and friends don't understand why I can't work or do more because I appear "OK". I even get comments like "I know people worse off than you who can work"

The support and understanding here is great.
 
Mike, you have been unconscious for 5 days. I hope you tell your neurologist. You might be having status seizures. That is where you have one seizure after another. Please tell your neurologist.

It might be a good idea if you can talk your wife into coming into the forum. It is a great education here. You need to get out of your shell and start doing things. Wait and be patient for your family and friends to come around. Your wife needs the support, too. She is going through a rough time.

Judeola, I just had to laugh when you said that you were stalking us.

Remember laughter is the best medicine.
 
Hello Everyone

MikeJ I am so sorry you had to go through that. I have not had anything happen of that caliber...but I am afraid that may be my future.

After speaking to my doctor a few weeks ago...she wants me to have ANOTHER Video EEG after my PET scan to get more data to figure out to best course of action. She said there is no rush...but I had to wait 6 months to schedule my first 5 day stay...now this one could start as early as next week!

My summer is for me and my family...so I do not want to have a whole week incapacitated in the hospital....I will probably push it back.

MikeJ I am praying for you...if you are into that sort of thing of course :-) I have a feeling this will be a great place to find the support I need. Thank you all!
 
Enjoy your summer.

Think seriously before you jump into surgery. Is it really necessary? Does the doctor want to make more money? What are the side effects if something goes wrong?

My neurologist wanted to do surgery on my brain and I said "NO." Others on the forum have had surgery and it has worked out for them for the better.

Either way you decide, enjoy your summer vacation with your family.
 
Hello Everyone

I have definitely been thinking about the surgery.....obsessively since our meeting. I dont think its just about "da benjamins" for my doctors. They are the only people in the past decade to give two...you know whats...about me. I have alot of trust in them.

I am just sick of all the medicines and the side effects and the almost futility of it all. Every one I try has a new side effect that has an almost worse efffect on my life than the seizures do. And the long term damage is definitely not worth it.

I have looked into the VNS treatment, which is appealing in its own right. I have also read a lot about other "herbal" treatments. Does anyone have an opinion on these two?
 
I take two different herbal teas to calm me down. It is Chamomile tea and for bedtime, Sleepy Time tea.

The VNS has the rule of 1/3rds. The first third works for you. The second third works somewhat and sometimes. The third third does not work at all. There are those on the forum that have fit into each of these thirds. The last third is the bummer.

I decided not to get the VNS because of the odds. Look at Belinda5000's signature. Her VNS does not work and cannot be removed.

With herbal treatments, be careful. Some work but some have been used to make prescription medications for different illnesses. So look up on the internet to see what an herb is used for and it's side effects.

Take care
 
Hi Judeola2013 it's nice to meet you. I also had to laugh when you said you were stalking us. Where were you hiding that we didn't see you? Don't worry about writing a novel, I've done it a lot!

My situation is similar to yours and Mike's.

I had my first seizure about 11 years ago. I had to be put into a coma, I don't remember for how long, because they couldn't get the seizures to stop. When they were able to bring me out of the coma I lost around 10 years of memory. Bits and pieces are still there but not much.

If you can name the medicine I was probably on it at one time or another. Some helped but not enough, some didn't and caused more seizures or I couldn't handle the side effects.

I was having a ton of seizures a month and sometimes a lot in one day. They were mostly partials with a few tonic colonics thrown in there. The seizures usually lasted a long time. My neuro said that if I don't start to come out of it within 5 to 10 minutes then call 911 or go to the ER which happened often, I think I was admitted a good bit too.

I'm unable to have surgery so my neuro suggested getting a VNS and I did. I am still taking medicine with it however which my neuro said that I may have to do. Since I got it I'm having on average 7 seizures a month with maybe one tonic colonic a year. They don't last as long either.

I knew that there was a good chance that it wasn't going to stop me from having seizures but in my case it was worth getting. It has worked greatly for some people and not for others. It can also cause side effects. Once it's put in it can't be removed so there are some tests that you are able to have, like an MRI.

A gentleman named arnie recently got a VNS and he started a thread about it. It's something that you might consider reading.

Click on this link http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/
 
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