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Mungie

Mungie

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Hi All! I am new to this site, and I am really looking forward to meeting some new people dealing with this! I am 36y, married, and have been diagnosed with Temporal Lobe Epilepsy for 18 years...seems like forever! I can no longer drive...was in a major wreck 3 weeks before my wedding! Had a beautiful blue cast on my ankle!

I am taking three meds right now, having just come off of another. I also have a VNS, and have about 8-12 complex-partials a month. This is the best control I've ever had! Nice to meet all of you!:e:
 
Hi Mungie,
Welcome to CWE, I hope your wedding was still great even though you had to wear the cast.

I am 35, I had epilepsy as a baby from 9 months - 3 years, I was seizure free for 21 years until I started taking seizures again at the age of 24. After I started taking seizures again we tried a variety of meds (5 meds all up) but none of the meds controlled my partial seizures so in the end my neurologist suggested thinking about brain surgery on my left temporal lobe. I had the surgery in March 2011 (next Sunday is my 2nd anniversary) & it has really helped control my seizures as I have been seizure free since surgery.
I am currently on 2 meds Keppra & Tegretol but since March last year I have been working with my neurologist to very slowly wean me of the Tegretol.

Feel free to look around in all the threads, you'll find some great information on here & everyone is really nice.
 
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Hi,

Glad you found this forum. I hope it will prove to be a big help for you as it has for me.

I have simple to complex partial seizures. I too have TLE. Was diag. when I was 18, I now 61.

I have seen about 7 to 8 Neur. and been about all the meds. But can't seem to tolerate anything but Dilantin and Clonazepam.
 
Hi Mungie,
I thought i would stop by and say hi.CWE is a great place to be,thats for sure.

All the best,Neil
 
So does the VNS even really work? I have heard and asked but the doctors didn't tell me much about it. I have a 5 month old son, so I know how it feels to be limited, especially since I can barely hold him in my arms. But I hope you the best.
 
Thanks for the Welcome!

Hi Jefferey M! Yes, the VNS works to a degree. I don't know if they've approved it/if it works for gran mal seizures, but it has made my simple/complex-partial seizures a LOT shorter. I am also taking a lot of meds, and my epilepsy is inoperable. In general, my brain is a total pain in the butt! But ask your doctor about it...if it can make your epilepsy more manageable, think about it...!

BTW, I am SO JEALOUS! My husband and I have been trying to get pregnant for a while now...had a miscarriage about 18 months ago. Are you afraid of dropping her? Have you used a baby sling or something like that? Just an idea..:brain:
 
Hi and welcome! CWE is a great resource with tons of friendly folks.

I had my first medically documented grand mal at 35. Iows, witnessed and an expensive ambulance ride to the ER! :P I know I had one when I was 21 but no one thought anything of it.

I'm currently on Keppra, average a mix of about 30 partials and tc's a month, but that's better than it was. :)

Again, welcome and get comfortable.
 
Hi Mungie! Just wanted to add my welcome to the others. :)

Best,
Nakamova
 
Hi Mungie,

I had my first seizure when I was 6 years old, 1949. They kept increasing in severity as the years have gone by. I have a husband who has stayed with me and taken care of me when necessary. Support is important!! I hope you have support from a friend, husband/wife.

So much for me, I am glad that you are here.

My doctors wanted to give me a VNS. I wanted to know more about it. They had a meeting with the patients and the experts in the VNS. One thing that they said, stuck in my brain.

They told us that it is the rule of thirds. One third it works for completely. The second third it works for partially. It does help to a degree. The third rule is that it does not work at all. They cannot take it out once it is in.

I am glad that the VNS works for you. Finding things that work for us is very important.
 
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Hey there! I'm new here too! OMG, weddings must cause these things. I had my 2nd one, after only having 1 prior, over 10 years ago, just 5 days before my wedding!!! Crazy!
 
Hi bridge,

Why don't you go to the Foyer Room and start a new topic? This way we can find out all about you.
 
Hi Bridge,

Sorry that I missed it. I will have to go look it up.
 
Jeffrey M said:
So does the VNS even really work? I have heard and asked but the doctors didn't tell me much about it. I have a 5 month old son, so I know how it feels to be limited, especially since I can barely hold him in my arms. But I hope you the best.
Click to expand...

I have the VNS. I only had the VNS as a last resort after having a failed left temporal lobectomy and trying numerous AED's. I've had CP's and TC's. The VNS does stop the TC's, but I still do have CP's. Before surgery I was having 4-5 CP's a day and once in a while a TC. After brain surgery, the TC's were much more intense. Plus I was married to a pilot at the time and had two children, one was a toddler and the other was in kindergarten. And I lived 1500 miles from any family. So it was pretty scary stuff! Especially for my kids!! That is why I finally had the VNS surgery. It works for some and not for others, just like brain surgery.
 
Ruth said:
They told us that it is the rule of thirds. One third it works for completely. The second third it works for partially. It does help to a degree. The third rule is that it does not work at all. They cannot take it out once it is in.
Click to expand...

They can take it out if need be. They cannot undo brain surgery!
 
Hi Cint,

Did you have brain surgery?

I decided against that too. Too risky.
 
Cint, I am sorry that I misread your post.

I have a bad memory, you must have told me that in posts in other threads.
 
Mungie said:
Hi Jefferey M! Yes, the VNS works to a degree. I don't know if they've approved it/if it works for gran mal seizures, but it has made my simple/complex-partial seizures a LOT shorter. I am also taking a lot of meds, and my epilepsy is inoperable. In general, my brain is a total pain in the butt! But ask your doctor about it...if it can make your epilepsy more manageable, think about it...!

QUOTE]

I also have a VNS because I am unable to have brain surgery.

Your story sounds just about like mine Mungie. I'm still taking a good bit of meds and having seizures but it has reduced the number of seizures and how bad they are dramaticaly.

Jeffrey M - It might be something to talk over with your dr to see if it's something that might work for you.
Click to expand...
 
Hello!

It''s great to meet you, Welcome to the CWE community. I'm pretty new here myself, but the welcome and the people have been incredible!
Wishing you all the best,
Mary
 
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