New Here...Hello!

[paul_v]

Hi there!

Not sure why I haven't discovered coping with epilepsy sooner but hello. I am Paul. I was diagnosed with epilepsy in 2012 after contracting a viral encephalitis / meningitis. I went into a status epilepticus in my sleep while I had a 106 fever..only 1 in 5 make it alive or functional so I guess I'll take epilepsy over being a vegetable or dead.

I had a vagus nerve stimulator implanted a year and a half ago and frankly it's been disappointing. Well, I guess it has helped stop the minor ones but the big ones do get through. I guess I would go all out gran mal if I didn't have it but the complex partials only last maybe 10 seconds. Not sure if it's worth $150k since I'm still taking a ton of meds. Really the only thing that truly helps is CBD...but unfortunatly that will get me fired. Another thing I recently discovered is frankincense. If I feel an aura I smell it and taste a drop and bamo...seizure stops. Pretty cool actually.

So anyway, that's my story

 

[Frink]

Hi Paul,
Welcome to CWE.

 

[Porkette]

Hi Paul,
Welcome to CWE. Everyone here has been a great help to me. I've had epilepsy for 44 yrs. and had 2 brain surgeries to reduce my seizures. I started using the CBD oil this past May and it has really helped me a lot. Just like you I have complex partial, aura, and absence seizures. One thing I learned yrs. ago is if I get a sign I'm going to have a complex partial seizure I tighten up all the muscles in my body and make my hands into tight fists, if I do it quick enough it stops my seizure. My neuro taught me this yrs. ago.
I know everyone is different when it comes to seizure meds but when I was on Neurontin it caused me to have absence status seizures. I wish you the best of luck and May God Bless You!

Sue

 

[masterjen]

Hi, paul_v and welcome to CWE;
Several people here have the VNS. Some have found it successful or semi-successful, and some not at all.
CBD is illegal where I live, but permitted with a doctor's prescription and therefore an employee cannot be fired. I assume you have checked into this, but if not it might be something to approach your neurologist about.

 

[acshuman]

! ! ! ! Welcome to cwe ! ! ! !

Hi Paul,
Feel free to ask any questions you may have about E! If you add all of the years of experience the members of CWE have living w/E or living with someone who has E that number would be a huge one! The members should be able to help any time you need answers!

acshuman

 

[valeriedl]

Not sure why I haven't discovered coping with epilepsy sooner but hello. I am Paul. I was diagnosed with epilepsy in 2012 after contracting a viral encephalitis / meningitis. I went into a status epilepticus in my sleep while I had a 106 fever..only 1 in 5 make it alive or functional so I guess I'll take epilepsy over being a vegetable or dead.

I had a vagus nerve stimulator implanted a year and a half ago and frankly it's been disappointing. Well, I guess it has helped stop the minor ones but the big ones do get through. I guess I would go all out gran mal if I didn't have it but the complex partials only last maybe 10 seconds.

This is very similar when I had my first seizure.

I have a VNS which has helped with my seizures in general. I also talk a good bit of meds but since getting the VNS it has lowered the number of seizures I have and they aren't nearly as bad as they were before I got it. Many people have had great help with their seizures since they've gotten it and other's don't get any help at all. Even with everything that's still going on with my meds and seizures I'm still glad I got mine.

Nice to meet you and I hope you find some help with your questions here.

 

[paul_v]

Thank you all for the warm welcome!

Sounds like lots of friendly people

I'll try the muscle tightening, Porkette

 

[Topcat]

Hi Paul - I haven't been round here myself for awhile but I'm glad I got back in time to welcome you.
Wow, the price of those VNS units sure has jumped. I'm on my second one now. The enclosed battery of my first one finally ran out of power.
I was told that one had cost $30,000. I don't know how much the second one cost. The insurance paid for it of course.
Even though I still have Grand mal & petit it has helped a lot.
Give it a chance and make sure that your neurologist sets it correctly.
After I got another neurologist he said that my previous neurologist had not set mine (the second one) high enough. It was basically set at the factory out of the box, (so to speak) level.
Because of the side effects he can't set it higher all at once. He has slowly set it up a little at a time.
I sure hope that you have a good neurologist who works with you. Really that VNS is the best thing and sure has helped me.

 

[Nakamova]

Hi paul, welcome! Make yourself at home.

 

[paul_v]

Hi Paul - I haven't been round here myself for awhile but I'm glad I got back in time to welcome you.
Wow, the price of those VNS units sure has jumped. I'm on my second one now. The enclosed battery of my first one finally ran out of power.
I was told that one had cost $30,000. I don't know how much the second one cost. The insurance paid for it of course.
Even though I still have Grand mal & petit it has helped a lot.
Give it a chance and make sure that your neurologist sets it correctly.
After I got another neurologist he said that my previous neurologist had not set mine (the second one) high enough. It was basically set at the factory out of the box, (so to speak) level.
Because of the side effects he can't set it higher all at once. He has slowly set it up a little at a time.
I sure hope that you have a good neurologist who works with you. Really that VNS is the best thing and sure has helped me.

Thanks Yes I've had my VNS adjusted a couple of times already. The periodic stimulation is pretty high and painful already