Hello,

vodpop & Porkette ...

I have been on Neurontin for the past 2 years due to trigeminal
nerve pain ... which occurred after an incompetent ENT used a
CO2 laser to burn the inferior turbinates in my nose.

My memory and mind are slowly being "eatin' away" using this
Neurontin. I wonder if it could be the cause of my 2 recent seizures.

The problem is that without it, I get little electric shock-like snaps
when I try to sleep and I wake right up -- no sleep at all.

My neuro wants to put me on Keppra. Which drugs have the worst
side effects???

I have a -concussion- from my head injury last Wednesday and I'm
going into the ER tomorrow for a CT-scan and MRI ... I hope.
One pupil is slightly larger than the other and I'm dizzy (vertigo) when
I lay down.

-Roy

Hi Roy ~ I'm glad you're having a MRI. I wish ALL of us having seizures would have one. Mine saved my life.
And about Keppra .... all the AEDs effect each of us so very differently. Keppra did not bother me at all..... but I never took it alone either. I always took two (at least two) AEDs together. Right now I'm on Trileptal and Topamax and doing OK.

Here's wishing you well with the CT and MRI. Please let us know the results as soon as you get them. I've said a prayer for you and here's a hug

Hi Roy and welcome. It's great to have you here, but not so great you have to be here.

I will just agree with the things already posted and add a tidbit. Keppra, or as a lot of people have renamed it, "Kepprage" is pretty famous for causing mood swings. Keep in mind, a lot of side effects should go away as you adjust to the medication(s). From my understanding, Keppra is more gentle on your body (as some aren't very good for your liver, kidneys, and what have you).

I'd make sure that you mention that before or during both seizures, you were playing chess. Perhaps you can get a laptop and try it again during an EEG just to rule it out as a culprit.

Hope you find some answers soon, and make sure you keep us updated.

Hi Roy,
My Dr. wanted me to try keppra but I told him no way because a lot of my friends have tried the drug only for them to have a very hot temper and be very moody. To find the right AED for you your Dr. needs to do a DNA blood test on you and they can match your DNA up with a AED that will help control your sz. the best. This is something that my Dr. has been doing for at least 2 yrs. if not longer. Another thing that has helped a lot of people is taking vitamin B12 1000 mcg. a day you can buy right over the counter without a perscription.
You should stay away from nutra sweet ex. diet soda cut back on starch foods, carbs. and eat foods high in fat this is known as the ketogenic diet that helps reduce if not stop sz. for many people. It's been proven that nutra sweet (aspartame) can cause more electrical activity in a persons brain which can lead to sz. for many people. Also make it a point to keep a calendar and write down what time you had the sz. along with a discription of the sz. by doing this your neuro may be able to see a pattern in your sz. as to what time of the day or what days of the month you are more likely to have a sz. Also be sure to take note of the weather because some people are bothered by a low pressure causing them to have a sz. Here's wishing you well and May God Bless You!

Sue

Roy,

What many others have said I agree with them. What one med that causes problem for someone may help with others. I have been on Keppra for 4 years and have had good luck. I also taking Lamital, with the both by spell have reduced in number and are not as long.

As for the fact of walking during a spell I seem to not move until I start coming out of it.

Hope you get some answers and keep us informed.

Darlene

(((((((((((Roy))))))))))))).

PLEASE stay off the road!! If you have another sz or head injury, call someone for help!! Driving in post-ictal state (immediately after sz) is like being smashed on alcohol or drugs. Call an ambulance if you can't get a neighbor to help.

LIZARD

Welcome Roy I agree with everyone including Lizard; what if you all of the sudden have a seizure while in the middle of traffic. Also theres the drunk like way of driving after you have the sz. I saw a billboard saying something like 'Even though you think you can drive, driving buzzed is driving drunk.' And that made me upset, because I'd like to drive, but driving in that postictal state tells me I could hurt someone, so I better not drive.

Apparently, Neurontin was the cause of my 2 seizures.

3 CT-scans, negative.
2 MRIs, negative (with and without contrast) Ganglion totally normal.

I don't have Epilepsy. I appear to have *nocturnal trigeminal neuralgia*
affecting the secondary trigeminal branch where an incompetent ENT burned
me with a defective CO2 laser.

Two months without Neurontin -- no seizures.

Very strange though ... *nocturnal* TN. What the hell is that??

But who knows? ... sinus/brain/dental surgery can cause anything.

Current meds I'm trying for sleep and pain relief are:

Keppra 500 mg.
Valium 20 mg.
Soma 700 mg.
Klonopin 4 mg.
Some Red Wine.
Clonidine .4 mg.

NO SLEEP MEDICATIONS!!! (ie Ambien, Lunesta)

I'm trying to get sleepy with the Keppra, but its a little weak.
However, it has killed the nerve pain.

I'll try to titrate down. (anything but Neurontin and sleeping pills!)

Thanks.

-Roy

NO EFFECT FROM 1000 mg. of Keppra and Valium and Soma and Wine.

It killed the pain, but NOT the sudden nocturnal electric shocks.

Had to go back to Neurontin and Lyrica and Vodka.

I'm calling my Neuro today and I'm going to try Tegretol.

I know it's a VERY dangerous med, but I don't like the
cocktail that I have to take to sleep.

I'm moving my post over to the TGN forum because I don't
have epilepsy.

Thanks, and may God Bless you all.

-Roy

Roy,

Whether you have epi or not, you must understand that mixing alcohol with AEDs is extremely dangerous. It can provoke seizures...and even worse. Please stop drinking. You could kill yourself.


LIZARD, worried for you!