Hi tos8,

Be very careful with the neurontin, if they are giving it to you for both pain and sz. the Dr. is not doing things right they are doing off market labeling with the drug. I was on neurontin for pain and sz. also and it caused me to have severe status sz. After the FDA did a check on the drug they found that the drug co. was making money by doing off market labeling and they were sued for $410 million. What has happened to you is that the drug has become toxic and it will take 2-4 days to clear out of your system. I couldn't even stand up and I had to hold onto objects in order to get around. I finally ended up in the ER and found I was loaded with poison from the drug. My advice to you is to get off the neurontin and then have a DNA blood test done to find what AED's will help you the most with the least side effects.
Wishing You the Best of Luck and May God Bless You!

Sue

Hi tos 8. I have had epilepsy since I was 3 and I am now 48. So i have kind of grown up having seizures and it has been the norm for me. I have both partial & clonic seizures. I can't imagine the pain of adjusting to this later in life. My sz are pretty well controlled. For now I am on tegretol and lamictal but I do still have both kinds maybe once a month. I know the pain and embarassment of having a seizure can be horrible. In high school I once wet my pants while changing classes. Thru all this what helps me get thru those times, is the fact now days people are more knowledgable about epilepsy. People will usually be supportive and make me feel comfortable if they feel comfortable around me. Once I told my new boss about me epilepsy, she just told me plain and clear, "just don't have them at work". Needless to say we had a very long talk about my condition and years later she became like a mom to me. There will always be times when you will have them in front of strangers. Be sure you are always wearing a medical alert symbol so they understand what is going on. Friends,Neighbors,co workers,and anyone you are going to be around that will be alone with you for long periods of time you need to let them know what may happen. When you are open about your condition and let them ask anything they want to know and answer their questions, I have found it not to be so embarassing for me and as well they aren't scrambling to figure out what to do with me. When you are on a first date for example and have a grand mal you may feel like that person may as well seen you naked because you didn't want that part of you exposed. I am sorry to say the embarassment will sometimes rear its head even to those of us that szs has been apart of all our lives. Just remember you are a very special person that has a few unique qwirks and don't let anyone make you feel like you should be embarassed. I will keep you in my prayers

Sue we did stop the med right away after that second dose. It didnt even cross my mind to tell them that i cant take over 2000mg of sz. medications a day and im already on my depikote and tegretol and thats already 1900mg a day between them and if i would go any higher the same thing would happen like the nuerontin caused. What did they end up doing to help with your pain so it didnt interfere with all this?



Thanks Scared2285- i do have a medic alert bracelet! I didnt start having sz. until last year when i was 19. So its been a whole new thing to deal with ontop of everything else!

Hi tos8,
I'm glad you stopped the neurontin you played it smart! What I took for pain in place of the neurontin was tylenol with codeine but only for a short time since it can be addictive. Then I started taking aleve 1 pill every 12 hrs. and that did a great job getting rid of the pain. If you should try either of these meds check with your pharmacists first to make sure they won't interact with the other AED's you take. I wish you the best of luck and May God Bless You!

Sue