Well i have been free from the grand mal sz. for about 2-3months, my last big one i had while i was sleeping, oh gosh that was awful! I take 1000mg of tegretol a day and 1000mg of depakote a day and im fine with the depakote but the tegretol makes me super sleepy and sick to my stomich. I see my dr in 2 weeks and im going to ask him to switch atleast that med because i just dont think thats the one for me. The depakote i have to take or i tremor really bad. I tried switching neuros and i wasnt able to, long story and just very wrong and stupid. We cant even get him to do another EEG just to see what all is going on because he said it doesnt matter and its not gonna change anything. I have complex partials and myoclonics. What are some meds i can
suggest that wont make me so tired? Because to be honest i have been skipping that med once in awhile because i just cant stand the way it makes me feel.

Happy to hear about you not having one in this amount of time. You are in my thoughts and prayers. Keep us informed.

Darlene

Hi tos8,

I've found the higher the dosage the more tired I got no matter what AED I was taking. I have complex partial, absence, and I did have grand mal and myoclonic sz. but they stopped when I started taking vimpat I take that along with mysoline and Diamox. The only one of those drugs that make me tired is mysoline but I've taken for over 30 yrs. and now my body is used to it. In regards to your stomach I got kidney stones and kidney infection while on tegretol, I was also told to stay away from grapefruit and grapefruit juice while taking this drug because the enzymes in the fruit will mess up the drug. You may want to see an gastro Dr. I had some stomach problems from the mysoline and I found out I had to be on a low fat diet and drink only tea for awhile because the mysoline began to eat up the lining of my intestines after being on it for over 30 yrs. I wish you the best of luck and May God Bless You!

Sue

Hello Tos8, Darlene, (Porkette, Rhiannon has told me how supportive you are to others with the falling sickness and how you help them with much information. I Morgana wish to thank you for helping her when she needed explanations.)

Tos8 I have watched as Rhiannon fits and it tears at my heart that I cannot help her. As you have, I have tried to encourage a change of physician which until now has been resisted. Now that we have changed locations she must see another but until now she has resisted seeing anyone, being content that her medicants have been working (though they have not worked completely). She has constant movement and dithering.
Constant shake and more shake when she reaches out to touch something or to pick it up in her hands.

I have noticed this getting worse over the years, with other things of concern making an appearance. Her vision is constantly blurred and body stiff and in pain and now she can no longer swallow food that needs to be masticated. If it is in large bites she almost chokes. Now she lives on food that is put into a cutter which makes it into a gruel like substance. I know not whether this all this is to the illness that the new doctor calls MS or if it is due to the falling sickness that you all share in common.

I wish to help in any way I can while Rhiannon is inside. She will be inside during the time from now until the new moon while she heals and rests. I know that she comes here to this place often, but saying little if nothing.

Please send me messages if I can help in any way,

Morgana

Hi Morgana,

Once you get settled in Rhiannons should see an Epileptologist (Dr. specializing in epilepsy) You can usually find one at an Epilepsy Center which are at many University Hospitals. Depending on what AED's Rhiannon in taking that is what could be causing her shaking/tremors and blurred vision.

If she is having a lot of pain there is a possibility that she has MS and this can lead to epilepsy. The reason why I know about this is because my aunt had MS and she had a lot of pain moving especially in cold weather or if there was a low pressure in the weather that would make things really bad for her. she was lucky she didn't have any seizures but I do know that people who have MS can get epilepsy. The best thing for her to do is start taking vitamin B12 1000 mcg. once a day. Cut out the caffeine and stay away from nutra sweet and cell phones because both of these can fire up more elelctrical activity in the brain which will trigger seizures and it's been proven that cell phones cause brain tumors as well as shrink the hippocampus of the brain causing memory loss. My Epileptologist to me to strictly stay away from them and never us them. Here's wishing you and the family the best of luck May God Bless all of You!

Sue