How do I use this site? Become a member of a group etc?

Posted by maggiek @maggiek, Jul 22, 2020

How do I add myself to a member / discussion group.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@maggiek
Hi
Looks like your a pro at maneuvering around Connect.
Looks like we both have had E for a long time. I’ve had it for 53 years 8 months. lamotrigine is usually an amazing medication. I assume the rash you are referring to is Steven Johnson’s syndrome which is indeed dangerous and can be deadly. However there is a DNA test that can be done to tell if you will or will not get it so you might want to talk to your doctor about that. I’ve never heard of being on such a low dose of Dilantin. I took five different medications for quite a while which accounted for 30 pills a day. I know of countless people on lamotrigine. It sounds to me like you’re having focal aware seizures which are the same thing as auras. lamotrigine Works for Focal & Tonic-Clonic seizures. If I were to switch to lamotrigine I wouldn’t be concerned about an allergy/rash although it does happen in about 8% of the cases and about 0.04% of people develop the very serious Steven Johnson syndrome. Dilantin can also cause Steven Johnson syndrome, Rashes are associated with many of the
anti-convulsants. You may want to discuss with your doctor testing possibilities to see if you’re going to be allergic. I was on a much higher dose of Dilantin but after about 25 years it became unstable and I had to change. Doctors also believe that is what caused my peripheral neuropathy. Personally I also think my Phenobarbital played a role in that as well. I changed to Carbitrol which is an extended release brand name of carbamazepine.
What type of aura symptoms do you have taste, smell, sight, Déjà vu, speaking problems or something else?
Has your doctor ordered a vitamin D level on you? Numerous seizure meds deplete vitamin D. I took 6000 units for a long time to get mine built back up now I’m down to just 2000. If you’ve never had this test ask your doctor to order it. Vitamin D is essential for your health and not just your bones.
The Stigma problem is better but it’s got a very long ways to go.
Jake

REPLY

@maggiek
I had all the mistakes that I could find corrected so the post above they should be more readable now. I’m sorry for all the mistakes. Hopefully it’s better now.
Jake

REPLY
Please sign in or register to post a reply.