Hey there. Thanks for the reply. Your the only one so far!
As far as the aura's go:
My case is that the left side of my body has less blood functioning due to my Epilepsy. It is hard to explain, it has been this way since my birth. I notice that often after I eat, my mouth (most of the time this happens every month), arm, hand (most of the time, this happens once a week) or leg will fall asleep.
And about 1 year ago, I was just about to go to sleep and I felt that my brain was going into a seizure. I was laying there, and within about 1 minute (this happened twice) my eyes were forced open, I felt NUMB all over, with an out of body like experience. I layed there and prayed REALLY hard, so I was able to think, just not move. And it went away. THANK GOD.
For me when I have seizures, I feel everything. Except for obviously when I am in the process of actually having one. But I feel it before and after. THIS IS THE WORST FEELING I HAVE EVER EXPERIENCED.
So, this is what happens to me on a normal basis.
Let me know if you have any more questions!
Saturday, October 11, we started a low dose (150 mg B.I.D.) of Trileptal with my twin brother. He was on Tegratol for about 6 years starting in the later 1990's. We switched because his DEXA Scan showed osteoporosis, we were about 37. No seizure med since Tegratol has worked nearly as effectively. I miss those days. Yeh, I know what your thinking ... why not restart? ... too many other events between then and now - we'd have to write a book. Were the events related to switching from Tegratol? Maybe. I wouldn't recommend embarking on the seizure med "switch, search and find" journey hastily. Get the DEXA Scan done yearly. If you have osteoporosis and/or are osteoporotic, then I recommend addressing that with a bone specialist. Why Trileptal? Our neurologist describes Trileptal as a "designer" version of Tegratol, meaning that it acts similarly to Tegratol but with lowered side effects, including reduced likelihood of osteoporosis. So, if you insist on a "seizure med switch, search and find journey", I'd recommend speaking with your neurologist about Trileptal. We ARE seeing some side effects though: reduced urine output; hiccups/belching.
Saturday, October 11, we started a low dose (150 mg B.I.D.) of Trileptal with my twin brother. He was on Tegratol for about 6 years starting in the later 1990's. We switched because his DEXA Scan showed osteoporosis, we were about 37. No seizure med since Tegratol has worked nearly as effectively. I miss those days. Yeh, I know what your thinking ... why not restart? ... too many other events between then and now - we'd have to write a book. Were the events related to switching from Tegratol? Maybe. I wouldn't recommend embarking on the seizure med "switch, search and find" journey hastily. Get the DEXA Scan done yearly. If you have osteoporosis and/or are osteoporotic, then I recommend addressing that with a bone specialist. Why Trileptal? Our neurologist describes Trileptal as a "designer" version of Tegratol, meaning that it acts similarly to Tegratol but with lowered side effects, including reduced likelihood of osteoporosis. So, if you insist on a "seizure med switch, search and find journey", I'd recommend speaking with your neurologist about Trileptal. We ARE seeing some side effects though: reduced urine output; hiccups/belching.
hey peter - just wanted to say hello and add my two cents into the conversation. when you mentioned trileptal, i immediately did some searching around about it. you're right, it is in the same family as tegretol, the latter being carbamazepine and trileptal oxcarbazepine. i have reached a level of comfort on tegretol, even knowing that it has probably caused the osteop. that i have now been diagnosed with. even tho' i've been taking it for over 20 years, my scan results are practically within the range of osteopenic and not osteoporotic, so since i don't have any of the other god-awful side effects that one can get from these meds other than an occasional breakthrough "aura", i'm going to stick with it and make a daily effort to take the calcium, the highest quality i can find, which for me at this time seems to be Ezorb, and take the D3 supplements, exercise, etc. Like you say, switching and searching, etc., can be worse in the long run. However, i will take your advice and the next time i see the doc for routine labs, etc., i will ask for an opinion about switching to trileptal and see what he says regarding side effects and bone density. thanks for your input!
