"47 seizures since Dec.Probably not a lot some have 100s of them but it is a severe increase for me. I have TLEs. I gotta go to bed now!"
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Melissa Bryan
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Epilepsy & Stevens-Johnson Syndrome questions
Started this discussion. Last reply by Melissa Bryan Jan 12. 12 Replies 0 Likes
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"Hi, I have TLE, I'm on Onfi 40 mg, Vimpat, 400mg, Tegretol XR 600 mg, and Topamax, 400 mg. I am seeing a neuro at Duke currently to see if I am a candidate for surgery as I am like you I have lost count of the number of meds I have been…"
"My dr recently gave me this for panic attacks. How many milligrams did he give her. He told me to only take it at night. Also now that they are adjusting my meds he told me not to take it. I can barely keep my eyes…"
"I was on 10 am. and 20 p.m onfi. plus 400 vimpat and 600 tegretol xr no seizures for 4 weeks then dr increased me to 20 mg and 20 mg onfi and my seizures have been out of control. His goal is to put me back on Topamax and remove the…"
"Hello, How is the Onfi working for you and what dose are you on? I am on 40 mg. Never had meds from Canada so no answer there. Also, I've never heard of such pillows! Something to think about tho."
stephanie hines left a comment for Melissa Bryan"Thanks for the feed back. It's so helpful to listen and prepare for questions when the next dr. Appointment rolls around. Hope all is well with you. :)"
"btw....in the UK seizures are still called "fits". they mean no harm by the term. different countries different customs in language"
"Mary, don't give up. We have ups and downs daily. Today is a down day for me but I press on (like here and other sites) to encourage and lift me up. Hang in there with us. You will find encouragement!
Melissa"
"Hi Karee, my sentiments exactly.....Blessings to you!
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"Thanks for the info. I have not had any symptoms of SJS in over a year maybe 2. I am no longer taking lamictal which was the culprit. I have not had to take any antibiotics. I hope I don't either. I am on…"
"Hi Beckie, I too have TLE coming from both sides. I have no lesions or damage that has been found on an MRI. I am not feeling too well now after have a couple of seizures today and yesterday. I used to have a warning but not…"
Temporal Lobe Epilepsy
Hi this is a group for people who's main damage is in their temporal lobe. I want to be able to learn more from you and maybe help you cope with the effects of this injury. After 14 years Im still learning how this injury affects my life, as Im sure you are. See More
"Hi all has anyone ever had any withdrawl symptoms from stopping Topamax? The drs at Duke stopped the topamax at the first of Aug, i am on tegretol and vimpat but my seizures are not controlled. The dr is starting a drug i've never…"
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- At 4:21pm on February 9, 2013, stephanie hines said…
- Thanks for the feed back. It's so helpful to listen and prepare for questions when the next dr. Appointment rolls around. Hope all is well with you. :)
- At 3:36pm on November 10, 2012,
Maria Adelina Garcia said… Hi Melissa, I have olfactory auras sometimes at night. And other times awful tastes bothers me. But this happens at night only, when I am already in bed or sometimes it wakes me up.
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