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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hi, @anna61, and welcome to Mayo Clinic Connect and this discussion on living with epilepsy. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
I'd like to introduce you to @joannern @nadinen @punkychica @jakedduck1 @valm and others in this discussion. Please also meet @hopeful33250.
That sounds very challenging living with intractable epilepsy with grand mal seizures for 16 years. Good to hear your experience at Mayo Clinic was so positive and that they discovered this small area of scar tissue in your right temporal lobe.
You said one of the options given to you was to participate in a clinical trial with laser ablation, and that you elected this and had your procedure last July. Will you share a bit more about what it was like for you with undergoing the laser ablation procedure you had within this trial? Were you nervous or feeling calm beforehand? How was your recovery from it?
@1634517678 - Thanks for all your perspective here on dealing with epilepsy, doctors, medication, and working and living a life with epilepsy.
You mentioned that at one point many years ago you did not want to take medications. Are you now taking medication for your epilepsy?
Replies to "Hi, @anna61, and welcome to Mayo Clinic Connect and this discussion on living with epilepsy. If..."
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Lisa,
Yes, using meds now.
Someone asked about Lamictal a few conversations back so I'll add to it:
Limictal XR (Extended Release) 500mg once 6 AM. I've been on for approx 16 years with good control of general nocturnal. Some other seizures(?), are two other, by 3 neurologists over 30 years, still present. First lasts 30 to 90 seconds. Experience is not being able to speak without slurring words, cannot read, or understand what anyone may be saying. I am aware it is taking place the entire time and safe to wash knives, glass dishes. The second is 75% same as the first but, cannot make eye contact with anyone, duration 3-10 minutes with a 30 min residual confusion. However, dizzy enough to force sitting down within 30 seconds, not safe to stand, mild headache after with urge to go to sleep. All neurologists have said they are not willing to call last 2 epilepsy, more likely mild concussion related, which there was 1-2 years prior to first nocturnal gm in my twenties. Both always a 30 second warning.
Lamictal,,, does it control the gm? No gms in the last 14 years, awake or sleep. The other 2, I may not see for 3 months, and then will come in series of 5 to 8, over 2 weeks, then gone again. I was offered Lamictal 200mg per day, in the manufacturers test group before available for use for 1 year. No seizures of any during that time. GMs never returned since start of Lamictal. The others gradually came back around month 14-16 from start. I tried lamictal look alike with no success. About 5% of users must be brand only.
Lamictal and Lamictal XR are very expensive, 30k ish per year if out of pocket. I get it through GSK for approx $35 per month. Is Lamictal only though GSK, not sure. GSK, (well? who really) dropped coverage of non XR 2 yrs ago. It's a lengthy process (documents and neurologists participation) to get it but, of course worth it. GSK 866-728-4368. If on just Lamictal (not XR) check with neurologist for a change to XR but... XR is usually done to smooth/lengthen the stomachs digestion/absorption if one thinks the drug blood level is too up-down with the non-XR.
Rick